Tuesday, August 29, 2017

It Won't Make You Cry. That's the best title I can come up with other than #TentacleHand

I have crazy dreams and nightmares on a pretty regular basis, it’s possible a slight factor into why I sleep so little. Typically my nightmares involves… you know what, not sharing that, I’m going to limit my Holly is here to amuse you material to one story, today!

A little back story because I feel both of these play a factor in last nights sleep disturbance (it wasn’t really a nightmare but it scared me enough to wake me so… not really a dream either, I guess).

About 6 weeks ago, after being punctured by the claw of a cat I was playing with I developed a Pyogenic Granulomas. I had no idea what it was at first other than this funky growth on the palm of my hand that oozed and bled all day. Being me, maybe my backwoods country raising that led to my increased curiosity, one day while sitting at my desk working I took the pocket knife from my desk drawer (Oh come on! I know you have a pocket knife in your desk drawer next to your pens and highlighters, too!) and sliced it off. I mean, really, why not? What was the worst that could happen? (

It bled, a ton, for about 5 minutes. Not enough to stop me from working, lol, I MacGyver’ed a bandage out of Kleenex and scotch tape and kept on working while peeking at it periodically to see if the bleeding had stopped. When it was just barely a slightly bloody ooze, I removed the awesome homemade bandage and took a look at this spot. What happened next shocked me. Right before my eyes, it grew back. I kid you not! I was fascinated and freaked out all at once. But mostly, disappointed that it was still there. A few days later, when it was really annoying me, I took the toenail clippers and clipped it right off again - you know because, why not. This time, holding direct pressure on it to prevent it from returning. Yes, failing completely. After a few minutes, I removed the pressure and watched it again grow back.

A quick trip to convenient care on a Saturday morning after a bee/wasp/spider-something sting/bite took over my arm, I showed the medical person working my hand. She was completely freaked out. You know what always makes you feel awesome? When you freak out medical personnel with an object growing from you hand that they don’t even want to touch and quickly tell you they’ve “never seen anything like it” and have “no idea what it is” before telling you to visit your regular doctor.

That, however, led me to the internet to do some research on this spot that my daughter had now nicknamed “the alien” since it would so quickly grow back, sprouting from my hand like… well, an alien. And that is how I discovered it was a Pyogenic Granulomas, apparently common in pregnant women – something I am not. Pregnant. Still a woman, just not a pregnant one. And a quick call to my Dr. who knew exactly what it was and burned that baby right off! (FYI numbing shots in your hand hurt like a b#tch!)

My hand is still healing.

That’s the first part.

The 2nd part takes much less background. I looked at the eclipse without protective eyewear disappointing practically everyone who knows me yet not at all surprising those who know me best. I didn’t stare at it, I just glanced a couple times out of disappointment through the great cloud cover that it didn’t get dark out like I thought it would 😊

These two quirks of my life I am sure played a significant role in my sleep disturbance but just for fun and your entertainment because it amused me, I’m going to share the dream with you because I know so many of my friends love to analyze dreams... and it's amusing. 

So, here we go… in my dream I was at a family function on with my mom’s side of the family, I’m not sure where we were but it was familiar, maybe the basement of the Lutheran church back home where we have held gatherings… anyway… my hand was bothering me and the spot where the PG was removed. It looked very swelled up and being me I decided to squeeze it to see what happened. What happened next (this was a dream, mind you for those with short attention spans – this was not real life) was bizarre! 

Out of my hand what looked like the tentacles of an octopus were being squeezed out!! (maybe Squidward’s legs is a better visual, Parker has had me watching a lot of Spongebob lately with him)

Flesh colored tentacles with fleshy/clear-ish suction cup sucker things and red berry looking like things on them. The more I squeezed, the longer they got/more that came out.

Somewhere between a state of embarrassed / mortified / fascinated I grabbed the attention of my cousin, Kelly, and motioned for her to head to the bathroom with me. *this should be a sign that something crazy would happen. Not that *we* would ever do anything crazy together but not that we wouldn’t either. As I ran it under water and tried to shake it off, Kelly grabbed some scissors and cut the tentacle things off my hand which caused it to bleed a ton but we felt like we succeeded. Until… they started to grow back. This time, they fell off when I shook my hand really hard making a mess on the floor which Kelly covered up with a rug. *genius*

We knew we had to tell someone as they just kept growing out of my hand so we went to my mom to ask her what the heck was going on. Because my mom is a nurse and knows EVERYTHING. Really. She does. I envy her medical knowledge sometimes. Amazingly up to this point, Kelly and I were completely calm and, well, incredibly amused.

When I got to my mom, I took the towel off of my hand, dangling these tentacle things in front of her face asking her what the heck was going on with my hand.

Very calmly she said, “It’s nothing, Holly. It’s just a sign that you are going blind.” And then returned to talking to my grandma.

I was like… Whhhhhhaaaaaaaaatttttttttttt?!?!!

Which is when I woke up, slightly panicked but still with vision.

NOW, to add a twist into this… when I work up this morning, an hour or so after this – and this is real life, not the dream – I go into the bathroom and look into the mirror, thinking wow, my right eye is kinda hurting… and notice that my the right half of my right eye is completely bloodshot! Seriously. It’s so hot. *eye roll*

So, there you have it, folks. Real life, dream, real life. Welcome to the world of Holly πŸ˜‰ At least no one can say this entry made them cry!

If you can't laugh at yourself... you shouldn't be laughing, right?

Friday, August 25, 2017

Our magic number... 25.

Now and then I’m asked that one question that I’m yet to answer without tears welling up in my eyes, often catching whoever curiously asked completely off guard.

“What’s the hardest part about raising Parker?”

I’m sure many would guess my answer would be his aggression, anxiety, maybe the battles with the school over the years, waiting years for him to talk, or maybe even watching his peers move on in life but all of those are wrong. They aren’t easy but certainly not the hardest part.

The hardest part is a simple, two-word answer that I can’t even type without tears. “The future.”

