tag:blogger.com,1999:blog-13945415777080140592024-03-14T00:20:20.845-07:00It's who I am.Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.comBlogger152125tag:blogger.com,1999:blog-1394541577708014059.post-31488134073026092412024-03-03T04:04:00.000-08:002024-03-03T04:21:09.631-08:0064. Our next chapter. Independence.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifVUk-iNbilTjlUbZe4FJFoG_DVBZn1y3mA6E22WTb-LO-yAktBQMOn_20jr3vw_3AFj6F3KTCMLzLboMpmWP6rL1309c-YB4vcyHbhHG7RDr4oG7KI0an-l0CIjV-cBqfQXAbf4Kvqpu4a5OWprynqLaxtpQ9AvdDK3_Q362j4khuQEnPRWrXIWa9Ns6m/s225/download%20(8).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifVUk-iNbilTjlUbZe4FJFoG_DVBZn1y3mA6E22WTb-LO-yAktBQMOn_20jr3vw_3AFj6F3KTCMLzLboMpmWP6rL1309c-YB4vcyHbhHG7RDr4oG7KI0an-l0CIjV-cBqfQXAbf4Kvqpu4a5OWprynqLaxtpQ9AvdDK3_Q362j4khuQEnPRWrXIWa9Ns6m/s1600/download%20(8).jpg" width="225" /></a></div><p>While I’ve talked a lot over the last 10 years about my
plans for Parker, I’m not sure everyone realized I was serious. Recently I have
a lot of people saying “You’re doing what?” and shocked by what is going on.
Trust me, that is not your fault. I’ve been sporadic in talking about it, life
is busy, and it always felt really far away. So while this will not answer
every question, it will give you many of the answers you are looking for.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">A little background in what led to this and why now. <o:p></o:p></p>
<p class="MsoNormal">A little bit into Parker’s diagnosis, I read an article about
two brothers in their mid – late 60s. Both have an intellectual disability.
They’ve spent their entire lives at home with their parents – who were now in
their 80s. (This was originally my plan for Parker. He was going to live with
me forever.) Life was great for them, they were happy, had their routine, and
were living great lives. And then, their parents died. Within a couple months
of each other. And the brother’s lives were turned upside down. <o:p></o:p></p>
<p class="MsoNormal">With no other siblings or family who could take on caring
for the men, they were placed into a group home. Despite being placed together,
the men fell apart. They became combative, they didn’t understand why their
parents were not there, why there were living in this place, and had no idea
who all of these people living there with them were.<o:p></o:p></p>
<p class="MsoNormal">It was a terrible situation that never did get better. It
only got worse. The article absolutely shook me. I had Scott read it and we
agreed that we would never put Parker into that situation. <o:p></o:p></p>
<p class="MsoNormal">My plan to keep Parker home with me forever was shattered. <o:p></o:p></p>
<p class="MsoNormal">As we talked a lot and agreed on a plan. While Scott doesn’t
remember the age 25, it was burned into my memory. That may be a mom thing, I
knew exactly how much time I had to fully embrace this plan and prepare myself
for what would – no doubt – be a life changing event.<o:p></o:p></p>
<p class="MsoNormal">Despite our divorce and me being Parker’s guardian, I couldn’t
break that promise to Scott. We chose 25 because we believed we would still be
here to help him with this transition and more importantly, we would still be
young enough to see him succeed in this new role without us and he would be
able to see that he was ok without us while we were still here.<o:p></o:p></p>
<p class="MsoNormal">That was most important to us. That we all would be able to
be here to help as needed and see him successfully independent, whatever that
may look like. Because honestly, at age 5 – we had no idea what that would be.<o:p></o:p></p>
<p class="MsoNormal">After we divorced, I knew I had to start putting more
thought into what we would do. I know that literally everyone felt the answer
would be to put Parker in a group home. And, don’t get me wrong, there are some
amazing group homes out there but this wasn’t going to work… mainly for me. <o:p></o:p></p>
<p class="MsoNormal">I lack trust in others. Especially when it comes to my kids.
Parker can’t tell me if something happens to him. I would see a behavior change
but I wouldn’t know if someone hurt him physically or sexually. And as much as
you don’t want to think that would happen – the reality is, it happens to our
loved ones every single day. They are easy targets, especially those with
communication challenges. That wasn’t going to be an option. I needed to figure
out something else. <o:p></o:p></p>
<p class="MsoNormal">And that’s when it hit me. It would be so much easier for me
and A to move out of the house than for Parker. This is the only place he’s
ever lived, he’s comfortable here. He’s safe. The neighbors would help look out
for him. I immediately knew this was the route I would go for him. Not to
mention, it gave me complete control over who would live and work with him.
I needed that.<o:p></o:p></p>
<p class="MsoNormal">The last several years since, I’ve been working bit by bit
to get the house ready, making as many updates as I could. And I’m not done, I
still have a deck to replace and a bathroom to refinish but I have to figure
out where I’m magically getting money from for those projects first. Everything
else is ready to go. And that’s a good thing because Parker turns 25 in May.<o:p></o:p></p>
<p class="MsoNormal">So, here is the plan – in a nutshell.<o:p></o:p></p>
<p class="MsoNormal">Mid May I am moving
out. We have our date, it is on Parker’s calendar there is no turning back.
While originally I was going to buy a house here in Canton, I’ve realized over
the past year – especially with A moving to the UK, that I couldn’t do that. <o:p></o:p></p>
<p class="MsoNormal">I’ve never lived alone. I’ve never been without my children.
I already struggle from really bad depression and anxiety. When I had to leave
A in the UK last October, I didn’t know how I was going to survive with A so
far away. I wasn’t going to let A know that because I wanted A to succeed. But
watching A’s taxi take them back to school while my taxi was waiting to take me
to the train for the airport was the hardest thing I’ve ever done. <o:p></o:p></p>
<p class="MsoNormal">The overwhelming pressure on my chest made it feel like I
could not breathe. It took me several weeks to reach a point where I could get
through the day without crying and learn how to breathe again. Some days I
still struggle. But A is so incredibly happy, it makes it hard to be sad. And
this is what I wanted for A – to find their place, to spread their wings and to
really, truly follow their dreams. And A is. I’m beyond proud.<o:p></o:p></p>
<p class="MsoNormal">I know that leaving Parker is going to be even harder. A has
always been very independent. Parker, however, depends on me for everything. He
needs me to get through the day. And, let’s be honest, I need him.<o:p></o:p></p>
<p class="MsoNormal">So, I knew if I bought a house here now, I would ruin
everything. I’d be like, “Hey Parker, do you want to come visit mom? Do you
want to stay the night? Do you want to stay the weekend? Do you want to stay
all week?” And eventually, he would be living there with me. Additionally, he
knows he can play me. He would have me over here all the time. ALL the time. Everything
I’ve worked and planned so hard on for the past several years would be ruined.
And it would be my fault.<o:p></o:p></p>
<p class="MsoNormal">I couldn’t do that.<o:p></o:p></p>
<p class="MsoNormal">I decided to reach out and ask my parents if I could stay
there. Just for 1 year. Long enough to put distance between Parker and I that I
can’t be here at the drop of a hat. That he has to do this on his own because
he can. So I don’t ruin this.<o:p></o:p></p>
<p class="MsoNormal">It puts an hour and a half between us. A full year of
distance that is not horribly far away yet far enough that I can’t ruin this
for him. One year. Then I’ll be back with a place of my own here, in a better
mindset, ready to take on that part of my new life.<o:p></o:p></p>
<p class="MsoNormal">Asking my parents if I could return home at 50, with 4 cats
and a dog, was rather entertaining but they know me well. They know I would
ruin this too if I stayed local. And my mom is incredibly aware of how fragile
my mental health is. The worry of my depression reaching a point that I cannot
get out of bed, can’t leave the house, and the depression consuming me is very
real. Very real.<o:p></o:p></p>
<p class="MsoNormal">My parents have the space. When they built their house, it
was built with a walk out basement. The basement was set up for my sister who
was still living at home at that time. So the entire basement was laid out to
be a space for her. Living room, dining area, extra space for an office, a huge
bedroom, and a full bathroom. I’m certain it is more square footage than a
single floor in my current home. Plus, they live on 22 acres so Willow has room
to run.<o:p></o:p></p>
<p class="MsoNormal">The best part, besides having my parents there to help me
through this emotionally, is that I get time with my parents. I left home at
18. The day after I graduated high school. I’ve always regretted leaving so
quickly. Time is something that slips by so fast. I can’t pass up this opportunity
for time with them as unfortunately, we are all continuing to age.<o:p></o:p></p>
<p class="MsoNormal">While there is space downstairs for A to be with me when
they are home for summer break, A wants to be upstairs with Grandma and Grandpa
in the spare room. A cannot wait to be there with access to the horses every
single day. We have plans for A to be with Parker at least 2 days a week, too.<o:p></o:p></p>
<p class="MsoNormal">That covers me and A. So how are we going to make this work
for Parker? I’m gonna tell you!<o:p></o:p></p>
<p class="MsoNormal">Parker will have two roommates. His best friend since they
were 3, William and his very good friend, Marriah. Each of them have a care
taker already, this will transfer over. A caretaker that is specific to each of
them.<o:p></o:p></p>
<p class="MsoNormal">They will rent the house from me. Their rent will cover
pretty much everything plus provide fun and emergency fund money. There will be
chores that they are expected to do, outings in the community because they need
to leave home now and then. William and Parker will continue to keep their
jobs. This is an independence that are all three ready for. <o:p></o:p></p>
<p class="MsoNormal">Everyone asks me about the pets. Especially knowing the
attachment Parker has with Willow and Sweetie. And while I originally had
planned on Willow staying, I can’t leave her here for many reasons. First, it
isn’t fair that Parker gets to keep his dog but William can’t bring his.
Second, Willow is extremely protective of Parker. Extremely. I do not want a
situation to occur where Parker is messing around with his friends and Willow
takes it wrong and jumps in to protect her boy. It is not a risk that I’m
willing to take. So, yes. I am taking ALL of our animals.<o:p></o:p></p>
<p class="MsoNormal">We want this house to feel like it belongs to all 3 of them,
not just that William and Marriah are staying at Parker’s house. We plan, after
the kids settle in, to get them a house pet or two. Whether it be kittens or a
dog is to be determined – by the kids. But they need a pet – or pets. They all
three are leaving animals behind to live here, it is important that they have
animals here with them,too.<o:p></o:p></p>
<p class="MsoNormal">I’ve given myself until the middle of April to get the house
cleaned out. 26 years of stuff to go through and purge and pack and move to my
parents. That will give the three families a month to paint and make the house
feel like it belongs to everyone. A fresh new look inside.<o:p></o:p></p>
<p class="MsoNormal">In Mid-May, I’ll move out and the roommates will move in. It
is rather surreal still.<o:p></o:p></p>
<p class="MsoNormal">Life has been challenging. Parker hates for me to clean and
doesn’t want me out of his sight which makes packing a challenge, too. The
house needs a good deep clean after my stuff is out. Right now, I’ve worked a
little on 2 rooms and a huge closet. I’ve made a bigger mess in the process. I’m
honestly overwhelmed by how much there is to do.<o:p></o:p></p>
<p class="MsoNormal">And I get stuck on the reality that I won’t have Parker by
my side 24/7 as I have for the past almost 25 years. We are always together. We
don’t separate often. It hit me hard tonight when I was tucking him into bed
that I only have 64 more nights of goodnight kisses and tucking him in. Only 64
more nights of hearing him yell that he loves me before falling asleep. 64 more
days of nonstop Paw Patrol and Blue’s Clues. 64 more days of starting our
mornings together at the dog park with Willow and our dog park friends. 64 more
days of keeping my emotions in check while I help him believe this is the best
thing ever. Because it will be. He’s ready. I will never be but he is. He is
going to soar.<o:p></o:p></p>
<p class="MsoNormal">And Scott, Jen, and I are all going to be around for many
years to see how successful he is living as independently as possible and
loving his new life.<o:p></o:p></p>
<p class="MsoNormal">It’s going to be good. One day my heart will see that, just
like it has with A. <o:p></o:p></p>
<p class="MsoNormal">No one really prepares you for being an empty nester. And
while I am sure it is hard for everyone, when you have a child that depends on
you daily for everything from help in the bathroom to being sure they get fed –
making that leap to separate is harder. I don’t know how to be me without
Parker. I don’t even know who I am without Parker. But, it is time I figure
that out.<o:p></o:p></p>
<p class="MsoNormal">I know, with time, we will all be ok. Better than ok, we
will be great. I will have the ability to travel to see A or Melissa or finally
make it to Alaska to see Sonja without figuring out 24/7 coverage for Parker
and worrying about how he will do with all of the change. I will have the
opportunity to have dinner with friends or shopping or just getting together. I’ll
have time to finish my book.<o:p></o:p></p>
<p class="MsoNormal">We can do this. If I’ve ever done anything hard to prove how
much I love my kids and how I would do anything for them… sending A off to the
UK and making arrangements for Parker to live with roommates surely has to
prove that. I’d like to believe that along the way, I have done something right
for them both to be such amazing adults.<o:p></o:p></p>
<p class="MsoNormal">We can do this… and we will.<o:p></o:p></p>
<p class="MsoNormal">Last thing, several have asked how they can help and I’ve
not really known how to answer that until this past week when I’ve felt my most
overwhelmed. There will be things the kids need to get started. After the other
parents and I meet and have a list, I’ll create an Amazon Wish list for them.
And if you’d like to help with the bathroom renovations or cover the costs of
the deck, I’m not going to turn that down either. <o:p></o:p></p>
<p class="MsoNormal">Most of all, when I’m living further away – and also when I’m
not, please keep an eye on Parker and his friends. Please remain in his life
and support him. Love him and remind him the community is here for him. I need
to see that, too. Because one day (hopefully many, many, many years away) I won’t
be here anymore and it would help significantly to know he’ll never be alone,
he will always have a community here for him who loves him.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-58446034312104315532024-01-14T21:52:00.000-08:002024-01-14T21:52:03.560-08:00Letting go<p>So many of my biggest life lessons have come from my
children. This one is no exception.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">It has been a wonderful month having A home from University.
There are many moments from this trip that will replay in my mind and in my
heart indefinitely. And so many reminders of how amazing, independent, and wise
beyond their years A is.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">It is often hard to know how much Parker feels or
understands about what is going on in our family. When A left, no matter how
much I tried – I knew that Parker didn’t fully understand how long A would be
gone. When it was time for A to come back, that kid was bursting with
excitement. I don’t think I’ve ever seen him so happy. It was amazing.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXLgmOO8Mc-zfD9fztPKQaqyM0CwvwWH1fh_ixSWU_uJaTXgm4RR4iB5c_feIjn2pH1ScZaT-2lw1KaggxCL6nci3MTZnlip6cD5g1Qv9m3016WpCrtbP7SvcNwIGz0ViWLuYqxEOOcRJfsTB8VrVdF2aNyKLy7MKSpSs-YK_7hXnk1opLYLmTMOhHl3To/s1920/409988871_10232840107373920_5379532166556386212_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXLgmOO8Mc-zfD9fztPKQaqyM0CwvwWH1fh_ixSWU_uJaTXgm4RR4iB5c_feIjn2pH1ScZaT-2lw1KaggxCL6nci3MTZnlip6cD5g1Qv9m3016WpCrtbP7SvcNwIGz0ViWLuYqxEOOcRJfsTB8VrVdF2aNyKLy7MKSpSs-YK_7hXnk1opLYLmTMOhHl3To/s320/409988871_10232840107373920_5379532166556386212_n.jpg" width="180" /></a></div><br /><p class="MsoNormal">He knows now that when A goes back, it will be for a while. I’m
not sure if he realizes it will be even longer than before as I cannot afford
to bring A back for spring break and then again at the start of summer break.
Bringing A home for Christmas was everyone’s gift from me – not the easiest
feat to pull off as a single mom. But, there are already plans in the making
for my mom and my sister, Dawn, to go visit A in the spring – so that helps
some for me – but I’m not sure it will help Parker.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Additionally, I’m trying to help him understand that not
only will it be even long before A comes back – but A won’t be coming back to
this house – or living with him again. <b><i>Tonight is our last night as a family of
3 in the only home they’ve ever known.</i></b> From now on, big changes will continue to
be made that will impact us all, I believe in positive ways but they will be
the hardest changes I’ve ever made.<o:p></o:p></p>
<p class="MsoNormal">I don’t know how much he understands but I think
about it all the time. We talk a lot about his friends moving in this spring
and mom moving out. We talk about how awesome it will be to have his friends
here and how they will do great things. I just have no way of knowing
how much of it he fully understands. He knows I’m moving and where I am moving
to. But does he really understand this is forever, especially when my first
move is temporary? I really don’t know.<o:p></o:p></p>
<p class="MsoNormal">Is he ready because this is the age I believed he would be
ready at for this change? I don’t know but I’ll never know if we don’t move
forward and find out. I believe he is ready. <o:p></o:p></p>
<p class="MsoNormal">I know he is more ready than I will ever be. He will always
be more ready than I will ever be. <o:p></o:p></p>
<p class="MsoNormal"><b><i>This is where life lessons from A during this trip home comes in this picture.</i></b><o:p></o:p></p>
<p class="MsoNormal">At night, I cover Parker up at least 4 times and while times
1 – 3 are super sweet, that 4<sup>th</sup> time drives me absolutely insane. A,
however, covers Parker up 1 time and then tells him if he uncovers himself
again he is on his own. And he’s fine with that. <o:p></o:p></p>
<p class="MsoNormal">If he wants his iPad plugged in he will ask me until I give
up and plug it in. He will ask A once, A won’t do it, and he will get up and do
it himself.<o:p></o:p></p>
<p class="MsoNormal"><b>That boy has me wrapped around his finger.</b><o:p></o:p></p>
<p class="MsoNormal"><b>A has him wrapped around theirs.</b><o:p></o:p></p>
<p class="MsoNormal">It was when they walked to the car together the other day,
it was when my heart melted and broke all at once.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTtTNz6meLcR5d_ungz-2PuJzvNn6tISRS9pP5L5o3EqkjmC26vP7iqI6gf0St65uS8XPevXouX9Dx2SANTGuDYWFut8E1iQjLrN18P0_McIApeHaWyY0ACA7D2J18X57NJ0N1eC6P3g8tL4F_fCfvFJw4DdRRSqNaUSoTJTS5aYS5J2UZsoOO-0IT1rQi/s1920/403791263_2195594080814808_4565146620454187429_n%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTtTNz6meLcR5d_ungz-2PuJzvNn6tISRS9pP5L5o3EqkjmC26vP7iqI6gf0St65uS8XPevXouX9Dx2SANTGuDYWFut8E1iQjLrN18P0_McIApeHaWyY0ACA7D2J18X57NJ0N1eC6P3g8tL4F_fCfvFJw4DdRRSqNaUSoTJTS5aYS5J2UZsoOO-0IT1rQi/s320/403791263_2195594080814808_4565146620454187429_n%20(1).jpg" width="180" /></a></div><br /><p class="MsoNormal"><br /></p>
<p class="MsoNormal">Parker is terrified of walking on the ice. He has had more
than one fall on the ice over the years and insists on holding our hand any time
he has to walk on it. As the biggest snowflakes fell the other day, A took
Parker’s hand and brought him to the car. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC81O2o056PwNhO-WW4OEmc40fHOWtatiWTZXE1bVSgcfP3om6w0eMINhP20IDKlcVOilbNg91YpH_C_NPvHAvwdQr0-BVHzrjB8ZrXNiLXGRUCbXZa8_RVfQSODnzFWu9T5HvZktg0X2DcN1iR5EhEgS0UwVTWuyx8IiK23JGD8ChAClq_K3b0uNGCZzM/s1920/404843089_1487171891845162_1426389404105068935_n%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC81O2o056PwNhO-WW4OEmc40fHOWtatiWTZXE1bVSgcfP3om6w0eMINhP20IDKlcVOilbNg91YpH_C_NPvHAvwdQr0-BVHzrjB8ZrXNiLXGRUCbXZa8_RVfQSODnzFWu9T5HvZktg0X2DcN1iR5EhEgS0UwVTWuyx8IiK23JGD8ChAClq_K3b0uNGCZzM/s320/404843089_1487171891845162_1426389404105068935_n%20(1).jpg" width="320" /></a></div><br /><p class="MsoNormal">When they got to the side, A let go
leaving Parker to finish his way to the door on his own.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">He reached out for A with a bit of panic. I called out for A
to rescue him. A took a couple of steps to him, saw he was fine, and turned to walk away forcing him to do this on his own. Something I do not do well at all.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSwyjZzQQi_uSyRksconyMYIUEjZe3RravFMbgieWQnv6NfP6GHnL0fHFf9l3_Hgf2KJCfLD4btMYU0fOwdVC679cFtB1FRuQ6iGPaMPywd_EBULRSmHF8TWZFhl5vDR-rVD0ttLOgMDhDXfN_GTFyUskoz7SLYTL25Eym030Sx9YROjd1eneBo4aD1AET/s1920/404321636_7101600423222525_7845249787273022072_n%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSwyjZzQQi_uSyRksconyMYIUEjZe3RravFMbgieWQnv6NfP6GHnL0fHFf9l3_Hgf2KJCfLD4btMYU0fOwdVC679cFtB1FRuQ6iGPaMPywd_EBULRSmHF8TWZFhl5vDR-rVD0ttLOgMDhDXfN_GTFyUskoz7SLYTL25Eym030Sx9YROjd1eneBo4aD1AET/s320/404321636_7101600423222525_7845249787273022072_n%20(1).jpg" width="320" /></a></div><br /><p class="MsoNormal">Of course, Parker was fine. Neither he nor I was fully convinced
of it until he was buckled in his seat belt but A knew he was fine. A would
never leave him to fall. I know this but watching his panic made me want A to
go back and hold his hand until he was sitting in the car. That is what I would
have done. I would not have let go until he was sitting in the car, buckled in,
ready for me to let go.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">But A knows that he doesn’t always need A’s hand. That he is
capable of so much more on his own than he will admit, or at least let me in
on. And because of that, A pushes him harder than I do. I’m thankful for that. <o:p></o:p></p>
<p class="MsoNormal">A has reminded me that while my kids will always need me,
they won’t always need their hands held. Even when I worry they may fall. They
are capable of doing hard things and so am I. I’ll need that reminder a lot
over the next few months. <o:p></o:p></p>
<p class="MsoNormal">As I watched back on the video of A and Parker walking to
the car, this moment stood out to me. I think it holds so many of my fears of
what Parker can’t express… and A’s reminder that they are both capable.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOVqouN58rktKhTNVoekgnwYLZpXixmSIxwR-HF5u8bcjPKpzs5yLnhSUd6bZHwhFr9SJRXnXhsbaGTZUHecekHj5L8SIKK0ZswVTK1EIREFEy0ZlyZx84UxSkHtyU0czKsl5Sk-bXLohErc5CB1YfOp_7kX0V0YOoEpFfbakwMV2b27nsxqCaP79M-aCX/s1421/404494169_392244810001811_2701171563860978954_n%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1421" height="486" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOVqouN58rktKhTNVoekgnwYLZpXixmSIxwR-HF5u8bcjPKpzs5yLnhSUd6bZHwhFr9SJRXnXhsbaGTZUHecekHj5L8SIKK0ZswVTK1EIREFEy0ZlyZx84UxSkHtyU0czKsl5Sk-bXLohErc5CB1YfOp_7kX0V0YOoEpFfbakwMV2b27nsxqCaP79M-aCX/w640-h486/404494169_392244810001811_2701171563860978954_n%20(1).jpg" width="640" /></a></div><br /><p></p>
<p class="MsoNormal"><o:p> </o:p>I see this and I worry about how Parker views what is happening
with A going back to school and with me moving out. <i>Does he see this as us
leaving him? As us walking away from him? Will he think that we are leaving him
because of our struggles? Will he think that I am or we are walking away because I/we don’t
love him?</i></p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Or will he see it as it is – that we are letting go because we
know he can do this. We’ve checked the path, and we know that he can stand and walk
without falling. Will he see that I am letting go so that he can grow, be
independent, and shine on his own because he can do that without me by his
side? Will he know that I’m doing this because I love him, not because I don’t
want to be with him – because I’d stay with him every day forever if I thought
it was best for him.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Or will he know, that I’m not looking back because I don’t
want him to see my tears, I don’t want him to know how scared I am of every
single step we are about to take because even the right steps can be really
hard and scary ones.<o:p></o:p></p>
<p class="MsoNormal">As I get ready to let A go again, I keep flashing back to
when I had to leave the UK without A last October. I knew the first few weeks
would be hard. I knew that there was the tiniest of a sliver of chances that A
would not be ready or not like being there. But I also knew I had to let go. I
had to let A chase this dream and deep in my heart, I knew A was absolutely
fine. And A was.<o:p></o:p></p>
<p class="MsoNormal">That helps with letting them go back tomorrow. I know A will continue to thrive at Essex. <o:p></o:p></p>
<p class="MsoNormal">Deep in my heart, I know Parker will also thrive in his new setting.<b> I’m never going to be ready.</b> I was never going to be ready to let
A go. But, I have to. Ready or not, I have to let A go back tomorrow, and come
spring, ready or not, I have to move out and let Parker soar on his own, too.<o:p></o:p></p>
<p class="MsoNormal">And we will all 3 be ok. We really will. Even on the days, it
doesn’t feel like it. If A has taught us anything, it is that we can do what
others think is impossible every single day - and we will.<o:p></o:p></p>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-39540720044424450072024-01-10T20:14:00.000-08:002024-01-10T20:14:05.481-08:00The beginning of the "lasts"<p class="MsoNormal">This would have been perfect for me to post on December 31
as we were ready to welcome in the New Year but… let’s be real. My life is not
perfect so why should the timing of this blog be?<o:p></o:p></p>
<p class="MsoNormal">I wanted one thing for this Christmas, well two but world
peace – unfortunately – didn’t seem realistic. Apparently, neither was the other
thing. <o:p></o:p></p>
<p class="MsoNormal">I wanted my house to be clean and filled with every Christmas
decoration that I owned. I wanted my Christmas comforter and pillows on my bed,
the Christmas pillows on the couches, the Christmas shower curtain and towels
up, every inch of garland, lights, and absolutely every sign and Christmas figurine/decoration
I own out on display. <o:p></o:p></p>
<p class="MsoNormal">When A returned home from the UK, I wanted that magical
Christmas home that smelled of freshly baked cookies (even though A would never
eat them) and to be so clean you were almost afraid to sit on the furniture.
Instead, A returned home to the same house of chaos that they left 2 ½ months
earlier. A home that is lived in. A home filled with love… and anxiety and
constant demands by Parker that I struggle more and more with each day to keep
up with on top of all of my other responsibilities.<o:p></o:p></p>
<p class="MsoNormal">The tree was up and waiting to be decorated so I allowed
myself to see that as a success. In my life, I really need to shoot for those
inchstones over milestones, they are much more realistic for me to reach.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWiJWUjIB2xIncbcDL3ukIAo4ppPMbaqVt-dD6JRdXgxLuZLxqI1BleDS6_FpibEVjBxjkdyRgMsskgyszhISuybxd6I7yJILq9AObeDXb6hGbstEEWxPz_s5C8lvmn3ozTounz6zberewI6Ivyy6Eup7Baf9M_zbu2CFHf_05j5onp9RVsF45Jut8FBIS/s2048/412946508_10232873294843586_1566422188754226234_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWiJWUjIB2xIncbcDL3ukIAo4ppPMbaqVt-dD6JRdXgxLuZLxqI1BleDS6_FpibEVjBxjkdyRgMsskgyszhISuybxd6I7yJILq9AObeDXb6hGbstEEWxPz_s5C8lvmn3ozTounz6zberewI6Ivyy6Eup7Baf9M_zbu2CFHf_05j5onp9RVsF45Jut8FBIS/s320/412946508_10232873294843586_1566422188754226234_n.jpg" width="240" /></a></div><br /><p class="MsoNormal">This month home with A has been incredibly bittersweet.
There are a million and one reasons why letting them go back to the UK on
Monday will be even harder than before. And one solid reason why I wanted this
Christmas and this month together to be perfect.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">This Christmas was our last Christmas together, in this
home, as a family. This New Year, the last “New Year” as a family of 3 in this
house. Everything we are doing until A leaves is a “last” for us. And that has
hit me extremely hard. <br />
<br />
No one is sick (thankfully) and yes, A will be back this summer. But, we won’t
be here. The home I brought my children home from the hospital to, the only
home they’ve known of ours will have a new purpose and new memories to be made. Parker will be here but I will be living elsewhere, as will A.<o:p></o:p></p>
<p class="MsoNormal">In the Spring, I’ll be moving out and Parker’s roommates
will be moving in. Mid-summer, A will return from school and live with me until
they start school again in October. Come spring, our lives will forever change.
The changes are good. They are necessary and people keep saying it shows that I’ve
done a great job raising my kids that they are both so independent – if I had realized the outcome of being a good parent was that your kids leave you
and become happy functional adults on their own – I maybe would not have tried
so hard to be a good parent because this doesn’t feel like a victory, it feels
like my heart is never going to recover from being this broken.<o:p></o:p></p>
<p class="MsoNormal">This was the last Christmas morning the three of us woke up together
in “our” home – where we all live. I do realize this is a pretty common thing
for most parents. No one warns you about it. You realize your kids will grow up
and, hopefully, be able to have independence but no one prepares you for how
hard that is. No one.<o:p></o:p></p>
<p class="MsoNormal">I was so focused on preparing them to be successful, independent
adults while still enjoying every minute, that I didn’t really realize that the
next step for them required them to take it without me. Well, I “knew” it
wouldn’t include me – that was the goal. I didn’t realize how much it would
hurt to know that all of my purpose in life would be moving on and I would be left,
lost, trying to find my purpose once again.<o:p></o:p></p>
<p class="MsoNormal">To complicate my feelings even more, Parker has realized
that when A leaves to go back to University, that it means A is leaving for a
long time. He has missed A so much and that has shown ever since A walked
through the airport gates to his hugs. His behavior has become more challenging
as we lead up to Monday. The first time A left, he didn’t fully grasp that it
meant A was going to be gone for as long as they were. This next time, not only
is A going to be away longer but when they come back home – A won’t be coming
here to live with Parker. Despite our many talks about it, I’m not sure he
fully understands that A won’t ever be living with him again. <o:p></o:p></p>
<p class="MsoNormal">And his behavior alone speaks volumes to how he feels about
that. He can’t express in words how he feels or what he is thinking, it comes
out in his behaviors. And right now, any time A (or “Cutie” as Parker calls A)
is not home with him – he is struggling and asking when A will be back. <o:p></o:p></p>
<p class="MsoNormal">I know we will find our routine again after is is settled
back into school but I think when A comes home at the end of June, it will be
very confusing – even with Parker and his roommates established by then, for
Parker to understand why A isn’t coming to live with him anymore. <o:p></o:p></p>
<p class="MsoNormal">It is hard to come to the end of a chapter, or maybe this is
more like the end of a really good book where the end leaves you guessing, and
you hate not knowing how it actually ended. I guess, the good thing is – I get
to keep writing the next series in the book. It will definitely be a book of
new beginnings, ongoing challenges, and finding purpose – not just for me but
for all 3 of us. Just… on our own, in new independent but overlapping journeys.<o:p></o:p></p>
<p class="MsoNormal">As much as I’m not ready to put down this book, I could not
be more proud of each page that we’ve written. In this home, 2 amazing kids
have been raised. They’ve overcome so many challenges, had many laughs and
adventures with friends, and filled it with enough pet fur to create our own
fur monster. We’ve had a very good run the 3 of us in our little home. It
really is time for this home to have its new purpose, to help Parker continue
to grow his independence with the help of friends and caretakers and show the
world that he has what it takes to do this. <o:p></o:p></p>
<p class="MsoNormal">They will make new memories, new traditions, and fill it with
love and laughs. Together they will overcome challenges and celebrate triumphs
as they grow older together. This is, after all, what I hoped and wished for –
what I’ve worked so hard on for all of these years. For Parker to achieve this
level of independence. We’ve almost reached that finish line.<o:p></o:p></p>
<p class="MsoNormal">And A… well, I think I’ve always known that A was going to
spread those wings far. During our first trip to the UK and Europe, it was so
easy to see that A belonged there. The confidence and happiness that radiated
out of that kid was like something you see in the movies. And with their first
trimester completed, accommodations already confirmed for next school year, and
that incredible excitement to return to the UK and University – I know that
what we saw wasn’t a fluke or vacation feelings, it was real. A has found the University
that will help them change the world, while also finding themself, their
independence, and making me the proudest mom on this earth.<o:p></o:p></p>
<p class="MsoNormal">Of course, if A said they wanted to come back home and live
with me forever, I wouldn’t say no to that either <span style="font-family: "Segoe UI Emoji",sans-serif; mso-ascii-font-family: Aptos; mso-ascii-theme-font: minor-latin; mso-char-type: symbol-ext; mso-hansi-font-family: Aptos; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: "Segoe UI Emoji";">😉</span>
A won’t but A will help me see this amazing world and rack up those travel miles
in this next phase which is going to be pretty amazing.<o:p></o:p></p>
<p class="MsoNormal">While Christmas didn’t vomit its decorations all over my
house as I had hoped, the last month has been pretty amazing. It’s been extremely emotional
and I know the next few weeks will be as well but, truly, in good ways. We’ve
been able to see into Parker’s mind a bit to know how very much he loves A. We’ve
always known they’ve been close and that they love each other as siblings do –
but that connection is far deeper than many may have realized. The house didn’t
have to be perfect for our “last” memories to be made here together, it just
needed the 3 of us.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-84159114528827525112023-03-13T22:07:00.001-07:002023-03-13T22:07:34.735-07:00Change is a comin'.<p> You know what we haven’t had in a while? A good cry, I’ve
been keeping them to myself and it feels like time to share them. It’s good for
us, right? Go get some Kleenex because at some point while reading this – you are
going to want one.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3j0RgOIJZsUbkyo-esxtrS9xLhDNbgVmV4tTA-nRWphijDdNHQ37TuEdVV0cPMqxpU1Vd8DrB-bP_HsRXbjgRee01dPyvtv7VuCJmi8yISRUsRJA7wJVfE4P2nNaRTAmdNhqpzIBw2dyhgVgIwS_EY0Ck171XScpl6kPxgIQCdIuP50hfSSkNBd7uGA/s2000/6628629-change-quotes1.webp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="2000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3j0RgOIJZsUbkyo-esxtrS9xLhDNbgVmV4tTA-nRWphijDdNHQ37TuEdVV0cPMqxpU1Vd8DrB-bP_HsRXbjgRee01dPyvtv7VuCJmi8yISRUsRJA7wJVfE4P2nNaRTAmdNhqpzIBw2dyhgVgIwS_EY0Ck171XScpl6kPxgIQCdIuP50hfSSkNBd7uGA/s320/6628629-change-quotes1.webp" width="320" /></a></div><br /><p>We have some major life transitions happening soon in our
little family of three. And to add salt to the transition wound, I have no choice
but to accept that my parents are aging as fast as my children – which is
completely unfair.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">In my entire life, I’ve never been alone. I lived at home,
then with Scott, then with Scott and our children, then with just our children.
