Tuesday, September 1, 2015


To quote Parker, "I'm frustrated."

I love that I can now quote him, especially after basically no language for the first 10 years of life, at 16 he gives me the best quotes "Hold your horses." "You can't fire me, I'm a Cubs fan!" but hearing the words "I'm frustrated" is like music to my ears.  Not because I want him to be frustrated, of course, that part is heartbreaking - but because he is using his words to tell me what he's feeling instead of physically lashing out at me and me guessing what is going on.

I'm going to take my own advice and use my words... here we go.

I am so frustrated.  It's really hard to get out any words past that because I am SO frustrated. Our lives aren't always particularly easy.  Life is sometimes overwhelming and always meticulously planned out.  Even when it doesn't feel like we are planning, it's second nature to us and what we do. For the past year I've been planning, trying to figure out how to make something work.  Finally, a plan was in place and as quickly as it was an option that came together it's gone and I am frustrated.

One of the goals for Parker for school is to go off campus for lunch.  Within walking distance is McDonald's where many kids go. The problem has been, Parker doesn't like anything on the menu. Given his sensory issues, feeding him is - difficult, to say the least. And he has to eat.  This is his lunch, he has to eat.  (*No, I am not at all upset that my son doesn't like McDonald's or fast food in general, it's a good problem to have but sometimes a problem none the less.)

This summer McDonald's brought "McBites" to our menus.  My aunt got Parker to try them and he loved them.  Like typical families we stopped at the McDonald's drive thru multiple times over the summer for McBites and fries.

Unless you have a child who is difficult to feed, I am sure you may not understand the complete joy this can bring when you need/want something quick on the go - but trust me, for those of us that this isn't an option for - it's kinda like a holiday when it happens... and we celebrated all summer long.

It was perfect for our transition back to school.  FINALLY, Parker could go to McDonald's with his friends at lunch.  He could be a 16 year old kid.  Independent. Ordering for himself. Hanging out with friends at lunch. Eating. Typical.

Typical 16 year old.

His teacher and I talked out a plan, we would get him transitioned back to school, into the routine and then starting with once a week with his parapro in the distance start adding this to his schedule.  It was exciting. I was so excited for him.  We were ready.

Then... tonight.  Tonight.  Ugh. Tonight.

After picking Allison up from cheer practice we had planned to swing through the drive through for McBites. I pulled up and ordered.  "2 regular McBite meals with Sprites, no dipping sauce."  And that's when the words I dreaded came. "I'm sorry we no longer serve McBites."


Parker processed what he said as quickly as I did. My handsome 16 year old in the back seat turned into my melting down 4 year old who had just been told "no".  While he was upset about the present, I was crushed over the future. Thankfully, we both handled our meltdowns gracefully with nice words, nice hands and talking over solutions.

Inside though, I was behind livid with the situation. As a special needs parent you strive for moments when your child can be "just like everyone else" even if for a moment. Life isn't easy with everything that goes on inside of his mind and body non stop.  He does his best to hold himself together, to have friends, to fit in, to just enjoy life - and he DOES enjoy life. He's always smiling, always laughing even when you can see the uncertainty and distress that he tries to hide.

I know, life is about change.  Everything is constantly changing. There is nothing seasonal about McBites, they aren't like a Shamrock Shake or something pumpkin for fall.  It's a bite sized piece of chicken, completely acceptable to have on the menu year round.

Consistency.  It is the key to our life, to our success, to our "normal".  It's really not as difficult as it seems - why can't McDonald's apply it to their McMenu instead of McChanging things all the McTime.  This is the 2nd time they have had something he actually liked (the first was the Chicken selects) and the 2nd time it's been taken off the menu.

I'm sure there are reasons that not every McDonald's carries the same menu (not one I will find acceptable because I believe in consistency) but I'm sure there are reasons.  That rules out stopping at McDonald's when we travel.  Now we are crossing it off our local options too while I return to square 1 of figuring out how to provide my son with a typical off campus lunch with his friends.