Right now, through the very best of days (which we have a lot of – Momma’s of littles – hang there, way better days are ahead!) and the very I wish we never had moments that are not so good, I have the ability to protect him. We have our very happy, sometimes quirky, routines and life. It works, very well, for us. And, quite honestly, I would be very happy and content doing this forever.

But, I can’t.

Shortly after Parker was diagnosed I read a story. I can’t remember if it was in a local newspaper or through a link online to a magazine like “Woman’s Day” or something. It was a long time ago. While I don’t remember where (although I wish I had saved it) I remember exactly what it was about and it forever changed me.

It was the telling of a family who had 2 sons with intellectual disability. Their entire lives they lived at home with their parents. They had, no doubt, a great life. There was no question to how very much they were loved. This was, however, all they knew. One day one of the parents died, I think the father but it doesn’t matter, and while extended family expressed concern the living parent refused to move the now elderly adult sons into a home.

The men were in their late 60’s. The parents in their late 80’s. A few short months after the first parent died, the only person left in their life - the other parent - died too.

Within 6 months these 2 men with intellectual disabilities who had only known one home and one life under the care of their parents, had lost their entire world. Everything. Both parents were gone.

The men were placed, together, in an assisted living facility. It was an incredibly challenging transition that took its toll on the multiple places who attempted to bring them in and on the men, themselves. They had no idea how to function without their parents. They were thrust into a world they did not know and could not understand.

The story didn’t have a happy ending. No great tale of how the men adapted and thrived. It continued on chronicling their ongoing confusion and struggles. It never ended. They never settled in and found a new routine and life. They simply survived, barely, at best and not for long.

The article took all of the air from my lungs. I could not breathe. I could only cry. I knew what this meant. 

Up until that point, I had said, adamantly, to everyone that Parker would live with me forever. And at that moment, I realized,  he could not. There was no way, no way at all, that I would ever do this to him. No matter how much I want to protect and shelter him, I cannot keep him from the world but, instead must teach him to survive in it and thrive, successfully without my by his side.

It was then - early in his diagnosis that his dad and I came up with the magic number “25”. That by Parker’s 25th birthday we would be sure he was living as independently as possible outside of our home.

25 felt right. At 25 he would still have us as a safety net. We could make the transition slowly and find the best place for him. It would be like going off to college like his sister will be doing. And most of all, we would be able to see him be successful, on his own (however that would look, likely at a residential facility) and know that when the time came and we were no longer here, he would be ok.

It’s a plan that we’ve been set on for what feels like forever, without any doubts or uncertainties of this plan.

And then… he turned 18. His class graduated high school and I was granted guardianship. Suddenly 25 feels way too soon. Not because he won’t be ready, I will be sure he is but because… I won’t be.

Being Parker’s mom is being his caretaker. It defines me. And I’m good with that. But really, it’s all I know. I don’t know how to function without helping him through each day. I’m lost when he’s with his dad or at camp and I am not tying shoes, tucking him in at the end of the day or reminding him to have patience because I cannot jump at every command… and despite his protest he can do some things himself!

Making that leap at won’t only change Parker’s life, it will change mine. In a major way. And part of me does not want that at all. Not even a little.

The thought of him living away from me with someone else caring for him, tying his shoes, telling him “goodnight” is a bit – ok, a lot – heartbreaking to me.

And I know what some of you are thinking, “Why can’t he just stay with you and then go live with Allison after you are gone or  too old to care for him?” And, in all fairness, Allison will tell you that is her plan. He also is blessed with 2 pretty awesome step-sisters now who may also feel the same way and want him to reside with them. But, the reality is, it’s not fair and it is not an expectation that I (or Scott and Jen) have for them.  Parker is not Allison’s responsibility. She will have her own life too. While I fully expect her to always include her brother in many things, I also expect her to live her life to the fullest. The same for his step-sisters. I’m not completely sure it would be fair to Parker either to have to live with his sisters, even knowing how very much they love him.

If, many years down the road, they decide this is what they want – they will have our support. But, it’s not something we are planning or expecting.

Lately, I’ve been struggling with that magic number we picked (and I have to say it’s “by” 25 – if something perfect comes available before age 25 and he’s ready – in no way would I hold him back. I would cry a lot but I would do what is right for him because that is the most important.) subconsciously talking myself out of it a little more each day.

Then, unexpectedly, I was reminded why it’s so important to me to have a magic number.

The film Mimi and Dona crossed my newsfeed. It’s a documentary you can watch for free until September 19th through this link – I highly encourage you to watch it, with Kleenex in hand.

Mimi was 92 when she accepted she could no longer care for her daughter, Dona (in her 60’s), and placed her in a residential facility at the urging/demands of her family. It was the hardest thing she ever did. Not only did she say it but you could see it in her face and hear it in her voice. No part of her wanted to do this and she very desperately wanted to bring her home.

“You don’t know what it’s like to say goodbye to someone” she said to her family. And she was right. Those words were so true, so powerful and so very much from the heart. No matter how much you love your sibling or relative with a disability and can see from the outside what appears to be the “right” decision for them, you don’t know and understand the pieces that hold our lives together. It’s always easier from the outside.

What I saw was likely different than what her family who was urging her to leave her daughter at this facility saw and heard. “You don’t know what it’s like to say goodbye to someone.” Was much bigger than saying “goodbye, I will see you soon.” Not only was Mimi having to say “goodbye” to her daughter but to the only life she had known for all of Dona’s life too.

She was leaving a huge piece of her heart behind. The guilt, the worry, the anxiety, the helplessness all stayed with her while her heart and her love slowly faded away in the distance. She also knew that her relationship with Dona would never be the same.

This was more than just saying “goodbye” until next time. It was saying “goodbye” to everything she had fought for and known for over 60 years.

It meant starting over, for both of them, with broken hearts.