Never just with me. When Covid hit, without making it public at the time Scott,
Jen, and I agreed that Parker and A would stay solely with me. We wouldn’t
leave and we didn’t. We isolated ourselves so tightly in a bubble only letting
people in through video calls at first, then outside visits, and eventually returning
to our post covid routine. But those first 6 months, it was just the three of
us, with the full knowledge that if I messed up, all three of our lives were on
the line. Nothing throws you into compliance like the words “this will kill
your child.”<o:p></o:p></p>
<p class="MsoNormal">It was a while longer before we started overnight visits
with their dad, again. When we did, the kids being away had become much harder
on me. I solved that by spending that time, as often as I could, with my
parents.<o:p></o:p></p>
<p class="MsoNormal">Then, Willow had her leg injury, which stopped those trips
as she wasn’t (and still isn’t) ready to run without further causing injury - post-surgery
now. It was around the time of Willow’s surgery that A’s first college
acceptance letter came. One followed by another… and another… and another. All
four schools that A applied to for all 5 BA programs accepted A and made offers.
It was an incredibly exciting time, as long as A was there to share their
excitement with me. <o:p></o:p></p>
<p class="MsoNormal">But, when they’d leave to go to their dad’s, it would hit
me. My youngest, my baby, will be moving across the ocean to another country.
And it hit hard. A and I have always been incredibly close and there was no way
I was going to stop A from chasing this dream and moving to a place where I
know they will thrive, not even my shattering heart would get me to stop
supporting this dream of theirs.<o:p></o:p></p>
<p class="MsoNormal">Every emotion hits when I let my mind go there. While the responsibility
of raising Parker is mine, the quiet one on one time with A at the end of each
day when they finally come out of their room is a time I cherish. It is my time
to regroup. To laugh, to talk about current events, to share dreams, and frustrations, and, of course, for me to glance over A’s homework once in a
while to reassure them that what they’ve written was as good as they hoped. It
always is. A has an amazing gift for writing, especially poetry. A is there when I need an extra hand and
truly gets me through each day.<o:p></o:p></p>
<p class="MsoNormal">I cannot remember the last time I saw A this excited about
something. I’m not worried, I know this is where A is meant to be. I know they
will get to truly be themself, spread their wings, and fly – and, make this
world a better place. I have every confidence this is the right move for A, even
though I wish they just wanted to stay with me forever <span style="font-family: "Segoe UI Emoji",sans-serif; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol-ext; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: "Segoe UI Emoji";">😊</span><o:p></o:p></p>
<p class="MsoNormal">I’ve been mentally preparing myself for A’s departure. For
every reason I am sad, I can give you more reasons why I am happy, including
that it means I get to spend more time in the UK and Europe, too! Traveling is
so good for my soul. As much as it will be hard on me not to have A here, I can
talk with A pretty much anytime. I can even call daily, even though I doubt
that they would answer me that often! So I’ve been settling into the reality
that A has this amazing adventure coming soon and I am filled, again, with excitement
for them.<o:p></o:p></p>
<p class="MsoNormal">Then, the other night, while tucking Parker into bed I reminded
him that he is old enough to tuck his own covers in, especially his feet which
he uncovers repeatedly throughout the night. I said, “it’s time for you to do
this. You are 23.” He quickly interrupted me with “No, I’m 24.” I was like, “Wait,
what? No! I am sure you are 23!” He argued with me until I gave up and left. I
came upstairs where A and I were double-checking our math to be sure he was
actually 23 right now like I thought. <o:p></o:p></p>
<p class="MsoNormal">The sheer panic that hit me that he may have been 24 with
his 25<sup>th</sup> birthday coming a year before I planned in my head took all
of the wind from me. I am not ready, I can’t be ready in just a couple of
months, there is so much to do. So, when we confirmed that *I* was right and he
is only 23 still, I breathed a sigh of relief knowing my plan was still on track.
<o:p></o:p></p>
<p class="MsoNormal">While my main focus is currently on A, scholarships,
financial aid, student visas, and everything that comes with studying abroad
internationally – the back of my mind keeps returning to … “7 months after A
leaves for the UK, I’ll be starting the transition of moving me out of this
house and moving roommates in.” And while I’ve been taking the “I’ll figure out
where I’ll live when the time comes” approach, I knew I needed to start figuring out those options as everything takes time – and I need to prepare
Parker for that as much as his roommates coming in. <o:p></o:p></p>
<p class="MsoNormal">As I started talking more about Parker living independently
(with roommates and caretakers), I mentioned to my mom that I knew I’d have to
give him a week or so to settle in before I came to visit. My mom quickly said,
“Two weeks.” When she worked as a nurse for a CILA, they recommended two weeks.
That was completely fine during the conversation. I would wait two weeks and then I
would come to visit him weekly thereafter. <o:p></o:p></p>
<p class="MsoNormal">I was fine. I was slightly panicking but, was fine. I was
so fine that I left my best friend a 20-minute voice message at 2 (or 3?) a.m. expressing all of my fears through my sobbing tears. <o:p></o:p></p>
<p class="MsoNormal">One of those fears is, “What will happen to me?” How do I do
this? How do I survive this?<o:p></o:p></p>
<p class="MsoNormal">Parents become “empty nesters” all of the time. Some parents
even look forward to it. Those parents are not still tucking their 23-year-old
into bed every night. They are not giving them a goodnight kiss on the cheek,
turning off the light, and waiting for that little voice to say “I love you.” before
leaving the room knowing you’ll be back at least 3 more times to adjust covers
before you, yourself go to bed and then on really good nights – you get to
sleep all the way through but more realistically you are up at least once to put
the covers back on the bed. Those parents are not still assisting their adult
child in the bathroom, helping with
self-care skills, being sure all of the shampoo is out of their hair and those
stinky armpits are washed during showers. They are most likely not still
financially responsible for every meal, piece of clothing, toy, or activity
their 23-year-old is doing. They are not still helping put on socks or having “seat
belt races” when you get into the car. If their adult child is living at home,
odds are the child is able to help with chores, and not everything falls on the
one single parent. Those people are possibly annoyed that their kid is out partying,
staying out all night, working, or doing other things that I have no concept of
because our life doesn’t work that way. It never has.<o:p></o:p></p>
<p class="MsoNormal">Most parents aren’t giving up their home to make it a safe
home for their child and others to live and be cared for while finding a new
living situation for themselves.<o:p></o:p></p>
<p class="MsoNormal">It is the 24/7 caregiving for over 23 years that makes
letting go even harder. When I tucked Parker into bed last night after he had
spent 2 nights at his dad’s house, I said, “I get to give you two extra kisses
tonight! One for each night you were away!” Much to his giggling protest, he
let me give him 3 kisses on the cheek before wiping them off and telling me he
hates kisses. <o:p></o:p></p>
<p class="MsoNormal">That was the moment it hit me. When we make this move, I won’t
be tucking him into bed anymore – except when he visits me. There will be no
more nighttime routine, no more nighttime kisses on the cheek, no more
waiting for that sweet voice to say “I love you.” back to me. There will be no
making up kisses for nights we were apart, no re-covering of his feet, no more
of him farting to try to get me to leave his room faster. No more yelling for a
drink when he is done watching COPS, no more final tuck-in before drifting off
to sleep, no more yelling for mom in the middle of the night, or first thing in
the morning when he needs help in the bathroom.<o:p></o:p></p>
<p class="MsoNormal">It will be silent. No one will be waiting for me to tuck
them into bed and kiss them on the cheek goodnight.<o:p></o:p></p>
<p class="MsoNormal">No one will spend their day yelling at me, which – at the
moment – is Parker’s favorite thing to do. No one else will be holding my
phone, telling me where my keys are, or making me match up our schedules with
what is on TV at the same time. No more making daily lists of what we will be
doing from the time we wake up until the time we go back to sleep. It will all
fall on someone else soon.<o:p></o:p></p>
<p class="MsoNormal">This brings me to the other point I brought up with Melissa… how will I survive this? How do I go from the 24/7 caretaker to one kid
being in the UK and the other living with friends while I adjust to a new
space? How am I, the person who struggles with anxiety and depression going to
cope? How am I going to handle the
deafening silence that replaces the constant noise of today? I know I am not
alone in worrying about how all of this will impact my mental health and how I
will make it through. How do I decide where to go next? And how do I know
what the right answer is?<br />
<br />
Melissa replied with a 12-minute voice message with reassurance and advice
only a best friend can give to calm your soul like M does mine. But
perhaps the most important thing she said to me was that “we need to give up
on the idea that there is a “right” answer to things and accept that “right”
answer may not even exist.” And, as always, she is correct. <o:p></o:p></p>
<p class="MsoNormal">I’m not the first person who has raised a child with an
intellectual disability and then transitioned them to different living
arrangements. It happens all of the time, every single day. What I’ve seen and
learned from others who have gone before me and most likely the reason I am
forcing myself to stay on this timeline, is because their kids have thrived in
the new settings. I have absolute faith that Parker will thrive in this new
setting, as will his housemates. Who wouldn’t want to live with their best
friends? It’s a pretty nice setup!<o:p></o:p></p>
<p class="MsoNormal">It’s the impact on the parents that is rarely talked about.
Especially when it comes to single parents who have been the primary caretaker.
I am sure we will need to increase my medications drastically – to the level of
a horse tranquilizer to get me through each day until I can become at peace
with the new lives we are living. Unlike A, I can’t call Parker whenever. I can
but the conversation will be extremely limited – which is why this house is
fully equipped with cameras and I don’t feel the need to do that to A’s dorm <span style="font-family: "Segoe UI Emoji",sans-serif; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol-ext; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: "Segoe UI Emoji";">😊</span>
I know I can check on him anytime. And I will only allow people I trust with my
life to be caretakers with him. But, it will be the biggest change I’ve made in
my life.<o:p></o:p></p>
<p class="MsoNormal">The options I’m considering for myself are reflective of
many things, and my mental health is top of that list. I don’t do well with putting
myself first and I don’t intend to immediately after moving. I was meant to
take care of others and I will need to continue to do so to make this
transition, even if for the short term until I can see that I’ll be ok with the
quiet.<o:p></o:p></p>
<p class="MsoNormal">And, I’ll do my best not to add to my domesticated zoo for
company for a few years while I am at it.<o:p></o:p></p>
<p class="MsoNormal">This next year and a half are going to be challenging for
me. I’m incredibly thankful for a job that I love that can distract me and
offer plenty to keep me busy and occupied. I’m thankful for family and friends
who are happy to be in my company, mostly… usually, anyway. And I’m going to
need them.<o:p></o:p></p>
<p class="MsoNormal">For the first time, I’m going to likely need more support
than I am able to give as I learn to live with an empty nest, putting one foot
in front of the other to get through each day. I will lie through my teeth each
time someone asks how I’m doing as I say “I’m good/fine/or ok” and hope that I can
quickly exit the conversation before I start to cry. I will likely seclude
myself for a bit while I figure out who I am when I am not Parker and A’s mom
24/7 and figure out who Holly really is on her own.<o:p></o:p></p>
<p class="MsoNormal">I’ll figure it out. I’ll find the Holly that is hiding
behind the mom/caretaker façade and she will be amazing, too. And I’m pretty
sure that she will spend a lot of time writing and traveling, often found in
Italy enjoying gelato and the best pizza in the world when she isn’t busy at
work.<o:p></o:p></p>
<p class="MsoNormal">Part of me never thought we would make it here. Yet here we
are and part of me has realized this is something I’ll never truly be ready for
but understand the importance of doing it. It is what is best for Parker, just
like going to the UK is best for A. And as a parent, doing what is best for my
kids has always been the priority. In doing that, I’ve raised two pretty
amazing young adults that I am incredibly proud of.<o:p></o:p></p>
<p class="MsoNormal">Now, if someone could please tell my parents to stop aging because
I am not ok with that at all and it is a whole additional layer of grief that I
am struggling through.<o:p></o:p></p>
<p class="MsoNormal">Sometimes it seems like everything in life happens all at
once – that is where I am.<o:p></o:p></p>
<p class="MsoNormal">My parents are aging. <br />
My children are growing up. <o:p></o:p></p>
<p class="MsoNormal">Somewhere in the middle, I guess I should accept that I am
aging, too. <o:p></o:p></p>
<p class="MsoNormal">It just all happened so fast. <o:p></o:p></p>
<p class="MsoNormal">As sure as I am that I am not ready, I can’t think of a lot
in life that I have ever actually been ready for. I’ll do my best to do as I
always have and lay a new path where there hasn’t been one before, hope that it
intersects with other paths that have been well worn before I reached them that
I’m able to regroup and learn from, and looking for beautiful inchstones along
the way.<o:p></o:p></p>
<p class="MsoNormal">A new journey awaits… and it is coming soon.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgopRgWVALqUQGxK9wU7fVf2PqPyAO45a3ShOns_9rnlcV6Aeiepm3kATvFGmigvMAxFr_M9za7xDPCdfOxfrIWnIiFVGheQ_Ml3z49uqbFBMdP4StPBu2KfSzozhTSuGhP-IHkPtlYRBzhcEyPsCQpqb3zf2jB5tDKgR0-rcfv1uDh_p_WQowRHFps2A/s1105/56f51521f7d57a8060c450de8c4cd273.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1105" data-original-width="736" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgopRgWVALqUQGxK9wU7fVf2PqPyAO45a3ShOns_9rnlcV6Aeiepm3kATvFGmigvMAxFr_M9za7xDPCdfOxfrIWnIiFVGheQ_Ml3z49uqbFBMdP4StPBu2KfSzozhTSuGhP-IHkPtlYRBzhcEyPsCQpqb3zf2jB5tDKgR0-rcfv1uDh_p_WQowRHFps2A/s320/56f51521f7d57a8060c450de8c4cd273.jpg" width="213" /></a></div><br /><p class="MsoNormal"><br /></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-20424507695219803592022-09-08T08:40:00.002-07:002022-09-08T20:49:40.107-07:00The Dentist, part two. 23 years in the making.<p class="MsoNormal">A couple of weeks ago, I shared on Facebook that Parker had
a successful trip to the dentist for x-rays. I <a href="https://itswhoiam-fx.blogspot.com/">plopped it into a blog</a> to make
it easier to read if you’d like to go back and read those details. <o:p></o:p></p>
<p class="MsoNormal">If you’d rather not but need to catch up, Parker had been
complaining that his teeth hurt. We had prepared ourselves mentally that this
would take sedation through general anesthesia in the hospital setting as it has in the past. To my
surprise, he did – for the first time ever – the bite-wing x-rays and had an
awesome visit (with only the tiniest hint of a possible cavity starting that
the dentist would just like to watch for now.) We set up cleaning for today –
and that’s where this starts.<o:p></o:p></p>
<p class="MsoNormal"><b><i>Some history.</i></b><o:p></o:p></p>
<p class="MsoNormal">Taking Parker to the dentist has always ended up with
someone (or multiple people) getting bit, hit, headbutted, or kicked. He’s been
papoose strapped (literally a straight jacket) which traumatized him and me,
held down by multiple people, and still – no one could successfully look in his
mouth. He has a very sensitive gag reflex. The only way Parker ever had
successful dental work was by complete sedation in the hospital. During that
time the dentist got a full set of x-rays, filled a cavity or two, and sealed
his teeth. Parker was young, this was easily 10 – 13 years ago.<o:p></o:p></p>
<p class="MsoNormal">We knew after multiple failed attempts that if anything went
wrong with Parker’s teeth it would take sedation in a hospital setting again.
While he did awesome with the x-rays a couple of weeks ago, the plan for today
was a cleaning.<o:p></o:p></p>
<p class="MsoNormal"><b><i>A cleaning.</i></b><o:p></o:p></p>
<p class="MsoNormal">Scraping his teeth with those pointy metal things, picking
off build-up and tarter, is a completely unpleasant experience for most people –
especially someone who hasn’t had their teeth cleaned in over a decade. <o:p></o:p></p>
<p class="MsoNormal">Parker was excited and had been showing everyone how big he
opened his mouth at the previous visit and Rylee told him that she loves
getting her teeth cleaned, which helped, too. He was ready for this appointment
and talked about it daily. He clearly had no clue what he was in for. <o:p></o:p></p>
<p class="MsoNormal">Amber, our hygienist, had set aside <b>2 hours</b> for Parker’s
cleaning. The plan was she would do what she could, take lots of breaks, and we’d
just go with whatever was working for Parker.<o:p></o:p></p>
<p class="MsoNormal">Parker happily went into the appointment, jumped into the
chair, and was ready to get started. Amber gave him some glasses to put on to
protect his eyes from the bright light. Following my advice from the last
visit, she put the heavy apron that is used during x-rays onto him for the
appointment.<o:p></o:p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdsoahlCfGMCBg5-QKXdA2niR4Zh-cq_bNlZ5Qboq1Ek3iwW_qIC-pZUV4dkHsn69m-jqitcagyEuHqY7UTbZIufK-h_DQbYdRbtYeX9TcTnkMaRMBqJ-0AvzhlasJ9d0_SD-9e5JcbPIhAKkTJ5XAC5SQqUdgntd46MKY0PVB005-_VjzU3zY3k1b6Q/s1920/305412101_1443080736203768_1801245696721967960_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdsoahlCfGMCBg5-QKXdA2niR4Zh-cq_bNlZ5Qboq1Ek3iwW_qIC-pZUV4dkHsn69m-jqitcagyEuHqY7UTbZIufK-h_DQbYdRbtYeX9TcTnkMaRMBqJ-0AvzhlasJ9d0_SD-9e5JcbPIhAKkTJ5XAC5SQqUdgntd46MKY0PVB005-_VjzU3zY3k1b6Q/s320/305412101_1443080736203768_1801245696721967960_n.jpg" width="180" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ready to rock this appointment!</td></tr></tbody></table><br /><p class="MsoNormal">At this point, I was praying for the best and fully
anticipating the worst.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Amber started by lightly brushing Parker’s teeth. This is
hard for him. It’s a sensory issue but he did awesomely. She talked him through
how to use the suction and we were off to a great start. (I was so anxious each time they did the suction I didn't get a picture of that, even though he did awesome as she talked him through it!)<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzCixAlIxkwQy696klbx3s68FsncPfQNAgIr-fhO0gxOvonKAGSNLbFCZM4tA-IwTOTnjP_qwtHkw3Gim-tiw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><p class="MsoNormal">Then came out those metal scraper things. I cringed just
seeing them. Amber talked to Parker as she got started. Parker did well but was
struggling to keep his mouth open for so long so she showed him a bite guard
and he gave it a try. It worked really well and a lot of progress was made. I took
some pictures and short videos and was just beaming under my mask, smiling ear
to ear so much my mouth was hurting.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwXNcTkOZJ4fHdMoqL9aou5Fw4bjm44WicnE212EpzBUi2cqAbkQ8KsjyXVem264XphqJvqsQ82YEtUx5cnXw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><p class="MsoNormal"><br /></p><p class="MsoNormal"><o:p></o:p></p>
<h3 style="text-align: left;"><b>WHO WAS THIS KID?!?</b></h3><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">No fidgeting. No complaining. No trying to leave. No trying to bite. It was like I was in the wrong room!</p><p class="MsoNormal">Amber would ask him how he was doing and he would flash her
a thumbs up or reply “fine” or “good”. I just stared, taking it all in while
completely in shock but also so incredibly proud.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwmQu--EcGo8RjAQBVGbA22OG-O4WSDBP4LjtEMdWZESdwu0BTeCEGPWzjCwbvgyeBzORsD6bxnxM7tN8HO1Q' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><p class="MsoNormal">At one point, Amber needed to remove the bite guard, when
she went to put it back in it wasn’t placed quite right and he threw up. I leaped
into action to catch what I could and keep as much as I could on his blue
dental bib. I had Amber hand me paper towels as I cleaned him and around him
up. I thought for sure that would be the end of our good dental run. However,
after he was all cleaned up Parker piped up and said, “I ate too many goldfish!”
and was ready to get back to the cleaning.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Over an hour and a half, slowly, while talking to Parker
(and me) Amber managed to clean every single tooth. It was amazing. She was
amazing. He was amazing. I’m still in shock. <o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM6R4_bCEyK_RfnyIdThnt_jjnekPY6ZAkFdVaxepsiEJUV1srEuIS8hf9k6f1kqVFPFDmZB-TRi8YEMeoxH1YSQvdwhQwSlYx-QUh3Ca8VeYPnocB7mYmUlpQRjWJR2-Oj40q9spUDetp2_npDrMqmhivGfpgmtJ6nj7Xl704WBuBn7k1TAhmVyPi3A/s1920/305271332_488686689395784_2091567846893430792_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM6R4_bCEyK_RfnyIdThnt_jjnekPY6ZAkFdVaxepsiEJUV1srEuIS8hf9k6f1kqVFPFDmZB-TRi8YEMeoxH1YSQvdwhQwSlYx-QUh3Ca8VeYPnocB7mYmUlpQRjWJR2-Oj40q9spUDetp2_npDrMqmhivGfpgmtJ6nj7Xl704WBuBn7k1TAhmVyPi3A/s320/305271332_488686689395784_2091567846893430792_n.jpg" width="180" /></a></div><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKnYIChi-OWm-S2yY41qlbKRsYXj0tLxYGS6ITz31dHCSaEpgQn27roq29mIojzunJF5wnY2fxfM5AQqVk4bJ6-OV8m3pkwZK_KRdLN7U7l65HK6aATOxPc_Gz06h2kRR25b6XL0GXxb3XFYovVE7Vhz-oagzISDcX5Wp6vh0hC6Y8LkyGdvE_hdQH1Q/s1920/305279898_825204458835294_119858956910295020_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKnYIChi-OWm-S2yY41qlbKRsYXj0tLxYGS6ITz31dHCSaEpgQn27roq29mIojzunJF5wnY2fxfM5AQqVk4bJ6-OV8m3pkwZK_KRdLN7U7l65HK6aATOxPc_Gz06h2kRR25b6XL0GXxb3XFYovVE7Vhz-oagzISDcX5Wp6vh0hC6Y8LkyGdvE_hdQH1Q/s320/305279898_825204458835294_119858956910295020_n.jpg" width="180" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Thumbs Up!</td></tr></tbody></table><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSFIfCCpRTdag75Mdcp7fwflXF2zRV2cle6PjNWh889s22gfvdklbJDyuoSFRdIag1bJqVQWJNzmTYHwsK2I7lf6DhnQdT8e-tFIvYYePuyvfPl3nc5SbRVurLDa3fHMkiHLpqgDAvtrnpvepFMjxyxjNRs_xUUFcY6PJcH3KIPRnt2a7gNJdTWmgxCQ/s1920/305311906_452834433571863_8170247200417821389_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSFIfCCpRTdag75Mdcp7fwflXF2zRV2cle6PjNWh889s22gfvdklbJDyuoSFRdIag1bJqVQWJNzmTYHwsK2I7lf6DhnQdT8e-tFIvYYePuyvfPl3nc5SbRVurLDa3fHMkiHLpqgDAvtrnpvepFMjxyxjNRs_xUUFcY6PJcH3KIPRnt2a7gNJdTWmgxCQ/s320/305311906_452834433571863_8170247200417821389_n.jpg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkcAETvqzVQXgbMTSzSWdjVrvofMKJOgmYxC2wRKkn2onxFKcX-eX3rwsbur4GL4hIEDqyB6l89bLatR-gQiuNV7BuTY6VE-CwHrRhw-GpqrCHKpM8MEFI06lh_xGn-fpxdbRo_TtJPPK7ztTBrE2kqqmQvczHGIolQwtriMF5xU5z1hwTIc2lN3FhiQ/s1920/305312663_788847948930403_3094461442859686830_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkcAETvqzVQXgbMTSzSWdjVrvofMKJOgmYxC2wRKkn2onxFKcX-eX3rwsbur4GL4hIEDqyB6l89bLatR-gQiuNV7BuTY6VE-CwHrRhw-GpqrCHKpM8MEFI06lh_xGn-fpxdbRo_TtJPPK7ztTBrE2kqqmQvczHGIolQwtriMF5xU5z1hwTIc2lN3FhiQ/s320/305312663_788847948930403_3094461442859686830_n.jpg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilagtDaV_jq_IDzS7DJeG16UnJZ3ICfZ8UBmVYeRR2XFHxokybMTCtxbgfkRuQDnCLPYIaZXmDTwWbRAb56a0y0UHiLjldSZmVWBaaUY-ghqRX0jELeefsK3CMPmQsjqDwuKZCtCwqgnYYFqjOrcNtIV420vyLArplY6Xj_rUGMG0AxH29gpVIsr6vTg/s1920/305327069_806557813989496_1464376015362441836_n.jpg" style="margin-left: 1em; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN07jBiG2MBFeNSF1W7fyGr9dhtHlRCLp24dUKJK-XnRcXClmFTQnbTuacx2fynYPI2ZlL3xyQacliKSLnA6-iA7xcVbL4gkazeb5kK_IGGcyDwIuupf5Ucc_7iyH19LGIhj-m6gIx4qIGK7aiw9lqepX6AzhZ_1KFQFe0Rh4vkbrq-BtSOTNDHwB6vw/s1920/305468432_349624610626747_8418048553515696471_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN07jBiG2MBFeNSF1W7fyGr9dhtHlRCLp24dUKJK-XnRcXClmFTQnbTuacx2fynYPI2ZlL3xyQacliKSLnA6-iA7xcVbL4gkazeb5kK_IGGcyDwIuupf5Ucc_7iyH19LGIhj-m6gIx4qIGK7aiw9lqepX6AzhZ_1KFQFe0Rh4vkbrq-BtSOTNDHwB6vw/s320/305468432_349624610626747_8418048553515696471_n.jpg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGI0RmcyypC6Pmh1gcDYqOt8O285C19Axaojw4C7iIemAzmdM0vOgmUbe20mF_l3od6A0fVtwPRUf6SLwxPpcmDC52pLHl0ipckx8WNze38vvYawogijTK_TBO1sarfO7xJalnTWKqQTsyBuTA_8w9BBZEfR591DxQL9WmC_sQjysTi6ZpHzDtTYM7Jg/s1920/305535336_933420220814799_6460217702447187248_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGI0RmcyypC6Pmh1gcDYqOt8O285C19Axaojw4C7iIemAzmdM0vOgmUbe20mF_l3od6A0fVtwPRUf6SLwxPpcmDC52pLHl0ipckx8WNze38vvYawogijTK_TBO1sarfO7xJalnTWKqQTsyBuTA_8w9BBZEfR591DxQL9WmC_sQjysTi6ZpHzDtTYM7Jg/s320/305535336_933420220814799_6460217702447187248_n.jpg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnLgORdOa7rMRr_cPz2IRCIC37sPPWix_OlkAmCr2N_GhXMOSRQ9BWR7TzeDpib-h1a0UQpSXAMhwzUrahAbZbm4QCpU1EIa89197lE6W3sDKo6PHXDY510DUvntZjOK-igYwA_a9KCXdtwOi0H8rWLZ80YFPdEpqtc7NYBB0RmZIDEx0YlQ-SUXY_A/s1920/305545482_1070768560238398_3039158619218582747_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnLgORdOa7rMRr_cPz2IRCIC37sPPWix_OlkAmCr2N_GhXMOSRQ9BWR7TzeDpib-h1a0UQpSXAMhwzUrahAbZbm4QCpU1EIa89197lE6W3sDKo6PHXDY510DUvntZjOK-igYwA_a9KCXdtwOi0H8rWLZ80YFPdEpqtc7NYBB0RmZIDEx0YlQ-SUXY_A/s320/305545482_1070768560238398_3039158619218582747_n.jpg" width="180" /></a></div><br /><p class="MsoNormal">The dentist popped in a couple of times to see how he was doing and after Amber was all done, he came in to take a better look at all of Parker’s teeth. He told him how very proud he was of what a great job he did.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Amber offered to polish his teeth today but Parker said “no
thanks” he was all done. After such an amazing visit, we didn’t push it. We
made an appointment for the end of November where we will do the polish and the
x-rays of his front teeth. <o:p></o:p></p>
<p class="MsoNormal">Amber and I felt that having Parker return every 3 months
instead of every 6 months, even if just for a quick check-up, will help keep
him going with the flow that this is a good thing and become more comfortable
with going. We will eventually back off to every 6 months and then yearly if
that seems like the right path. <o:p></o:p></p>
<p class="MsoNormal">As I sat there watching my giant man-boy getting his teeth
cleaned, I fought back tears. <b><i>I hoped for this. I prayed for this. I wished for
this. </i></b>It was like he was a regular 23-year-old at the dentist. Nothing gave off
the appearance of a 23-year-old with a disability. Nothing gave off a hint of how challenging our lives can be. It was just… a regular 23-year-old
getting his teeth cleaned. </p><p class="MsoNormal">He did not need me at all. This is the type of independence you wish for. I won't always be here, I need to know that we've set him up to be successful in all aspects of life before the day comes when he has to live each day without us. (*I have zero intentions of leaving this life anytime soon but the reality is no one knows when their last breath will be.) <o:p></o:p></p>
<p class="MsoNormal">I NEVER thought I would see this day. Never. And here we were.