I understand in the big picture of life, this is small.  Very small.  Trust me I have way, WAY bigger things to worry about and figure out solutions for. It doesn't make the disappointment hurt less or the frustration go away quite yet.  Once in a while, it'd be nice to have the consistency for him. For something so "simple" and taken for granted by many. To not have to worry about menu items changing, to work on a plan and be able to see it through - to have control over those little things that I have no control over.  Just for a simple McBites lunch during school.

Sigh. Back to square 1... and holding a grudge of not forgiving McDonald's any time soon.

Sunday, August 23, 2015

We have a secret... or two :-)

We've been keeping a little secret at our house over the past 9 days... 2 secrets actually.

Despite the protest of my children (translate that to Allison as Parker still tells anyone he wants to!), I've insisted that we not be public about it just yet.  We shared the secrets with our closest family and friends, a couple of responses reminded me why I didn't want to share with the world... not yet.

We live in a world where people are incredibly quick to judge.  A world where people are willing to see only what they want and not what really matters.  A world where people enjoy to poke fun at others. A  world that I feel I have to justify every move I make in, despite being a grown 41 year old woman. Because of this world, my anxiety said... not yet.

So let me put the following on the table, before I share our news, before I burst with joy, let me get the unnecessary out of the way. I have incredible friends. While I am not in a position financially to take more on, my friends are - covering the fees, providing me with all of the items I needed to make this happen.  Everything for our little secrets are covered - everything - for at least the next 2 years, if not even a bit beyond.

When I lost my neighbor, Jack, I felt as though I had lost part of my purpose in life.  There has been a huge hole that I've tried to fill with multiple other things but the hole remains. I miss him tremendously. I needed something, something to bring me down a notch, something to calm my anxiety, something to care for and love. Something to help fill that hole.

That's when I got the text from my friend, Barb.  The Human Society had a new kitten, not ready for adoption but one I could foster until she's ready to adopt.  One who is.... part Siamese.  My grandma Lovadee had a Siamese cat when I was little, Samantha.  She used to perch on top of the refrigerator and in the window in the dining room. She was gorgeous. My mom had a Siamese when I was little too... Sabrina.  Sabrina was incredibly gorgeous and a great part of our family.  I've been very open that I really wanted a Siamese kitten.  When the information was passed along to me, I talked to my friend, Debby, and with a nudge - I said, "I'll take her."  Within a few days, paper work was filled out and I became a foster mom to this beautiful little girl named Emmie.

I was not set on keeping the name.  Our first family dog was named Emmy, however when Allison was told her name she said, "It's a sign she was meant to be in our family, mom!" Therefore, her name remains, Emmie.

When Emmie arrived she weighed 2.8 pounds and was struggling with a GI issue that caused diarrhea.  She was incredibly snuggly and very quiet.  A tiny little girl, the kids took right to her.  Because she is a foster kitten until we can adopt her, she needed to be quarantined and kept away from other cats, which is actually fairly easy to to in our house!

For a short haired cat, she pushed my allergies over the top - so a bath was top of the list on her 2nd day with us.  She wasn't too thrilled with me and Parker became her preferred person.

I don't like baths!

I hid in embarrassment!

And then took a nice nap in mom's favorite blanket!

Until I heard Parker, then I went to curl up with him!

He even put down his iPad for me!
It was clear, Emmie was going to take some extra attention.  Her GI issues were not good, she stopped eating and she had a mass on her nose we were unsure of what it was. We quickly became good friends with Stacey from the Humane Society who was there for every single one of our questions and was great at checking in on Emmie.

It was bigger than it looks


We celebrated when Emmie ate yogurt for us!

The first couple of days weight loss was clear.  She was drinking well but not eating and with the large amounts of diarrhea she was starting to dehydrate so we took her in to see Stacey and get some fluids and meds.  We agreed to take her into the vet the next morning. She had very little energy - and reminded me of why we needed to keep her a secret - if we lost her it would be incredibly difficult, sharing that was not something we were ready to do.  Our focus was on getting her better.