While I don’t want to give away the entire movie, I do want to point out that the decision did not end well. And while it was never said, I can tell you as a mom who is also a caretaker, that a part of Mimi – no matter how good of a person she was – never forgave those who forced that decision on her for Dona to move. It didn’t have to be said. It’s simply known. I would never be able to forgive anyone who forced that decision on me that led to that outcome. (Yes, an outcome that may have happened regardless but there is no way to know). Maybe Mimi is significantly better than me, forgiveness isn’t my strong suit. But I know it’s a heart ache and anger I would take to the grave.

*Side note – I saw so much of me in Mimi and so much that I strive to be. She was so filled with love and fought so hard for her child… I have so much admiration for the incredibly woman she clearly was.

The movie, again, like the article I read so many years ago took all of the air from my lungs. It left me gasping, unable to breathe.

It made me realize that I have a magic number for a reason. Because if I don’t 25 will become 35. 35 will become 45. 45 will become 55… and eventually, we will be in the spot Mimi and Dona were in, where the family I mentioned early were in – where Parker and I would live in a bubble unable to survive without the other.

And that is not fair to him. And some would argue to me.

I know that many of my friends just sent their kids off to college or off to the military. And while I cannot imagine how that feels, I know that their children can tell them absolutely everything. Whereas my son, cannot.

While it’s a comparison many like to make, the reality is it’s different. I won’t be sending him off to college and welcoming him back when he’s on break… or can’t find a job and living in my basement until he’s 35….  I’ll be sending him off to find people to try to love and care for him as much as I do. To protect him. To keep him safe. To love him unconditionally. To show him the world and also protect him from it.

I’ll be looking for the impossible but I am determined to find it. Or create it.

I won’t know if he’s had a rough night. I won’t know if he’s scared or had a bad day. I won’t know if someone is abusing him or taking advantage of him. I won’t be there to protect him for the ugly in this world.

I won’t be able to fully explain to him why he can’t live with me forever like he wants to right now.

I’ll have to trust strangers. I’ll have to set up systems to check in. I’ll have to be vigilant and do all I can to help him understand how to protect himself or report others. 

I’ll have to walk away when he’s crying for me to stay. I’ll have to hear his anger when I don’t go pick him up on a whim and bring him home. I’ll have to re-learn how to live without being his caretaker full time.

I’ll have to learn to trust which is, very simply, something I do not do at all. Ever.

This will be the hardest part about raising Parker. Letting him go. Letting him move on with his life without me as his full-time caretaker. And then trying to find out who I am without him always by my side.

While it will be the hardest part, it’s also one of the most important parts. Parker loves being with friends. He loves the independence he is gaining. He will thrive. He will do exactly what I need him to do… he will prove to me that he can live life successfully without me by his side.

He will show me happiness. He will show me pride. He will show me new friends. He will show me new experiences. He will show me that all of the sleepless nights, all of the IEP’s, all of the pushing of boundaries, all of the research I did had a purpose.

And while it will be possibly my most challenging task ever, I will figure out who I am beyond his caretaker as well. Who knows what’s waiting ahead for us both but I know we will find out before I’m ready.

My heart broke for the family I first mentioned and for Mimi. I cannot imagine the pain. Please understand, I do not judge them. I believe they did what was right for them at that time in their lives. I believe the felt this was the very best decision for their child/ren and family. And, maybe it was. I simply respect and love them for being such incredible parents.

I also appreciate their stories being shared, reminding me that this path isn’t the right one for us. I cannot keep him with me until I am no longer able simply because I am not ready to let go. If I was his entire life and suddenly gone, all of the work and progress we’ve made would have been for nothing. It would turn his world upside down in a way no one would be able to fix. I cannot do that to him and I won’t.

So, our plan remains solid. It’s one that will benefit Parker the most. And in a few years when we reach that point, I know he will absolutely shine and build bonds that will carry him through the years that extend beyond me.

I know this is a challenging subject but one I hope you take time to think through. This is just our plan. It what we believe is most appropriate for Parker. It does not mean it is the right plan for everyone (or anyone) else. My request is that you think through the future and what will happen to your adult child if you are suddenly no longer here and if there is a way to prepare them for success while you still are.

This is the hardest part about raising a child with a disability. The future. The decisions are not easy. Learning to live again without caring for someone who carries your heart 24/7 will not be easy either. No one understands how hard it is to say “goodbye” yet at the same time, some of us have a pretty good idea.

Love and hugs my friends. This journey is not always the easiest but it’s also not one we travel alone. 

Thursday, August 17, 2017

Because... he remembers everything!

This past summer, on more than one occasion, Parker completely caught me off guard with something he remembered. I've always known and reminded everyone that his receptive language was amazing but because he's lacked the expressive language to be able to say what he knows, it's made for some doubters.

This summer though... even I was amazed.

I had to break the news over the summer to my kids that Aunt Heather had to put their dog, Gus, to sleep. I was a bit more focused on Allison because I truly didn't think Parker would really care - he's not the biggest fan of dogs - but he did. And he had questions.

P: "Bury him?"
Me: "Yes, they will bury him" (they live on 22 acres)
P: "Next to Emmy?" (our dog who died 9 years ago)
Me: "What?"
P: "Next to Emmy. Emmy died. Hit a tree. Bad rabbit."
Me: (with tears) "You remember when Emmy died?" (he was standing next to me when she came running out from behind the shed chasing a rabbit and hit a tree stump head on, instantly killing her.)
P: "Yes"
Me: "What happened?"
P: "Emmy chased the rabbit. Hit the tree. Died. Called Grandpa John. Dad working. Called dad, come home in firetruck. Grandpa took Emmy home. Buried her. Put a rock on top."
Me (seriously choking back tears) "Yes. Exactly. That's exactly what happened."
P: "Mom cried. So sad. Poor Emmy died."
Me: "Yes, mommy was so super sad. We have Daisy now though and I love Daisy. That makes me happy."
P: "Bury Gus? By Daisy? Rock on top?"
Me; "Yes, I am sure they will."
P: "By Jackson too." (Our kitten we lost)
Me: "Yes, by Jackson too."