It was such a surreal experience. A month ago when we made the first
appointment, it was with the hope that we could get him into the office,
literally just IN the door so we could get the referral we needed for the
hospital sedation dentistry. THAT was our goal. 😔<o:p></o:p></p>
<p class="MsoNormal"><b><i>Man did we sell that kid short.</i></b><o:p></o:p></p>
<p class="MsoNormal">23 years old. <b>23. </b>And for the first time, had his teeth
completely cleaned without issue. All these hours later, I am still speechless
and asking myself if this really happened. It did. It really did and his teeth
look spectacular now! <b><i>*Thank you, Amber!!*</i></b> He even gave her knucks on the way out. <o:p></o:p></p>
<p class="MsoNormal">I am so incredibly proud. I took him to Wal-Mart for a new
inflatable after. I told him all day, right up until I tucked him in at night
how incredibly proud I was of him. I am just blown away.<o:p></o:p></p>
<p class="MsoNormal">If there is a life lesson in this, it is simply “never stop believing
in your children.” I was so sure this would fail, I never even considered
making it a goal for him, and yet – look at what he did! Awestruck. I am
completely awestruck. <o:p></o:p></p>
<p class="MsoNormal">23 years old. No one holding him down. No one getting bit or
hurt. Just one, very capable, a young man getting his teeth cleaned by a very
patient and dedicated hygienist who believed in him, too. Thank you, Amber, we
truly appreciate you. <o:p></o:p></p><p class="MsoNormal">If only you had witnessed the attempts over the years for this to happen, you'd understand why we were sure he would have to be sedated at the hospital and never made it a goal for him to succeed. Our kids love to surprise us and Parker certainly surprised us and proved to us that he is extremely capable of getting his teeth clean. It was worth the 23-year wait to see him succeed in the way he did.</p>
<p class="MsoNormal">Oh, and before we left because Parker was disappointed that
I didn’t take any pictures of this last time, I took a picture of one of his
x-rays <span face=""Segoe UI Emoji", sans-serif">😊</span> He is fascinated with it.</p><p class="MsoNormal"><o:p></o:p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiEP31N3O_HJLHYFHYxAF2PHOW6y0G7vgAr5P4QnNR0fsoIFGObrybXhtj9tUn2fQCGDgd2Z1OJwW3jKRAzTXCrQTfoZM0edwLD4Fvbb8LnMugiSty-8F-nZxtWznzzSqocIMhxyyT-26fwxGYM3GiJH9GopJhWNFqcbhBRWp0ohjfUbYnHNDsHWcWOw/s1920/305371347_2303473403163658_7114812015796825731_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiEP31N3O_HJLHYFHYxAF2PHOW6y0G7vgAr5P4QnNR0fsoIFGObrybXhtj9tUn2fQCGDgd2Z1OJwW3jKRAzTXCrQTfoZM0edwLD4Fvbb8LnMugiSty-8F-nZxtWznzzSqocIMhxyyT-26fwxGYM3GiJH9GopJhWNFqcbhBRWp0ohjfUbYnHNDsHWcWOw/s320/305371347_2303473403163658_7114812015796825731_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">And now you can enjoy this set of x-rays, too :-)</td></tr></tbody></table><br /><p class="MsoNormal"><b><i>Do not give up. Never stop trying. Remember, they will
surprise us when we least expect it.</i></b></p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Mommy is so incredibly proud of you, Parker! And thanks for being such a stinker that you wouldn't let me take a picture of your teeth after they were cleaned. 😒They look phenomenal!!</p><p class="MsoNormal"><o:p></o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-73381170509096359052022-09-07T21:55:00.000-07:002022-09-07T21:55:10.323-07:00Parker and the Dentist - Part 1.Parker has been complaining of his teeth hurting a lot lately. I looked in his mouth and swore he had 2 back, bottom molars that were black. So, Scott and I started to get our ducks in a row knowing that dental work for Parker means full anesthesia. We needed to get him to his dentist first to attempt x-rays and get the referral. <br>
Parker has a lot of sensory issues when it comes to his mouth and a very active gag reflex. We've never successfully been able to get bite x-rays without Parker being completely knocked out. We have been able to get the ones where the machine goes around his head but they are not as detailed as the bite ones. <br>
Like most people, the dentist makes Parker nervous. We talked about how it was just a check-up, how to open his mouth, and that he needed to let people touch his teeth - and that the hygienist and the dentist were very nice people. His sister Grace had an orthodontist appointment yesterday which I told Parker was a dentist appointment and that she just did this the day before and how awesome she did. (Grace is Jen's daughter for people trying to figure that one out, lol, I am not hiding a child from you - we just don't do "step" in this family. Our children are siblings. ❤ ) <br>
I was braced for the worst when we arrived at his 8 am appointment as flashbacks of laying on him to hold him still, being bit, kicked, and hit from days gone by at appointments ran through my head. <br>
I checked him in and while I filled out updated paperwork, he "read" a magazine. I wish I had taken a picture, it was really cute. He hesitated when Amber, the hygienist, called his name but did get up and go with me. He finally agreed to sit in the dentist's chair and was intrigued as Amber showed him pictures of past x-rays. <br>
We started with trying to let Amber look at his teeth. He did ok, I told him that Grace let her look at her teeth, I think that helped some. I'm not sure she could see the back molars but she and I still praised him for the attempt. Then she did the x-rays that go around your head. He simply needed to stand still. The weighted apron they put on you always makes this easier as that heavy weight is our best friend. That went very well. <br>
When we went back to the room. As Amber looked at the pictures and showed them to Parker she said he really needed to do the bite plate x-rays so we could get a better look at the teeth we were concerned about.<br>
Always up for a challenge and always hoping to see Parker succeed at something new, I reminded her about his gag reflex and said "I'm in if you are up for it.". She was up for it. She explained to him what she was going to do, I told him that Grace did this yesterday and did great, he could do it, too. <br>
We all 3 took a deep breath and went for attempt one. It was almost an instant gag for him. He didn't throw up though, so that was a positive. I reminded him to take a deep breath, Amber promised him it would be super quick. Attempt 2 went slightly better but had the same gagging results. But, it was progress that she and I could both see. So, I said, "Alright dude, we've got it this time! Deep breath, all you have to do is bite, as soon as she says "bit" you bite fast, ok!" Amber said, "Third time is a charm! We can do this!" <br>
He successfully bit down on the bite plate and Amber scurried to get everything in place. Just as she stepped out of the door to push the button, the bite plate came out. <br>
We told him how awesome he was and how close he was. He took several deep breaths. Another staff asked if it would help for her to push the button, which was awesome. We went in for attempt 4. <br>
Amber asked if he was ready, he said, "yes" and we almost had it but his head wasn't turned enough, the bite plate was spit out as she moved his head. Sigh. <br>
He was totally being a trooper though! So Amber asked him to turn his head to her, where she needed him to be positioned, then tried again. He bit down, the machine was lined up, the button was clicked and for the first time in 23 years, we had a bite x-ray without anesthesia or being restrained. You have no idea how much pride I was bursting with. Well, you probably do, but if you don't, it was a tremendous amount of pride! <br>
Amber switched sides and after he adjusted to having something in his mouth, side 2 was completed and we had the x-rays we needed for today's visit! <br>
All we had left was to see the dentist. I asked if she could leave the weighted apron on him, because I know how much of a difference that weight makes. She was totally fine with that, as was Parker. <br>
The dentist came in, talked with Parker about his x-rays, and then went to look in his mouth. It took a little encouragement but Parker opened his mouth for the dentist to poke around a bit. <br>
He said he was very pleased with how Parker's teeth look! He said there is a tiny start to a couple of cavities that he wants to watch but nothing that he feels needs any attention at this point. He thinks his wisdom teeth will not move anymore so he will watch them but if they do not move, we are not going to remove them as they are not causing trouble at this point. <br>
He said he would like to have Parker attempt a cleaning and suggested we do it a little at a time. The dentist also happened to be a CUBS fan, which Parker appreciated. <br>
We set up an appointment for a couple of weeks from now to try the rest of the bite x-rays so we have the full set and as much of a cleaning as he can tolerate. We both praised Parker for being so awesome and even said he did better than Grace 😉
I let her know that anytime she has a patient with sensory issues or autism to ask if they'd like to wear the apron the entire visit. It makes such a big difference in helping reduce anxiety. She appreciated the advice. I've suggested this to everyone who has ever attempted to get near Parker's teeth and we've always had a positive response. <br>
We were in and out super fast. Parker called his dad to tell him how great he did. He tried to call Grandpa John to tell him but I told him he needed to wait until Grandpa was home from his trip 🙂 He's rather annoyed that I'm not letting him call Grandpa multiple times a day while he is away, lol. <br>
So, for my Fragile X parents, my autism parents, my special need parents who are in our life... don't give up. I walked in completely expecting this to be a huge challenge with puking, hitting, and nothing good coming of it. I always hope for the best but brace myself for the worst. But, he surprised even me with how amazing he did. He was such a rock star, I'm seriously bursting! So, don't give up, keep forging ahead, they will surprise you. Just as they always do. ❤ <br>
A couple of things I want to point out that I really appreciated at the visit today - both the hygienist and the dentist, who were both meeting Parker for the first time, talked directly to him. Not at him. Not to me. But TO him. This was amazing and I know appreciated by Parker, too. They involved him, asking if he wanted to see his pictures of his x-rays, encouraging him to breathe, and just believing completely in him. I need to see more of these moments, they are the best for my momma heart.<br>
I'm just over the moon. I'm so incredibly happy and proud of my guy. I rewarded him with a trip to WalMart for a new inflatable because - dang, he did amazing!! <br>
As much as I know this success means to me, I can see in Parker how proud he is of himself. He is proud that he could do this, too, and that... that is everything!Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-54760970089395883522022-09-01T07:07:00.004-07:002022-09-01T07:07:36.165-07:00Parker, My Mountain Mover (9-1-11)<p><span style="background-color: white; color: #050505; font-family: inherit; font-size: 17px; letter-spacing: -0.41px; white-space: pre-wrap;"><i><b>**This piece was originally written on September 1, 2011. Before I started blogging, I'd write "notes" in Facebook (it was a thing way back when - not to age myself but a decade ago, it was really a thing). When this popped up in my memories today, I copied and pasted it into the blog. This is where it belongs. When more cross my memories (or if I find where Facebook has them hidden) I'll move more over to the blog.</b></i>
</span></p><h4 style="text-align: left;"><span style="background-color: white; color: #050505; font-family: inherit; font-size: 17px; letter-spacing: -0.41px; white-space: pre-wrap;">Parker, My Mountain Mover<br /></span><span style="background-color: white; color: #050505; font-family: inherit; font-size: 17px; letter-spacing: -0.41px; white-space: pre-wrap;">September 1, 2011</span></h4><p></p><div style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 17px; letter-spacing: -0.41px; line-height: 1.4118; margin: 16px 0px 0px; padding: 0px; text-align: left; white-space: pre-wrap;"><span style="background-color: white; color: #050505; font-family: inherit; font-size: 17px; letter-spacing: -0.41px; white-space: pre-wrap;">There is honestly not a single emotion I can think of that describes how I’m feeling right now. Proud and amazed are what come to mind but they just don’t do this feeling justice. <br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
If you’ve known Parker a long time, and especially those who have worked with him – you might want to grab a Kleenex before reading any further. It’s ok… go get one, I’ll wait….. no really, go get one – I promise I’ll wait…………………… and fill in those who haven’t known Parker long on a bit about him.<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
I often get asked if Parker is high functioning. I wish : ) Parker is moderately impaired by his Fragile X. For the longest time he was very, very verbally limited. His behavior was – well, let’s say “difficult” and know that’s being generous. His sensory issues were significant, hyperarousal was part of our day, and his anxiety – was through the roof. There was a time there were more bruises on my body from his meltdowns than not, aggression was his way of coping. I remember getting calls to the school where he had destroyed an entire classroom – literally, every single item off of every desk, shelf, and reachable place was thrown throughout the room.<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
We were extremely fortunate to have been able to bring together some of the most incredible people, locally and from afar, to be Parker’s team. No matter the struggle, his team never gave up. Together we have watched him grow, watched him mature and after the addition of the STX209 to his other medications – we watched him come out of the box that Fragile X had put him in.<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
Outside of Special Olympics – getting Parker to do or go to anything school-related didn’t happen after kindergarten. Kindergarten was the only school open house we attended together as a family – even then he spent most of the open house under the chair at his table. From that point on, I attended them alone.<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
As you know, over the past 2 years since Parker started this drug trial, we’ve seen significant changes in him. His speech has flourished, his behavior is significantly better, he’s more social, his workload at school has increased tremendously… just to name a few things. As I’ve said many times, this drug opened the lid of the box he was put in by Fragile X and it’s been incredible to see how it’s brought him out of this box. As much as I credit the drug – I credit his team. You never really “leave” Parker’s team just because you are no longer on the IEP invitation. Almost everyone who has ever worked with him still cares, still helps and most of all still believes in him. For each of you and each of his friends he’s made along the way who remain by his side – I thank you for making tonight happen. Without your dedication to him and belief in him, he would never be where he is now, even with the STX209. A drug can do only so much – but one’s belief in you and love for you moves the mountains.<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
<b><i>And tonight – he moved a mountain.</i></b><br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
Tonight was the open house at the Middle School where Parker attends. Having not attended one since Kindergarten, despite my love and belief that he can do anything – I had my doubts when he said he wanted to go tonight. At our middle school, the open house takes you through every period (minus lunch) of the school day. 10 minutes in each room. Since he wanted to go – my goal was to get him in the door. That was all. Inside the building, long enough to say he had been there. (I know, I know but when you add my anxiety and a zillion other kids with their parents to the mix – he and I achieving that much would’ve made me proud!).
<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">Parker insisted all 4 of us go, Scott, A, Parker, and myself – so we all went. He was a little hesitant to go into the building (he got to go in the back door like he does every day and his para was waiting – our goal was to make this as “normal” as possible for him). He made everyone else go in first – and then in he came. He spent some time on the floor by his locker and outside of Mrs. Reavis (the Special Ed teacher)’s room and really didn’t want to go in there. He listened from the hall as the principal said it was time to go to your first class of the day. Parker looked at me and said, “let’s go”. He called for Scott and A and off we went (without his para). The hall was packed with kids and their parents, none of who I really “saw” even though I smiled and said “hi” because my focus was on Parker making it through the crowd without any problems. He led us to Mr. Hardy’s room and after a brief hesitation outside the door, he came in and sat down. Mr. Hardy we learned has a box of Gushers for Parker as an incentive in his closet. He reached in and took one out of the box and handed it to me for me to use as I saw fit during the evening. I handed them to Parker and for 10 minutes, we listened to Mr. Hardy talk. He passed out a very generic schedule that we were to follow. 1st Hour said “PE/Encore” (or something like that) so when the tone sounded, I looked at Parker and said, “Ok, where do you go 1st?” Parker said, “PE” and off he went into the crowded halls, confidently leading the way to the gym. The gym presentation was in the all-purpose room, where parents and his classmates filled the bleachers. Parker asked if he could sit on the floor by the wall and I said, “of course”. For 10 minutes, we listened to the PE teachers go over their class and the new equipment. When the tone went off, Parker jumped up and I said, “Where next?” The paper said, “PE/Encore” – (and I think something else) Parker walked down the hall to the next classroom. When we walked in his teacher looked at Parker then back in the room and said, “Oh, I’m sorry, someone is in his seat.” Without skipping a beat Parker grabbed my arm and said, “Come on” and led me to a round table where we all 4 sat while we heard about Study skills for the next 10 minutes.
<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">I sat there watching him sitting and listening so intently. I think, for the first time, I really stepped back and saw him as the 12-year-old that he is. Independent, maturing, and really at a place that I had prayed he would get to but at times doubted as possible. It was extremely hard for me not to take a picture – I wanted to share that moment but instead just really savored every second in complete awe that we were actually at the Middle School, in a classroom with him, and he was leading it all. There was no making him do this, there was no pulling him down the hall, there were no reminders to be quiet or to keep his hands to himself. Between each session, as we walked through the halls, more kids than I could count smiled and said “Hi Parker” as we walked amongst them. Every greeting he replied to with a quiet “Hi”, only once with my prompting which ended up being over him saying “hi” so he repeated himself.
<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">As we walked the halls with his peers – all typically developing 12-year-olds, after my anxiety had lessened, I was like – “<i>this is what it’s like… this is what it’s like to be like everyone else, to walk with your child through the halls from class to class at open house… I’m good with this!</i>”<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">
Parker was a little unsure after the Study Skills class where he was to go next – he walked us around the entire building pointing out things like the sun glowing on the doors which is exactly how it looked, and odds and ends. We made our way back to Mrs. Reavis’ room to find out where exactly he was to be at that time and for the next period. For the majority of the rest of the day, he would be in Mrs. Reavis’ room – Parker decided this would be a good time to go home. I spent a few minutes with his teachers and para in that room, we all discussed how very proud we were of him. Mrs. T – his para who was also his para in 2nd grade so she really understood the significance of this night – beamed with pride. She said, <i>“We always knew this was in him, some of us could see it, his humor, his independence, his want to learn – but it was only glimpses and it was only available to a handful of us… now, what we knew was in there all along is out for everyone to see and he couldn’t be more incredible!”
</i><br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">By going to this open house for an entire hour (it lasted an hour and a half) and making it class to class as much as he did, being social with his friends in the halls, sitting nicely and listening intently in each of the presentations he was part of…. He moved a mountain. A mountain he couldn’t have moved without being let out of the box that held him in for so long.
<br /></span><span style="font-family: inherit; letter-spacing: -0.41px;">Now, you understand why just being proud and amazed doesn’t do justice to tonight’s accomplishment. There are no words to describe the feeling you have when your child truly moves a mountain.</span></div><p class="smnlcbt5" dir="auto" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 17px; letter-spacing: -0.41px; line-height: 1.4118; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"><span style="font-family: inherit; letter-spacing: -0.41px;"><br /></span></p><p class="smnlcbt5" dir="auto" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 17px; letter-spacing: -0.41px; line-height: 1.4118; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh80yglMf1-bit3fsty0vfkvEDXwO566vZZO6yTKbNPDLJ4YpyYO6TnOzfYCvYtXagdT_ReQ4Td3Mpviy2pOimzR30eN2G1Vvx2dV6ufdix5X2ArijDLNhtBQKSROGLVoN6nAVB3tjtg_RHCZK6whKUTn0_4DYF9aNzTWfon175iLaCr1NVvU6jwea0Eg/s1296/266859_2197890275716_5743861_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="776" data-original-width="1296" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh80yglMf1-bit3fsty0vfkvEDXwO566vZZO6yTKbNPDLJ4YpyYO6TnOzfYCvYtXagdT_ReQ4Td3Mpviy2pOimzR30eN2G1Vvx2dV6ufdix5X2ArijDLNhtBQKSROGLVoN6nAVB3tjtg_RHCZK6whKUTn0_4DYF9aNzTWfon175iLaCr1NVvU6jwea0Eg/w400-h240/266859_2197890275716_5743861_o.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Parker and his hamster, Blackie Poops A Lot. </td></tr></tbody></table><br /><span style="font-family: inherit; letter-spacing: -0.41px;"><br /></span></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-27011496673441660582022-08-15T19:58:00.009-07:002022-08-16T14:58:22.858-07:00The Wedding<p> <span style="font-size: 14pt;">I was
tempted to write a much shorter version of this to give to Michale to read at
the wedding on behalf of the other best man but there was so much going on
already, it seemed best to wait and write out what I was thinking and feeling
as this message deserves a much bigger audience. And more detail.</span></p><p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">
<br />
It is hard to remember a time when Lee was not in our lives. The boys have been
friends for what feels like forever. From fishing to swimming to basketball to
just hanging out and watching TV, these two have so many lasting memories that
I am so very thankful for.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">When Lee
proposed to Taylor, he messaged me and said he wanted Parker to be his best
man. I was excited, happy for Lee and Taylor, and skeptical. I didn’t say
anything to Parker. It was a long way away and life happens so I didn’t say
anything. <br />
<br />
Over time, when Lee would see Parker he would say he was going to be his best
man – I was fairly certain Parker wasn’t familiar with what a best man was so I
didn’t say much. I love Lee’s excitement but I didn’t want to set anyone up for
disappointment. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">This summer,
things started happening quickly. Lee needed to set dates to look at tuxes, order cufflinks, to do all of those wedding things that you need to do. And
that is when it sunk in with me, this is real. Lee is really following through
with this.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">I want to be
clear on something, I never doubted Lee or what he wanted. I knew that Lee had
the full support of his family in his choice. Lee’s family considers Parker to
be part of their family. <br />
<br />
It’s just… as Parker gets older, the “promises” and things people have always
told Parker like, “I’ll still come to visit” or “I’ll always do things with you”
or “I want you to be at my wedding” or “I want you in my wedding”… are promises
and statements that are forgotten as their lives move forward. So while I
didn’t expect that from Lee, I didn’t want to have Parker’s heart – or mine –
hurt if this was something that ended up not happening. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">There are so
many people in our world who love Parker or who are “in” his life yet either
embarrassed by him or do not believe he can do hard things. I’ve learned to
manage my expectations and his because I have to. I’m his mom. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">But, I
didn’t need to do that with Lee. Lee, along with his brother Michale who is
our go-to when I need to leave town to hang out with Parker, both reminded me
frequently the wedding was approaching. And it was real. <br />
<br />
So I did what I do, I prepared Parker. Lee was really doing this and I needed
Parker to succeed. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">It was
already agreed that there would be 2 best men, Parker and Michale. That helped
a lot as it gave Parker some wiggle room.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">I started
by putting the date on the calendar last May. As time grew closer we started
to talk more about it. We talked about dad and Jen’s wedding and how A, Abby,
and Grace stood up by Jen and Uncle Joe stood up by dad. We talked about how
important it is for everyone to stand still and how no one is looking at you
because everyone is looking at the bride and groom. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We talked
about how important all of this was to Lee. How this is something that best
friends do for each other and how special it is to be picked.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">Then it came
time to get fitted for the tuxes. And, it was a complete fail. Parker refused
to go. In all fairness, it was just a couple of days after I returned from
Europe. We should have planned that better and I knew it. I initially planned
to just get him fitted locally and then send that information to Peoria but
Michale was returning while A and I went to Mayo the next week – so I suggested
that they try again. And sure enough, Parker went without any problems. We were
back on track. The hiccup was simply the timing.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We went back
to talking about the wedding. There would be a pretty girl and he would need to
help her walk to her place just like he walked with Rylee at prom. That would
be his job. He needed to take care of her.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We talked
about how he needed to stand still and quietly until Michale told him it was ok
to leave and then he needed to follow or go with Michale.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We talked
about the reception… the party … and that it was ok if he didn’t stay the
whole time but he needed to stay as long as he could.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We added
dates to the calendar. Picking up the tuxes. The rehearsal. The reception. We
started to count down the days. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">He was so
excited. He was also super anxious. The week of, we kept Willow home from doggy
daycare, on Thursday because he was so overwhelmed he just couldn’t function
without her by his side. It was the first time I felt a tinge of panic.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">I asked my
friends for positive thoughts, prayers, whatever they had. This was a huge
event for Parker and more so for Lee and Taylor and I just wanted it to go
beautifully for everyone. My good friend, Amy, text me a message for Parker
sharing her experience as a member of the bridal party and what her “job” was
being sure he knew it was Parker’s job to keep Lee smiling and laughing because
he will be nervous. Parker liked that. That afternoon, Parker happily left with
Lee and Michale for the final tux fittings and to bring them home. After, they went to iHop for supper. They
called on the way home laughing, teasing each other, and having the best time
ever. He was on cloud 9 until he fell asleep, just so happy from his time with
the guys.<o:p></o:p></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY5pEfmCE20R6JOfwUUlqa1g5PsTYfZ4LSLSdQABJIhJnaNrqXdHiR3Xv_OSKLqdG3NMuODhk2_vqjNP-c_tFY1vv-QByQ2ev4Qwj-oGviuCYpKH-M87T6dlwvdzxSmWH0XuagY1E1ErR-TH3j5X1Jnnwk4iTbwrcn9as-iXMikGZ1x3CffkTeIlEGbQ/s751/298411274_10229335706926099_7696065454275461524_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="423" data-original-width="751" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY5pEfmCE20R6JOfwUUlqa1g5PsTYfZ4LSLSdQABJIhJnaNrqXdHiR3Xv_OSKLqdG3NMuODhk2_vqjNP-c_tFY1vv-QByQ2ev4Qwj-oGviuCYpKH-M87T6dlwvdzxSmWH0XuagY1E1ErR-TH3j5X1Jnnwk4iTbwrcn9as-iXMikGZ1x3CffkTeIlEGbQ/w400-h225/298411274_10229335706926099_7696065454275461524_n.jpg" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVnURPPuBPTibXKj9R_6qeiquTeL5uU63UpZHfDLidfoqUm_PYuYARQojUb7Kfz9ZSalwPNzNH_GVx1oD1gbkhGPrTMVpoPb635cadxPfLHdxaXb9xRIpmERancHozzNirZMmzlKtGp9NWgEkZ7KCXSyArqiuGNcVF0oMSrn1zXxLNpICcJ7555S5x1w/s750/298534553_10229335707286108_5024843780650910618_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="422" data-original-width="750" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVnURPPuBPTibXKj9R_6qeiquTeL5uU63UpZHfDLidfoqUm_PYuYARQojUb7Kfz9ZSalwPNzNH_GVx1oD1gbkhGPrTMVpoPb635cadxPfLHdxaXb9xRIpmERancHozzNirZMmzlKtGp9NWgEkZ7KCXSyArqiuGNcVF0oMSrn1zXxLNpICcJ7555S5x1w/w400-h225/298534553_10229335707286108_5024843780650910618_n.jpg" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSsafDccEZNG6LWfUNfdjuuvVSip0EkJlHbaj_XrV9M0gSy0Yc5ipNIhB8QB2E6dJOYnwxoC2Da5O7xW4-pfHbBhYTQ_CBytj1M2qdfs5o0SE4D9-9xUZo1-ACJtesSmopoCnc4PPIUKPX5ei0BvOStXDQ6Dxb6izKx7MqqKLhsSDyRWDkDLepnDeDA/s2048/298572729_10229335722766495_4399369879490859524_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSsafDccEZNG6LWfUNfdjuuvVSip0EkJlHbaj_XrV9M0gSy0Yc5ipNIhB8QB2E6dJOYnwxoC2Da5O7xW4-pfHbBhYTQ_CBytj1M2qdfs5o0SE4D9-9xUZo1-ACJtesSmopoCnc4PPIUKPX5ei0BvOStXDQ6Dxb6izKx7MqqKLhsSDyRWDkDLepnDeDA/w300-h400/298572729_10229335722766495_4399369879490859524_n.jpg" width="300" /></a></div><br /><span style="font-size: 14pt; line-height: 107%;"><br /></span><p></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">Friday, he
went to the rehearsal and did great. He came home to his dad’s house supper
happy, again, and ready for the wedding. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">It was his
dad’s weekend so his dad and Jen helped him get ready for the wedding. My first
peak at him was when I arrived for the wedding. In all honesty, it was probably
best that he got ready there even though I would have enjoyed helping him get
ready, it was good for him to have his dad and Jen for this.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">At the
wedding, Michale let me know there was a seat up front for Momma Holly. It put
me close to Parker if I was needed and Michele has always let me claim her sons
as mine, just as she claims Parker as hers. Sometimes people that your children
bring into your life come with amazing families who become part of yours. We
are so fortunate that this is exactly the case with our families. Michale also
told me that during practice Parker wandered a lot and that “it is FINE.” I
need to let him do it and know that everyone is ok with it. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">They made
their way down the aisle, Parker with his face covered, he changed places
several times during the ceremony on where he stood, he covered his mouth when
he wanted to talk – or did talk and was quietly reminded to shhh by the
groomsmen – and covered his eyes when they told Lee and Taylor they could kiss.
<o:p></o:p></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-FzxWXW_5KFeuOTjFfxbVgmekoBqhytLPT6k8XA0zUpYe3-OMvEHEsEgeDLrApXiRDi3JGl-YTzrSCeqWKg58PRG_6OkNZ6YRvTYIhEOOIiO7lugLrukdc2Hdr3qfaRQm4uWTAcj8WzWnZTQc6wwjnJ9BdifT7W0LXVX-eB-qvQ2eQgs06VFOotQ0A/s2048/298550695_10229335725286558_2778853230239307862_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1153" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-FzxWXW_5KFeuOTjFfxbVgmekoBqhytLPT6k8XA0zUpYe3-OMvEHEsEgeDLrApXiRDi3JGl-YTzrSCeqWKg58PRG_6OkNZ6YRvTYIhEOOIiO7lugLrukdc2Hdr3qfaRQm4uWTAcj8WzWnZTQc6wwjnJ9BdifT7W0LXVX-eB-qvQ2eQgs06VFOotQ0A/w225-h400/298550695_10229335725286558_2778853230239307862_n.jpg" width="225" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-lFGVrzoxUI5yGFbV2tDT9vh16hDv86DTtWaC1li2ISXh9eMoaq_a2YIv5puMXRA5N3AUbsnM4f1ci2GQO3a4ynqx05PhgkP5Fjg6zs1-bkvCn90LKxwBZ4JfLlUsi1rFjba62ZtrY_kaE73ZPZWUlPtSV5UGR_yAL7_xVnSTbizsedVofrQykoKHnQ/s2000/298604780_10229335727086603_315037336916739653_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="912" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-lFGVrzoxUI5yGFbV2tDT9vh16hDv86DTtWaC1li2ISXh9eMoaq_a2YIv5puMXRA5N3AUbsnM4f1ci2GQO3a4ynqx05PhgkP5Fjg6zs1-bkvCn90LKxwBZ4JfLlUsi1rFjba62ZtrY_kaE73ZPZWUlPtSV5UGR_yAL7_xVnSTbizsedVofrQykoKHnQ/w183-h400/298604780_10229335727086603_315037336916739653_n.jpg" width="183" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMbkCeVJfZHGCXPXADSmIteR3URXFv86jxh35iZjGKKhS35qyOC-kHCZSUhgRodjj6405EnzO2DdSIz5GYlFq0NEVKcvyUH4dWMJ7IO-ZT5SsMzWI9VWKjrLVRenNbt7KKT_9laIRTFMSJpwFNQr1rWZ6qxP5rtbI60i-4UwTd7YwpOPazMb86vP6J0g/s2048/298668699_10229335726526589_6531894248900123726_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1123" data-original-width="2048" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMbkCeVJfZHGCXPXADSmIteR3URXFv86jxh35iZjGKKhS35qyOC-kHCZSUhgRodjj6405EnzO2DdSIz5GYlFq0NEVKcvyUH4dWMJ7IO-ZT5SsMzWI9VWKjrLVRenNbt7KKT_9laIRTFMSJpwFNQr1rWZ6qxP5rtbI60i-4UwTd7YwpOPazMb86vP6J0g/w400-h219/298668699_10229335726526589_6531894248900123726_n.jpg" width="400" /></a></div><br /><span style="font-size: 14pt; line-height: 107%;"><br /></span><p></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">It was
amazing. I was so proud of him. And proud that because he did so well, I got to
really focus on Lee and Taylor for their special day. I am so incredibly proud
of the young man Lee has become. It was nice to just soak it all in.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">The
reception went well, overall. When Parker was announced to walk in – he quickly
dropped to the ground inside the door. This is pretty common and no one who
knew him thought twice about it. His dad went over to talk with him while I got
him a lemonade. It worked well and soon he joined the wedding party at their
table. <o:p></o:p></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhr9Ds2PRB86eYi4VO5EL7LHKa0CQWHsYxADId2UC7tVxc0deALiWLGeyVvDUb2QB0y_q50D_ksueSziPSKKVjTqQB5P0ASLvQVl_Y7QKkON1rY18U9nFLjI9YeglDYuWxnLalQcWGqgigSqncA2X_ounGpKE5V_qEQI4p_uKCZY7sD7c4gwq_R5LDg/s2048/298539577_10229335840209431_8434259164404300625_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1153" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhr9Ds2PRB86eYi4VO5EL7LHKa0CQWHsYxADId2UC7tVxc0deALiWLGeyVvDUb2QB0y_q50D_ksueSziPSKKVjTqQB5P0ASLvQVl_Y7QKkON1rY18U9nFLjI9YeglDYuWxnLalQcWGqgigSqncA2X_ounGpKE5V_qEQI4p_uKCZY7sD7c4gwq_R5LDg/w225-h400/298539577_10229335840209431_8434259164404300625_n.jpg" width="225" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpkoGh3cME00ubazfjErZ_XlDQeBqERAYqMuo5oipQ-GPJc1mV0Jf8Wli6q0aEmgQ6gMo3tCONHSSs2ARDMb-9DLwP4kjFRlAWVLakXVi5oNOlpXeTSUs1ou0QBXhyPaaOlAexeAM1wOn0I3L3JX5Karlj4CVEechC38aEvBcL-UcUEpdqwqPjIsL7nw/s2048/298680557_10229335844969550_1804884741586873963_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1153" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpkoGh3cME00ubazfjErZ_XlDQeBqERAYqMuo5oipQ-GPJc1mV0Jf8Wli6q0aEmgQ6gMo3tCONHSSs2ARDMb-9DLwP4kjFRlAWVLakXVi5oNOlpXeTSUs1ou0QBXhyPaaOlAexeAM1wOn0I3L3JX5Karlj4CVEechC38aEvBcL-UcUEpdqwqPjIsL7nw/w225-h400/298680557_10229335844969550_1804884741586873963_n.jpg" width="225" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: 18.6667px; text-align: left;">He joined the wedding party on the dance floor and smiled throughout the evening. It’s safe to say that the day exceeded all of my expectations. I appreciate everyone who was sending us positive thoughts and keeping Parker in their prayers during this timeframe.</span></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihsamBYQqnmdI0Nbayaundxsaca-pGcZ5oe7SEfwNFGHFOt7iaFblqxJSQmcPQR53kFuq9Iyp1tyDONh1BoR8JN1u_nql2_KosB_cmtiXISYPkLxjc4jD9e-lnMA6abjx5nIkt4vl24kMkQ5mbMkmutVLK87LhAlFUvRNYwhSnJLQIzZVYPUwJt7urjA/s1920/298526713_10229335846089578_3038378946909098567_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihsamBYQqnmdI0Nbayaundxsaca-pGcZ5oe7SEfwNFGHFOt7iaFblqxJSQmcPQR53kFuq9Iyp1tyDONh1BoR8JN1u_nql2_KosB_cmtiXISYPkLxjc4jD9e-lnMA6abjx5nIkt4vl24kMkQ5mbMkmutVLK87LhAlFUvRNYwhSnJLQIzZVYPUwJt7urjA/w225-h400/298526713_10229335846089578_3038378946909098567_n.jpg" width="225" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">When it was
time for the dollar dance, I went up to dance with Lee and share with him what
I would have said in the speech from Parker. I thanked him for having Parker be
a part of his big day. Being Lee, he replied, “I told you this is what I wanted,
he’s my best friend and brother.” I said, “I know, Lee, but do you know how
many people have told Parker they want him to be a part of something, and then
when it came down to it they didn’t? He’s watched friends move on with their
lives without him. He’s watched friends get married and not even invited him to
the wedding. He sees all of this on social media. He knows everyone’s life is
moving forward at a pace he cannot. But you… you have never left his side. You
have always been there. You two can tease each other endlessly or just sit
quietly and watch tv without saying a word and be happy just to be together.