We had been keeping Barb in the loop (and flooding her with pictures) when she made a request, something for us to think about..

The last of the litter, the only one not adopted- possibly because he's all black and his Siamese features were not as obvious... Thunder remained at the Humane Society.  I made a couple of calls to some dear animal loving friends and a decision was made. There was an adoption fair for kittens that weekend (there is a huge abundance of kittens right now) and I told Barb to let me know on Sunday if he was still there. If he was, we would come get him.  Around 4 pm on Sunday the message came, Thunder remained so, thanks to the love of my friends, we made the drive out to bring him home.

Healthy and full of life, energy and curiosity -  we were able to sign the papers immediately for him.  I wasn't thrilled with his name. My heart wanted - and needed - Jack back.  I suggested we name him "Jack".  Parker put his foot down, he liked "Thunder".  Allison wanted "Jackson" after a kitten Aunt Heather once had.  With that, "Jackson Thunder" was named.  Depending on what he's doing and who is talking you'll hear "Jack", "Jackson" or "Thunder" said to him :-)

He settled right in without any problem!

He redefines curious :-)

And isn't afraid to check anything out!

Because you never know what you may find!

Adding 2 new kittens into a house where we already have 2 adult cats plus a dog and 2 kids with Fragile X... well, I understand, it doesn't sound sane.  I knew the reaction from people would not be kind but my focus was on getting Emmy better.  Parker took me with her to the vet for her 1st visit. We met Dr. Amanda who was absolutely amazing with both Parker and Emmie!

Emmie was clearly losing weight, already down to 2.2 lbs.  She was given medicine and we were relieved that her stool sample was clear from any parasites!  The new concern was the spot on her nose.  Dr. Amanda let me know there was a chance it was a worm growing in her nose - and if it popped out to let her know immediately so they could remove it completely. **Yes, I freaked out at the very thought of it.

After discussing her continued weight loss with Dr. Amanda and Stacey and concerned because she wouldn't eat the yogurt any longer it was recommended that we give her baby food - Chicken and Gravy.  It'd be soft on her stomach and not cause additional diarrhea.  So, multiple times a day, I'd offer her baby food - by the spoonful, hoping she'd eat.  She really liked the baby food which was a huge relief to me!  I had no problem working in time to feed her as needed.  On Thursday there was a change in her nose - something was happening so I called back out to Dr. Amanda who got her right in.

I was relieved to learn it was NOT a worm, instead it was an abscess that they were able to lance.  I took on the role of mean momma kitty and every couple of hours I would use a warm, wet washcloth with soap to gently scrub off the scab to keep the area open.  She was also started on antibiotics. The disappointing news of the visit was Emmie was now down to 1.9 pounds.  She was all bones, there was simply nothing to her. I was incredibly concerned that we would lose her.

Now on 2 meds a day, a lot of love and worry - I have a huge respect for the individuals who foster animals.  Yes, you get a lot of love and cuddles but it also comes with tremendous responsibility and concern that you may not be able to do enough no matter how hard you try. We continued to feed Emmie baby food and would offer her dry food.  I learned that I would text someone I just met within the past week an excited "We have real poop!!" text when the diarrhea started to come to an end and Stacey would text back an excited response.

The last 2 days we've seen huge improvement!  Emmie is eating on her own anytime she wants!  She's still getting baby food but she's happily eating kitten chow too!

Today we took her back to the Humane Society to see Stacey for a check up.  She's up to 2.5 pounds!!!  A HUGE gain for just a couple of days!  She's full of energy and you can really see her personality begin to shine through.  She still has many days of medicine left and weight to gain but we are anticipating her being all better very soon!!