The conversation left me a bit speechless. It certainly took me by surprise and wasn't one I planned on us having... ever, really. But truly left me in awe and happy to know there are memories in his mind, just like the rest of us.

Later in the summer we were driving in Peoria when he kept saying, "Give me your Money!" in a voice I knew was familiar but couldn't put my finger on. I would repeat it hoping it would come to me where I knew this voice and phrase from but it wasn't. So, finally, I asked...

Me: "Parker, who says that?"
P: "Mr. Krabbs. Give me your money!"
Me: "Yes, true but who else... I know this from somewhere else."
P: Thinking for a minute.... "Give me your money".... (Pause).... "Said the BIG BAD BUNNY!"
Me: "OH MY GOSH - YES!!! It's the Big Bad Bunny Book!"

Parker lit up. I used to read this story to him over and over and over and over...because he loved to hear me say "Give me your money" in my Big Bad Bunny Elvis like voice. (Mom of many talents here). And we talked about the storyline of the book for the next half hour or so.

When we got home, we looked for the book but couldn't find it. We'd still laugh about it and often say "Give me your Money" in our made up big bad bunny voice and laugh. And then, last week I ordered it and today... it arrived.

To say he was excited was an understatement. He was elated to see the book and immediately started flipping through the pages.

We read it twice before bed and he told me we could read it again tomorrow. I forgot how much I enjoy reading to him and how much he loves being read to. I would stop at places and ask him to read the words, it was, good for us both.

Maybe I'm feeling a bit more emotional these days because school is back in session or because tomorrow I go to court for his guardianship but having the book arrive today was good for us both.

And a reminder that, yes.. he IS always listening and more importantly, he - just like his sister - remembers EVERYTHING which makes me so proud!

Tuesday, August 15, 2017

'Twas the Night before School Started... What's Next for Parker.

I swear summer goes by faster with each passing year. The school year too. I'm sure it's not my age but instead, time actually moving faster than it used to. It's the only logical answer.

We've had a pretty good summer, likely another reason it went so quickly. And now here we are, the night before the first day of school.

Many have asked and many are still wondering what is next for Parker. And while we had a plan, I also knew and was open that Parker would ultimately be the decision maker when it came down to it. Thankfully, he's good - at least now - with our plan.

Parker will be returning to CHS tomorrow as a Super Senior! He's able to stay in school up to his 22nd birthday - and our hope is that he will. While he will still have some basic academic classes (and of course, PE!), he will also have a lot of focus on life and job skills. Soon, he will be leaving during the school day with a job coach to work in the community. We will build on the number of days he's out working and the length of time over the next couple of years. Our goal is, as always, as much responsibility and community involvement as works for Parker.

So, tomorrow - with his sister, now a 😲freshman! , he will return to CHS. And, he's ready. 

He needs to go back. The last month he has obsessively asked every single day who will be at school and who will not. Who will be in Club Unify (Best Buddies) and who will not. Who is going to Homecoming with him? He's gone through the list of his sister's friends to be sure each of them has someone to "look after them" at the high school - because he can only look after one and that's his sister! He's obsessing thanks to his anxiety and it's time to put that all at ease, providing him with answers and letting him see he still has friends at school and will even make new ones.

We've talked a lot about who is going away to college, where they are going and who is staying locally while working or going to college. It's important to him to know where his friends will be. And, like his sweet Momma (I'm writing this, I get to decide if I'm sweet or not!), he worries about them leaving and not seeing them again.

The past couple of days he's been obsessively messaging them on Facebook, wanting to see them. It's hard. Not only are the preparing for college but they are working too. It's safe to say panic has been settling in not just with Parker but with me too about what will happen next for this group of friends.

Last week there was a bright spot of comfort when Jessie text me asking if she could take Parker out to lunch once a month or so during the school year as she does not have classes on Fridays. Of course, that was a yes!

Today, Kylee and Allyx offered to take him out for dinner. They leave for college this weekend and while they (thankfully!) won't be far away, they won't be here in town either - or driving him to school - so, to Parker it feels as though they are going to be in another world. Thankfully, they are going to Bradley University which is in Peoria, super close to the Jukebox Comedy Club where Parker can often be found hanging out with Dan. So he's seen where Kylee, Allyx and Remi will be but he's still trying to grasp why they are going there. Drew is going much further away to college, I can't easily drive him by and say "he'll be ok, he will be here" but I think this helped relieve some of that anxiety over his leaving.

Parker was super excited that the girls were picking him up and taking him out to his favorite place - DQ - for chicken strips. He wanted me to wait outside with him until they pulled in. Then he wanted me to leave (and take Allison) so they could have the driveway. So, Allison and I left as Parker went back inside and with time, the girls got him out of the house and were off to dinner.

Because he wouldn't let me hang around when they picked him up, I asked Kylee to send me some pictures - which she did :-)
Allyx, Kylee and Parker

It's hard to smile and open your eyes ;-) 

Allison and I ran some errands and about an hour and a half later I watched as they pulled back into the driveway. I went to the door to greet them but no one got out of the car. I could see Parker was showing the girls something on his phone and I could hear all of them talking and laughing, even though I couldn't make out anything that was being said.

I, of course, went back in for my camera to snap a few shots ;-)

I know... it's hard to see but he is smiling ear to ear!

Eventually, I walked over, Kylee opened her door and in the passenger seat was the happiest young man with the biggest smile I've seen on him in awhile. (Probably since Rylee and Tanner took him swimming at Rylee's house!). He had the ESPN app up and was doing a play by play of the Cub's game! He would flash back to the score of the Cardinals game and laugh while saying "Boo Hoo, Jen, (his step-mom), is going to cry. Her Cardinals are losing! They stink!"