Your actions speak so loudly for the young man you have become. Taylor gained a
husband who is true to his word, loyal to his friends and people in his life, a
friend who sees someone for who they are inside, not anything that holds them
back, you are a friend who understands so much that words aren’t needed. And
all of that those are things to be proud of. I am proud of you and Parker is so
honored to be here for you today and so happy to stand by your side… or behind
the other groomsmen. Thank you for being such a good friend.” As we both fought
tears, I ended our dance and congratulated him again. Lee reminded me he wouldn't have had it any other way. All he wanted was Parker up there with him for his big day.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">We were
getting ready to leave shortly after. We promised Parker that it was ok to not
stay for the entire reception, it would go way past how late he liked to stay
up. He left with his dad and Jen, A and Grace. I was getting ready to leave
shortly after. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">I told
Michele a little about what I told Lee, she looked at me and said, “We raised
them differently than the rest.” And she’s right.. we did. Partially because we
had to and partially because we knew they were up to the challenge of standing
out for standing up for others.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 14pt; line-height: 107%;">On Saturday,
our “brothers from another mother”, all 3 of them, made us all proud. Lee and
Taylor had a gorgeous wedding and an incredibly fun reception. We wish them the
very best. <br />
<br /><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMUQy84wjoIBgfUaSMkR38OSCvEAzB-TejliGq3hy9sZeIz-dirhT4ehfoY1OzHrjptKsR2QqCwntlOXpGpjq28ctEekRYh6xfFoIqczghPZgjbBnD4g-nAbDiRe3Cxgj38MGunhK0kwQ3omPCis9i-mefoCZ_nOoW4vsjJI756vY3it_l-GowmDUkg/s1920/298607729_10229335848609641_5469942264160789525_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMUQy84wjoIBgfUaSMkR38OSCvEAzB-TejliGq3hy9sZeIz-dirhT4ehfoY1OzHrjptKsR2QqCwntlOXpGpjq28ctEekRYh6xfFoIqczghPZgjbBnD4g-nAbDiRe3Cxgj38MGunhK0kwQ3omPCis9i-mefoCZ_nOoW4vsjJI756vY3it_l-GowmDUkg/w640-h360/298607729_10229335848609641_5469942264160789525_n.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="clear: both; text-align: center;"><span style="text-align: left;"><span style="font-size: medium;">And Lee, if you are reading this… just to remind you… Parker says “You’re a girl” hahaha!</span> </span><span style="font-size: 14pt; text-align: left;">(It’s their long-time joke)</span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBVA0TJHRzQSI0W6SXMm96hvi1Veu14p6V9FSooQWDCE3Ho704rxbC40wq5COXhFg4Yk7F1a0cAYNzIWKNPtYZzTuoN0No6Gtc5YWZcQq08P2Z63FiLOnkqU9JLElpiU9FVKsYFCc0Ze1ON65fnLGZVcawc7NMjFWX2Q4Gcc2pEv1fBjAmpmNzo0nWaw/s2048/298577670_10229335844809546_2864922566026899925_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1153" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBVA0TJHRzQSI0W6SXMm96hvi1Veu14p6V9FSooQWDCE3Ho704rxbC40wq5COXhFg4Yk7F1a0cAYNzIWKNPtYZzTuoN0No6Gtc5YWZcQq08P2Z63FiLOnkqU9JLElpiU9FVKsYFCc0Ze1ON65fnLGZVcawc7NMjFWX2Q4Gcc2pEv1fBjAmpmNzo0nWaw/w225-h400/298577670_10229335844809546_2864922566026899925_n.jpg" width="225" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><h4 style="clear: both; text-align: center;"><span style="font-size: large; text-align: left;"><b><i>Congratulations Lee and Taylor Davis!</i></b></span></h4><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCm07xh3Mr6edEQQYTsDA_jc6J7mjAQLYOgrW_7dsZH6eLLcwP8eq-SdG4xzTl8XkeW8B_lA-HM659obNzj4zdUpTDxJ-fqECggUJY7ycTuaD7YCDS6VIc4xe8o-rohHl4ApgeszDvb_EiVlFSUUAfShbJw2Y2DjRaBGsHBVjAvA80jVRDMuHdFRvKew/s960/298424520_177849254725296_2664900391391047933_n.jpg" style="font-size: 14pt; margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="959" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCm07xh3Mr6edEQQYTsDA_jc6J7mjAQLYOgrW_7dsZH6eLLcwP8eq-SdG4xzTl8XkeW8B_lA-HM659obNzj4zdUpTDxJ-fqECggUJY7ycTuaD7YCDS6VIc4xe8o-rohHl4ApgeszDvb_EiVlFSUUAfShbJw2Y2DjRaBGsHBVjAvA80jVRDMuHdFRvKew/w640-h640/298424520_177849254725296_2664900391391047933_n.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /><span style="text-align: left;"><br /></span></div><br /><span style="text-align: left;"><br /></span></div><br /><p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-13322362094688827552022-06-07T05:47:00.001-07:002022-06-07T05:47:10.463-07:00Please tell me...<p> Hey.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><br />
Can we talk openly and honestly for a minute? I mean, can you? I’ve been open
and honest about this before – I’ve never hidden it, I’ll continue to be open
and honest about it but I need for you to be. Open and honest with me about
this… because I need to know. Like deep in my bones need to know. I’m hoping it
will help me, so your honesty here is much appreciated.<o:p></o:p></p>
<p class="MsoNormal"><br />
I’ve not hidden the fact that I live with anxiety and depression. It’s pretty
significant, I’m not sure I’d say “severe” but that’s likely me not wanting to
be honest with myself, not you. If I could accept that I’d use that word when I
tell you about it. Significant sounds less overwhelming to me so it’s the word
I’m choosing to stick with for now.<o:p></o:p></p>
<p class="MsoNormal"><br />
Sometimes, I feel like my depression doesn’t match what others say depression
is. You know, the people who say “I don’t cry. I’m not sad.” But, that’s me. I’m
completely fine one moment and the next I’m so overwhelmed with sadness and
fear. It’s not often that it happens like that during the day but it’s
incredibly common for me to wake up that way.<o:p></o:p></p>
<p class="MsoNormal"><br />
Things are great in my life. I do believe I am happy. I feel happy. I have an
amazing family, a job I love, a dog I adore, cats I tolerate (just kidding, I
love them, too), and a best friend who is always there, I have really good people
in my life. My life is good. I went to bed happy. But I woke up sad. Like
really sad. Like, I’ve been crying for 20 minutes so far sad. And I have no
idea why. None.<o:p></o:p></p>
<p class="MsoNormal"><br />
I will pull it together. Before I take Willow to doggy daycare, before I even
step out of my house, I’ll pull it together. No one will know. No one. I don’t
have a lot of options there. I pull it together faster when Parker is with me
because I have to. He needs me to. On mornings like this when he is not here, it
takes me a little longer but I will, before I step out of the house, before my
first zoom call of the day, I’ll pull it together enough to appear completely
fine. By the end of the day, when I take my exhausted self to bed (because
these days are exhausting), I’ll be ok.<o:p></o:p></p>
<p class="MsoNormal"><br />
I don’t understand why these random days happen. I’m on meds, I take them
faithfully. Nothing sad has happened in the past 24 hours. Or 48. Or 96. Or
longer.<br />
It's just…. It’s just how I wake up sometimes. <o:p></o:p></p>
<p class="MsoNormal">Here is where I need you. I need to know how it feels to
live without depression and anxiety. Like, do you always wake up happy? Do you
ever wake up sad? Are your emotions just “there” and not overwhelming? What’s
it like? Like, really, what’s it like to live without this? <br />
<br />
Because, maybe, just maybe, if you are open and honest with me – I can figure
out how to do that, too. I know, that’s not how the brain works but my heart
needs to know. I need to know how it feels to be ok all the time. To stay happy
when you are happy. To not wake up sad. To not have to talk yourself through
your anxiety, depression, or panic attacks. I just need to know… what is that
like? Because, I’m pretty sure I’m never going to know through experiencing it
myself but my heart really wants to know so I hope you will tell me… honestly.<o:p></o:p></p>
<p class="MsoNormal">I do want to add that I know how fortunate I am. While I
have significant anxiety and depression, I’m still ok. I can be happy. I think
I function pretty well. My meds are great and when they are not, I have a great
doctor who adjusts things or switches things up. I’m not at risk of unaliving
myself. But I know people who are. If that is you, please, I am begging you,
please reach out for help. There are resources and people there to help you. I
promise we need you here.<br />
<br />
Maybe that’s why I like “significant” better than “severe” I know I could be so
much more impacted by the anxiety and depression. I can get out of bed. I can
get through the day, it may include tears but I can do it. I do know I am
happy. I do know that the day will get better. I do know how much I am loved by
my tight circle of people. I do wish everyone knew that.<o:p></o:p></p>
<p class="MsoNormal">I just need to know, what is it like to live – to really
live, without these challenges. I just need to know, how does that feel? It’s
ok to share the good and the happy and be honest about what your life is like, and how
your brain works. It won’t make me feel worse. I accepted a long time ago this
is how my brain works and in accepting it, I’m able to help it. So don’t
hesitate to share your good, I love hearing the good. It helps me. <o:p></o:p></p>
<p class="MsoNormal">So, I’m counting on you to be open and honest. And, I thank
you in advance. Maybe it will help someone in addition to me, too. <br />
<br />
Much love, <br />
H <o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83Vb1O3kE1x8yrC2edTYprS9n_mHi-7ReG9Yn4Z4eVlMcEz8XgmwLN7UNjM6H-VGf2KSPamreYADl4QWE9Y6eIeLccJxF35cFyjYFcMjindOcd3pF5vOnHBYV05gYwHs0WbLdsWwYL26acP7W4I3xpeX3IkyAQ6NQG1i7NTRmxIT7Y7n8OO9srG2oDQ/s600/274913549_283295370610391_6396850709179239343_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83Vb1O3kE1x8yrC2edTYprS9n_mHi-7ReG9Yn4Z4eVlMcEz8XgmwLN7UNjM6H-VGf2KSPamreYADl4QWE9Y6eIeLccJxF35cFyjYFcMjindOcd3pF5vOnHBYV05gYwHs0WbLdsWwYL26acP7W4I3xpeX3IkyAQ6NQG1i7NTRmxIT7Y7n8OO9srG2oDQ/s320/274913549_283295370610391_6396850709179239343_n.jpg" width="320" /></a></div><br /><p></p>
<p class="MsoNormal"><b><i>PS. if you are in my shoes and want to share, I’m here to
support you. And tell you that chocolate usually helps <span style="font-family: "Segoe UI Emoji",sans-serif; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol-ext; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: "Segoe UI Emoji";">😊</span>
Feel free to share what helps you, too. Or just your experience so others know
they are not alone. I thank you, in advance, too. Your words are just as important!</i></b><o:p></o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-33982470653284091762022-03-10T20:58:00.000-08:002022-03-10T20:58:06.928-08:00Your safety will never be an inconvenience to me. <p><span style="font-family: arial;"> <span style="font-size: 12pt;">We had a
very light snow tonight, just enough to cover the ground by the time A and
Parker left for work. Before they left, I asked A if they wanted me to take
them to work and pick them up. A, who has driven through a blizzard, laughed at
me for asking and said they were fine.</span></span></p><p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">
<br />
I knew they would be fine. I knew they didn’t need me to drive them. But I
asked anyway.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">A friend
called while they were at work, and I mentioned that I had made this offer. My
friend was just stunned that I offered, more so, the friend was offended I
would do such a thing. I need to “<i>let them grow up and be more responsible</i>”,
“<i>stop doing things for them or they will never learn</i>” and to “<i>quit offering
to help all the time</i>.” Ah yes, the awesome unsolicited advice from someone
who is not raising my kids. That’s always my favorite.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">I let my
friend rant and attempt to berate my choices for a couple of minutes. When they
were done, I finally took a deep breath and spoke.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">“<i>As an
adult, I mistakenly put diesel fuel into my van. My dad drove hours, very late
at night to get me and take me home. He then drove the hour and a half home at
2 in the morning instead of staying the night. Why? Because, as my dad often says,
“<b>that’s what dad’s do</b>.”<br />
<br />
At 48, he will still offer to drive me somewhere or come get me when the
weather is bad, even though I’m completely capable.<o:p></o:p></i></span></span></p>
<p class="MsoNormal"><i><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">He drives
my mom to work when the weather is bad.<br />
<br />
When I was A’s age, I had already moved out but it never stopped my dad from
offering. Gas money, a ride, to drive somewhere…. He still does.<o:p></o:p></span></span></i></p>
<p class="MsoNormal"><i><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">Like A, I’ve
always lived in Illinois. We know how to drive in the snow. We know to watch
out for other drivers who don’t drive well in the snow. We know that the roads can
be unpredictable.<o:p></o:p></span></span></i></p>
<p class="MsoNormal"><span style="font-family: arial;"><i><span style="font-size: 12.0pt; line-height: 107%;">What I
hope A has learned, and Parker, is the lesson my dad has taught me over the
years – my children’s safety will never be an inconvenience to me</span></i><span style="font-size: 12.0pt; line-height: 107%;">.”<br />
<br />
My friend listened, disagreed, and moved on with our conversation. <o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">Here’s the
thing, you don’t have to agree with me. You don’t have to do this for your
children. This is simply my choice for my life, but I want my children to know,
that at any age, <b>their safety will never be an inconvenience to me.<o:p></o:p></b></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">I don’t know
that my dad intended to teach me that life lesson, but he has and because I
know that my safety never is an inconvenience to him, I never hesitate to call
him when I need him. It may just be advice or to talk me through a situation,
but I know that while I may be a pain in his butt at times, my safety is never
an inconvenience to him and I’m so incredibly thankful for that – and for him.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: arial;">I hope that
one day, my kids feel the same about the life lessons I have passed along to
them.<o:p></o:p></span></span></p>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: arial;">I am letting them grow up. I am making them be
responsible young adults. I’m also reminding them that as they grow up, it
doesn’t stop me from being their mom. It doesn’t stop me from caring. It doesn’t
stop me from offering to do something they can do themselves. It doesn’t stop
me from loving them. <br />
<br />
As I look at what is going on around the world, I am holding my kids a bit
closer. I am also passing along life lessons because … “<b><i>that’s what mom’s
do</i></b>.”</span></span>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com1tag:blogger.com,1999:blog-1394541577708014059.post-4116853092306797402021-12-14T20:47:00.002-08:002021-12-14T20:47:38.692-08:00You do not know how I feel.<p>I'm going to apologize in advance. I'm going to rant for a moment.</p><p>“I understand how you feel.”</p><p class="MsoNormal">Can we stop with that phrase, please? It’s always bothered me and today, it
pushed me to a bit of a snap on an unexpecting person – so I’m just putting it
out there for the world. Hopefully, it will prevent someone else from getting
snapped on. Maybe.<o:p></o:p></p>
<p class="MsoNormal">I received a call about Parker’s annual PUNS list renewal.
For those not in IL or not in the disability world PUNS is the state's assistance to help individuals with disabilities. It’s a damn joke, too. Parker
has been on the list since he was 8. Every single year we go through the renewal
process because if you don’t, you get moved to the bottom of the list (that
never seems to change – we’ve always been at the bottom).<o:p></o:p></p>
<p class="MsoNormal">It used to be they came to your house once a year to see if
your child still had their disability -
because sometimes it magically disappears, you know – and you filled out all of
the paperwork together. Because you know what is awesome when you have a child
or children with special needs? Having strangers in your home talking about you
and your parents not able to share the joys you bring but focus on the
challenges and reality of what you cannot do. It sucks for everyone and on top
of it, you are trying to keep your kid from being overwhelmed by this stranger
who is taking all of your attention and upsetting the balance in your home and
your schedule. Thanks to Covid – this is now done over the phone – and I could
not appreciate that more. <o:p></o:p></p>
<p class="MsoNormal"><br />
Except, it’s a random call. You don’t know when it is coming and, I don’t know
about everyone but *I* need to brace myself mentally for these discussions or
they break me. The irony of this call coming unexpectedly today was I had a
call with my dear friend, Karen, earlier in the day about services in other
countries and how you have to focus on the negative or no one will help you.
And, if you are on the PUNS list, even with the negative, no one will help you.<br />
<br />
So, that is where we were. An unexpected call for me to review and discuss all
of Parker’s challenges, the fact that he will forever need 24/7 care, and the
ugly bits that I don’t always share. I shared that Parker had aged out of the
school system and we are looking at the next steps but Covid has put a wrench in
that at the moment. Part of survival in the special needs world is knowing and
accepting the reality without dwelling on the challenges but instead building
on the positives. You have to, or you won’t survive. I have to, anyway. I share
the challenges but I love sharing the joys so much more. <o:p></o:p></p>
<p class="MsoNormal">At the end of our call, when I was already a bit annoyed, I
said, “Just out of curiosity, will he ever be pulled from the list to get services, or are we just going to keep killing trees with renewal paperwork every year
until I die for no reason?”<br />
<br />
She said, “Well, yeah, eventually – after he turns 18.” <br />
<br />
I paused and said, “He’s 22. He’s aged out of the school system.”<br />
<br />
She said, “Oh, yes, well then after you turn 18 it is usually about 5 – 7 years.”<br />
<br />
Me… now annoyed… “So the 10 years we did this from 8 – 18 was pointless. It
will be 5 years in May since he turned 18. He needs services. We’ve been
requesting them for over a decade.”<br />
<br />
She said, “I understand how you feel.”</p><p class="MsoNormal">Me.... quick internal debate on what will come out of my mouth next.<br />
<br />
I said, “No you don’t.”<br />
<br />
She said, “Yes, I do. <b>I know exactly how you feel</b>.”<br />
<br />
I should have said “ok or thank you” and hung up and there are times, I’ll do
that. Today was not that day. Not even close when she insisted, she knew
exactly how I felt. <br />
<br />
I tossed out the question I knew the answer to based on her not knowing that 22
was when you aged out of the school district… “Do you have child or children
with special needs – of any age?”<br />
<br />
Her: “Well, no, but I understand.”<o:p></o:p></p>
<p class="MsoNormal">Me: “Do you have family members with a disability of any
kind?”<br />
<br />
Her “No, but I really do understand how you feel.”<br />
<br />
Me: “Are you a single mom? Or have you ever been a single mom?”<br />
<br />
Her: “Well, not but I really do understand.”<br />
<br />
And this is where I snapped.<o:p></o:p></p>
<p class="MsoNormal">It’s impossible. It’s impossible to know how I feel when you
have never been in my situation. You’ve never raised a special needs child at
all, let alone as a single mom. You don’t know what it feels like to do the
same paperwork year after year after year for what feels like nothing. You don’t
know the worry I have for the future for my son who needs round-the-clock
assistance. You don’t know how hard it is to talk with strangers – or even
friends – about the challenges your child faces. You don’t know how much an unexpected
phone call for you to go through a list of your child’s challenges and needs
hits you – so hard. You don’t know. You can’t know. So please, do not tell me that
you know.<br />
<br />
I went on to say… you can sympathize, you can be empathetic, you can understand
being frustrated at a system that is failing people – even though it doesn’t
personally impact you, but you cannot in any way understand how I feel.<o:p></o:p></p>
<p class="MsoNormal">She mistakenly told me she can and she does understand how I
feel.<o:p></o:p></p><p class="MsoNormal">I paused. </p>
<p class="MsoNormal">I reminded her that she has never once in her life walked in
my shoes. Never. For that reason alone, you cannot know how I feel. It literally
is not possible.<o:p></o:p></p>
<p class="MsoNormal">To which she replied with the instructions on how to return
the paperwork. <o:p></o:p></p>
<p class="MsoNormal">Please don’t do this to people. </p><p class="MsoNormal">There are things in life
that I don’t know how it feels – some that I’ll never know and some that I’ll
eventually know but thankfully haven’t experienced yet, like the loss of a
parent. I don’t know how my friends who grieve the personal losses of parents or spouses
or a child feel. I don’t know how my friends who have been diagnosed with cancer
feel. I don’t know how people who have gifted children feel. I don’t know how my
friends who can’t have children feel. I don’t know how leaving your child at
college hours away feels. I don’t know how it feels to learn that your child is
getting married or having a baby. I don't know how it feels to have a child or spouse in the military. I can’t know these things because it’s not
the world I live in. <o:p></o:p></p>
<p class="MsoNormal">It doesn’t mean I can’t be there for them. It doesn’t mean
that I can’t be a shoulder or offer help or feel hurt or happiness for them or celebrate or cry with them –
but that is different than “knowing how they feel” and it is disrespectful for
me to insinuate that I know… positive or negative. <o:p></o:p></p><p class="MsoNormal">We can be amazing and supportive to friends, family, and strangers without "knowing" how they truly feel. We can and we should. </p>
<p class="MsoNormal">So, can we please stop that? Can we please get rid of that
phrase? </p><p class="MsoNormal">I appreciate your love. I
appreciate your support. I appreciate your friendship. I appreciate you. I
value your role in my life. But please do not take that as you know how it
feels to have a 22-year-old who still needs help in the bathroom when your kid
is graduating college, working a full-time job, having a baby, buying a house,
traveling the world – because you don’t know, just like I don’t know how you
feel. I can’t even imagine; it is simply too foreign to me. If you do have a 22-year-old who still needs help in the bathroom, you can totally say it, you understand that. Just like my friends whose kids are away at college can relate to each other with their feelings because they both experience it. I can be part of the conversation and love to be but I can't "know" how they feel.<o:p></o:p></p>
<p class="MsoNormal">We can be there for each other in this world without honestly knowing
and understanding how someone feels. We can learn from them, we can support them,
we can celebrate with them, we can mourn with them, we can worry with them – without
understanding exactly how they are feeling. And we are better for doing that,
for just being present and acknowledging how *they* feel without injecting yourself
into the situation. <o:p></o:p></p>
<p class="MsoNormal">Please don’t discredit what someone else is going through by
saying you “know” when there is no way you can. Trust me, I’ve discussed this
with other special needs parents – my response was mild compared to what many
of us are thinking but hold back on saying. <o:p></o:p></p>
<p class="MsoNormal">I understand this lady was trying to comfort me but it did the
opposite. She can’t relate to my life but that doesn’t mean she couldn’t be
supportive. She could have said, “I imagine this is frustrating” or “I wish
there was something I could do” or “I am sorry that the system is so broken”
all of those things validate my feelings and frustration – but telling me you “know”
and you “know exactly” when you have no clue what my life is like is simply disrespectful.<o:p></o:p></p>
<p class="MsoNormal">We can do better people. <br />
<br />
I can do better about not snapping. I can. Part of me wants to, the other part
of me feels old and exhausted and just wants to have a conversation without having
to help someone be a better human. But I know I can, especially since I need to
work on being a better human, too. I really do.<br />
<br />
That’s it. <br />
<br />
That’s my rant. <o:p></o:p></p>
<p class="MsoNormal">That’s my request. Please think about your words. They do
have an impact. <o:p></o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-28744139542361940842021-11-29T21:53:00.002-08:002021-11-29T23:13:18.406-08:00Willow Wishes<p>There isn’t a Willow without a Parker. I believe almost every dog has an
incredible ability to sense when something is wrong. I’ve seen this with many
great dogs. And, like Willow, I’ve seen some even respond appropriately to help
in those situations even though they have not had any formal training.</p><p class="MsoNormal">
<br />
When Willow joined our family, I was anxious… anxious on if she would or could
bond with Parker. I truly needed her to for this to work seamlessly. (We would
have made it work no matter what but seamless is always preferred!). So when we
went to pick out our sweet girl, I let the puppies do the picking. <br />
<br />
I watched as they all ran toward Parker, until he started to jump and squeal
with his hands close to his face. When that happened all of the puppies, but
one turned and made a beeline to A. That one puppy, though, with the green collar
with markings, she didn’t stop. Instead, she ran right to him, he scooped her
up and told her how much he loved her while I quickly checked the collar. We
passed her around and put all the puppies back down to play. She stayed closest
to Parker. She knew. She knew she was up for this “job” of caring for him, of
making his life easier and she hasn’t left his side since that day that she
picked him.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-XOrtec3Evwo/YaW4-M1kR4I/AAAAAAAB32E/B1ochfcM_5wQmTxY-q5VqV9zt-8lDp4nQCLcBGAsYHQ/s960/97378695_10222658758206554_1502353309300686848_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-XOrtec3Evwo/YaW4-M1kR4I/AAAAAAAB32E/B1ochfcM_5wQmTxY-q5VqV9zt-8lDp4nQCLcBGAsYHQ/s320/97378695_10222658758206554_1502353309300686848_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-eRNsnD6tZzw/YaW482SH7mI/AAAAAAAB318/mgDRcfaTgL8qHUV_nv_4E65OYOPvhfOhgCLcBGAsYHQ/s960/96761329_10222658761406634_5450174393223217152_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-eRNsnD6tZzw/YaW482SH7mI/AAAAAAAB318/mgDRcfaTgL8qHUV_nv_4E65OYOPvhfOhgCLcBGAsYHQ/s320/96761329_10222658761406634_5450174393223217152_n.jpg" width="240" /></a></div><br /><p class="MsoNormal">Willow knows when Parker is stressed or anxious. If she isn’t
already by his side, she goes to him and doesn’t leave him until he is ready
for her to go. Even when she is at her most favorite place on earth… Grandma
and Grandpa’s house.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Recently during a visit to Grandma and Grandpa’s, Parker abruptly
decided he was done, which is usually how Parker decides he is done – abruptly and
aggressively. Willow stopped playing with Jessie (their dog) and looked at
Parker, I pointed to him and she went to him. She really wanted to keep playing
with Jessie but she stopped with that nudge and went to her boy where she knew
she should be. She jumped up on the couch with him, laid on her back across his
lap and lifted her nose to his face to give him kisses. When he was calm, I
asked him if he wanted to wait in the car – knowing it would still be a bit
before we left – he said yes. He went to the car and without me saying a word,
Willow followed.<o:p></o:p></p>
<p class="MsoNormal">Together they sat in the car listening to music until we
left. Twice I tried to get her to come out and run one more time, both times
she refused. Until she is sure he is ok, she won’t leave his side. She’s a year
and a half old – that’s pretty dang amazing to me.<o:p></o:p></p>
<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-j_7lMfJe-xI/YaW5VzwR1QI/AAAAAAAB32o/VjxH28Qy26IrZgGUqFoWqDbUhV92I0u_gCLcBGAsYHQ/s960/103248710_10223006343295964_4833613754006797494_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-j_7lMfJe-xI/YaW5VzwR1QI/AAAAAAAB32o/VjxH28Qy26IrZgGUqFoWqDbUhV92I0u_gCLcBGAsYHQ/s320/103248710_10223006343295964_4833613754006797494_n.jpg" width="240" /></a></div><br /><p class="MsoNormal">I have the honor of watching these two every single day. Every day, I’m amazed at the difference they make in each other and in awe of their bond.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-53Ffzi1bSs4/YaW5kjnbPfI/AAAAAAAB33I/shxFvyTnT3wbRj40sq8wJrrWPo14hIsDwCLcBGAsYHQ/s960/96405103_10222658765166728_6546883520478838784_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-53Ffzi1bSs4/YaW5kjnbPfI/AAAAAAAB33I/shxFvyTnT3wbRj40sq8wJrrWPo14hIsDwCLcBGAsYHQ/s320/96405103_10222658765166728_6546883520478838784_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-sCEQ9Xv3hZw/YaW5lLt7-1I/AAAAAAAB33M/bhM3YKuJQDoYzwsrF7EkA1mVck5SLiRbwCLcBGAsYHQ/s960/96683963_10222664155181475_1319493294262059008_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-sCEQ9Xv3hZw/YaW5lLt7-1I/AAAAAAAB33M/bhM3YKuJQDoYzwsrF7EkA1mVck5SLiRbwCLcBGAsYHQ/s320/96683963_10222664155181475_1319493294262059008_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qHjO_LmQk7o/YaW5lmkHzJI/AAAAAAAB33Q/FJx4GORbodkvjkx2-_r65sFkmBSm6FZ1gCLcBGAsYHQ/s960/96848549_10222658778847070_4643169309823074304_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-qHjO_LmQk7o/YaW5lmkHzJI/AAAAAAAB33Q/FJx4GORbodkvjkx2-_r65sFkmBSm6FZ1gCLcBGAsYHQ/s320/96848549_10222658778847070_4643169309823074304_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-CNFsHQXL7oM/YaW5isR9YFI/AAAAAAAB32s/wJ5A8AoEs_UT1pj5PI_o6Sk3gI5PQfpXwCLcBGAsYHQ/s1440/118084445_10223716369566177_7912439248891061607_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1072" height="320" src="https://1.bp.blogspot.com/-CNFsHQXL7oM/YaW5isR9YFI/AAAAAAAB32s/wJ5A8AoEs_UT1pj5PI_o6Sk3gI5PQfpXwCLcBGAsYHQ/s320/118084445_10223716369566177_7912439248891061607_n.jpg" width="238" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-f4221MHqNyY/YaW5ikZRRRI/AAAAAAAB320/uWeAUoJyW2ogv99LIBFZs303O-T0rYwawCLcBGAsYHQ/s1291/120656067_10224255966175755_947450741285016010_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="718" data-original-width="1291" height="178" src="https://1.bp.blogspot.com/-f4221MHqNyY/YaW5ikZRRRI/AAAAAAAB320/uWeAUoJyW2ogv99LIBFZs303O-T0rYwawCLcBGAsYHQ/s320/120656067_10224255966175755_947450741285016010_n.jpg" width="320" /></a></div><br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-_8hSlDKbNzE/YaW5i8JkqmI/AAAAAAAB324/0DdVrJAdDbojPst589Ws2Hf7wegcfrrwgCLcBGAsYHQ/s960/128811530_10224891695628594_2777100005520771623_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-_8hSlDKbNzE/YaW5i8JkqmI/AAAAAAAB324/0DdVrJAdDbojPst589Ws2Hf7wegcfrrwgCLcBGAsYHQ/s320/128811530_10224891695628594_2777100005520771623_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-zZj3jIHfcQs/YaW5jOVkL4I/AAAAAAAB328/zMTfN9pbDMMWniyw1zHw8wAnMuP0NfhTACLcBGAsYHQ/s960/129018170_10224891695908601_4713762437755065877_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-zZj3jIHfcQs/YaW5jOVkL4I/AAAAAAAB328/zMTfN9pbDMMWniyw1zHw8wAnMuP0NfhTACLcBGAsYHQ/s320/129018170_10224891695908601_4713762437755065877_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-gcZPlZgeuyQ/YaW5jsQu1KI/AAAAAAAB33A/DkbmPmUYOAw5br6ObduD_BvmU_HXj5_fQCLcBGAsYHQ/s960/129028237_10224891695348587_7703388066487804805_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-gcZPlZgeuyQ/YaW5jsQu1KI/AAAAAAAB33A/DkbmPmUYOAw5br6ObduD_BvmU_HXj5_fQCLcBGAsYHQ/s320/129028237_10224891695348587_7703388066487804805_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;">I sometimes wonder what Willow thinks about beyond how much
she loves her boy. She’s happy, she’s spoiled, she’s extremely loved – and I
think she knows all of that. I wonder when she sees people look at her boy what
she wishes they knew about him and from that Willow’s Wishes came to be.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><p class="MsoNormal"><o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-nf__tkuyTsI/YaW5900AoQI/AAAAAAAB330/jxFoS_c7SeIrTk_fdivJmuCKHIESBgCRQCLcBGAsYHQ/s960/123768870_10224574499018877_2919017674366110559_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-nf__tkuyTsI/YaW5900AoQI/AAAAAAAB330/jxFoS_c7SeIrTk_fdivJmuCKHIESBgCRQCLcBGAsYHQ/s320/123768870_10224574499018877_2919017674366110559_n.jpg" width="240" /></a></div><br /><p class="MsoNormal"><br /></p>
<p class="MsoNormal"><b><i><span style="font-size: large;">This is what I believe Willow wishes you knew.</span><o:p></o:p></i></b></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you could see beyond his
disability, like she does, straight to his heart and soul to see the incredible
guy that he is. Then you could see how much his heart loves, even when he
cannot express it and how much it breaks when he can’t say or do things he
wishes he could. Things people take for granted, like independence. Parker
needs someone with him 24/7. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew how much he loves others.
If you are someone important in his life, never take that for granted. That
list is short, and those people are treasured. If you make that list, he doesn’t
have high expectations, but he knows when he has been forgotten. It’s hard as
friends get older and move forward with their lives. But it’s not that hard to
check in, to drop him a text, call him on messenger, or stop by and see him. If
you think that’s just too much to ask, Willow wishes you could live in his mind
and body for just a day because then you would realize this is the smallest of
requests and understand how much he notices when you stop responding to him. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that his laugh is the
best! It is pure and it is contagious, truly one of the greatest sounds. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that you knew his struggles. She
wishes you knew the amazing difference her plopping her 90 lb body on him makes
when he is overwhelmed to help regulate his body and senses. She wishes you
could feel the release of his tension when he is mid-meltdown and she puts her
nose in his face, distracting him with kisses until he is ok. Like he is
holding up a falling building on his shoulders and Hulk comes in and lifts it
off of him, freeing him from that weight – that relief is felt by Willow every
single time. She wishes you could feel the difference in him when that weight
it lifted and how he relaxes when the tension leaves his body.<o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that as much as she sees her boy
as perfect, she could see him enjoy life every day without the significant struggles
he faces. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that being 22 but
functioning as a young child is a challenge every single day that you can help
change.<o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that you understood just how
incredibly hard life with Fragile X syndrome is every single day for her boy.
Every day there is a challenge. Every day takes effort. Every day has laughs.
Every day has frustrations. Every day is exhausting. Fragile X syndrome is the
leading cause of inherited intellectual disability and leading genetic cause of
Autism and it’s hard. It’s really hard.<o:p></o:p></p><p class="MsoNormal">Willow wishes you knew she loves naptime with Parker as much as she loves running at the park with him.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TqmrJ8fPzuY/YaW7wXQPxOI/AAAAAAAB34E/TQfM1InXfxY0H7h-Asz56r4RxyyOZySSQCLcBGAsYHQ/s960/99424452_10222822867669188_6266784019929628672_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-TqmrJ8fPzuY/YaW7wXQPxOI/AAAAAAAB34E/TQfM1InXfxY0H7h-Asz56r4RxyyOZySSQCLcBGAsYHQ/s320/99424452_10222822867669188_6266784019929628672_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-nBAavmNzPKQ/YaW7wdls4YI/AAAAAAAB34M/Dl1rZM-BQuU1ZBFTUsBxC9ANwcC2ZxT-ACLcBGAsYHQ/s2015/241645824_10227253140543241_4760987628474392497_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2015" data-original-width="1504" height="320" src="https://1.bp.blogspot.com/-nBAavmNzPKQ/YaW7wdls4YI/AAAAAAAB34M/Dl1rZM-BQuU1ZBFTUsBxC9ANwcC2ZxT-ACLcBGAsYHQ/s320/241645824_10227253140543241_4760987628474392497_n.jpg" width="239" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-J52thAFtoJE/YaW7wefSApI/AAAAAAAB34I/B_J2ZPVj6vMLY0nv4pmFY0GTwxmzds3EACLcBGAsYHQ/s1440/255029899_10227652477646419_7105505477337328561_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1440" height="240" src="https://1.bp.blogspot.com/-J52thAFtoJE/YaW7wefSApI/AAAAAAAB34I/B_J2ZPVj6vMLY0nv4pmFY0GTwxmzds3EACLcBGAsYHQ/s320/255029899_10227652477646419_7105505477337328561_n.jpg" width="320" /></a></div><br /><p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that every night when
Parker goes to bed, he yells “Goodnight Willow, I love you” and that it is the
sweetest thing ever.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that you understood the fear
that I have each night when I go to bed about what the future will bring, that
no matter how much I plan that it won’t be enough. That I worry about who will
love him unconditionally as I do when I am gone. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you understood that while she is
very young, she won’t be here forever and that is just one of many reasons why
she needs your help. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that you knew that the key to
Parker’s independence and his future is in funding Fragile X research. She
wishes you knew that clinical trials are showing amazing improvement in adults
older than Parker. <br />
<br />
<b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that an effective treatment for Parker IS realistic,
and it will happen. How fast it happens depends on all of us. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew how important having
that available to him is to her and to our family. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew how important her boy
is to her, that she loves Parker more than anyone – even Grandpa. Willow wishes
you knew how much she wishes she could enjoy life with him without his
struggles so they could do even more together.<o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that while his language
isn’t perfect, his mind isn’t perfect, his life isn’t perfect… his heart is and
just as he would do anything for you she hopes you will do this for him.<o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew that FRAXA is accelerating
that research at an amazing pace and they need your help. <o:p></o:p></p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you would make a donation to
FRAXA Research Foundation in honor of Parker – or in honor or Willow and Parker
today.<o:p></o:p></p>
<p class="MsoNormal"><a href="https://www.fraxa.org/"><b>If you donate to FRAXA on GivingTuesday</b></a> (11/30/21),
donations up to $50,000 are being met with a 3:1 match, quadrupling your
impact! <o:p></o:p></p>
<p class="MsoNormal"><b><a href="https://www.fraxa.org/annual-appeal/">If you donate during the Annual Appeal</a></b>, it will help them
meet their end-of-year goals. <o:p></o:p></p>
<p class="MsoNormal"><a href="http://www.fraxa.org"><b>If you donate monthly</b></a>, you can know that every single month
you are helping the researchers get closer to that effective treatment that
will change Parker’s life. <o:p></o:p></p>
<p class="MsoNormal">No matter what time of year this message finds you, you can
make a difference by donating at <a href="http://fraxa.org"><b>fraxa.org </b></a><o:p></o:p></p><p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> that if you are not in a position to donate that you will share her love for Parker and hope for his future with your family and friends.</p>
<p class="MsoNormal"><b><i><span style="font-size: medium;">Willow wishes</span></i></b> you knew how much this means to her and that
she can’t wait to share more of their adventures together with you. <o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-gtBC0jFdV5E/YaW6M4CZKLI/AAAAAAAB334/mfP7BKPWY7QPbaLslpyR2M8Zh8es_iAxgCLcBGAsYHQ/s1108/242800108_10227353992544478_5190222685038781580_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1108" height="312" src="https://1.bp.blogspot.com/-gtBC0jFdV5E/YaW6M4CZKLI/AAAAAAAB334/mfP7BKPWY7QPbaLslpyR2M8Zh8es_iAxgCLcBGAsYHQ/s320/242800108_10227353992544478_5190222685038781580_n.jpg" width="320" /></a></div><br /><p class="MsoNormal"><b><span style="font-size: medium;"><i>Willow wishes</i></span></b> you knew that just as she makes a difference in Parker's life every day, so you can! You can make a difference in his future by supporting FRAXA who is funding research that will lead to effective treatments and ultimately a cure for Fragile X syndrome. </p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-57145392339359629592021-11-15T20:08:00.003-08:002021-11-15T21:16:05.129-08:00Unbreakable Bonds.<p> Sometimes writing helps. Sometimes writing hurts just as
much as it heals. This hurts. That is your Kleenex warning.</p><p class="MsoNormal"><br /><o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-8_Pe4aAutH0/YZMs872nAwI/AAAAAAAB2gM/wTCnYQ9Ti-AgItE1HLzIpP_Xgq_TrP2NACLcBGAsYHQ/s1084/122738308_10224500891858744_5625892914574252018_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1084" data-original-width="725" height="320" src="https://1.bp.blogspot.com/-8_Pe4aAutH0/YZMs872nAwI/AAAAAAAB2gM/wTCnYQ9Ti-AgItE1HLzIpP_Xgq_TrP2NACLcBGAsYHQ/s320/122738308_10224500891858744_5625892914574252018_n.jpg" width="214" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>
<p class="MsoNormal">I’m starting at the beginning. If I start where my heart is we will never make it through this.</p><p class="MsoNormal">30 years ago while my sister, Dawn, was attending Northern
Illinois University she called my parents to let them know she bought a horse.