With Stacey's blessing, we introduced all of the pets together today - our family has truly grown by leaps and tails <3

I know what to expect.  I know that I'll hear and see posts referring to me as the "Crazy Cat Lady." I know this is part of the reason I held off on sharing our wonderful news.  The bottom line is our little family is happy - happier with our new additions.  Yes, we are out numbered by our animals, but our animals are very, very loved.  They are well cared for and a big part of our family.

There really are 2 kittens in this picture!

2 beautiful kittens now have a safe home where they will be very loved. We are a little family, we don't have a lot to offer but we have an unlimited amount of love - and at the end of the day, that is what matters.

 At the end of the day, maybe I am the "Crazy Cat Lady" but, I am also the lady with significantly less stress and a new feeling of peace and purpose.  The lady with new and tremendous respect and appreciation for individuals who foster animals and those who adopt.

Not only does it fit me well... but, trust me, I've been called worse ;-)

Thursday, July 30, 2015

Because Fragile X is forever...

I know.  You're waiting.

Something profound. Something to touch your heart. Something to make you think. Something to make you understand.

I know.

I know I've been quiet.  I chalk it up to "busy" which is true both in life and in the "writing" in my mind.  I've written a hundred blogs that my mind constantly dictates, if only I had someone who could scribe my thoughts, we'd be set.

I know almost the entire month has passed and while I've shared facts about fragile x all month long on my Facebook and Twitter accounts, I haven't made it personal... I haven't let you "in" and I haven't blogged.  A few of you have even reached out asking me why.

When my children were diagnosed 12 years ago with Fragile X I opened up our lives in a very public way. Newspaper, TV, Radio, Magazines... every possible way I could think to reach out and tell our story, educate others, raise awareness, I did.  Selectively now, I still do.

There are multiple reasons it's more selective now but the one that is hardest for me to swallow is the biggest reality - because my children are no longer cute adorable toddlers.  They are now cute, adorable teenagers (well, almost for Allison - let's not rush these last few weeks before turning 13!).  People want to see babies, toddlers, young children who's lives need their help. Initially I saw this as a "sign" to step back and "pass the torch" but then I realized, my children don't get the option of no longer having fragile x just because they are teenagers.  They won't get that option as adults either. The reality is this is life long for them. No really, it's forever. For-ev-er. For as long as they both shall live they will live with the challenges of having the full mutation of fragile x. For always.

I didn't promise my children I'd stop when the world wanted to see younger faces, I promised them forever.  Forever I would advocate, educate and make a difference.  We have a long time left in that promise, my work is far from done... no matter how tired I am there is more to do on this journey.

It's an interesting new world, having a 16 year old son with an intellectual disability who still has 16 year old hormones. A 16 year old son who asks me every 5 minutes what I am doing and why I am doing it, is the same 16 year old who wants me out of the room so he has privacy while searching YouTube for videos that are incredibly different from the "Ruff, Ruff, Tweet and Dave" show that is playing on the TV in front of him.  A boy who spells at a first to second grade level can easily type "girl, swimsuit, bikini" on his iPad, auto fill in is his friend for the video options.  YouTube's parental settings are the furthest thing from perfect.  At the same time, he's 16 and a very typical 16 year old boy at that - his bedroom has posters of sports teams and girls in swimsuits. At a glance, you'd never guess there were more to his story than a typical 16 year old boy but there is, so very much more to his story.

As he prepares for his junior year of high school, his friends prepare to return with a driver's license in hand.  As they prepare for life after high school, I wonder how I will explain to him where his friends have gone as he continues on with school after graduation with job training.  While his peers begin to think of careers, I try to guess what Parker would like to do after he does finish school.  At our last meeting with the school, the local sheltered workshop was recommended for Parker's future.  While it's an excellent place where I have many friends that work - I know he is capable of so much more.  I've fought long and hard for inclusion that continues after graduation as I find the right place in our community willing to employ him.  In all honesty, when this crossed my mind when he was 5 I thought more options would be in place by the time he was ready to make this transition... it depresses me that I was so very, very wrong.