The girls filled me in on all of the fun things he shared with them, like showing them Aunt Heather's picture and her horse and talking telling them Jeff Bailey is ugly (he left out because he has a crush on Jeff's girlfriend Morgan!) - thankfully Jeff is a great sport about it all! He talked about getting to see the Peoria County Sherriff's officers yesterday when they stopped by the Comedy Club and about how Dan was golfing.

He tried to call Dan... and Grandpa John... and Aunt Betty Gail which are his favorite people to call when he's super happy. Ok, and to rub into Grandpa John that he is surrounded by pretty girls and he's not.

Parker finally got out of the car and bolted inside, without giving the girls hugs, looking for his cat, Sweetie. And, he totally knew the girls would follow him in.

They came in for hugs, we talked a little and I thanked them for spending the evening with him. It truly made his night and mine while we talked about getting together either while we are in Peoria or when they are in town.

Shortly after they left, Parker was ready for bed, reminding me "School tomorrow. Get up early." for the first time without asking about where everyone will be and reminding us both that his life, after graduation, will go on.

While tonight meant the world to Parker, it truly was something I needed to. I needed to see that he won't be forgotten. While it will feel at times that this group of friends are in another world, tonight was a reminder that they will always come back to Parker's world. They aren't leaving him forever.

These are friends, I truly believe, will be life long friends of his. I believe they will always make time for him, always be there to take him out for chicken strips or a movie or to swim. I believe that he will be there for their weddings and to watch their children grow. I can see him at sporting events cheering them on, next to his high school friends.

This is what I worked so hard for over the span of many years. This is why I insisted on talking to the students in his classroom about who he is, how his disability impacts him and how they could be his friend. This is why I opened that door and handed them the key to being Parker's friend. And tonight, I realized that door will never close - and if for any reason it begins to, this amazing group of people all have the key to get back in.

For the first time since graduation, I felt confident that they will always be there for him. All of them. And for the first time in many weeks, Parker had his calm back. The dinner, the laughter, the friendship wiped away the anxiety and reminded him even when they are away, they will always come back and always be there for him.

Leaving me, once again, so very thankful for this amazing group of friends my son has. Not people who feel sorry for him. Not people who pity him. Not people who have to spend time with him but want to spend time with him. Friends. Friends who care for him. Friends who laugh with him. Friends who get him. Friends who love him. Friends who will always be there for him.

Friends who brough back his calm on this... 'twas the night before school started evening.

Tuesday, July 25, 2017

Guardianship and Guilt

Almost every night, I cover up my son, kiss his cheek, tuck in his feet and begin the routine of listening to him yell at me after I closed the door.
7 o’clock” he will say.
7 o’clock” I will reply.
I wake you up first!” he will yell.
Not if I wake you first” I will reply back as I walk up the steps, knowing the odds of that are close to none.
A few more back and forth conversations will happen as he settles in bed. Sometimes it’ll happen quickly, sometimes 5 – 10 minutes or more can pass before I hear it but right before following asleep there will be one more yell for me. Eventually, I will hear it…
I love you
I love you, too” I will reply every night that he’s here for me to tuck in.

Every single time we go through this routine I take a moment to pause and appreciate how lucky I am to still do this. It’s something many parents would love to be able to do, either because their child is too grown up for this now or because their grown-up child is unable to have this conversation or maybe because their child is no longer here. No matter the reason, I appreciate each night I get to tuck him in, each kiss to his cheek, each time he says, “I love you”. It's one of my favorite parts of every day. Not because he's going to sleep but because we have such a fun exchange in this routine, it's always filled with laughs, smiles, teasing and love. It never gets old, it's never less fun. It's our thing and we love it.
This has been a challenging year for me, emotionally, with Parker. It was his senior year. His friends are headed off to college. His life is changing in many ways. I’ve shed more tears in the past 7 months than in my entire life. Some over change but mostly over guilt. And while I can typically keep it mostly tucked away now and then it wins and overcomes me, totally knocking me on my butt.

I’ve come a long way since Parker’s fragile x diagnosis. I’ve come a long way with my guilt of unknowingly passing a mutated gene onto him, forever changing his life. As I’ve often explained to others, grief is a vicious bitch of a cycle. It is. A cycle...vicious, and a bitch. I’ve argued the topic with people who don’t walk in my shoes and with people who have but have moved past it... but for me – and thousands of others – it’s a cycle that may never have an end. 

I can be fine, accepting and totally at peace with myself for not knowing I carried the fragile x gene mutation and passed it along. I didn’t know. It’s that simple. I had no idea. But this past year it’s returned with a vengeance and apparently has no intention on leaving anytime soon, no matter my efforts.

I thought once we moved past graduation, I’d be ok again. I knew I had the guardianship process ahead of me but thanks to my amazing friend Libby who made the guardianship process with her son a fun “we did it” family moment I was sure I had this under control and would be able to keep it positive taking her incredible spirit with us through this part of our journey.

And then, I met with my lawyer and cried through the entire meeting where he was going through the steps, again, since Parker was now 18 despite the fact that I have the nicest lawyer ever. He goes above and beyond to make each step in the process as smooth and pain-free as possible for me and much more importantly, for Parker.

Today, though, was the day it became much more “real” to me. It was the day the guilt returned. It was the day that knocked me on my butt not long after I had finally found my way to stand again.

Today was the day I had my son served with papers. The day with officially stamped and signed papers that say “Your mother says you are not capable of being your own person”. Ok, they don’t say that exactly they say something more along the lines of “he is summoned…. Petition for Guardianship… disabled adult… Holly will be the appointed guardian of your person and estate.” Which is, in my head, the same thing. You mom has declared that you are not able to make decisions and now has to go through this long and expensive process to go to a judge and choke out the words "he isn't capable of caring for himself and making decisions alone." And let me tell you right now, no matter how much I know this is exactly what has to be done and what is best for Parker, that sucks. It sucks to say to people "he can't" because I've fought for 18 years that "he can". But this one, no matter how much I would love it, he simply can't and this is what is best for him. I can't even write about it without feeling like I have to justify it. It sucks. I want to celebrate like Libby (I truly want to be Libby when I grow up, she's just amazing and fun and I adore her!) but I'm not there yet. Maybe by the time I go to court next month I'll be able to channel the Libby inside of me, it's my goal but I refuse to be disappointed in myself if I can't. 