A yearling to be exact. While living in DeKalb and going to college, she made
the awesome decision to buy a horse that she would need to board, train, and could
not ride. To say that everyone in my family had the best discussion of how my “could
do no wrong” sister, the oldest of us 3 girls just made the most ridiculous
purchase is an understatement. To this day, I treasure how much my
parents shook their heads at her for this decision, it was pretty awesome for the
younger, frequently making ridiculous decisions version of me, to witness.<o:p></o:p></p>
<p class="MsoNormal">That is the story, that I know, of how Cochise a.k.a. “Crazy
Horse”, became a part of our family. I’m sure there are details that Dawn
remembers that led her to Cochise but they are not as important to me as the
memory of everyone saying she lost her mind. <o:p></o:p></p>
<p class="MsoNormal">Cochise, who we usually referred to as “Chise” eventually
made her way to my parents’ house. She was trained. She went through her squirrely
years and finally, matured into the incredible horse that we all fell in love
with. <br />
<br />
Chise was always gorgeous. Her mane and tail gorgeous combinations of blonde,
brown, and black hair that always lightened in the summer like it was soaked in
Sun-In (I’m aging myself). When A started riding independently, Chise was the
go-to horse. Chise would be the most rotten mare for everyone else but the
second A was on Chise, a new horse emerged. Chise loved A and was the best
version of herself anytime A was on her back. <o:p></o:p></p>
<p class="MsoNormal">As Chise aged arthritis crept in, something A and Chise had
in common – bad joints. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-8-R-e0ylhjA/YZMrzwmDKSI/AAAAAAAB2cQ/sM5-LJ1YsbglnFCLwksY0gxRVdmFg5gVQCLcBGAsYHQ/s756/256800646_320179259573515_2983912844112545475_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="756" data-original-width="368" height="320" src="https://1.bp.blogspot.com/-8-R-e0ylhjA/YZMrzwmDKSI/AAAAAAAB2cQ/sM5-LJ1YsbglnFCLwksY0gxRVdmFg5gVQCLcBGAsYHQ/s320/256800646_320179259573515_2983912844112545475_n.jpg" width="156" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">A showing off their bad joints.</td></tr></tbody></table><br /><p class="MsoNormal">A would ride Star more often and Chise enjoyed
retirement in the pasture. When we love in our family, we love forever. Animals
don’t “age out” at our house, they don’t become useless or without purpose when
they are old. They retire and are given their best life for all of the years
they gave us so much joy. It’s been a few years since anyone has ridden Chise. Last
year when we knew our time was limited, A spent some time on Chise’s back while
in the yard. It was fitting for A to be the last person to ride her.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-crP6lNKOg34/YZMtcIUBREI/AAAAAAAB2h0/kK2BOnbYM_Q48GszvWYHOABm4fihY9jlwCLcBGAsYHQ/s960/258365739_1959036087604449_9141592245877278347_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://1.bp.blogspot.com/-crP6lNKOg34/YZMtcIUBREI/AAAAAAAB2h0/kK2BOnbYM_Q48GszvWYHOABm4fihY9jlwCLcBGAsYHQ/s320/258365739_1959036087604449_9141592245877278347_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-b69x0f65oaE/YZMtakXA_CI/AAAAAAAB2hg/A9XxYU5tVZUTSQb5FZZqCwiaiU2wYS6jgCLcBGAsYHQ/s960/123003269_10224502388536160_4365196974011368233_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://1.bp.blogspot.com/-b69x0f65oaE/YZMtakXA_CI/AAAAAAAB2hg/A9XxYU5tVZUTSQb5FZZqCwiaiU2wYS6jgCLcBGAsYHQ/s320/123003269_10224502388536160_4365196974011368233_n.jpg" width="213" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-xDKN3O9TBAk/YZMtbDlvnWI/AAAAAAAB2hs/SLcuyTiC12Yuu14TIIV1es-ImweuL1tvACLcBGAsYHQ/s960/123044508_10224502386176101_4512140947056936624_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://1.bp.blogspot.com/-xDKN3O9TBAk/YZMtbDlvnWI/AAAAAAAB2hs/SLcuyTiC12Yuu14TIIV1es-ImweuL1tvACLcBGAsYHQ/s320/123044508_10224502386176101_4512140947056936624_n.jpg" width="213" /></a></div><br /><p class="MsoNormal"><br /></p><p class="MsoNormal">
<br />
We let A know last year that we were not sure how much time we had left. After
A lost their great-grandma Lovadee, followed by their Grandpa Gordon and
Grandma Paula last year – my mom made the decision to wait. She felt Cochise
was doing well enough and that we could keep her comfortable enough to make it
through the winter… then spring… then summer. But, we knew she couldn’t make it
past fall of this year. <o:p></o:p></p>
<p class="MsoNormal">Once again, we broke the news to A, that this time we were
truly out of time. We did not want Chise to ever suffer, and there was no way
for her to make it through the winter without suffering. We just couldn’t do
that even though we wanted to keep her here forever.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-dJRuNA5IIdI/YZMtnSsWvQI/AAAAAAAB2h4/9nMb2VkTCW0JsupXhbKSAFp02S4FoPqmgCLcBGAsYHQ/s960/122872786_10224488000616471_7807306640914600608_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://1.bp.blogspot.com/-dJRuNA5IIdI/YZMtnSsWvQI/AAAAAAAB2h4/9nMb2VkTCW0JsupXhbKSAFp02S4FoPqmgCLcBGAsYHQ/s320/122872786_10224488000616471_7807306640914600608_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>
<p class="MsoNormal">The past 2 weekends, I’ve taken A home to my parents’ house
to spend time with Chise. In the nice weather last week, they spent time in the
yard, Chise eating green grass while A loved on her and thanked her for all of
their years together.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-IIRmlnf57PQ/YZMuFCYYWII/AAAAAAAB2kk/FuIVLNRB_YMMKKNC4wrqNK4hOvjyB7_DACLcBGAsYHQ/s756/256811912_283999070314605_5480890741276579899_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="756" data-original-width="368" height="320" src="https://1.bp.blogspot.com/-IIRmlnf57PQ/YZMuFCYYWII/AAAAAAAB2kk/FuIVLNRB_YMMKKNC4wrqNK4hOvjyB7_DACLcBGAsYHQ/s320/256811912_283999070314605_5480890741276579899_n.jpg" width="156" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-nHAeNGSoqwU/YZMuFj9E8CI/AAAAAAAB2ko/hdOwz3n8OMU1RVrOAwC_nPYx-PfzVHbLQCLcBGAsYHQ/s756/256864724_579859076439774_6084322979189313138_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="756" data-original-width="368" height="320" src="https://1.bp.blogspot.com/-nHAeNGSoqwU/YZMuFj9E8CI/AAAAAAAB2ko/hdOwz3n8OMU1RVrOAwC_nPYx-PfzVHbLQCLcBGAsYHQ/s320/256864724_579859076439774_6084322979189313138_n.jpg" width="156" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Vl31jYB0e8U/YZMt6RK7PxI/AAAAAAAB2i8/jlPJLDCUd6kR6t7wH_ElxH_1PdbUD19EgCLcBGAsYHQ/s2048/254618343_309331384087829_4126367712192194887_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-Vl31jYB0e8U/YZMt6RK7PxI/AAAAAAAB2i8/jlPJLDCUd6kR6t7wH_ElxH_1PdbUD19EgCLcBGAsYHQ/s320/254618343_309331384087829_4126367712192194887_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jVF87zhQxdg/YZMt7jUuDII/AAAAAAAB2jM/dD2VhGr_DUk_3JSBT2GEYS2eitZFF-o_wCLcBGAsYHQ/s2048/254693745_626884358676947_325048099038462193_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-jVF87zhQxdg/YZMt7jUuDII/AAAAAAAB2jM/dD2VhGr_DUk_3JSBT2GEYS2eitZFF-o_wCLcBGAsYHQ/s320/254693745_626884358676947_325048099038462193_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ImvSYFRgiXo/YZMt7q3ywhI/AAAAAAAB2jU/fdDsXDs0qHI09AGVlBy2ymewJGGF6Gp8wCLcBGAsYHQ/s2048/254806303_358605849349750_4323287938043921649_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-ImvSYFRgiXo/YZMt7q3ywhI/AAAAAAAB2jU/fdDsXDs0qHI09AGVlBy2ymewJGGF6Gp8wCLcBGAsYHQ/s320/254806303_358605849349750_4323287938043921649_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-EX1VQd7nII0/YZMuGsD71gI/AAAAAAAB2kw/3TTXRWwZ9CUraTPtsX3rd0xS64HrV6ZqQCLcBGAsYHQ/s756/257194219_514892183309806_3171735468472416525_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="756" data-original-width="368" height="320" src="https://1.bp.blogspot.com/-EX1VQd7nII0/YZMuGsD71gI/AAAAAAAB2kw/3TTXRWwZ9CUraTPtsX3rd0xS64HrV6ZqQCLcBGAsYHQ/s320/257194219_514892183309806_3171735468472416525_n.jpg" width="156" /></a></div><br /><p class="MsoNormal">Yesterday, the weather was not great for being in the yard
so A and Chise spent hours in the barn together one last time.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">It’s hard to say Goodbye. It’s hard to let go. Even when you
have a date and time, saying Goodbye never gets easier. We are thankful for
knowing, thankful for the ability to have one more goodbye. It’s never enough
but we were thankful to have it.<o:p></o:p></p>
<p class="MsoNormal">Chise has been a part of our family for almost 30 years.
That’s a long time to love anything, a person or an animal. For A’s entire
life, Chise has been a part of my parents’ place. They’ve covered hundreds of
miles of trails together in multiple states. While this goodbye hurts me, this
goodbye has devastated A. Nothing hurts more than seeing your kid hurt. <o:p></o:p></p>
<p class="MsoNormal">While A hurts, I’m thankful for the memories and there are
thousands of them for these two. I’m thankful for the experiences they shared,
for the talks between the two of them, for the sense of peace Chise brought to
my baby. <br />
<br />
Today, Chise was laid to rest. She took her final breath with my mom by her
side. She knew she was loved, we all told her, we all thanked her, we all
appreciated the years we had together. <br />
<br />
As thankful as I am for the amazing memories A has with Chise, I’m also
thankful for being able to remember that insane decision my sister made and
enjoy the laugh that brings me… even if it means she knew something then that
we couldn’t see but appreciate now.<br />
<br />
Go run the pastures of Heaven, Chise. We are glad you no longer hurt, we miss you
already, and thank you for the past almost 30 years that you were a part of our
family. You’ll be missed and forever loved.</p><p class="MsoNormal"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-I6qXqyBUHRU/YZMuocW1aBI/AAAAAAAB2mM/ttDsXw6W4P8sPLVEX_CX52qAotziJek1ACLcBGAsYHQ/s960/123271532_10224555876153317_1152975013604853122_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://1.bp.blogspot.com/-I6qXqyBUHRU/YZMuocW1aBI/AAAAAAAB2mM/ttDsXw6W4P8sPLVEX_CX52qAotziJek1ACLcBGAsYHQ/s320/123271532_10224555876153317_1152975013604853122_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-zgrr8vQECNI/YZMumsacACI/AAAAAAAB2l8/V4OSaWv2cb0Is1LcqtYrnd5FGg3CsqwoACLcBGAsYHQ/s960/122964857_10224502322094499_5834596227613969355_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://1.bp.blogspot.com/-zgrr8vQECNI/YZMumsacACI/AAAAAAAB2l8/V4OSaWv2cb0Is1LcqtYrnd5FGg3CsqwoACLcBGAsYHQ/s320/122964857_10224502322094499_5834596227613969355_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-yTO4mNn_GIM/YZMumoB6XGI/AAAAAAAB2mA/m-HhWBId8sU7XFnS7bZY5Z7LEiCkDj3lACLcBGAsYHQ/s960/122993429_10224502309094174_2124889601542372327_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://1.bp.blogspot.com/-yTO4mNn_GIM/YZMumoB6XGI/AAAAAAAB2mA/m-HhWBId8sU7XFnS7bZY5Z7LEiCkDj3lACLcBGAsYHQ/s320/122993429_10224502309094174_2124889601542372327_n.jpg" width="320" /></a></div><br /><p class="MsoNormal"><br />
<br />
<br />
<br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com1tag:blogger.com,1999:blog-1394541577708014059.post-60324029123439300962021-08-23T06:48:00.001-07:002021-08-23T06:48:15.623-07:00The moments that make you think. <p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Parker has been doing this thing for
the past couple of months where he wants to take a nap – well, he wants US to
take a nap, with Willow in the “big bed” (my bed). I’m not going to lie, after
22 years of this boy not sleeping, I’m all for a nap whenever I can get one! It’s
been a nice adjustment to many of our days.<o:p></o:p></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-QxV4V2bqRIs/YSOmgJmalxI/AAAAAAABwl8/b3Js8EafgwcXC4finIMHtw5gvz9ZKgJ7gCLcBGAsYHQ/s700/naps-are-always-a-good-idea-prints.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="700" data-original-width="700" height="320" src="https://1.bp.blogspot.com/-QxV4V2bqRIs/YSOmgJmalxI/AAAAAAABwl8/b3Js8EafgwcXC4finIMHtw5gvz9ZKgJ7gCLcBGAsYHQ/s320/naps-are-always-a-good-idea-prints.jpg" width="320" /></a></div><br /><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span><p></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">It also means that I slow down. I’m
not given an option but to stop during this time. Stopping isn’t something I do
easily, or, honestly, something that I do well. When I do, the million tabs
that are open in my mind constantly running to-do lists and ideas through my
mind laser focus on one thing – that sweet young man laying across from me, on
the other side of the 90-pound dog.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">As I lay there in the dark (I have
room darkening curtains, it is dark!), with my eyes adjusting to see the sweet silhouette
of his face as his sleepy eyes fight to stay open with blinks that get longer
and longer until they stay closed. As his eyes close, warm tears flood down my
cheeks from mine, this is what happens when I stop. I look at him and think of
all of the things I wish I had done for him. I think of the wisdom I have now
that I wish I had when he was little. I think of everything I wish I could have
known to do and wonder how much different his life would be today, or would it?
I’ll never know. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Through my tears, I don’t see a 22-year-old
young man, I see my sweet young boy. I see his innocence; I see the world
differently and I can’t help but wonder… have I done enough? <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I wonder if I’ve prepared him enough
for the next phase of his life and how much COVID has set us back on that plan.
(Our timeline remains the same, he’s just much more attached to me after a year
and a half of being joined at the hip, so we have some independence to make up.)<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">There is time. I remind myself there
is time but with each passing day, we are one day closer to this new chapter in
his life. In my life. In our lives. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I wonder what our lives will be like
when I’m not here to care for his every need, every day. While I hope that I
will have him prepared for that, have I prepared myself for what my life will
be like? And what will it be like? Besides being extremely quiet. And will we be ok? In
all fairness, will I be ok?<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I am sure that all parents go through
this when their children leave the nest, but as a special needs parent, my nest
is a bit different than some. While my friends in the special needs community
can relate, my friends who are not but have watched their children move onto the
next phase of their life never were in my position where someone depended on
them 24/7 to get through their day. Parker will always need assistance, a round-the-clock caregiver, and I have to come to terms with the reality that at some
point that won’t be me. And that some point, is just a couple of years away.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Being a special needs parent truly
defines you. While I have my own identity and Parker has his own, we also have
our identity which is a big part of who we are. While some people can’t wait
for the moment when they let go of that part of them, I don’t know many special
needs parents who do so easily. It brings a new level of trust in his
caretakers, his roommates, and the people in the community that he will
interact with. He will be walking through this world without his mom’s laser
beam eyes providing a warning for anyone who starts to look at him with
anything other than respect. No matter how much someone else loves him and
cares for him, no one (except maybe his sibling) can give that look that
reaches deep into someone’s soul as a warning as I can.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">This next step will be important for
him – and for me. As I’ve talked about many times, our magic age for Parker was
always 25. At 25 we would be sure that he was living as independently as
possible. I have that plan and we are working towards it. It will give us both
time to see that he can happily and successfully live without me, which is
important. One of the worst things that could happen to Parker would be to
only know living with me and lose me. It is important for him to learn that he can
be successful on his own and it’s important for me to see him succeed. I’ve
heard the horror stories of special needs adults who only know life with their parents
and then lose them – and in turn, their entire world, and the unbelievable
stress, confusion, and regression that brings for them.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I focus so much on the plan and
everything that I need in place, it is only when he makes me stop that I look
at my sweet, innocent boy and wonder if I have done enough. I’m not asking for
people to flood me with “You are such a good mom” comments, I know I am a good
mom. I do the best that I can and that comes with success and failures. As we
lay there and I watch him drift off to sleep over the sounds of Willow’s
snores, my mind focuses more on the failures. Mostly the failures that were out
of my control as I simply did not know at the time everything that I do now.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">As those hot tears stream down my face,
I quietly apologize to him for everything I didn’t know, for the challenges he
faces, for the difficulty of his life and how very much I wish he had the
opportunities of his friends to simply live without Fragile X. He deserved a
life better than what Fragile X gave him. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Life kind of stinks in that way, so
much of the knowledge that you need when your kids are younger, you don’t learn
until they are older. In our world, they are always learning and discovering
with Fragile X, new techniques for working through challenging behaviors are
shared, and the accessibility to those who have walked this path before us are so
much better thanks to technology.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">It is part of the reason why sharing
our story, our challenges, and our successes are so important to me. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I was talking recently with a mom who
said she feels like she hasn’t done enough. I can’t help but wonder if all
parents feel this way when their kids are young or if it is just for those of
us in the disability community. This mom has worked so hard to be sure that her
son has access to all of the therapies he needs, to the doctors that understand
his disability, and educates teachers, family members, friends, and her
community to better understand him. Her words and her path felt all too familiar.
As we talked, I reflected on everything I have done over the past 22 years,
fully aware of the progress that was made, and yet I still feel like I haven’t
done enough. While I tried to reassure this mom that she has gone above and
beyond, as she has, I couldn’t help but feel like I’ve failed my kids, too, and
have not done enough. I thought of it as I laid there with Parker in the dark,
watching him breathe as he slept so quietly. I could have done more. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">No part of me will ever understand why
life is this way, why some people are faced with such challenges and others are
not. I also appreciate that his challenges are far less than many and I am so
incredibly thankful to have him with me, especially as I have watched friends
not be this fortunate from other disabilities, cancer, or life’s tragedies. I understand
life could have been so much harder and try not to take for granted, even in these
moments, the amazing gift I have been given with my children.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Like everyone else, I can only do my
best. Sometimes that will be enough and sometimes it will fall short. In these
moments of rest, when I let my mind slow down, I cannot help but wonder if I
have done enough if my best was enough. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Eventually, I will drift off to sleep.
We are yet to have a day when I haven’t fallen asleep during these given opportunities.
When I wake up, every tab in my mind is open and going again reminding me there
is not time to reflect on what I didn’t do but instead to focus on what still
needs to be done and we keep pushing on while appreciating every moment we have
together, even the incredibly challenging ones. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">One way or another, we make life work.
As much as I fear the loneliness I’ll have after we move onto this next phase,
I wouldn’t change this plan for anything as it will truly give Parker the
independence he needs and time to shine. And I know, he will shine.<o:p></o:p></span></p><p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">And believe me, as hard as it is for me to slow down, and as hard as it is to worry that I haven't done enough, there is no way I'm passing up a chance to take a nap and cherish this time we have together. And... nap, I mean, really - never pass up a nap!</span></p>
<p class="MsoNormal"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-22296385161287298832021-07-24T21:54:00.005-07:002021-07-25T08:59:27.767-07:00Connecting, 30 years later.<p> Last week I started my day with a message from one of my
sisters linking me to my friend, Tom’s Facebook post where he had shared the
news that a classmate of ours from Olympia had passed away. In complete shock,
I scrolled through the pictures Tom had shared of Bob, just shaking my head in
complete disbelief.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">I only attended Olympia High School for a short time yet the
majority of my high school years, my freshman year through the middle of my
junior year. We moved to Hopedale after I finished 8<sup>th</sup> grade and then
moved again during my junior year. I always wonder if anyone remembers me from
my time there or if I was just a quick flash in and out of their lives that was
forgotten. <o:p></o:p></p>
<p class="MsoNormal">I have so many memories, though, so, so many of them. I had a lot of great times while I was at Oly.<br /><br />And some of those memories include Bob.<br /><br />Bob
was someone I saw every day as he sat by me in homeroom. We didn’t talk to me
my freshman year, I was – without a doubt – extremely overwhelmed by Olympia
which is like 8 times larger than where I grew up (and went back to for my
senior year) in Cambridge. My sophomore year, I came back confident and ready
to find my place at Oly – and totally out of my awkward stage. From that point
on, Bob and I chatted briefly almost daily in homeroom. Bob was a flirt, our
humor was pretty similar, and his smile added to his charm. <o:p></o:p></p><p class="MsoNormal"><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-z3URgQyutEI/YPztoIUMLkI/AAAAAAABvDg/bpAeSBWjzk4lH98DLxlUS7iyFGY1EMy8ACLcBGAsYHQ/s960/217397751_629986297967515_4181304051911343424_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-z3URgQyutEI/YPztoIUMLkI/AAAAAAABvDg/bpAeSBWjzk4lH98DLxlUS7iyFGY1EMy8ACLcBGAsYHQ/s320/217397751_629986297967515_4181304051911343424_n.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Bob Walt, Olympia class of '92</td></tr></tbody></table><br /><p class="MsoNormal">To hear he was gone, though, caught me off guard. I had
not seen or thought about him in 30 years – and I’m sure he had not thought of
me, either, but his death shook me and I’ve thought of it every day since.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Shortly after sharing about Bob’s passing, Tom shared that
he was going to be back in the area and was hoping to see some friends.
Everyone who knows me knows that last week was a huge one for me at work and I
was working non-stop to ensure it went off as smoothly and as awesomely as
possible. (And it was so, so, so extremely awesome!) on top of that, I had an
order for 15 dozen cupcakes for a wedding. So, I had a lot going on. <o:p></o:p></p>
<p class="MsoNormal">I was exhausted. My house had not been cleaned in 2 weeks,
and my yard is sadly neglected. And, I had the kids. I simply do not let people
into Parker’s world – and trust me everyone wants to be in Parker’s world. It is stressful for us both as expectations
are always high and life with Parker is unpredictable. As well-intended as
people are, even people in the Fragile X world, you simply cannot understand our
day-to-day life – I know I share a lot and people feel like they do but, trust
me, you and the last thing either of us needs is to be judged – or more anxiety.<o:p></o:p></p>
<p class="MsoNormal">But, Bob’s death just kept lingering over me. Life is so short
and so unpredictable. Life is too short for me to worry about if my house is
clean enough for anyone’s standards, if my yard isn’t as manicured as I’d like
for it to be, or if my little family isn’t enough for anyone.<o:p></o:p></p>
<p class="MsoNormal">So, we invited Tom to stop by on his way back to Wisconsin.
I had big plans for cleaning this morning and getting things pulled together
but… Fragile X happens and our morning was it’s own special little shitshow. I
was lucky to get a shower in before Tom arrived. <br />
<br />
It was around the time that Tom arrived that Parker was losing his mind over
wanting an inflatable in the living room (hello Halloween), my hair was still
wet, the floors were not mopped, and I could write my name in the dust on the
ledge in the entryway that is lined with my Isabel Bloom eggs that it hit me…
*this* is our life. <o:p></o:p></p>
<p class="MsoNormal">Our lives are not picture perfect or always easy. We live
each day in the moment, some of those moments are spectacular and others are
soul-crushingly horrible but each of those moments makes us who we are. And, you
can take that or leave it but you don’t get to judge it – and *that* frame of
mind is something that I’ve always resisted until now.<o:p></o:p></p>
<p class="MsoNormal">I had given Tom a head’s up that flexibility is the key to
survival in our house and he was go with the flow from hello. Parker insisted
we take Tom to meet Scott, Jen, and Baylee – and they graciously let us stop by
and we had a great time catching up while Willow and Baylee played. (Until Willow
got hot and went back to the car to lay in front of the air vents - she is totally
my baby!)<o:p></o:p></p>
<p class="MsoNormal">We showed Tom around the house, discussed the renovations we’ve
made, and my disappointment in the state of my backyard as I’ve completely
neglected it and it’s an overgrown mess. I’ve had so much going on this year, the
yard has taken a complete back seat. <o:p></o:p></p>
<p class="MsoNormal">As we went to pick up pizza, Tom mentioned that he had worked
in landscaping and had some of his stuff with him as he had done some work on
his mom’s yard while he was down visiting and that he would be happy to help me
by tackling the backyard for me.<o:p></o:p></p>
<p class="MsoNormal">And *this* is where you know just how exhausted I am – I said
ok. Me, who has been doing everything on my own for 10 years, who never accepts
help, said, “Ok”. Not only did I say “ok” but Parker and I took a short nap
while he was working in the yard. <o:p></o:p></p>
<p class="MsoNormal">Not only did a lot get accomplished today (thanks, Tom!) but
I got some rest and most importantly, I got to spend time catching up with a friend I haven’t seen in 30 years (and we got to be there when Tom got the news
from his wife that his son had 2 awesome basketball games at the tournament he is
playing in - in Las Vegas!) and, Parker was a rock star. <br />
<br />
It was a good day.<o:p></o:p></p><p class="MsoNormal"><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-H88ZfSoUUl0/YPzsbnXPXgI/AAAAAAABvDY/genKncVy4S48LaUZ80yqbsg0xMG2DT77QCLcBGAsYHQ/s2048/214900056_254627422831964_8603521548888103848_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://1.bp.blogspot.com/-H88ZfSoUUl0/YPzsbnXPXgI/AAAAAAABvDY/genKncVy4S48LaUZ80yqbsg0xMG2DT77QCLcBGAsYHQ/s320/214900056_254627422831964_8603521548888103848_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Me and Tom, catching up after 30 years</td></tr></tbody></table><br /><p class="MsoNormal">It was a good day to remind me that most people do not
expect perfection, that catching up is important, and that it’s ok to let
people in our bubble sometimes. We talked about Bob, shared memories of high
school, and caught up on everything in between before it was time for him to
make the drive home.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">It also reminded me to slow down and to take chances. Maybe it
is time to let go of my fears and write that last part of the book I’ve been
holding close to me and not sharing. Because life is short and unpredictable. <br />
<br />
And most importantly – take the time to connect, whether it’s been 30 days or
30 years since you’ve seen someone, make time to connect because you never know
what tomorrow may bring. <o:p></o:p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-45485431866991631042021-05-02T21:44:00.000-07:002021-05-02T21:44:06.489-07:00SOP ... the end of a school career.<p> </p><p class="MsoNormal">At the end of March, an email notification popped up on my
phone and read “Need to schedule SOP meeting” which – being the neurotic person
I am immediately read as “Need to schedule SOS meeting” and was like… If this
is an emergency why aren’t you calling me?!?<br />
<br />
I clicked on the email and discovered SOP was correct. SOP is a “summary of
performance” meeting to review, well I honestly do not know what we are
reviewing – the past 19 years he’s been in the school district? I don’t know.
What it means is that this will be his very last day of school – ever – and we
need to wrap up the formalities in one last meeting. <o:p></o:p></p>
<p class="MsoNormal">In Illinois, like many states, individuals with disabilities
in special education can remain in school through their 21<sup>st</sup> year of
life. Parker’s 21<sup>st</sup> year ends on Monday. On Tuesday, he turns 22, and
everything changes.<o:p></o:p></p>
<p class="MsoNormal">I’ve battled, man have I ever battled for these past 19
years. Part of me is done and so ready for there to never ever be another IEP
meeting again. I’m tired of fighting. I’m tired of pushing for the district to
do what is right for my son to have the appropriate education and accommodations
that he requires. It’s exhausting, mentally and emotionally exhausting. Even
the good meetings with the best teams when everything is going right, they just
drain you.<o:p></o:p></p>
<p class="MsoNormal">And, they define you. Without you even realizing it, they
define you.<o:p></o:p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qQXlnyryx5I/YI9_OhxVmUI/AAAAAAABpwE/nOrIlSL5_s40wNcgykvWtFrMwxtlfdRjgCLcBGAsYHQ/s640/c87aaf86be84504529cc81305493504c.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="628" data-original-width="640" src="https://1.bp.blogspot.com/-qQXlnyryx5I/YI9_OhxVmUI/AAAAAAABpwE/nOrIlSL5_s40wNcgykvWtFrMwxtlfdRjgCLcBGAsYHQ/s320/c87aaf86be84504529cc81305493504c.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>
<p class="MsoNormal">I honestly thought I had done a decent job. Until I saw
this “SOP” meeting request. Suddenly every single fear that I’ve had pushed back
in the very far part of my mind came rushing forward. <o:p></o:p></p>
<p class="MsoNormal">“Have I done enough?”<br />
“Have I asked for the right things for him?”<br />
“Did I push hard enough?”<br />
“Did I give in too much?”<br />
“What if I would have…. “<br />
“What if I wouldn’t have…”<br />
<br />
Literally, everything you can imagine I thought, and I started to panic. He isn’t
ready. I need the school. All I know is the school. It’s all we’ve done for the
past 19 years.<o:p></o:p></p>
<p class="MsoNormal">I immediately pulled his previous IEP, well IRLP because we’ve
been remote forever he’s had an “Individualized Remote Learning Plan” – so I
went back to his last actual in person, pre-covid, IEP and reviewed everything
we needed to put into place for his last year for this transition to be
successful and none of it has happened. Not one single part of it. Because it
couldn’t. It required him to be in person. It required him to be able
to be in the community. Things we couldn’t do because they were not allowed. <br />
<br />
He missed every single transition opportunity he needed and deserved. <o:p></o:p></p>
<p class="MsoNormal">I sent the reminder that he needed his exit evaluation.
Because, I enjoy torturing myself or I’m secretly psychotic, I’m not sure which
– maybe both – because that was pure hell to read.<o:p></o:p></p>
<p class="MsoNormal">Reading the email chain that I am sure I was not supposed to
be looped into… I do not feel like anyone went in with the intention of Parker
doing well or with any expectations of him. But he did. His parapro went with him
and he did what was expected of him. Did he give more? Heck no. There were zero
expectations of him so he gave them the bare minimum. Then, I got the report.<o:p></o:p></p>
<p class="MsoNormal">If there is a new goal for me, it really needs to be to
change the way reports are written and presented to parents, because it is
brutal and it hurts.<o:p></o:p></p>
<p class="MsoNormal"><span style="mso-spacerun: yes;"> </span>I KNOW my son is
intellectually delayed. I KNOW this. I don’t think about it 99% of the time
because we are too busy living life but I’m aware of it. He’s 22. I tuck him into
bed each night, I have to help wipe his bum, I do his cooking, our
conversations are limited, and he yells at me way more than he should. He gets
frustrated, he has meltdowns, he struggles with concepts. I’m totally aware of
the fact that he is not at the same level as his 21 - 22-year-old peers. But, I don’t
think about it.<o:p></o:p></p>
<p class="MsoNormal">I think about the fact that when he is running low on
Gushers or Goldfish or pineapples, he pulls up the HyVee app on my phone and
finds the food he wants, adds them to the cart, places the order, and schedules
the pickup time. I think about the fact that he can do laundry better than most
adults, and definitely more often. I think about his love for the Cubs, the
love for the people he worked with, and the job he had. I think about his humor,
his laugh, his strengths.<o:p></o:p></p>
<p class="MsoNormal">I know his weaknesses, I can’t focus only on them or I’d
never get out of bed. Life is too hard for that. So when I get a report that scores
him as “very low” or “extremely low” in every category, it is a sucker punch.