There is not many things that are harder than standing in front of people and saying "My kid can't... ". I know it. You know it. But let's make it fun and mentally exhausting by making you come up with thousands of dollars and crushing your spirit in front of a judge to say "My kid can't...". Seriously. Gut wrenching to me.

Back to today... today we drove to the detective’s office where the nicest lady you could ever meet came outside (because Parker refused to go inside) to serve Parker his papers. He wasn’t going to take them at first but as she kept extending them closer to him while talking sweetly to him until he finally took the papers, tossed them onto my seat and rolled up his window as soon as her arm was no longer in the way. It's the law. The papers had to go from her hands to his. I'm just thankful she was so wonderful and patient because he did not want to take the papers. 

I thanked her, got in the car, put on my sunglasses and pulled away with tears streaming. I don’t often cry in front of Parker, or Allison really, but sometimes no matter how I try to hide it, he always knows.
Crying, mom?
Yeah buddy, it’s ok.”
Call Dan? Make it better? He’s sleeping? Booking comics?
It’s ok, buddy. Mommy is ok.
Just breathe. That’s what Dan tells me. Just breathe.
Yes, buddy. Mommy just needs to breathe. I’m ok. For real. I’m ok.” even those I was not even close to being ok. My heart was shattering with each beat.

As he returned to drumming on my headrest the voice inside my head screamed at me the words I wanted to say to him while I tried to better conceal my sniffles caused by my crying.

The words I want to say to him, that I’ve said before while he’s slept or recovered from a meltdown and words he will likely hear again or I'll say silently to myself.

“I am so sorry. I am so very sorry. I am sorry.” And I am.

I am sorry that I cannot send you off to college and instead will be going to court to have you declared unable to care for yourself. I am sorry that your life has so many struggles. I am sorry that there are things you truly want to do and say and have but cannot. I am sorry that this is the life I gave you. Because no matter what anyone says to me, I did this. This all me. Your disability is a result of my mutated x chromosome. Mine. No one owns this except me. And I could not feel worse or be more sorry. I am so, so, SO very sorry.

I have done everything I could, well, I’m sure not everything – I’m human, I’m sure I could have done more if I had put my mind to it – to be sure he had a great first 18 years. There’s a lot that he missed out on but a lot he was able to experience. Most importantly, friendship. We have had way more laughter than tears. Way more good days than bad. Way more love than you could ever imagine. And that was just the first 18 years. His life is just getting started, we have so much more ahead of us… ahead of him. 

So please, don’t think that every ounce of me is sad. Just one small ounce. The rest of me (and there is a lot of me) is incredibly positive, hopeful, and filled with love. All of the other ounces in me fall there, in the happy, proud, so much love category. 

As much as I get to “own” the amazingly awesome moments in our life, I get to “own” the guilt too. I’ve decided that so please do not put energy into telling me not to 😊 It’s healthier for me to let it cycle and own it than to hide it and tuck it deep inside, which is what I will do. I believe in letting things out and that includes these cycles of guilt.  It’s a process I go through when it pops up and knocks me on my butt. I don’t know how long it will linger but as quickly as it comes, it will leave and that is my silver lining.

But tonight…..Tonight, no matter how much my heart is hurting from the guilt, I will still get to tuck him in bed. I will still remind myself how incredibly fortunate I am to be able to do that (it’s really just as wonderful as it was when he was little! Sorry to rub that in to the mom’s who can no longer tuck their kids in – if it helps, Allison in no way would let me tuck her in!) I will still appreciate our back and forth as I wait for those incredible words… "I love you."

And for a few days while I work through this, after I yell back “I love you, too” inside my head I will also  quietly to myself say “I’m so sorry.

While I'm at it... July is Fragile X Awareness Month. Please take a few minutes to learn more about Fragile X by visiting www.fragilex.org and, if you can, donate to our fundraising page: https://give.fragilex.org/fundraiser/1003868 

Tuesday, June 27, 2017

Discussions with my Daughter... So, the green hair...

Sweet baby girl, if you (or anyone) would have told me that one day my beautiful daughter would want her hair dyed emerald green at 14 I would have laughed and rolled my eyes at you (them). If you would have told me that I would be fully supportive and help keep the color vibrant I would have peed my pants from laughing at the very idea.

That’s, honestly, the difference in what you have in your mind for what life will be and what life actually is. When these moments happen, even when they take you off guard, you view them differently. In all fairness, everyone we know has been saying “I could never let my daughter…” but not a single one of them are in our shoes so it’s impossible to truly say what one would do until the moment arrives.

I’ll admit, the request for emerald green hair took me off guard – well, green with a hint of blue hair but as you showed me images of the cut, style, and color you wanted and we searched together for other examples your excitement was contagious and I was on board. This really takes embracing your inner Slytherin and Ravenclaw to a new level, maybe if I read the books I’d understand more, right? πŸ˜‰

As excited as you were, it’s one thing to see it in pictures on someone else and another to actually do it and walk around with it but you were set and I was prepared to stand by your side. You’re a lot like me in that way 😊

It took some trial and error to get to the dark emerald green that you had wanted but when we were able to accomplish it you radiated. It was the happiest I had seen you in awhile and I loved it. Your smile took over your entire face and I knew I needed to do my part of being sure I had everything on hand to keep your color vibrant.

We called this shade "highlighter"... it only lasted as long as it took to pick Parker up from practice ;-)

Attempt 1 to darken the blue tips at the bottom and the green

We truly bonded over this time :-)

Meh. Better but not what we were hoping for.

Adding more blue to the green to deepen the shade... 

We may have had some fun with this...

Ok, a lot of fun ;-)

Significantly better but still not perfect...

However, it brought out this amazing simle and look at those blue eyes!

This color stayed for awhile, it was the first I really saw you beaming!

And, I must say, I’ve never seen green hair look so amazing on someone – very much complimenting your skin, your eyes and bringing out your personality. It was really something special to see.
It’s safe to say, “we” were happy.

Never ending smiles... melting my heart!

Others, meh, not so much. Here’s the thing, you weren’t doing this to be rebellious. You were not going to do it without our support. You were doing it for you, to express who you are and your love for something important to you. The rest of the world didn’t need to understand, only you did.
Your grades are great, you are the most amazing little big sister ever, you are very much the perfect daughter. If the only thing you ask for in return is green hair, yeah, I’m fine with that.

Smarty pants :-)
But they were missing it, those who could not see past the color. They were missing the most important part of this amazing emerald green and blue hair… the incredible confidence that came with it.

You held your head high and walked into the middle school for the last week of school. Holy crap kid, this scared me to death. Sending you to school with plain ol’ everyday hair worried me but to send you into the depths of hell (isn’t that what middle school is?) with green hair really frightened me. But you rocked it. Completely and totally rocked it.

Seriously, I wouldn’t be able to leave the house, let alone walk into middle school with green hair but it transformed you, letting you shine. I loved seeing this confidence and yes, pride. Pride in being yourself, in being different, in being unique, in being able to express yourself…I just can’t say enough how amazing that was for me to see or how proud I am of you.

The green brought out this incredible confidence that you keep tucked inside, that you don’t need green hair to let loose but it’s what it took and I was amazed. So, I did my part to keep the color vibrant, awesome conditioner that left your hair with this great mint smell and incredible feel and the weekly treatment – I fell in love with the products and would’ve happily tried any color for you but you only wanted the green and blue so we stayed with that. Most of all, I loved this time we had together, just me and you - talking, bonding and laughing. I love re-color day!

Once again, a bit darker - we loved this shade!

Seriously, this smile each time we'd touch up the color - gah, I love it!

These moments are the best!

I know the green is not the forever color of your hair. I know that in order to get the new cut you want, you had to compromise with your dad on the color and that’s ok because we were given a peak inside of you to something truly beautiful, more gorgeous than the emerald green hair… your confidence. And now that we know it’s there, the color of the hair is secondary because you know it’s there too.

I know the adventures of your hair will continue, through this journey you will find yourself and express yourself in a beautiful way. I hope with each new step your confidence in who you are continues to shine through and grow because you are the most amazing and beautiful soul I have ever met. Your compassion, kindness, intelligence, and humor are as striking as your outward beauty and I love so much that you balance them.

I can’t wait to see where your hair journey goes next but also know, I’ll secretly miss the emerald green.

Also, a huge shout out to Crystal for the amazing cut and getting the color started and to the makers of oVertone, the colors are amazing, the product is outstanding and you truly made this experience much easier! Learn more about oVertone hair color at https://overtone.co/ 

Monday, June 19, 2017

Remember that "amazing" idea I had.... You should try it!

Last fall when I shared the first session of Parker’s senior pictures with some of his friends, I said it was just one part of a secret project I was working on. And it was, as I had this incredible vision for a project that was going to be the most amazing thing, incredibly personal, heartfelt and truly encompassing Parker’s journey through school to this point. The kid was going to walk across the stage at graduation with his class, this was beyond significant and something that was about as surreal as it gets.

Yes, he would be returning in the fall for more schooling but this was such a milestone I wanted to capture what I was seeing each time I closed my eyes and filled with pride at how far he has come.
When I closed my eyes and took a minute to appreciate the moment we were in and what was about to happen I always saw the same thing – every single teacher, parapro, therapist, support staff individual that had worked with Parker over the years beaming with pride.

The truth is (and I hope I have conveyed this clearly over the years) that Parker hasn’t become the amazing person he is just because I’m his mom or because he’s the most awesome son ever. He’s reached this point because of the people around him. And I am thankful for each of them.

Over the years he’s had one amazing teacher after another. One amazing parapro after another. One amazing therapists after another. One amazing support staff after another. All of them, amazing. All of the contributing to help shape him into this amazing young man. Each of them had faced their challenges with him, some pretty significant, but not a single one of them ever gave up on him. No one ever tossed up their hands and said, “Yeah, too much. Not helping this kid” and walked away. And believe me, he gave some of them pretty solid reasons to do just that. Thankfully, they never did.
They fought and worked tirelessly to bring out to shine the incredible soul that is in my son and often overshadowed by his disability. They pushed him to do things that seemed out of reach knowing he had it in him. And possibly the most challenging of all, they sat across the table from me at every IEP meeting. They were on the other end of the emails I sent, the notebook I wrote in, the phones I called. They were there when I was at the school demanding change. There were times we did not agree. Times I didn’t feel there was an understanding of his disability, times I brought in experts from Colorado to help them understand him. Times we had specialists conference call in from California. Times they compromised and times I compromised. Each of us with one person in mind – Parker. Each of them earning my respect and appreciation. We all stood our ground on what we knew was best and learned that working together we could make an individualized to Parker version of that happen.

Parker wasn’t the only one who learned a lot from them, I did as well. And I hope they learned something (positive) from me too. 

I reached out to each of them asking for them to be a part of a picture with Parker in his cap and gown the day before Graduation. I wanted something that showed him surrounded by these amazing individuals who helped him reach this milestone.

I had this vision… my son in his cap and gown, smiling, surrounded by these amazing people. Something like this…

Well, except with all of Parker and well, people we know!
 Or this…

Woo Hoo! We did it!

I even thought we might be able to get individual pictures of him with each  - or at least many – of them and Parker.

As I reached out to them, I thanked them for being a part of his journey, for making a difference in his life. I wanted them to know the important role they played and the appreciation I have.

Up to this point, everything was really perfect. The response was incredible. The photographer was excited. This was going to be the most amazing keepsake, this picture of Parker and about 50 other people. In my mind, Parker was going to LOVE this. He was going to walk in wearing his cap and gown, smiling, proud, happy to see everyone and we were going to capture this amazing moment forever. I mean, really, what else would I think?