It takes the wind from your sails.<o:p></o:p></p>
<p class="MsoNormal">I read that report multiple times. Every single time it crushed
my soul. It sank my depression into a really rough place. How hard would it
have been to include something positive in the report? How hard is it to think,
“this is going to be really hard for parents to read, I’m going to include
something nice.” Instead of just “let me be as brutally honest and as blunt and
as harsh with reality as I can be?” Because, people, we know. We live this
life. We know. <o:p></o:p></p>
<p class="MsoNormal">Instead of reading it and thinking, “We’re going to be ok” I
read it and thought, “Holy shit, I have failed this kid in major ways.” Not the
school. Not anyone else in his life. Me. I feel like I’ve failed him in every
single way possible. This report was just so harsh, I’ve struggled to get past what
I’ve read.<o:p></o:p></p>
<p class="MsoNormal">I’m getting there, I know that this compares him to other 21
– 22-year-olds. I know the differences there are. But, it’s hard.<o:p></o:p></p>
<p class="MsoNormal">And tomorrow will be harder. <br />
<br />
Tomorrow I will drive him to school and drop him off there for the very last
time. Tomorrow is the last, last day of school for him forever. And while he is
there, we will have our SOP meeting and my expectations for it are not high. I
think what bothers me the most is that there is nothing for me to say. There is
nothing more to be done for this part of his life. Nothing.<o:p></o:p></p>
<p class="MsoNormal">And, honestly, without the last year and no preparations for
Parker for what is next – he and I are both lost. There is no handbook in this
special needs life. No one tells you how to make this work. I’m winging it. Just
as I’ve been winging it for the past almost 22 years. I have a plan for Parker and
in my head and on paper, it should work, but what if I’m wrong? What if he’s
not ready? What if he’ll never be ready? <o:p></o:p></p>
<p class="MsoNormal">It’s a lot.<o:p></o:p></p>
<p class="MsoNormal">It’s a lot to let soak in. It’s a lot to process. It’s a lot
to go through alone. It’s a lot to know others are going through it, too.<o:p></o:p></p>
<p class="MsoNormal">If you are, just remember, someone else is in your shoes,
too. I am. I’m scared, too. I’m fighting the fear, the feelings of failure, the
unknown of what’s ahead just like you.<o:p></o:p></p>
<p class="MsoNormal">And just like you, we’ll figure it out. We will. When we
really stop and think about it we’ve made mistakes but we’ve never truly let
our kids down and we won’t with this next part of our journey either. I’m not
going to say it will be easy, nothing has been easy yet, but I will say we can
do this.<o:p></o:p></p>
<p class="MsoNormal"><span style="mso-fareast-font-family: "Times New Roman";"><br /></span></p><p class="MsoNormal"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-f-m8HuL6oKE/YI9_cO38AbI/AAAAAAABpwM/UfwS9cpGz9cQY1bmFgerti3mEs28JsZygCLcBGAsYHQ/s323/races.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="323" data-original-width="320" height="320" src="https://1.bp.blogspot.com/-f-m8HuL6oKE/YI9_cO38AbI/AAAAAAABpwM/UfwS9cpGz9cQY1bmFgerti3mEs28JsZygCLcBGAsYHQ/s320/races.jpg" /></a></div><br /><span style="mso-fareast-font-family: "Times New Roman";"><br style="mso-special-character: line-break;" />
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<!--[endif]--></span><o:p></o:p><p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com3tag:blogger.com,1999:blog-1394541577708014059.post-58356658700207913642020-09-14T21:54:00.001-07:002020-09-14T21:54:37.877-07:00For the love of pickles... <p> I try not to ask for a lot in life.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">I try to be a good person. I’ve failed at that more than
once. I continue to try daily and refuse to repeat the mistakes already made.<o:p></o:p></p>
<p class="MsoNormal">I try to lift others up, to remind them of their worth,
their talents, their purpose. <o:p></o:p></p>
<p class="MsoNormal">I try to be a good parent. I probably try the hardest at
this. I also probably fail the most at this. I hear the most about this, there
is no shortage of people quick to point out things they believe that I should
have done.<o:p></o:p></p>
<p class="MsoNormal">I try not to let the words of others who criticize my
parenting stay too long in my head. No one is a perfect parent… no one. We all
make mistakes. We all have things we wish we would have done differently. We
all have things we’ve learned along the way that we simply didn’t know years
ago. This is all of us. I refuse to keep getting caught up in what could have
been if I would have … X, Y, Z… because 1. I didn’t and 2. You were not here.
You don’t know. Really, you don’t know. I mean, I’m amused that so many people
*think* they know what it takes to raise my children without being here 24/7…
or ever at all… but, there are times that amusement fades.<o:p></o:p></p>
<p class="MsoNormal">Right now, shaking the words and criticisms are harder. We’ve
been quarantined much more strictly than most for 6 months now. I’ve been
literally a single mom for almost all of these months. Not because their dad
didn’t want to be with them but because the doctors said no, we cannot risk the
health of our children. So, my house is the “safe house” the “germ-free” house.
For many months they could only do outdoor visits with their dad, Jen, and the
girls. No going indoors, no overnights. Just outside visits that we would drop
everything for them to have. Parker refused to go outside, so those visits were
primarily Allison. I cannot imagine how incredibly painful that was for their
dad and Jen to be without overnight or inside visits for so long, but they are
frontline workers, I can work from home. It was easy for me to close off my
house. And we did, completely. And they showed up, almost daily, for outdoor visits. They took walks, bike rides, played with chalk, or simply sat and talked. They were here as much as they could be.<o:p></o:p></p>
<p class="MsoNormal">You likely are just now learning this. We made an agreement
not to be public about the kids only being here with me. We had enough on our
plates that we did not need judgment or to answer to others for what we were
doing, although it was very black and white and simple. We were told our child
would die. This is what we needed to do to keep our children safe. I don’t know
if you’ve ever been told that something could kill your child or children but
it pretty much scares the fuck out of you. At least it did me. If the doctor
told me that shaving my head and wearing purple spandex every day would keep my
kids alive, I would do it. We were, and still are, following the doctor's orders.<o:p></o:p></p>
<p class="MsoNormal">There have been no friends inside of our house – we got
permission from the doctors for Allison to do a covid prom photoshoot with her
friends (which was the best!). There were no sports, no school, no anything.
Just me 24/7 until recently. That’s all they got… me. And I have tried hard,
God do I ever try hard. <o:p></o:p></p>
<p class="MsoNormal">I tried to send cards to family and friends as often as we
could. It kept Parker writing his name, it gave Allison a chance to stay more
connected. We excelled at this prior to the puppy. I set up a computer to the
living room tv so we could Skype with family and friends so we didn’t feel so
alone and so that Parker could see that everyone had to stay home. Allison and
I played card games each evening after Parker went to bed and when we could get
him to join in, we’d play Uno with him – sometimes even on Skype with their dad
and Jen. <o:p></o:p></p>
<p class="MsoNormal">Anything that comes into our house gets wiped down before
the kids can touch it. After a couple
months of having groceries delivered by family and friends we started doing
curbside pick up – it got us out of the house. We didn’t do drive-thru or food
delivery for the first couple of months – there was just too much we did not
know. We do now, partially because I was not made to figure out 3 meals a day,
every day, all by myself. I’m not that mom. If it can’t be delivered or picked
up curbside, we have family and friends who are always ready to pick something
up for us. They’ve been our lifesavers. <o:p></o:p></p>
<p class="MsoNormal">I’ve put keeping the children safe as my main priority.<br />
I’ve put keeping the kids connected to others as a priority.<br />
I’ve put our survival as a priority.<o:p></o:p></p>
<p class="MsoNormal">I have been so focused on taking care of everyone, on keeping others connected as a priority, and surviving that I’ve completely
neglected my mental health. The last thing I wanted was for anyone to know that
I was struggling, that my depression and anxiety were the worst they’ve ever
been. I smiled, I laughed, I faked it the best I could through every single day…
and still do.<o:p></o:p></p>
<p class="MsoNormal">I made sacrifices that I am criticized for almost daily.<o:p></o:p></p>
<p class="MsoNormal">Parker is incredibly routine-oriented. He lives off of his
calendar. He likes it when there are things on it, he likes to be busy. We
update his calendar almost daily, it is what kept him grounded and happy. And suddenly
it was gone, wiped completely clean. Not only did we take off all of his
Special Olympic practices, the state games, and all of Allison’s activities but
we wiped off all of his visits with his dad.<o:p></o:p></p>
<p class="MsoNormal">Just stop for a minute and think about how much the change
impacted you.<o:p></o:p></p>
<p class="MsoNormal">Now imagine being a routine-oriented kid who’s calendar is
his grounding point and it’s gone. All of it. The routine is completely gone.
On top of that, no more fast food. No more running to the store. No more having
friends over. Everything is gone. And suddenly.<o:p></o:p></p>
<p class="MsoNormal">That threw my boy into a tailspin. The calendar gave him a
feeling of control. He knew what to expect every single day. And that was gone.
He needed something to feel in control so my cellphone became that substitute. <o:p></o:p></p>
<p class="MsoNormal">It meant that text messages would get deleted. Facebook
messages would get deleted. Phone calls would not be answered. And I would
never know about either.<o:p></o:p></p>
<p class="MsoNormal">And, I could not leave his sight. Where he would be is where
I would be. I could not work, I could not take classes. I could simply be where
he was and our world was calm. If I opened my computer, our world was back in
tailspin.<o:p></o:p></p>
<p class="MsoNormal">This is what has kept his anxiety down. Keeping anxiety down
is key in this house. It prevents meltdowns and we were not in a situation to have
a meltdown.<o:p></o:p></p>
<p class="MsoNormal">I knew how much his dad wanted to see him in person but it
meant getting Parker outside. So, against everything I wanted I did what had to
be done to get Parker outside. I offered up turning on an inflatable. And just
like that, he was outside. He was able to visit with his dad, Jen, the girls, Rylee
and Michale.<o:p></o:p></p>
<p class="MsoNormal">Of course, one inflatable in the garage turned into one
inflatable on the deck to get him out into the back yard and not just the
garage. One inflatable turned into four and for several months now there have
been 4 huge Christmas inflatables inflated on my back deck every single day…
all day. And, honestly, I did not give a
shit. It was the least of my worries.<o:p></o:p></p>
<p class="MsoNormal">In late June we were given the option of choosing 2 houses
that we felt were safe that we could trust the people in to follow guidelines and keep their house as safe as possible for
the kids so we could do indoor visits. We choose their dad’s house and my
parent’s house. Indoor visits were not
overnight visits though.<o:p></o:p></p>
<p class="MsoNormal">Those came in late July and with a condition… I still had to
keep my house as a safe house. While the kids were now able to stay the night
at their dad’s once every 10 days, we still were not allowed in stores, and I
still need to restrict my visits to outdoors with the exception of my parent’s
house.<o:p></o:p></p>
<p class="MsoNormal">Late July also brought Parker’s first quarantine meltdown.
And honestly, his first meltdown like this in a few years. Years. Read that
again… YEARS. And it was bad. I don’t often talk about Parker’s aggression, we’ve
come so far with it that it rarely is an issue but when it is an issue, it is
seriously an issue.<o:p></o:p></p>
<p class="MsoNormal">And then, in mid-August, as secretly as we had changed the
kid’s visitation without being public, we brought my Grandma home to my mom’s
house for hospice. <o:p></o:p></p>
<p class="MsoNormal">While I agree with both decisions to be private, they took a
toll on my mental health. And seriously, God bless Melissa and Sonja because
they’ve heard every frustration and virtually wiped every tear that I’ve shed
these last 6 months and talked me off the ledge more than once. There were
times I became so withdrawn I didn’t even talk with them.<o:p></o:p></p>
<p class="MsoNormal">Keeping everything private wasn’t hard <b><i>for</i></b> me but it was
hard <i><b><u>on</u></b></i> me. <o:p></o:p></p>
<p class="MsoNormal">I’ve been slipping more and more each day, especially since
losing my grandma. Losing her crushed my soul and still doesn’t feel real.<o:p></o:p></p>
<p class="MsoNormal">While I’ve been slipping, the words from others – especially
ones they tell others thinking they won’t be repeated to me (insert eye roll
here) compounded with the ones being said directly to me I’m having trouble
shaking. They leave me doubting my parenting and leaving me incredibly angry.
Because, honestly, no one was in my shoes but me. No one. No one else was in a
position to remove the kids from the world and be here as their only person to help them through it. Through something
no one has ever lived through before. Something we still are trying to
understand. No one has been in these shoes. So being critical of me for Parker
having my phone or for me having inflatables up (we have one up in the living
room now, too) is really out of place. Yet, it is taking up space in my head.
My depression and anxiety are bad, like really bad.<o:p></o:p></p>
<p class="MsoNormal">And that brings us to the pickles. <o:p></o:p></p>
<p class="MsoNormal">We made our almost daily trip to Dairy Queen for some chicken
strips for Parker. the other day. We did the order we do almost every day. 6 piece chicken
strip basket without the dipping sauce, no drink, and a side order of pickles.
We ordered Allison the same. They repeated the order back and we got our order
and went home to eat.<o:p></o:p></p>
<p class="MsoNormal">Then it happened.<o:p></o:p></p>
<p class="MsoNormal">I opened the boxes of chicken strips and there was gravy,
thankfully still in its container and not spilled. This is a crisis in itself
because we said no gravy but it wasn’t catastrophic. What was world ending was
there were not any pickles.<o:p></o:p></p>
<p class="MsoNormal">Yes, I should have checked before we drove off but we’ve
been doing this for months and it’s been right every single time. I didn’t see
anyone new when we were at the window. I had no reason to think this day would
be different. But it was. There was not a single pickle to be found.<o:p></o:p></p>
<p class="MsoNormal">At first he laughed it off… “hahaha, the old guy ate all the
pickles” (the old guy is always the reason for something not to go right and it
works, I don’t know who the old guy is but I appreciate him.) but clearly that was
not how he really felt as we would quickly learn.<o:p></o:p></p>
<p class="MsoNormal">I grabbed the hamburger pickles from the fridge and a small
cup and quickly poured some pickles into the cup (I hate pickles, I don’t touch
them – they freak me out). He hated this. He didn’t want these pickles. <o:p></o:p></p>
<p class="MsoNormal">I was pissed. And exhausted. And done.<o:p></o:p></p>
<p class="MsoNormal">And angry. Super fucking angry. I don’t ask a lot but I DO
ask that you get our order right because when you mess up the order of a kid
with fragile x or autism, you’ve really ruined our day. Everyone’s day. <o:p></o:p></p>
<p class="MsoNormal">This was my tipping point.<o:p></o:p></p>
<p class="MsoNormal">This is when I quietly said out loud after he walked away angry at
ME for their mistake that I hated my life. That I hated Fragile X. That I could
not keep doing this. <o:p></o:p></p><p class="MsoNormal"><i>I don't hate my life. I hate where we are in life right now and the worry of not knowing what I will do next. I hate the uncertainty and the unknown of this virus. But my life, I do love. I don't hate Fragile X, I do wish we could live without it or at least more easily with it. And even when I feel like I can't keep doing this, I know I can and I will.</i></p>
<p class="MsoNormal">I was done. Seriously, done. I could not do this anymore and
that scared me.<o:p></o:p></p>
<p class="MsoNormal">I lost my happy tone and asked him what he wanted me to do. He
didn’t have an answer but I could see his frustration growing and knew that I
was pushing him way too much. He was already thrown out of sync, I couldn’t
push this anymore. So I grabbed my keys and wallet and said, “FINE. I will go
back to Dairy Queen and get your pickles.”<o:p></o:p></p>
<p class="MsoNormal">But he didn’t want that either.<o:p></o:p></p>
<p class="MsoNormal">I was fighting back tears now.<o:p></o:p></p>
<p class="MsoNormal">I was out of solutions. I was out of energy. I was out of
life. And I knew I could not handle another massive meltdown.<o:p></o:p></p>
<p class="MsoNormal">He picked up his plate and put it in the microwave. He was
done. He simply wasn’t going to eat. He also wasn’t going to let me go back. He
would simply be hungry and there was absolutely nothing I could do to make him
eat. <o:p></o:p></p>
<p class="MsoNormal">And it crushed me.<o:p></o:p></p>
<p class="MsoNormal">I’m tired of being completely defeated.<o:p></o:p></p>
<p class="MsoNormal">I need your help. I need you to understand a couple of
things. I need you to understand that <b><i>you do not know what others are going
through</i></b>. Some of the “happiest” people I know are fighting depression or
anxiety as their biggest demon and not always on the winning side. I need you
to understand that <b><i>our special kids are struggling</i></b> and their parents are doing
everything they can to keep some balance in their lives. I need you to take
this pandemic seriously, wear your masks and social distance. I want my life
back. And no, it won’t magically happen after the election, it’s a global
pandemic. This isn’t just a US issue, it’s a WORLD issue. So please, please do
the right thing and wear your masks, stay home when you can, social distance
when you are out, and wash and sanitize your hands frequently. I need you to be
a part of the solution of getting our lives back. Our kids need it. We need it.
Our mental health needs it. <o:p></o:p></p>
<p class="MsoNormal">And most of all, I need you to understand our kids, even our
adult kids with special needs and do your part to help them through these
trying times. They are isolated, too. And when the one thing we have in our
routine is getting chicken strips, please, please, please be sure the order is
right and <b><i>don’t forget the pickles. </i></b><o:p></o:p></p><br /><p></p>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-29732659326362340392020-05-29T20:55:00.001-07:002020-05-29T20:55:28.661-07:00One Year<br />
<div class="MsoNormal">
One year.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It feels like it has been a lifetime, truly one of the
longest years of my life, but today marks 1 full year since Allison was
diagnosed with juvenile dermatomyositis (JDM). This is for her.<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-VlnA-OAn_7I/XtHYYJmFUuI/AAAAAAABZKA/4PSEDxiAluUKktSDzfFW-cqcy1jsiTqEgCLcBGAsYHQ/s1600/One-year.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="386" data-original-width="580" height="212" src="https://1.bp.blogspot.com/-VlnA-OAn_7I/XtHYYJmFUuI/AAAAAAABZKA/4PSEDxiAluUKktSDzfFW-cqcy1jsiTqEgCLcBGAsYHQ/s320/One-year.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sweet child of mine, <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I had fought for so long to find an answer. I watched as you
lost so much weight it was scary. I watched as you couldn’t eat because your
body was in so much pain. I watched as you walked with your own special gait
that people told me they couldn’t see, yet it was so obvious to me. I listened
as you told me of the pain you were in. I tried to find an answer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I disagreed with doctors. I *may* have went slightly
overboard with my response when I was told you were fine, simply “malnourished”.
I knew this wasn’t the answer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I also began to fill with uncertainty. So many doctors for over
a year had told us you were fine. I knew you were not seeking attention but what
if it was growing pains? What if you were fighting an eating disorder? I never wanted
to doubt my mom’s intuition, but I started to and I regret that. Thankfully, it
was the night before we left for Mayo that the non-stop noise in my head got the
best of me and not months before. Still, I apologize, again, I am truly sorry.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember every single thing about the room we were in at
the Mayo clinic. Not only because we’ve been there so many times since, but I
remember that exact day vividly. I remember my excitement of being at the best
place, medically, on earth for you and also scared that they would not have an
answer and we needed an answer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I watched as the first doctor looked you over. Grandma and I
looked at each other when we saw the doctor’s face change from serious to a
twinkle in her eye and grin when she figured it out. As soon as she left the
room to get your doctor to formally diagnosis you, we said, “She knows.” And
she did.<o:p></o:p></div>
<div class="MsoNormal">
It was surreal watching them work together to go over all of
your joints, every single one, and talk quietly together, pointing out what
they saw. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They listened intently as we talked about your medical
history and what brought us there.<o:p></o:p></div>
<div class="MsoNormal">
I remember the excitement in the doctor’s voice when he
announced your diagnosis. “Allison, you have Juvenile Dermatomyositis!” It felt
like balloons should have fallen from the ceiling there was so much excitement.
I remember hearing it was 1 in a million. I remember the wave of relief that rushed
over me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We knew. We had our answer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then I could hear his words, not all of them, only some…
fatal, life-threatening, no cure. I remember looking at you barely able to breathe,
thankful that Grandma had stood up to stand by your side and rub your back.
There is no way to explain the fear and pain that goes through a mom’s heart
when she hears those words. I was frozen in time, taking in what was happening
but not able to process anything until Grandma spoke and asked if it was
treatable.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yes, we could treat it. Yes, you could go into remission.
Yes, there is so much hope. Yes, I could breathe again.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We stopped and backed up a few steps to hear again
everything we were being told. We jumped at the opportunity to take part in a
research project. We called your dad and Jen who were on their way there to let
them know the news. We planned to get many tests completed and meet with the
doctor again the next day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve moved forward. I attended a conference, thankfully
with Melissa by my side. There was no way I could have made it through without
her. The diagnosis was so fresh in our lives. I had so much to learn. I wasn’t
prepared for a 2<sup>nd</sup> disability to rock our world.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We adjusted. We made many trips to Mayo. We have the world’s
very best doctor – and team of doctors. I trust them with your life.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve watched each week as you’ve injected yourself with
methotrexate, a chemotherapy drug, for almost a year now. I’m in awe of how
quickly you took on that responsibility and never hesitated to give yourself
that shot. I won’t lie, it is hard to watch. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve went through so many emotions. I’ve sunk into a depression
that I’ve struggled to begin to climb my way back out of. You’ve handled it all
with such grace and taken on every challenge, I’ve done my very best to support
you, talk with others, and learn all that I can. I just can’t, no matter how
hard I try, no matter how well you are doing, get past those words… life-threatening.
And, I can’t fix it. Damn it, I want to fix this so bad.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Those words shook me to my core. I never imagined anything
could take you from me and now we would be fighting your own body to keep you
here with us. I’m angry and sad and scared. I’m really, really scared.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I jumped back into fighting for your rights and accommodations,
even though you would never use them – I wanted them there just as a safety net
at school. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve driven more miles and spent more nights in hotels this
past year than I have in the past 10, at least. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You’ve dealt with so much bullshit from people. It’s amazing
I am not in jail. You’ve had kids make fun of you for having to sit out at
times from the pain as we work to find the right treatments for you, you’ve dealt
with the jerkface remarks about your sun sleeves that cover your skin or long
sleeved shirts year round. You’ve dealt with assholes who gave you shit for
having to wear a mask. It crushes me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Every ounce of me wants to protect you from the ignorance in
this world. We work together to try to educate. It would help if people were
not so quick to judge and more responsive to listening. And, well, if we still
lived in a time when people cared about each other.<o:p></o:p></div>
<div class="MsoNormal">
I admire your strength. I admire your determination to continue
to do everything, even when you are fighting extreme pain and I want you to
stop. I admire your courage to take the steps you need to keep yourself safe
despite the response from people. I appreciate your willingness to learn more
about this life changing disease.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So much progress was made this past year for you. You have
been through surgery and infusions, more blood draws than we could count, CTs,
MRIs, Xrays and more. You’ve been amazing through it all.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were on course with your treatment for you to still take
the trip to Europe next month, I was so excited for you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then COVID-19.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our world has stopped. I know how much you hurt to see
people your age still getting together with friends, without masks, convinced
they won’t be impacted by this. I see your hurt. I see your anger. I understand
all of it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You are isolated. We don’t have an option on that. This
disease, especially because of the specific antibody you carry – thanks for
being extra rare – attacks your heart and lungs already (in addition to your
skin, muscles and joints). We both know, we all know, we can’t take any chances
here. <o:p></o:p></div>
<div class="MsoNormal">
I know that because you are aware of what your outcome would
be, it frustrates you more when people you are close to and care about blow
this off. You take their ignorance personally. Why can’t they see how simple it
would be to wear a mask or social distance to protect people like you… to
protect you? I understand why that is a knife through the heart and I wish I
could take that pain away. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wish I could get them to see this through your
eyes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know the last several weeks have been hard. Our trip to
Mayo was canceled. The Europe trip was canceled. Prom was postponed and it is
iffy if it will still go on. You miss your friends, your teachers, your
freedom. I miss all of that for you too. I look forward to the day when you can
have your life back. You are such an incredibly smart and talented person with
the kindest heart of anyone I know.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am hopeful that as we start another year into this journey
that I am able to get past my struggles with the words that hold me down. I know
I will continue to watch you thrive. I will continue to fight for you. I will
continue to see you do amazing things. I’ll be right beside you – or behind you
– supporting and cheering you on the entire way.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You are going to reach remission. And you will stay there. I
know it. You deserve it. I love you with all of my heart… I love you 3,000.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love, <o:p></o:p></div>
<div class="MsoNormal">
Mom<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
PS – you are just malnourished hahahahahaha!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you would like to support the research to help Allison and so many others like her, please go to <a href="http://curejm.org/">curejm.org</a> and make a donation today.</div>
<div class="MsoNormal">
<br /></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-78978956682032045662020-05-26T09:09:00.002-07:002020-05-26T12:43:21.518-07:00Pandemic life.<br />
<div class="MsoNormal">
For 2 ½ months, we’ve been home. No one is allowed to come
into our house. When groceries arrive, mail, or other items are delivered, they
are wiped down in the entryway before finding their place in the house. Then
the entryway is sanitized again. We’ve taken a few drives, mostly short ones
here in town.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parker, who lives with Fragile X Syndrome - an intellectual disability, was told everything is closed, including all fast
food places, until recently when I’ve reached my peak of cooking 3 meals a day.
Now they are open for “select hours, 1 day a week”. He was told that we can’t
go into the stores because we do not have a special card to get in.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He knows there is a virus. Carl Azuz from CNN10 tells him
about it, daily, he obsesses over watching Carl Azuz and hearing what he has to
say. Then pouting because his school didn’t get the shout out at the end of the
broadcast. It’s our routine, though, and I appreciate Carl’s 10-minute recap of
events plus adventures he takes us on as much as Parker does.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are no sports on TV. Every day Parker tells me who was
supposed to be playing today before the “stupid virus”.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No friends can come over, family must be masked and 6 feet
apart for an outside visit only.<o:p></o:p></div>
<div class="MsoNormal">
Our calendar is empty. No school. No visits. No games. No appointments.
No anything. Just blank. Emptiness.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve seen every episode of Bubble Guppies, Blue’s Clues,
and Paw Patrol ever made. I keep thinking we’ve seen every episode of Sponge
Bob yet I keep seeing new to me ones, so apparently, we still have some watching
to do there.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parker is up by 6 and in bed by 8 to watch TV and asleep by
9 – 9:30. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Before the puppy, I was woken each morning from yells of
help from the bathroom. I still start our morning helping him in the bathroom.
Even at 21, he still requires assistance with cleaning. I still debate every
day getting a bidet and wondering if it would increase his independence. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
He doesn’t like for me to leave his side. “Mom, mom, mom,
mom, mom, mom….” Repeats throughout the day, if I leave the room the voice
follows to be sure I’m still here. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He’s taken backward steps on his independence and, while I
know we will get them back, I worry if I will ever get him back in the
community the way he was before.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He knows the virus will make him (and others) sick. He knows
people are dying. He knows we can’t give hugs to our friends or family… and he
loves hugs.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He holds my cell phone all day long, even though he has his
own. He deletes text messages he deems unnecessary and holds the phone inches
from my face to read for the ones he feels are important. He doesn’t want to
miss a thing, and the most important things come through on my phone. It helps
him feel as though he has some control and keeps me off of social media, so it
is truly beneficial for us both… just maybe not for the people who never hear
back from me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can’t imagine how he would survive COVID-19 if he were to
get it. His communication is limited. His understanding is limited. It doesn’t
scare me. It frightens the hell out of me. Maybe he would be asymptomatic and
not at all phased. I don’t know. I’m not willing to risk his life to find out.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<s>Allison wakes up</s> Allison is woke up around 11 – 12. If
I let her keep sleeping, she would happily stay in bed until 1 or 2. It sounds
terrible, or to me like a typical 17-year-old, but the truth is she is awake
almost all night long, so to get up late morning gives her the number of hours
she should have. She’s always been my night owl. Our time together is after her
brother goes to bed.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We spend way too much time sharing tik toc videos but also a
lot of time playing card games and now working together to train the puppy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She is amazingly quiet throughout the day, I make her repeat
herself more times than I can count because I simply cannot hear her. Until her
brother goes to bed. Suddenly her concert-going voice comes out and she yells
everything at me as though I’m 2 blocks, not 2 feet away.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She understands everything. She knows what’s going on, she
follows the news, she expresses her frustration at the ignorance and self-entitlement
around us. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She knows she would likely die if she were to get this.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Can you even imagine being 17 and knowing that there is a
virus in our world that would kill you?<o:p></o:p></div>
<div class="MsoNormal">
She is not only immune suppressed from the methotrexate (a
chemotherapy drug she takes for her juvenile dermatomyositis - JDM) but she had
an infusion to remove all of the B cells from her body to help her better fight
the JDM. <span style="mso-spacerun: yes;"> </span>She has basically no immunity.
On top of that, because of a specific antibody she has, her heart and lungs are
already compromised and at risk to be attacked from her own body, let alone
something like COVID-19.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She watches as her friends and people from her school still
get together. She sees the snapchats of people cursing our governor for not
allowing people to gather and the photos of them breaking every distancing
recommendation there is. She sees people refusing to wear masks and has been
made fun of for wearing hers (which has been required since the onset of flu
season because of her JDM).<o:p></o:p></div>
<div class="MsoNormal">
She feels as though her friends do not care at all about her
when they ignore the guidelines and get together. She takes it very personally.
How could they not care knowing they have a friend who would die? I’m,
honestly, out of things to tell her to attempt to make her feel better. I’m
trying to restrain from saying that people are careless, selfish assholes even
though those are the words playing through my head.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She can’t touch anything that comes into our home until it
has been sanitized. She is isolated and feels incredibly alone.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We do our best to provide opportunities for her to ride her
horse. It’s safe and the best thing for her mental health. Time outside, even
if mostly or completely alone on her horse, doing something she loves.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are video chats, texts, and phone calls that happen daily,
but nothing replaces hanging out in person with your friends.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is our life right now. We are home. We are isolated. We
are taking extreme precautions to stay healthy and safe.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Despite the isolation and exhaustion of trying to be an
entire village for my kids, I would not change what we are doing for anything.
This is what will keep them safe, healthy, and alive. And at the end of the
day, that is all that matters to me and those who love them. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It leaves me with way too much time to think. And way too
much time to be angry and frustrated with the world around me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve lost way too many people in my life because of my
stance on masks. I don’t see why people are losing their minds over wearing
them. You cannot smoke in restaurants, stores, or gas stations because it is
for the best health of those around you that you do not. It is a public health
and safety issue. That is exactly what this is. It is a public health and safety
issue.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So why isn’t it being enforced?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember when people could smoke in restaurants and I remember
when that changed but I am not old enough to know if people lost their ever-loving minds over it. It was enforced and we are all healthier because of it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, why is this different? COVID-19 is more deadly than secondhand
smoke. It is more deadly than basically everything yet people will disagree
with that statement.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I won’t even go into how divided our country is due to
politics right now. At <span style="mso-spacerun: yes;"> </span>a time when we
NEED to be unified on doing the right thing, not only are there 100 different
ideas on what is best but hateful arguing as to what is right, wrong, and your
rights. That is horrifying and could have been avoided.<o:p></o:p></div>
<div class="MsoNormal">
There are people who still think this is a hoax by our government.
I am not sure if they are blind to the rest of the world or how that works in
their mind but it is insane.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, it isn’t that I am not aware that there are people out
there that are selfish, ignorant, and bound and determined to break every rule
(especially since they are not enforced – and those who should be enforcing
them are saying they won’t – ugh!) because it is against their “rights”. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Apparently, your right to be an asshole is of higher value
than anyone else’s right to ever be able to leave their homes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All you need to do is wear a mask. I’m not asking you to cut
off a finger each time you enter a store. I’m asking that you wear a mask,
properly, to cover your mouth and nose. Why is that such an impossible request?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead, you scream at me that I live in fear. That I am a
sheep. That I trust too easily. (eye roll) You scream at me about your rights.
Your fears (you may die from breathing in your own oxygen – eye roll, again).