As the date got closer, life became more hectic. The reality of the time of year took a hit on the number of people able to attend. There were many graduations and graduation parties that day, family commitments and his kindergarten teacher was in Italy on a vacation with her sisters!

That was ok. I knew that whoever could make it would be perfect. I knew getting everyone was impossible and was happy with knowing that at least 1 person could be there. We planned to take the picture outdoors on the football field bleachers.

Awesome. It was on the calendar and I had started to tell Parker to prepare him. This kid was rocking everything and told me “ok” about the picture so we were on track.

And then the day came. And it rained. No big deal, we had a plan B. We were moving the photoshoot inside. I always have a plan B. This was nothing. We were ready… right up until it was time to go and Parker said, “no way.” You know, that moment when he reminded me that no matter how far he has come, he still has Fragile X. He still has anxiety. He still gets overwhelmed. He still had a lot on his plate for this big weekend.

No big deal, I had a plan B. I called in his friend Remi. They had been together since kindergarten and we told Parker this was a “senior” thing and she was doing pictures too. We picked her up and back on track. Score!

We arrived at the school, Parker did a pretty good job of walking in the door with Remi right up until he saw all of these familiar faces. Faces of people I told him would be there. Friendly, proud, smiling faces all ready and waiting for him.

And that’s when Fragile X took control of the photo shoot.

Parker dropped to the ground. Laying flat, snoring. Not budging.

Danielle took some pictures of those who could attend and then most of them stepped away – retreating to the library with the plan of getting Parker settled and them slowly coming back into the picture behind him.

With some coaxing, Parker budged from the doorway to the spot in front of the steps before laying flat on the ground. I tried everything. Remi tried everything. Mrs. Wildebour tried everything. We even brought his Cubs World Series hat for a picture with Mrs. Wildebour with her Pirates hat. We made good progress there and I thought we were turning a corner. These great pictures were snapped. But as quickly as it happened it stopped again.

Cubs Vs Pirates, these 2 have a bond that will last forever

Feeling defeated I asked Remi what her dad, a family friend, was doing. “Hotdog” (known as Jeff to the rest of the world) had come to Parker’s aid more than once over the years. He was here last year to shave Parker before prom when I couldn’t figure out how to work the razor. He was someone Parker responded well to. It’s hard not to listen to Hotdog. He’s a giant that towers over everyone and has the voice to back it up, not to mention the glare of the eye. He’s not someone you mess with.
More importantly, he’s someone Parker looks up to and responds amazingly to. Not because he can be intimidating but because he’s always willing to get down on Parker’s level. There is a mutual respect between these two friends.

Within minutes Hotdog was there. I truly thought that as soon as he’d tell Parker what to do, Parker would respond. That totally did not happen. Instead, this did.

And this did...

I mean really, this is why Parker loves Hotdog so much. We all do. How do you not love someone willing to lay on the floor in front of a bunch of people with you to help you through a moment?

We were finally able to get Parker’s gown on him but he was not in any way putting the cap on. Totally fine. The Cubs hat worked for me. I’m not that picky. I just wanted the picture. Danielle was able to get some shots of Parker by himself. As we tried to sneak everyone else back in, my guy with superhero senses, bolted, right back to the floor.

Ok, this is do-able...

not easy but doable...  

That smile... gets me every time :-)

And we are fading...

And we are done.

We agreed at that point to stop trying. That Danielle would see what magic she could work to create this picture with the pictures that had been taken.

As everyone started to leave, the final few got Parker hugs, which Danielle also captured.

Mrs. Wildebour, Parker's parapro for his freshman, sophomore and junior years.

Mrs. Volhand, Parker's High School teacher for all 4 years and will be there for him when he returns in August.

Our amazing principal, Mrs. Watts

And of course, Hotdog

The result is a picture which is awesome to me for many reasons. While it only includes a fraction of the people who worked with him it covers every place he attended school, each chapter of his life. Westview, Eastview, Ingersoll Middle School and Canton High School with at least one person from each building. Each part of his journey is represented by someone who is dear to us. Each one of them love him unconditionally and have followed his journey over the years. Each one played an incredibly important part in helping him be the amazing, successful young man that he is.

An incredible representation of the many who helped Parker become the amazing young man he is today. Teachers, parapros, support staff, therapists... truly dedicated and incredible professionals who have worked with Parker every year since he was 3. We've truly come a long way! I truly treasure each person in this picture. 

As crazy as this is going to sound, I love that Parker was added into the photo. Because that is the reality of our life. While my heart was a little sad that this experience wasn’t this smiling kid proudly strutting around in his cap and gown, the truth was that was incredibly unrealistic for Parker. And, I knew so. I just didn’t want to admit it. This is something most people won’t realize but I will know (well and now you since I told you) which truly reflects our life. Everything looks pretty and pulled together from the outside and in some ways it is – it just doesn’t happen easily or naturally due to the challenges in our path. The beautiful picture pieced together is what you see from us each day. It’s the struggles to get each of those pieces that aren’t always seen.

It’s the beautiful pieced together picture that reflects the amazing patience, understanding, compassion, determination and unconditional love that is our life. It is our journey. It is us.

I still think this is an amazing idea. It’s one I hope others give a try, hopefully with a bit more ease. To me, it’s the most humble and from my heart “thank you” I could give to each of these amazing people who became a part of our life, believed in my son and helped shape him into the Parker he is today. And while that young man sometimes is overwhelmed by his disability, he sometimes rocks it too, like when he crossed the stage at graduation the next day representing each of these amazing individuals who took the time with him over the years to reach a point some thought would never happen. Together, we did it. And I will forever be thankful to every single one of them.

I’d love to see someone else give this a try! More importantly, I hope you thank the teachers, therapists, parapros, support staff and everyone who helps and believes in your child. They are, after all, pretty amazing people!