But it is MY fears that are proven by the medical community that my children would
likely die that are ridiculous. What is wrong with you?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You tell me “don’t leave your home.”<br />
<br />
I haven’t been. But, the reality is I SHOULD be able to. I SHOULD be able to
take my adult children, wearing masks, into the store and they SHOULD be safe
because YOU are wearing yours, too. But I can’t. Because YOU won’t.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because your “rights” and your “freedoms” are more important
than ours. What in the actual selfish fuck madness is that???<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not only will you not wear a mask but this past holiday
weekend, people jumped at the opportunity to cross state lines and party with
massive groups of people, without social distancing, without masks, without a
care in the world because YOU deserve to live your life.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve watched the photos pop up on my newsfeed. The pools,
the beaches, the restaurants… all of the places you’ve been because YOU
deserved it. Now you are back in our communities, back at work, back in the
stores where our groceries come from – without your masks – possibly contaminating
and exposing others.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now we definitely cannot leave home for a while. Your “freedoms”
have confined us even longer. <span style="mso-spacerun: yes;"> </span>It wasn’t
your freedoms. It was your selfishness. Freedom isn’t about only some people
being allowed to be free.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Maybe our communities and our nation have always been incredibly
selfish and I just didn’t notice but I do now, more than ever.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve had people “laugh” at me on Facebook for saying masks
should be worn, for saying we should follow the guidelines set out because I
want EVERYONE to be able to leave their homes at some point soon. Not just
those who don’t give a shit. I’ve had business owners laugh at and mock me.<o:p></o:p></div>
<div class="MsoNormal">
I can’t help but wonder, if your children could die, would
you feel the same way? If your child’s doctor specifically said to you that the
odds of survival are extremely low… would you still demand your right not to
wear a mask?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This entire 2 ½ months, I’ve watched people continue to go
to stores, those who cannot work from home – go to work, many gather with
family and friends… all from the inside of my home. It is the most bizarre
feeling to see the world go on while you cannot leave your home. For the most
part, those in my life do so safely, wearing masks, using hand sanitizer, and
taking precautions. <o:p></o:p></div>
<div class="MsoNormal">
We do have to get back to life. We just need to do so
safely. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve exhausted myself trying to explain why this is so incredibly
important for you to follow the guidelines with masks and distancing. No part
of me understands why it is such a challenge for you or why you cannot.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I see who you are now, though. I see they type of person you
are. I understand you do not care at all about the lives of others. I am fine
that you are no longer in my life. I’m better without you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know how to unify our country on this. I don’t know
when doing what is right for the benefit of others became the last thing people
wanted to do instead of the first. I don’t know when “love thy neighbor” became
“I don’t give a shit about you.” But that is where we are and my heart could
not be more sad.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To my friends who are home alone raising special needs or
immune-compromised children or caring for family members, I see you. I know you
are feeling defeated, alone, and exhausted. I know you feel like you are
failing everyone around you because there has been regression. I know you feel
like you cannot keep doing this. I know. Believe me, I know.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I also know you can. You are stronger and smarter than the
fear and ignorance that is surrounding us. You are better to continue to do the
right thing, put others first, and help those around you than those who do not.
You will get back the steps you’ve taken backwards. You will make progress with
your loved ones, again. You are so incredibly amazing and I know you rarely
hear that, if at all, but it is true. It is hard to do things on your own, it
is harder when you lose your village and are isolated BUT you ARE doing it and
you will keep doing it and rocking it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This will change you, it already has, it was impossible for
it not to. You will come out stronger, even though you can barely stand now.
You have what it takes to get through this no matter how much longer it lasts.
You have the patience still in you that you fear is gone, you just have to dig
deeper for it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You don’t have to be perfect. You don’t have to accomplish
it all. You simply have to be sure that you and those you love survive. <o:p></o:p><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-bHhD-CSb5Og/Xs1BgPTfxCI/AAAAAAABY88/U6cl5mNBTfkzdPLmXIdZzlzE_QACdcR9gCLcBGAsYHQ/s1600/81lFr3vGVaL._SS500_.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="500" height="320" src="https://1.bp.blogspot.com/-bHhD-CSb5Og/Xs1BgPTfxCI/AAAAAAABY88/U6cl5mNBTfkzdPLmXIdZzlzE_QACdcR9gCLcBGAsYHQ/s320/81lFr3vGVaL._SS500_.jpg" width="320" /></a></div>
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If there are dishes in your sink, stacks of stuff on your
counters, floors that need swept, laundry that needs done – that will happen.
Rest when you can. Know you are doing the work of an entire village and the
only one who is expecting more for you is … you. Take those moments to close
your eyes and rest, even if briefly. Breathe deep. Let go of what you can. Stay
off social media if you need to, for the good that it brings, right now the
worse of what it does is drowning us all.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Continue to be a voice. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Don’t give up.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You are not alone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I see you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve got this.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Life has given us an incredibly challenging hand and we’ve always
risen to the occasion. We will again. There will be a time when we can leave
our homes again, when we can let the village back in to help raise our kids. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our kids are thriving because they are alive. When this is
over, they will blow us all away with the progress they will make. I know they
will. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hang in there, dear friend. I’m sorry people are selfish. I
am sorry people do not care. I pray that changes every single day. Even more, I
pray that you make it through. I worry about you but I know with all of my
heart that you will.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just keep swimming.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p>To those in my life who have become my COVID-19 village, who deliver us groceries or check-in to see if we need anything, I hope and pray you always know how thankful I am for each of you. Your kindness and thoughtfulness mean more to me than just picking something up or check-in in on me. You are my reminder that there are good people in our world, that there is hope for humanity, that the good always shines through. You are truly the good in this world and I pray you never let anyone change that about you. I am forever thankful.</o:p></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-63611682029324724692020-04-17T00:45:00.002-07:002020-04-17T08:45:51.265-07:00Special needs quarantine. <br />
<div class="MsoNormal">
Words have always come easy for me. I sit down, close my
eyes, and just type. All the words from my always wanting to write mind just
flow. Throughout the day, my mind is always “writing” – always, it is
impossible for me to turn off. So, when I sit at the end of the day to let it
out and I can’t, it worries me, and I know takes a toll on my mental health.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That is where I am at though. It is where I have been for the
past 6 or 8 weeks. There is so much I have started to write and started to say
but stopped. I’ve written and re-written the same thing over and over and over
and it just isn’t right, so I stop without finishing. Because of this, my mind
just endlessly spins. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think today though, the frustration in Parker and the
inability to give him what he needs was just enough to push my emotions enough
to let go and write. I’ve been holding them in as much as I can, which isn’t
saying much – as I cry at the drop of a hat – but I am doing my best. It is so
hard to be so strong every day in the best of times and nearly impossible right
now. I’m not sure which one of us I need to write more about at this moment or
if it is just a twisted combination of us. Again, unlike me, my writing is
always so clear for me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parker has always lived in a world that is upside down. He’s
struggled to fit into “our world”, his is one of routine, familiar people and
things, and consistency. “Our world” is too loud, too chaotic, too much of just
everything. We’ve been able to give him both what he needs to merge his world
with ours through consistency and routine and also the tools to help it be a
bit more bearable, like his headphones. We had a “normal” in our very abnormal world,
but it was ours and we rocked it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then COVID-19. I watched it make it’s way across
countries. I saw what my friends across the world were going through. I slowly
stocked up on Parker’s favorite things and added to what was in the freezer. It
was incredibly clear it was coming and all I could do was brace for it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I love having my kids home with me, that is no secret. I’ve
always been most content when they are here under my roof. I don’t turn down
time with them, I’m happy to keep them when their dad has something come up, I’m
better when they are here. I’m also a homebody, so, this whole not leaving my
house and not having to be social is kinda right up my ally. Except it also isn’t.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parker’s life is so upside down right now and I can’t fix
it. Do you even know how hard that is for me? <b>I can’t fix it. </b>I know
what he needs, I know what would make it better and I can’t make it happen.
Instead, each passing day my inability to meet that one need makes his life so
much worse and it is crushing me. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He needs an end date. A date to mark on the calendar when
his life will go back to his normal. I know, we all do, but I’ve always been
able to give him this. Concrete days to circle on the calendar to ease his mind
about when and what will be happening. Instead, our calendar just keeps getting
more empty and I can’t tell him when that will change or how it will change.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
His routine is gone and he wants it back. It’s crippling to
him to have it this interrupted. Our days are pretty much run by him at this point
because <b>the battle I’m picking is survival.</b> That’s it. <b>My only objective is for
us to survive.</b> Any regression that happens, I can fix later. Any habits that
sneak back in, I’ll take care of at t later date. Right now, we just need to
survive and for that to happen, I have to give in.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can’t give him the routine he needs. I can’t give him the
people he wants to see (in person, we do a ton of video chatting though). I can’t
give him literally 90% of what he wants right now. So I give him me and lately,
even that isn’t enough.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our days are exhausting and we aren’t even doing anything.
We wake up before 7 and go through our routine: feed the cats, take our meds,
make our to-do lists for the day, tv, school work, wake up Allison, eat lunch,
watch TV, call family and friends, play card games, eat supper and go to bed.
That doesn’t seem exhausting except throughout the day, I’m not allowed to
leave his sight. At all.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are glued together. If I get up to leave the room – he panics.
Where am I going? What am I doing? Why am I doing it? A flood of questions that
are not asked of me but yelled at me, even though I’m only a foot or two away.
When I leave the room, he follows. I go to the bathroom, he stands outside the
door, talking the entire time, mostly telling me to hurry up.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He has my phone. He gets incredibly upset if I even attempt
to open my computer to work. I can’t talk on the phone, send a text, or respond
to an email without doing so over his yelling and frustration.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He yells … a lot, all day. Everything is “stupid” the stupid
virus, the stupid food, the stupid weather, the stupid car rides that he doesn’t
want to take. His stupid mom. I hear pretty much all of it through the course
of the day, I’m stupid, an idiot, a jerk, and on his really rough moments, I’m
a bitch.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I can’t fix it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He’s frustrated. He’s frustrated that we can’t go to the
store, we can’t go see our family or friends, we can’t go to school, we can’t go
to Special Olympics, we can’t basically anything at the moment. And I have no
way to say when we can again.<br /><br />He can't watch his Cubbies. He *could* watch old games but that isn't what he wants. He wants new games where he can follow along on his ESPN app. He wants his Cubbies back. I can't even tell him when that may be. He tells me each day who they were supposed to be playing that day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He’s isolated. His friends rarely answer calls or texts.
When we do video chat, he doesn’t want to talk – he simply wants to SEE the
people in his life and hear them. He does so with his headphones on while
watching Power Rangers but it helps, it helps him so very much.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And lately, getting increasingly more upsetting each day –
he has a meltdown over his upcoming birthday.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve been talking about his 21<sup>st</sup> birthday for
months. MONTHS. He’s been so excited. We were going to go big, hoping to get
all of his friends from high school together, along with friends from the years
since his class graduated that are an important part of his life. He has been
so excited. And now we can’t and he’s pissed… at me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m the one that isn’t scheduling the party. I’m not calling
the Y or the bowling alley or making the plans. I’m not sending invitations or
making a guest list. I’m not… because I can’t. And, while he’s grasped a lot
with this current situation and dealt with it the best he can – he is not at
all grasping why his birthday party cannot happen. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“My birthday isn’t canceled” he will tell me, “I still have
my birthday. I be 21” he will repeat over and over. And yes, that is true. It
will, however, just be the 3 of us and that is not at all how he wants to spend
his 21<sup>st</sup> birthday.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve talked about how we can do a big video call with everyone
– he hates the idea. <o:p></o:p></div>
<div class="MsoNormal">
I’ve talked about how we can have friends drive by and honk –
he hates the idea. <o:p></o:p></div>
<div class="MsoNormal">
I’ve talked about how we can have a party in June or July or
August – whenever we are able to have a party again. That one he really can’t wrap
his mind around… “it won’t be my birthday then.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Don’t get me wrong, I’m still going to plan those things. He
may hate them and he may hate me for them – or he will love them. I really don’t
know at this point but I have to at least try.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m just so heartbroken and sad for him that I can’t fix any
of this.<o:p></o:p></div>
<div class="MsoNormal">
<i>I’m sorry I can’t tell him when this will be over.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry I can’t let him be with people he loves and craves
to see right now.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry I can’t give him the party he has been waiting
for. <o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry we can’t just leave and grab something from the
store.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry we can’t go to the movies.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry everything is closed.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m so very sorry I can’t fix it.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>I’m sorry it is still getting worse.</i></div>
<div class="MsoNormal">
<i>I’m sorry I can’t make it easier to understand.</i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve been home so long, I can’t even tell you when we last
really left the house. We’ve taken a couple of drives but we really aren’t
leaving. Allison’s immune system is non-existent. Between the infusion to
remove her B-Cells and the chemotherapy drugs she takes, it simply isn’t there.
This virus would be deadly to her and we all know it. Parker’s communication is
limited, he can’t tell us when he is sick, he can’t tell us how he feels, we
wouldn’t know until he was incredibly sick that he wasn’t feeling well. That’s
a lot of risk that we are not willing to take. So we stay home. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Scott, Jen, and our friends will pick up groceries and
medications we need and leave them on our porch. I go through and sanitize each
item before it goes to the kitchen. On days that I feel fine and normal, that goes
immediately out the window as I’m wiping down a box of Cheerios with a bleach
wipe before letting my children touch it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fear and panic control more of my mind than they should, and
I hear from people all of the time how I shouldn’t let that happen. Awesome.
That makes me feel better right away. A legitimate feeling and emotion I need
to process I’m told is wrong and that I’m wrong for having them. You know,
because they have a child or children who is extremely high risk… oh yeah, they
don’t. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There is a difference in acknowledging and feeling an
emotion to work your way through it and letting it control you. It can be a
damn fine line but you have to let people feel. You have to acknowledge real
emotions and let them experience them. It is the only way to the other side.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I stay up with Allison in the evenings, she is my night owl.
We often go to bed between 1 – 2 am but this is our time, our time to catch up,
our time to talk, our time to play games, watch a movie or just “be” in the
moment together. I cherish these moments.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I do sleep, it is in short spurts. Parker is up 3 or 4
times a night. My mind races. I know I need sleep but needing it and getting it
are not the same.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My tank is on empty.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m a little bit jealous of people who leave their homes for
work, or the store, or to take a walk because that normalcy in this time of uncertainty
has to be nice. You see other people, in person. Not everyone is getting that
right now. And I feel guilty for having that bit of jealousy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I feel guilty that I get all of this time with my kids and
other people who would love to have a day or even an hour with them can’t have
it at the moment. It hurts me to know how much they are missing out on and…
what if something happens to them and we did all of this and they missed so
much and my kids don’t have any more time to be with them? That one really cuts
deep.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know this isn’t forever, I know we will do everything we
are supposed to and we will get – at some point – our lives back. I know that
will happen. It doesn’t always make each day easier. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’ve had to make some incredibly hard decisions during all
of this. I know they were the right ones but it doesn’t take away any of the
guilt or make it any easier. The right decisions are often the hardest. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Don’t get me wrong – <b><i>not every moment of our day is rough.</i></b>
We have so many laughs and so many moments that I want to hold onto forever.
Moments of togetherness that can’t be replaced. We’ve been silly and creative
and man, have we laughed! Those moments happen every single day. They are the
moments I hold onto when the day ends and the ones I wait for through the
challenging parts of our day. We send cards out every day and it is a highlight
of our day to pick out who they are going to, who gets what card and then
signing, addressing and stamping them. We know this brings a smile to others
and it is so important to us.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If I could make a request or two… ok, 2 maybe 3… or 4 or 5...<br />
<br />
1. Check on your friends who are parents of special needs kids. They are
isolated. They likely aren’t having happy hour zoom dates with groups of
friends. They likely aren’t leaving the house. They likely aren’t sleeping or
eating or exercising like they should. They are likely worried about the health
of their children. They are likely worried about therapies not happening and
how to get their child to do even 15 minutes of schoolwork at home without it ruining
everyone’s day. They are likely in need of you, especially the single moms and
dads. Just let them know you are there.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2. Please don’t tell others how to feel or that they are wrong
for feeling the way they do. We all need our feelings validated.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
3. Sometimes people just need to vent. They just need to get
things off their chest. Let them. Without telling them what and how they should
be doing something, just let them vent. Odds are, whatever you are about to
suggest they are either already doing but didn’t mention or they can’t do and
don’t want to explain the why behind it. Supportive, positive words go a long
way.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
4. Take the time, every day, to tell people you love them.
If this has taught us anything, it is that nothing in life is promised. We don’t
know what tomorrow will bring, or if it will come at all. Say I love you now,
to your family, to your friends, to your kids, to your pets, to anyone who needs
to hear it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
5. Be kinder, more compassionate, more understanding and
have empathy. This is missing from our world. We can change that. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Check-in on each other. We all need that right now. To my
special needs families out there… I see you, I feel you, I hear you, I hurt for
you, I am you. I understand. You are so incredibly strong and have proven this
time and time again, I know you will now, too. Today may be rough but tomorrow is
a new day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, this concludes the most all over the place blog I’ve
ever written, it was a bit of a shitshow but I do feel a bit better now, at
least well enough to sleep for a few hours. <span style="font-family: "segoe ui emoji" , sans-serif; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol-ext; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: "Segoe UI Emoji";">😊</span> <o:p></o:p></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-48678749835585189942020-03-24T21:43:00.003-07:002020-03-24T21:43:48.974-07:00Monsters We Can Not See<br />
<div class="MsoNormal">
It isn’t the monsters we can see that we fear the most, it
is the ones we can’t see. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cancer. Disease. And now, COVID-19. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We do our best to prepare to fight them and to work hard to
avoid them but we can’t see them, we can’t feel them until it is too late and
they have already attacked, and they tend to be the most deadly. <o:p></o:p></div>
<div class="MsoNormal">
I’m not going to lie to you, this current monster has me
petrified. We don’t know much about it. We don’t have the tests needed for it.
People aren’t doing what they can to flatten the curve. People feel invincible.
<br />
<br />
We do know it spreads quickly. We also know that it is deadly. We know that not
a single one of us have ever lived through or faced something of this magnitude
of unknown.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yet, the “advice” I keep hearing from people is: “Don’t let
fear control you.” “Choose to live.” “Promise your kids they will be ok.” and,
of course, “I promise you will be ok.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Can we stop with that shit?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here is the reality, none of us have ever experienced this. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You don’t
want me to be afraid, yet you want me to wash my hands every 10 minutes, not
touch my face, sanitize every single thing that comes into my home, every
surface, immediately wash my clothes after being around other people, and you
want every 5<sup>th</sup> commercial on TV to remind me who is at the highest
risk.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do you know who is at the highest risk? My 17-year-old
daughter. My father. My grandmother. And, due to his inability to effectively communicate,
my son with a disability. My ex-husband. Myself. So basically, 4 generations of
my family, my children and both of their parents. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But, don’t be afraid. Live without fear.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Choose to live” but stay away from people, keep a 6-foot
distance, ideally never leave your home. Take a walk but avoid anyone who may
be on the sidewalk. Go to the store but don’t let anyone stand close to you. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My biggest issue is with the word “Promise”.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You can’t promise me anything and if you’ve read any of my
previous blogs you know I will NOT use the word promise with my kids unless I
know I can follow through. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here is the reality, you can’t promise me that any of us
will be ok. You can’t promise me that even with all of our protection and
efforts that we won’t get this. You can’t promise me that if we get it, we will
have a mild case and be ok. You can’t promise me that we, or someone we know,
won’t die. So do not ask me to make that promise to my children, because I won’t.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can promise them that I will follow every guideline, as
will their dad and his family. I can promise them that we will do all we can
but we cannot promise that any of us are completely safe from this. I won’t. It
is irresponsible. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do you want to know why this bothers me so much? Because a promise
is a false sense of hope. If someone you look up to, a parent, or a person of
authority makes you this grand promise that you will be ok, you believe them.
You let your guard down. You think others are overreacting. You think you have
nothing to worry about when in reality you should worry and you should keep
your guard up.<br />
<br />
They can try but not guarantee they can protect you or your family.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It bothers me that in a time of fear, no one is validating
that fear. No one is saying that it is ok to have that feeling. Instead of
teaching ways to cope with that fear in healthy ways, we are just told: “Don’t
be afraid.” That’s not helpful. This is a valid feeling. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Anxiety is high. Panic attacks are more prevalent.
Depression is at an all-time high. People are watching what is happening in
other countries and in ours. They know people are dying by the hundreds. They
know that we do not have the medical capability to get through this at the
current pace. They know our medical personnel and first responders do not have
the protective gear they need. They know that the numbers in the US are a
fraction of what reality is because, at least where we are, nearly impossible
to get a test. Instead, we are told to assume we have it, but that doesn’t count
in the overall numbers. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m scared. I’m not going to hide that from my children or
lie to them. I won’t make them false promises. I won’t fill them with fear but
I will approach them with honesty. I will help them understand the ways they can
protect themselves. I will teach them the importance of communication and
telling people in your life that you love them. I will teach them that while we
cannot go out and make deliveries or pick up prescriptions for others, we can
donate to the coffee fund for medical personnel at our local clinic. We can
send cards and messages to people who are alone. We can do things from inside
our home that keeps us safe and make a difference. And that by not leaving the
house, we ARE making a difference. We are doing our part to flatten the curve.
We are preventing the numbers from growing. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We don’t know that we haven’t been exposed and that we won’t
be hit with this tomorrow from exposure before we tightened up our
quarantine efforts. We do know we can appreciate every single day. We can take
time each day to talk about memories that are important and plans for what we want
to do after this has passed and we are in a better place again. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I DO believe that there is an end to this. I do believe that
the majority of people will not need medical attention and be able to self-treat
at home. I do believe we will come together on the other side of this. I do
believe this will forever change us. I pray it is for the better. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I also see the reality and I won’t ignore that or tell
anyone who is feeling more anxious or scared that they are wrong for feeling
the way they do. And I won’t promise them they will be ok. I hope they will. I
really hope they will but I cannot make a false promise. So, if you could lay
off that shit, those of us who live with and love people who are at risk for
life-threatening complications from this would appreciate it. Because this monster that we cannot see is the scariest one yet.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br />
<br style="mso-special-character: line-break;" />
<!--[if !supportLineBreakNewLine]--><br style="mso-special-character: line-break;" />
<!--[endif]--><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-74324969157613141982020-03-23T19:41:00.000-07:002020-03-23T19:41:01.745-07:00What if it was the last time?<br />
<div class="MsoNormal">
The kids and I have been home for longer than most. My
daughter has a compromised immune system and my son has a disability that limits
his ability to tell me how he feels. I’ve kept them as much in a bubble as I
can. That isn’t exactly new to them – it started shortly after my daughter’s
diagnosis at the end of last May and jumped into high gear at the start of flu
season, knowing what the flu could do to her. I work from home doing freelance marketing
and social media work for small businesses, ghostwriting, and have a side gig
baking the best cupcakes you could imagine,– my work has come pretty much to a
halt which has left me a lot of time to think.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A lot has me scared right now. I’ve been paying attention to
this virus since it started spreading through China. I tried to convince myself
that the US would take the steps to prepare and have more than enough testing
kits and medical supplies available as I watched it ravish through Italy. I
thought of the little things – picking up an extra box of goldfish crackers or
extra 6 pack of my son’s favorite lemonade when I was at the store, sometimes I’d
grab an extra pound of hamburger or bread for the freezer which came in handy
when the stores started to become aisles of chaos and hoarding. I don’t have a lot,
I certainly didn’t hoard, but I have enough to get us through a couple of weeks
which is something I’ve always tried to do. <span style="mso-spacerun: yes;"> </span>Although, I overlooked picking up an extra can
or two of Lysol or hand sanitizer because I thought we were good there, it turns
out I was good on Febreze, not Lysol, but we have enough Bath & Body mini
sanitizers to last us awhile so I’m not going to panic about that one yet – but
it is a crucial part of our day to day as it is with many with autoimmune diseases.<br />
<br /><b>
What I didn’t think about was saying goodbye.</b> I didn’t think that this may be
the last time I see people I love and care for. While I saw what was happening
elsewhere, I couldn’t grasp that part – or maybe I just didn’t want to think about
or consider it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then last Sunday afternoon happened. I called my dad
after not being able to reach my mom. On the other end, I heard him gasping for
air and trying to talk. He was barely saying anything, and he didn’t need to.
He said they were calling the ambulance and that was all I needed to know. I
told him to hang up and have mom call me later. And I told him I loved him. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you’ve never heard someone gasping for air in an attempt
to breathe, I pray you never do. It’s a sound you don’t forget, especially when
it is someone you love. I’ve heard it before that call with my dad and it is
one of my bigger fears with my daughter’s autoimmune disease, the only thing I
fear more than her lungs being attacked is death.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That moment on the phone with my dad, my entire world
started to crash around me. I couldn’t remember the last time I saw them –
although I’m sure it wasn’t too long ago, or the last time I saw my sisters, my
grandma, my cousins, aunts, and uncles. I couldn’t think of when I last saw my
friends. All I could think was that I wouldn’t have known it was the last time
we would see each other, and the feeling crushed me. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I thought of all the times I could have done or said more,
of all of the things I wish I had never said. I wondered if they knew how much
I loved them, how much I love our memories and how much I want more than
anything for us to make more. I wondered if I hugged them enough to get us
through until I could hug them again. And I wondered what if there isn’t an
again. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My dad was diagnosed with double pneumonia and the onset of
congestive heart failure. Hospital visitors are now very restricted, understandably,
but I cannot begin to put into words how much it hurt me, and my sisters, to
not be there by his side. He tested negative for COVID-19, it took several days
to get the results back, but we were thankful he was able to be tested as many
others are not. Test kits are incredibly scarce. <span style="mso-spacerun: yes;"> </span>He is home now, recovering, with my mom – a nurse
– and their black lab, Jessie, by his side. I still can’t go see him and it
hurts. I want to hug him and tell him how much I love him. I really just want
to hug him. My dad gives the world's best hugs. Right now, I need one of those. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My daughter is high-risk for COVID-19 to be detrimental or
deadly to her. My dad is also. So is my grandma and while none of us have
admitted it, my mom likely is too. If I leave my house, I risk picking it up
and taking it to any of them. My parents live an hour and a half away, it would
include a gas station stop. There are simply too many factors to risk any of
their lives even though it hurts.<o:p></o:p></div>
<div class="MsoNormal">
It hurts not knowing who I will see again. It hurts knowing
that if I lose someone I love, we won’t be able to gather to mourn them or
celebrate their incredible life. It hurts to know that I can’t remember our
last goodbye and I certainly didn’t think it would be our last. I hold out
hope, still, that it wasn’t.<o:p></o:p></div>
<div class="MsoNormal">
I watch through the view of social media the hate that has filled
our country and our lives. I look at how this crisis, which will take the lives
of many, hasn’t brought us closer together but torn us further apart. I hate
that people aren’t taking any of this seriously, either feeling invincible or
not caring who they could infect. I can’t help but wonder if it is still
possible to save this country that I love.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember after 9/11 how the world came together, how our
nation came together and stood strong. I miss those days. I miss the unity. I
miss how we cared for each other. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This virus won’t be that much different, it is its own form
of terrorism. Innocent people will lose their lives. Families will suffer. All
of us will forever be changed. None of us, not even those of us watching what
was unfolding in other countries truly grasped the magnitude of this, some still
don’t. So, why can’t we let it unify us?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Is it because we can’t see it? Is it the political divide?
The lies? The constant vetting of information to really know what is happening?
<span style="mso-spacerun: yes;"> </span>The blindness to what is clearly not true
and what is true? <br />
<br />
We have sunk so far from the lies and the hate that it’s like we’ve been trekking
through the mud and we are now so deep that making the next step feels
impossible, or like our foot will come out of our boot that is trapped by the suction of the mud and we will fall.<o:p></o:p></div>
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How do we fix that? How do we free our feet from being
trapped and pull together again, as a nation, as a world sharing one planet?<o:p></o:p></div>
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<i><b>Maybe more people need to stop and think – when was the last
time you saw your parents? Grandparents? Best friend? Significant other? Cousins?
Aunts? Uncles? Friends? Did any part of you think it would be the last time?
And what if it was?</b></i><o:p></o:p></div>
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I see people who have lost someone unexpectedly often post
to social media asking, <i>“if we knew we would be saying goodbye, would this have
been easier?</i>” I don’t have that answer for them or for us, but I can tell you
it is on my mind a lot more these days.<o:p></o:p></div>
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<b><u>If we knew this virus could be goodbye for someone in our
lives, or for us, are we doing all we can, so they know we love them before they are gone?
</u></b><o:p></o:p></div>
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Our world has been turned upside down in a way that none of
us have ever experienced. We have the opportunity to use this time to rethink
our priorities and come together. We have the opportunity to use this time to
be kinder, to reach out (virtually or by mail) and tell our family and friends
we love them. We have the opportunity to help the most vulnerable be safer in
this time of the unknown by picking up groceries or medications for them or
even simply checking in on them or sending a card to say Hello.<o:p></o:p></div>
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I know it won’t solve all our problems, but I have to
believe that in a world filled with hate that love will win… again, even if we
have to fight for it. <o:p></o:p></div>
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<b><i>For my friends and my family, I love you so much. I love you
more than I can find words to express but I promise to keep trying. I am thankful
for every single memory you’ve given me, the times you lifted me up when I had
fallen, and the times you let me lift you. I pray each night that every single
one of you makes it through this horrible time we are living in and we have the
opportunity to see and hug each other again. I’m thankful for the life lessons
you’ve taught me and the ones we’ve learned together. I wish you and your loved
one’s good health and the ability to unite again. </i></b></div>
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<br />While I understand wanting to get everyone together for a party when this is
over, I really just want to hug each one of you and remind you that you are
loved now and always have been. I want some one on one time to catch up, to reminisce, to just pause in the moment of being together.<br />
<br />
If you take nothing else from this, please take away that this virus could take
the life of any of us at any given time. Use the time you have now to tell
people you love them, are thankful for them, or just that you are glad they are
in your life. Don’t wait. We really don’t know what tomorrow will bring. And,
if tomorrow or next week or next month brings an end to this all and we are all
here to talk about it and tell our grandchildren about it – what did it hurt to
tell someone something important?<br />
<br />
Please, be kinder. Be more patient. Be more understanding. And please, don’t
take any day for granted.<br /><br />And, just in case it needs to be said (again) say it by text, phone, email, mail, any way you can that keeps you in your home and away from each other for now. Please follow the guidelines for social distancing and the shelter in place. <o:p></o:p></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-1036127874124495142020-02-29T09:57:00.001-08:002020-02-29T09:57:54.731-08:003 months. 11 years wasn't enough.<br />
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3 months, Daisy May. <o:p></o:p></div>
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3 months since I’ve been able to rub your ears. 3 months
since I’ve rolled my eyes at you for eating something you shouldn’t. 3 months
since we’ve taken a car ride. 3 months since you’ve jabbed your feet into my
back in the middle of the night while you stretched or laid your head across my neck to keep me in bed when I wanted just 5 more minutes before getting up. 3 months since I felt
complete and safe. 3 months I’ve cried.<o:p></o:p></div>
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The ground is mushy outside. You should be tracking
pawprints throughout the kitchen, trying to sneak your way into the living room
without getting your paws wiped. <o:p></o:p></div>
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Today, this is hitting me a little harder and I think it’s
time I take a few minutes to write it out so that *maybe* my heart can move
forward a bit and not hurt quite so much.<o:p></o:p></div>
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As everyone who knows me knows, we lost our 11 ½ year old
Brittney spaniel, Daisy, the day after Thanksgiving. She had been facing some
challenges the last couple of years so her death shouldn’t have shocked me the
way it did.<br /><br /><o:p></o:p></div>
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But here’s the thing, she was doing so good. Her meds were
helping, she still had all of her spunk, I had absolutely no reason to think
that when I got up that day and she wasn’t right beside me that it would have
meant I was so close to losing her.<o:p></o:p></div>
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<br /></div>
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It was the craziest thing. There were other days, months
prior when I thought… ugh, we might be getting close. But not then. She had
been doing awesome. I was positive we had bought a lot more time with her.<o:p></o:p></div>
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Waking up and seeing her struggling to breathe, crushed my
heart but I still didn’t think this would be the day we said goodbye. I thought
that Dr. Sarah could once again fix her with her superhero vet skills – she’s
worked miracles in the past.<o:p></o:p></div>
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Even when Dr. Sarah said it didn’t look overly encouraging,
I still didn’t think I would truly lose her. But we did.<o:p></o:p></div>
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When she crashed that day, she crashed hard as though she
had been holding on so tight to all of us she used all of her strength to have
good days and then she just couldn’t anymore.<o:p></o:p></div>
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She laid with her head on Allison’s arm as she took her last
breaths. I stroked her ears. We both cried. Yet it was all so surreal. <o:p></o:p></div>
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It was peaceful, which I am thankful for and wish humans had
that same option – to just go to sleep and quietly pass over to Heaven instead
of suffering. It truly was peaceful. It just didn’t seem real.<o:p></o:p></div>
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Maybe because it all happened so fast. She wasn’t ok, we
went to the vet, I talked to the kids (who were at their dad's), gave my parents
a heads up, and then just moments after the vet office closed that day – we
were there, holding her, kissing her, and saying goodbye. Shortly after that, we
made the hour and a half drive to my parents to bury her, in the rain, at her
favorite place to really run free. It was all just so fast.<o:p></o:p></div>
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Here’s the thing, I’ve <b><i>always</i></b> owned pets.
There has only been a couple of years, right after high school, when I didn’t
have a pet – but we still had family pets at my parent’s house so, while one
wasn’t living right with me, I still had pets back home.<o:p></o:p></div>
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Over the years, I’ve said goodbye to horses, dogs, cats,
turtles, hamsters, and chickens. And, it hurt to lose each of them – especially
my cat that I had for 21 years – but, it hurt and I moved forward.<o:p></o:p></div>
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That isn’t happening with Daisy. I’m stuck in the hurt. I
physically hurt when I think of her, my chest gets tight and I just ache I miss
her so much. I still cry – pretty much daily, like I just can’t let go of her.<o:p></o:p></div>
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I swear so many times a day that I hear her at the back
door or I panic that I have forgotten and left her outside.<o:p></o:p></div>
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I sleep less, who knew that was possible because she’s
missing. She hogged the entire bed. I slept on my little slice of bed while she
stretched all the way out, diagonally across the rest of it until one of the
cats – usually Emmie, would come up and want to snuggle with her. Then, and
only then, would she move to the floor.<o:p></o:p></div>
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Daisy was with me through so much from my divorce to Allison’s
diagnosis – she was the one who nudged her head up against mine through many
tearful moments. I rarely left the house without her. I bought special covers
for the seats of my new car because I didn’t want dog hair all over. That
lasted about 2 trips, then it was back to me just opening the door and letting
her in. Maybe it’s how alone I feel without her that keeps the pain so front
and center.<o:p></o:p></div>
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There is guilt, too, that we didn’t spoil her enough, that I
got frustrated when I shouldn’t, that Parker didn’t love her the way he did our
first dog. Poor Daisy wanted nothing more than for Parker to love her – and she
tried, always but he just wasn’t having it. He never bonded with her the way he
did Emmy, despite her laying on him when he was sick and never leaving his side
– even when he told her to go away. Maybe it’s because she just knew. Maybe it was the rare hug, or pet, or giggle when she would do something silly. <o:p></o:p>Maybe she knew he loved her and understood he didn’t know how to show it. Maybe that is why she continued to stay as close to him as he would allow.</div>
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I know, as the parent, I am supposed to suck this up and
move on but I’m seriously stuck. <o:p></o:p></div>
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I think of how much she loved to run at mom and dad’s, 22
acres of wide-open heaven and she loved it. </div>
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<br />
I think of how much she loved the snow. We were 2 peas in a pod when the snow
would fall. Despite having basically no fur on her belly, she didn’t care – she
was running, jumping, and rolling in the fresh snow each time it would fall.</div>
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I think of how much she trusted Allison, how she knew that Allison would go out
of her way to snuggle with her if Daisy just gave her the right look. </div>
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a</div>
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I think of how she would refuse to eat when I would be gone. If I leave the
cats for an hour the eat all of their food, convinced they are starving but
Daisy would go days without eating if I was away for work or fun. It took
someone sitting next to her on the floor encouraging her to eat most of the
time. Even then, it wasn’t much.</div>
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I think of how often you would steal the cat's bowls and eat the rest of their food then act like you didn't do it. </div>
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I think of how we used to take very late night runs, back in my running days.
She was the best running partner.</div>
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I think of how she loved the cat beds more than the ones we got for her. </div>
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I think of how she's not there waiting for me to finish my shower. </div>
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<br />I think about how much she loved to pick up the kids from school, and how much they loved to see her waiting for them. </div>
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I think about how much we loved watching the fireworks together in the back yard.<br /></div>
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I think of ALL OF THE RABBITS you brought to me, I won't lie - I don't miss the dead rabbits, especially the ones she snuck into the house. </div>
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I miss how when she was too hot (which is nearly impossible in my house) or stressed, she would go lay in the bathtub. </div>
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I think about how much she and the kids loved the big front window. </div>
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I think about how she was never too big... never too big to snuggle, never too big to be a lap dog. </div>
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I think of how I wish I had done more with her.<br />
<br />
She was my girl.<o:p></o:p></div>
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My friends have been amazing through all of this. I’ve received
so many cards and gifts, so many ways to remember her. I have some truly
thoughtful people in my life.<o:p></o:p></div>
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I just don’t know when this one is going to get easier. 3
months have passed and if you ask me about her, I’ll still cry. If I turn down
the wrong aisle at the store and end up in front of the dog food, my eyes will
well up with tears. In the most random and unexpected times, it will hit me
that she is gone and as hard as I try, the tears will still flow. I still cry. Daily.<o:p></o:p></div>
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I’ve lost my sense of security, which is laughable because
Daisy was the worst guard dog. She loved everyone, except the mailman – I never
understood that one. But, I felt safer with her here and in the back of my
mind, I’m not convinced she would have been so friendly if someone who was not
welcomed came into the house. Daisy knew us and could read us like a book. I
believe she would have sensed that fear if it came down to it. <o:p></o:p></div>
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She was seriously just the best. I could not have ever
asked for more from her. She was truly a special dog and a very special part of
our lives, especially mine.<o:p></o:p></div>
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I am sure that one day a few years from now, there will
another dog in my life. It can’t be now but when we’ve gone through our big
transition and I’m on my own without Parker attached to my hips 24/7 – Daisy will
send along the right dog for me. She may try to send more cats, but let’s be
real – I have enough of those! It’s just going to be awhile and until then, I
need to find my way without Daisy and that sense of security. <o:p></o:p></div>
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I just don’t think it will be anytime soon.<o:p></o:p></div>
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I knew that when the day would come for us to say goodbye it
would be hard. I just never expected the pain to linger the way this has. Daisy
was so much more than a dog though, she was part of our family, she was my soul
dog – she just understood me, all 3 of us, so very well and I miss that. I miss
her, every day, I miss her.<o:p></o:p></div>
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<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-39264912036435885222020-01-09T11:03:00.000-08:002020-01-09T15:37:34.805-08:00You should.... <br />
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Life is not fair. We all know that. It wasn’t meant to be.
If it were, there would be no underdogs or inspiring stories of triumph. If life
were fair, there would be no poor, no rich, no brilliant, no challenged – it would
just all be the same. But can we just stop for a moment and acknowledge something?
There is a difference between “life isn’t fair” and being overloaded with
unfairness - or as most of us call it "Life". <o:p></o:p></div>
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I was talking with an acquaintance the other day in the
grocery store (which I believe is people’s favorite place to talk to me at), she
was telling me about her child’s plans for life after graduating for college
this spring. I told her how very proud I was of his accomplishments and plan
for the next stages in his life. What happened next though sent me into a bit
of a tailspin that I’ve been stuck on ever since. She asked me, “What’s next
for Parker?”. I said that Parker has 1 more year of school left as he can stay
up til his 22<sup>nd</sup> birthday – after that, we are unsure. I have ideas,
I have hopes, I know what *I* want but all of it will take a community coming
together, all of the cards falling in the right places, and – as always – a lot
of work on my end. She said, “Maybe you should just open a bakery so he can
work for you!” I smiled and softly said, “Well, he would hate it for starters.”
She laughed and said, “Well, life isn’t always fair, sometimes we have to do
things we don’t like.”<o:p></o:p></div>
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And, well, that was where we went from friends to acquaintances
because she poked an open wound so hard that I snapped back, just a bit.<o:p></o:p></div>
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“You’re right. Life isn’t always fair and sometimes we have
to do things we don’t want to. But let me ask you this – if your son could not
find a job, would you drop everything, find the financing, and start a business
he didn’t like just so he could work?”<br />
<br />
She just stared.<o:p></o:p></div>
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“No. You wouldn’t. Not only would you not do this but no one
would expect you to. Yet, everyone has this expectation of special needs
parents. Do you really want to talk about life not always being fair? Because
this is going to take a while.”<br />
<br />
She smiled, patted my arm and left. <i>Bonus points to me for not tripping her
as she walked away.</i> <o:p></o:p><br />
<i><br /></i>
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She’s not the first to say this to me – the part about
starting a business so Parker has valid employment. I hear it frequently. And,
like I am sure she was, it is well-intended and not the worst of all ideas. I consider it frequently as I try to work out in my mind what that would be and
how it would work given my son truly shines most when he is given the opportunity
to be independent in the company of others. <o:p></o:p></div>
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I love my children more than life. I would do anything for
them. I want them to be happy contributing members of society. I want them to
make a positive difference in our world. So, pretty much, I’m like every other
parent.<o:p></o:p></div>
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Except, I still tuck my 20-year-old son into bed every
night (at least 3 times). I help him with self-care (bathing, shaving, wiping, nail clipping). I
help him get ready for school each morning. I give him his meds 3 times a day. <span style="mso-spacerun: yes;"> </span>I take pride in the leaps he’s made (being
able to get his hair cut, not letting nail trims become battlefields, getting
dressed on his own). I still cut most of his food. I can’t always understand
what he says. I get yelled at almost daily out of his frustration. (<span style="font-family: "wingdings"; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">ß</span></span> also a huge leap, he
used to be incredibly aggressive to me and physically attack me – I’ll take
yelling and the occasional swear word any day over that.) I miss meetings,
events, nights out, and family functions when his days are not his best, or
when he is too overwhelmed or on good days when I know my leaving would throw
that into a tailspin. I continue to advocate for his rights at school (which I’ve
been doing for over 17 years now – and amazingly it is still often a battle). I
advocate for his rights in the community and in our world – because not
everyone feels he belongs here or that is life is of value (<i>for the record, those people are assholes</i>).<o:p></o:p></div>
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<b><u>I plan. </u></b>Every single special needs parent plans as though
their life depends on it – because it feels like it does. Not just today or
tomorrow or this week or month but for years into the future. I cry frequently
and have panic attacks over what will happen to him when I die.<o:p></o:p></div>
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I’ve been working on Parker’s long term housing plan for
more years than I can remember, finally pushing that dream forward over the
past year. There are still so many details to iron out. You know who gets to do
that? Me. Or this won’t happen.<o:p></o:p></div>
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This is our life. And most days, <b><i>I love it</i></b>. But many days it
also is incredibly overwhelming – especially when I think about the future. <o:p></o:p></div>
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There is NOT a lot of work for my son. There are not a lot
of places willing to “hire” him, even if it is just volunteering and a “job” in
name alone. And I’m not alone. Parents of special needs children all across the US are doing exactly what that acquaintance of mine suggested and starting
businesses so that their child can be employed and of value to their community.
<o:p></o:p></div>
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This is amazing and wonderful and awesome. And so fucking
unfair. No one else has to do this. No one with a typical child, even if they
are lazy, has to start a business (most often a non-profit) in order for their
child (and their friends) to be able to work.<o:p></o:p></div>
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Would I like to start a business? I don’t know. I have no
idea what it would be that would engage Parker. I don’t know of any jobs that specialize in watching sports, COPS or Paw Patrol. I don’t know of
any jobs where the top qualification is <i>seeing how much you can get your mom
to do for you</i> – a skill he highly excels at. And, there is that little fun
fact <b>that <u>he needs a world outside of me.</u> </b>He is with me 7 days a week.
Yes, he goes to his dads during the week but on the day he goes, I get him up
and ready and the next day when he comes back – he’s coming back to me. I see
him every single day (<i>not at all a complaint – I only let him leave because I
have to</i>). I would be ridiculously arrogant and wrong to say he doesn’t get sick
of me… because he does. <o:p></o:p></div>
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He has a job in the community through school right now and
he <b>LOVES</b> it. He walked in not knowing anyone and has a new family who he
adores now thanks to this opportunity. He needs, wants, and deserves this. He
truly does and I would do anything to keep him there forever – because he knows
he is safe, valued, and has purpose. <o:p></o:p></div>
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I’m not alone in the thought running through the back of my
head though about dropping any plans I have to ever retire and start a business
so that my son has employment. In a 5 minute (probably less than 5 because I
was also playing with the cat and the laser light) I found these business that
parents started to that their child could have employment.<o:p></o:p></div>
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<a href="https://www.southernliving.com/news/special-kneads-treats-georgia-bakery-jobs">https://www.southernliving.com/news/special-kneads-treats-georgia-bakery-jobs</a>
( <span style="font-family: "wingdings"; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">ß</span></span> I know the mom who
started this and adore her!!! I also love being able to say I know her because she
is an absolute inspiration!)<o:p></o:p></div>
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<a href="https://globalnews.ca/news/6362112/special-kneads-bakery-mom-son-with-cerebral-palsy/?utm_source=GlobalBC&utm_medium=Facebook&fbclid=IwAR3eg7L-oGb5YUtT8fbRoE_NKnO43FKC8V5c5FOHLoTE9Dm3fuDdTPUvyPs">https://globalnews.ca/news/6362112/special-kneads-bakery-mom-son-with-cerebral-palsy/?utm_source=GlobalBC&utm_medium=Facebook&fbclid=IwAR3eg7L-oGb5YUtT8fbRoE_NKnO43FKC8V5c5FOHLoTE9Dm3fuDdTPUvyPs</a><o:p></o:p></div>
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<a href="https://www.autismspeaks.org/blog/i-opened-cafe-employ-my-daughter-and-others-special-needs">https://www.autismspeaks.org/blog/i-opened-cafe-employ-my-daughter-and-others-special-needs</a><o:p></o:p></div>
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<a href="https://www.today.com/food/coffee-shop-aims-change-how-people-special-needs-are-employed-t169164">https://www.today.com/food/coffee-shop-aims-change-how-people-special-needs-are-employed-t169164</a><o:p></o:p></div>
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<a href="https://www.bittyandbeauscoffee.com/coffee-shop-hiring-people-with-down-syndrome-is-fast-becoming-a-beloved-chain/2019/">https://www.bittyandbeauscoffee.com/coffee-shop-hiring-people-with-down-syndrome-is-fast-becoming-a-beloved-chain/2019/</a><o:p></o:p></div>
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<a href="https://www.mentalfloss.com/article/548357/popcorn-for-the-people-autism-employment">https://www.mentalfloss.com/article/548357/popcorn-for-the-people-autism-employment</a><o:p></o:p></div>
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<a href="https://www.washingtonpost.com/express/wp/2014/03/07/camerons-coffee-and-chocolates-serves-up-meaningful-work-for-young-people-with-intellectual-disabilities/">https://www.washingtonpost.com/express/wp/2014/03/07/camerons-coffee-and-chocolates-serves-up-meaningful-work-for-young-people-with-intellectual-disabilities/</a><o:p></o:p></div>
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<a href="https://www.womansday.com/relationships/family-friends/a59733/caregiver-family-business-special-needs-jobs/">https://www.womansday.com/relationships/family-friends/a59733/caregiver-family-business-special-needs-jobs/</a><o:p></o:p></div>
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<a href="http://www.metrokids.com/MetroKids/SpecialKids/Start-a-Business-to-Help-Your-Special-Needs-Child-Get-Work-Experience/">http://www.metrokids.com/MetroKids/SpecialKids/Start-a-Business-to-Help-Your-Special-Needs-Child-Get-Work-Experience/</a><o:p></o:p></div>
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<a href="https://www.nolimitscafe.org/">https://www.nolimitscafe.org/</a><o:p></o:p></div>
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<a href="https://www.inquirer.com/news/special-needs-business-startup-classic-rock-auto-baker-industries-crafters-for-life-20191113.html">https://www.inquirer.com/news/special-needs-business-startup-classic-rock-auto-baker-industries-crafters-for-life-20191113.html</a><o:p></o:p></div>
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I can’t say it won’t happen. I can’t say I won’t ever start
a business so that my son has employment because the reality is, I don’t know
that I won’t. I know right now it is not an “I will”. Right now it is a “for
the life of me I cannot see how I could ever make that work and not potentially
lose everything.” Especially since my passions and Parker’s do not align. And
because it goes against everything I am trying to do to make him independent without
me. Seriously, it’s a ridiculous damned if you do, damned if you don’t type of
thing. <o:p></o:p></div>
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<br /></div>
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There are just as many parents starting housing communities
and adult programs so that their adult child has a safe place to live – like
these incredible people I know … </div>
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<br />
Laura <a href="https://www.blueridgecommunityfarm.org/?fbclid=IwAR2Ib4bp-2X0DPFO2Ya1uSs88-hx07xoFtZFEHwHS3d4iFVqxDljl7S0_Ok" target="_blank">Blue Ridge Community Farm</a><br />
Brad <a href="https://www.campbigsky.org/" target="_blank">Camp Big Sky</a><br />
Orah <a href="https://brianondrako.com/podcast/hope/" target="_blank">HOPE</a><br />
Michele <a href="https://steps4success.net/?fbclid=IwAR1rBJit8nrMSes_2ZUT4w9UmO5rjU6wlakjXlQI_k4a3gNWDLbYyX2Dgyg" target="_blank">Steps4Success</a><o:p></o:p></div>
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And that’s just 4 people I know (and I know I’m leaving
people out – it is not at all intentional!) I didn't even google for more).<o:p></o:p></div>
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We think about this every day. We lay awake at night trying
to figure out how to make the best life possible for our kids and then how to
make that truly happen.<o:p></o:p></div>
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<br />
If you ask any of the parents above WHY they are doing this, it isn't because it was a life long dream. It was because if they didn't, no one else would. </div>
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I have to admit (I’ve been saying this a lot lately) <b><i>I’m
tired</i></b>. I’m tired of all of the fighting (<i>I mean, advocating</i>), I’m tired
of planning, I’m tired of answering every demand throughout the day, I’m tired
of trying to make what is next work by jumping through every hoop known to man.<o:p></o:p></div>
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I get it, life isn’t fair -but could we give the special
needs parents a bit of a hand? They could really use a break. Why don’t YOU
start a business to employ our adult loved ones? Why don’t YOU create housing opportunities
and programs for them? Why don’t YOU quit your job, forego retirement, cash in
your 504 and give our adult children a better quality of life in the community?
Because right now, it is solely up to us on top of everything else we are
attempting to do in our very unique but demanding lives...and we are tired.<o:p></o:p></div>
<br />Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com0tag:blogger.com,1999:blog-1394541577708014059.post-293953432075123082019-10-23T23:15:00.001-07:002019-10-23T23:15:13.518-07:00Soon You'll Get Better... <br />
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Do not read this without a Kleenex. I am not going to be
responsible for you crying without a way to wipe your eyes. If you don’t have
one yet and you are not willing to wipe your tears or nose on your shirt – stop
and go get something. I don’t ever give this much of a solid warning – that should
be your first clue, you need a box of Kleenex. </div>
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While I was researching one of our upcoming comedians for the <a href="http://www.jukeboxcomedy.com/" target="_blank">Jukebox</a>, <a href="https://www.kellyehoward.com/" target="_blank">Kellye Howard</a>, I started listening to her "<b><i>Be Less Petty</i></b>" series on YouTube when she started an <a href="https://www.youtube.com/watch?time_continue=27&v=kQzhNVdtYAw" target="_blank">episode </a>with a Maya Angelou quote that hit me hard, <b><i>reminding me I need to write</i></b>. My mental well being depends on it. I have to make time to write. </div>
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<br /><b><i>So - here we go...</i></b><o:p></o:p></div>
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Fun Holly fact. In 2007 in Las Vegas, I “met” Taylor Swift
in the women’s bathroom. By “met” I mean, I had no clue who she was but said, “hi”
to her as I washed my hands and wished her a good day while we stood by each
other at the bathroom sink in the MGM hotel in Las Vegas. I didn’t know who
this tiny person with long beautiful, perfectly spiral curled hair wearing the
white sundress and cowboy boots was – but, she looked like she needed a minute
to prepare herself before walking back out. While I had my picture taken with many
country music stars that day (none of who I knew but my friends did), I couldn’t
bring myself to ask her for a picture. She looked like she needed a friendly
smile, and reassurance that she didn’t have to be “somebody” at that moment.
And that is what I gave her. We were simply two people saying “hi” and wishing
each other a good day at the sink. I’ll never forget it though. Somewhere I
have a blurry picture of her walking out of the bathroom and being rushed by
fans. One day, maybe I’ll go through that massive tote of pictures I have and
add it to this blog. (The relevance of this will come later...)<br /><br /><o:p></o:p></div>
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The past 5 months have been some of the hardest of my life.
Allison’s JDM (<a href="http://www.curejm.org/" target="_blank">juvenile dermatomyositis</a>) diagnosis has really been a hard one
for me to mentally work through. As a parent, at least <i>as a mom</i> – <i><b>or at least
for me </b></i>– everything in your world stops and forever changes when you hear that
your child has a <b><u>life-threatening anything</u></b> – in our case, an autoimmune
disease.<span style="mso-spacerun: yes;"> </span><b><i>Everything.</i></b> The words “life-threatening”
even when you know it should be treatable never stop bouncing around in your
head. Ever. Or at least not yet in the last 5 months.<br /><br /><o:p></o:p></div>
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We had a pretty good scare with Allison in early August. As
we were about to leave our last appointment at 5 pm on that Friday – after multiple
appointments with good news – my phone rang. It was Allison’s doctor, something
wasn’t good with one of her tests. She needed a procedure done the following
Monday. Allison had plans with her friends that weekend so we came home, then
quietly Sunday night, without telling anyone (a very few close
family and friends knew), we returned to Mayo for her Monday morning procedure.
Her dad and I by her side until they moved us to the waiting room, Grandma at
the hotel nearby with Parker and William, Jen and Dan just a text away – we sat
quietly waiting. We spent a few hours in recovery before the long drive from
Rochester to home. We knew it would take time to get all of the test results
and even then, nothing could be confirmed until we returned in early October to
repeat some tests and compare.<o:p></o:p></div>
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It was some of the longest weeks of my life.<br /><br /><o:p></o:p></div>
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During that time, in late August, my friend Cortney posted
one of Taylor Swift’s new songs on her Facebook page. “<b><i><u>Soon You’ll Get
Better</u></i></b>” written about her mom’s experience with cancer, is what
Cortney shared. I won’t lie, even after briefly “meeting” Taylor, I never listened
to her music. It didn’t exactly fit into the music I liked. I had nothing
against her and always remembered the girl in the bathroom when people would
talk crap about her – that girl that looked like she was trying to convince
herself she belonged there when I could see she really did, even without knowing her. So, despite my soft spot for her, I’ve never heard
a song of hers (<i>Sorry, Taylor!</i>) and I didn’t click on this one because of her.
I clicked on it because it also said, “Dixie Chicks” and those ladies, I adore.<o:p></o:p></div>
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<br /></div>
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<b><i>Nothing prepared me for what I heard.<o:p></o:p></i></b></div>
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<b><i><br /></i></b></div>
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<b><i>Nothing prepared me for the images that went through my
head.</i></b><o:p></o:p></div>
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<br /></div>
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Nothing prepared me for buying and downloading the entire
album and falling in love with Taylor Swift either (<i>but that’s for another day!
– Seriously, her album “Lover” is freaking amazing. I listen to it repeatedly
in the background and in the car every single day. I am obsessed with every
single song on there. Amazing. For real.</i>)<o:p></o:p></div>
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<br /></div>
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People often tell me when I write, that I am saying how they
feel or think – that it is like I am inside of their minds. This song did that
for me, and still does every time I hear it.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I haven’t written in a long time. I’ve been keeping a lot
bottled up inside of me. I’m struggling with this diagnosis. It is kicking my
mental well being’s butt. I’m so scared, sometimes I can’t breathe. <span style="mso-spacerun: yes;"> </span>I am trying but most days, I am seconds away
from a panic attack scared of making the wrong decisions with this.<o:p></o:p></div>
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<br /></div>
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I know that Allison's outlook <b><i><u>should</u></i></b><u> </u>be
really good once we get things under control and on a good treatment path. I
tell everyone she <b><i><u>will</u></i></b> go into remission and stay there. I
also know all of that is wishes and sometimes wishes are nothing more than the
bullshit we try to swallow to make it through another day knowing we damn well
may be wrong. And waiting these past several weeks knowing our lives were
possibly about to change in a significant way reminded me of how fucking scary and
life-changing JDM can be and I hated it, even more than I had before.<o:p></o:p></div>
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<br /></div>
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No one wants this for their kid. No one wants to have to
make the decisions of what really strong drugs you will have put into your
child’s body in an attempt to make it better, not knowing long term what the
impact may be. No one. No one wants to Google the diagnosis, the medications, the infusion
therapies, the MDA5 antibodies, or all of the other things you Google knowing
you shouldn’t but you believe knowledge is power so you do it anyway despite it
leading to sleepless nights.<o:p></o:p></div>
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<br /></div>
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<b><i>This song though </i></b>– <u>it laid it all out</u>. I have been listening
to it for almost 8 weeks and I still cry every single day when I hear it. It is
so deep in my soul and so true to my heart that I don’t know that I will ever
be able to hear it without these images flashing in my mind or my daughter’s
face and smile the image I see when I close my eyes.<o:p></o:p></div>
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This song is so powerful, raw, and real. It is what is going
on inside of my head every day.<o:p></o:p></div>
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<br /></div>
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I’m going to post the lyrics first, with the images I see
when I hear them (<i>or sing them because you all know I’m singing this every
single time</i>) and possibly some thoughts, then I’ll post the song, which I
really hope you will click and listen to. After you do, re-read the lyrics with
the images to put it all together. Ok, deep breath… are you ready for this?<o:p></o:p></div>
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<b><u>Soon You'll Get Better</u></b></div>
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<br /></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>The buttons of my coat were tangled in my hair<br />
In doctor's-office-lighting, I didn't tell you I was scared</i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-fF-j2Jalhm8/XbEzEBgXjFI/AAAAAAABMR8/tZoWPNWPCNotzeexN8Ne9hMmLRDjBzrFQCEwYBhgL/s1600/20190530_111842.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-fF-j2Jalhm8/XbEzEBgXjFI/AAAAAAABMR8/tZoWPNWPCNotzeexN8Ne9hMmLRDjBzrFQCEwYBhgL/s320/20190530_111842.jpg" width="240" /></a></td></tr>
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</tbody></table>
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<b style="color: #222222; font-family: Arial, sans-serif; font-size: 10.5pt;"><i>That was the first time we were there</i></b></div>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-juqi80XfXT8/XbEzEHk2JqI/AAAAAAABMRA/g0P7BrUT_ds0rVBPI0ivVnvOHc2h6k_vgCEwYBhgL/s1600/20190529_125844%25280%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-juqi80XfXT8/XbEzEHk2JqI/AAAAAAABMRA/g0P7BrUT_ds0rVBPI0ivVnvOHc2h6k_vgCEwYBhgL/s320/20190529_125844%25280%2529.jpg" width="240" /></a></td></tr>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>Holy orange bottles, each night I pray to you<br />
Desperate people find faith, so now I pray to Jesus too<br /></i></b></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-6IPi3WCmmTk/XbEzIcECdPI/AAAAAAABMR8/bIM_TQRjCSY21eeGVsv969Glk6LSvC61QCEwYBhgL/s1600/20191010_155513.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-6IPi3WCmmTk/XbEzIcECdPI/AAAAAAABMR8/bIM_TQRjCSY21eeGVsv969Glk6LSvC61QCEwYBhgL/s320/20191010_155513.jpg" width="240" /></a></td></tr>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>
And I say to you</i></b><o:p></o:p></span></div>
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<a href="https://1.bp.blogspot.com/-PZDG8KFjiN0/XbEzIf2MsuI/AAAAAAABMSE/zmuw25wGASw-7MvUttiXlC991MervAeTQCEwYBhgL/s1600/20191014_001832.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-PZDG8KFjiN0/XbEzIf2MsuI/AAAAAAABMSE/zmuw25wGASw-7MvUttiXlC991MervAeTQCEwYBhgL/s320/20191014_001832.jpg" width="240" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<br /></div>
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<br /></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>Ooh-ah, soon you'll get better<br />
Ooh-ah, soon you'll get better<br />
Ooh-ah, you'll get better soon<br />
'Cause you have to</i></b><o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-tHxuJi5yQTQ/XbE5ODbPdsI/AAAAAAABMTA/rSY7e5pi0d4nZLVnftyfB1I56-Lc4TXzwCLcBGAsYHQ/s1600/69623802_1288580474650017_7295389787802828800_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-tHxuJi5yQTQ/XbE5ODbPdsI/AAAAAAABMTA/rSY7e5pi0d4nZLVnftyfB1I56-Lc4TXzwCLcBGAsYHQ/s320/69623802_1288580474650017_7295389787802828800_n.jpg" width="240" /></a></div>
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<a href="https://1.bp.blogspot.com/-N06hjXMSsa8/XbE5N07dm2I/AAAAAAABMS0/vuZbHDsvwx0piEingQBwSLByj-C9X_GwwCLcBGAsYHQ/s1600/66448492_1253442108163854_857379363245522944_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://1.bp.blogspot.com/-N06hjXMSsa8/XbE5N07dm2I/AAAAAAABMS0/vuZbHDsvwx0piEingQBwSLByj-C9X_GwwCLcBGAsYHQ/s320/66448492_1253442108163854_857379363245522944_n.jpg" width="176" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><o:p><br /></o:p></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>I know delusion when I see it in the mirror<br />
You like the nicer nurses, you make the best of a bad deal<br /><br /><o:p></o:p></i></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-khWYXxpx6QY/XbEzIKwV6KI/AAAAAAABMR8/0lH6MtTYmx4cBEhHJitI3VtxiCIy0_r7ACEwYBhgL/s1600/20191009_162108.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-khWYXxpx6QY/XbEzIKwV6KI/AAAAAAABMR8/0lH6MtTYmx4cBEhHJitI3VtxiCIy0_r7ACEwYBhgL/s320/20191009_162108.jpg" width="240" /></a></div>
<br />
<b style="background-color: white; color: #222222; font-family: Arial, sans-serif; font-size: 14px;"><i>I just pretend it isn't real</i></b><br />
<b style="background-color: white; color: #222222; font-family: Arial, sans-serif; font-size: 14px;"><i><br /></i></b>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-IirDPcstzls/XbEzGUiZalI/AAAAAAABMR4/GSofqCS-2LUU0W7bPbizE6olMr7EemoPwCEwYBhgL/s1600/20191009_124631.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-IirDPcstzls/XbEzGUiZalI/AAAAAAABMR4/GSofqCS-2LUU0W7bPbizE6olMr7EemoPwCEwYBhgL/s320/20191009_124631.jpg" width="240" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br />
I'll paint the kitchen neon, I'll brighten up the sky<br />
I know I'll never get it, there's not a day that I won't try<br />
And I'll say to you<o:p></o:p></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<a href="https://1.bp.blogspot.com/-kumRRzMm-zo/XbEzGJukYqI/AAAAAAABMSA/uph0s8sbGiIsg_ZMDTXOGMdZjiwq2WG0wCEwYBhgL/s1600/20191009_105541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-kumRRzMm-zo/XbEzGJukYqI/AAAAAAABMSA/uph0s8sbGiIsg_ZMDTXOGMdZjiwq2WG0wCEwYBhgL/s320/20191009_105541.jpg" width="240" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>Ooh-ah, soon you'll get better<br />
Ooh-ah, soon you'll get better<br />
Ooh-ah, you'll get better soon<br />
'Cause you have to<o:p></o:p></i></b></span></div>
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<b><i><a href="https://1.bp.blogspot.com/-MO2hjhkTq6g/XbE5OU103_I/AAAAAAABMTY/0DiUjbfWTd4-H-Ydb-AZxZrw0duNevhUwCEwYBhgL/s1600/69996201_10220156849260394_2234250993925619712_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="705" height="320" src="https://1.bp.blogspot.com/-MO2hjhkTq6g/XbE5OU103_I/AAAAAAABMTY/0DiUjbfWTd4-H-Ydb-AZxZrw0duNevhUwCEwYBhgL/s320/69996201_10220156849260394_2234250993925619712_n.jpg" width="235" /></a></i></b></div>
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<br /></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>And I hate to make this all about me<br />
But who am I supposed to talk to?<br />
What am I supposed to do<br />
If there's no you?<o:p></o:p></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<b><i><a href="https://1.bp.blogspot.com/-dEqtWkZouUs/XbE2dowwmtI/AAAAAAABMSM/k5EA5g8WmbUTnE-wf_tv5TwPOwXN1MU8wCLcBGAsYHQ/s1600/47184041_10217984245066647_2564471023357394944_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-dEqtWkZouUs/XbE2dowwmtI/AAAAAAABMSM/k5EA5g8WmbUTnE-wf_tv5TwPOwXN1MU8wCLcBGAsYHQ/s320/47184041_10217984245066647_2564471023357394944_n.jpg" width="240" /></a></i></b></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>This won't go back to normal, if it ever was<o:p></o:p></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<a href="https://1.bp.blogspot.com/-jB4sCmP7e9I/XbE2dhmjNMI/AAAAAAABMSo/sVdW7rgtOL4EC83ZJaMYjjLo5a45e_l0QCEwYBhgL/s1600/57119619_10219411371783756_2255390475064180736_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-jB4sCmP7e9I/XbE2dhmjNMI/AAAAAAABMSo/sVdW7rgtOL4EC83ZJaMYjjLo5a45e_l0QCEwYBhgL/s320/57119619_10219411371783756_2255390475064180736_n.jpg" width="240" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br />
It's been years of hoping, and I keep saying it because<br />
'Cause I have to<o:p></o:p></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<a href="https://1.bp.blogspot.com/-UzWhmb6Lr1A/XbE2ev4cuPI/AAAAAAABMSs/G71CEgdmOuo9HZVTFr_JWOOkosuRrnP5gCEwYBhgL/s1600/72270396_10220418184913622_4256435821537656832_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="714" height="320" src="https://1.bp.blogspot.com/-UzWhmb6Lr1A/XbE2ev4cuPI/AAAAAAABMSs/G71CEgdmOuo9HZVTFr_JWOOkosuRrnP5gCEwYBhgL/s320/72270396_10220418184913622_4256435821537656832_n.jpg" width="238" /></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i><br /></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>Ooh-ah, you'll get better<br />
Ooh-ah, soon you'll get better</i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>
Ooh-ah, you'll get better soon<o:p></o:p></i></b></span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 10.5pt; mso-fareast-font-family: "Times New Roman";"><b><i>Ooh-ah, soon you'll
get better<br />
Ooh-ah, soon you'll get better</i></b></span></div>
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Ooh-ah, you'll get better soon<br />
'Cause you have to<o:p></o:p></i></b></span></div>
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For the record, we <b><u><i>didn’t</i></u></b> get the bad news we were bracing
ourselves for 2 weeks ago. Miracles happen, prayers work, and sometimes, crappy
new just isn’t meant to be. Millions of pounds of weight that was sitting on
our shoulders disappeared that day, and everything changed. We were all
breathing again. Our confidence that we can get Allison into remission was back,
stronger than ever. My mom described all of us as “giddy” – and we were. No
words can describe that feeling.<o:p></o:p></div>
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It did mean we started the Rituximab infusions. Her 2<sup>nd</sup>
one is this morning - this is the first time, since our first trip on May 29th that she is at Mayo without me. I thought I was ok with this. She's with her dad, who I know loves her as much as I do, who also wants to be there for every single moment. So it isn't like she isn't in the best of hands - she's at the Mayo Clinic for goodness sakes - you don't get better than that. Staying home with Parker felt like the right thing for me to do this time - until now when she is there and I am here completely losing my mind. The infusions will deplete her body of all of it’s B-Cells
– and the MDA5 antibody. It wasn’t an easy decision but it was a necessary one.</div>
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We can’t say there will never be bad news with the JDM in
Allison’s future. I wish we could and I pray we don’t ever have to cross that
bridge but it is a reality that will always be in the very far back of our
minds. We will watch her closely, keep her with the best doctors as the Mayo
clinic, and brave the path ahead of her – together.<o:p></o:p></div>
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Now… we breathe again, celebrate this victory and, we pray. And... listen to some Taylor Swift. If this ever happens to pass Taylor's path, or the Dixie Chicks... <b>Thank you for this one.</b> I needed it. <o:p></o:p></div>
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Take a moment to listen to it.... </div>
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<i>I'm not sure if I am supposed to put some disclaimer about not owning the rights to this song or the lyrics but if I do, here it is, if I haven't said this is Taylor Swift's song enough (lyrics and vocals), I'm happy to say it again - this song belongs to Taylor. And I'm incredibly thankful she shared it with the world. </i>Hollyhttp://www.blogger.com/profile/02265848647559516063noreply@blogger.com2