The reality is Parker will always need assistance. Always, throughout his entire life. It's incredibly difficult to admit and it's not that I or anyone else has failed him.  We haven't and he has not failed us.  He continues to learn, continues to grow, continues to exceed expectations.  We continue to push, raise the bar and well... hope and pray, a lot.

Thank you, Lisa Lawrence for this beautiful graphic!
I thought that every parent worried about what would happen to their grown children when they were no longer here.  After a lengthy discussion with a group of my friends who all have typical kids, I learned nope... that's just me.  They know, as adults, their kids will be ok.  They will have the skills to live independently and carry out full lives.  They "won't be needed" which is kinda sad to me but I guess, I understand that too as my goal is for Parker to live independently one day while I am still here so I know that when I am not, he will be ok without me. (As ok as one can be without their mom anyway).  At the same time, there are things that scare me to death that they have never had cross their mind.  Things that I thought were only worries when he was little but as he ages I know are concerns for his adult hood too. I have to continue to do the one thing that is hardest for me to do when it comes to my children and other people... trust.

When your child is non-verbal, or like Parker limited-ly verbal, you put a huge amount of trust in anyone who spends time with them when you are not there.  School, camp and in Parker's future someone to assist him with daily living skills, either in a group home or as a personal assistant.  One day, I won't be here to help him and all of that will fall on others, likely strangers who I have to learn to trust. (or figure out how to haunt after I'm gone).  His sister will, I know, do all she can to be sure he is safe and well cared for but her life will go on too and she will need to care for herself and her family.

I have so much to teach Parker. So much to teach the world around him so over the next several years he'll be ready for his independence. It's a long road ahead, it's been a long journey to this point and there is a very long way to go.

I know he's now a handsome 16 year old, his sister a beautiful almost 13 year old - many of their challenges and struggles are different now - some are the same.  Anxiety still rules our lives.  It will always be part of us. Sensory issues are a daily treat.  Aggression is still there for Parker.  Depression loves to run rampant. Medication is part of our life. Routine and schedules keep us sane. Laughter still takes over each day. Love will always conquer all. Worry creeps into the shadows of each day, knowing that tomorrow we are one day older, one day closer to those next steps.

I'm not sure what Parker's life as an adult with a disability will look like.  I know he will have a job, I know he will be active in our community. I know he will want to be with his friends. I don't know where his friends will be or if they will stay in touch after school.  I am sure, like with all of us, new friends will come and go throughout life but I hope that many that he has made will forever remain with him.

When I started this journey, I was alone. I was creating new paths on my own.  Now, the mountains I climb are surrounded by a beautiful sea of amazing friends who all walk this path, who all pave roads, who all strengthen and inspire me. I'm not alone. They are not alone. Our children, while often living states apart, are growing up into adults (and some already adults, even older than me!). Together we will change the way disability is viewed in adults, because it's not just the little ones who are adorable and need your support!  :-)  It's a life long disability with challenges and successes at every single step of the way.  It's a journey we will share and hope you will support and join us as we bring understanding to life - all of life - with fragile x.

We've been forever connected by a disability we knew nothing about.  We've changed our communities, educated professionals and participated in research.  While our children are growing older, there is still a lot for us to accomplish.  There are still messages to share, hope to hold onto and a difference to make - and together, we will do that.

We can't do it alone.  All month long I've asked for your support.  That continues today and every day.  July is Fragile X Awareness Month, an entire month dedicated to teaching others about Fragile X.  We have a fundraiser set up specific for this month.  I beg of you to please, please donate to it here at our Crowdrise link .

Please take time to learn more about Fragile X and support the efforts of the National Fragile X Foundation here.

No matter the time of year, your donation can make a difference, please give when you can.

The reality of our lives is simple.  Fragile X will forever be a part of it.  My children will one day be adults living with the full mutation of fragile x.  I will forever be a carrier of the pre-mutation. I will likely face other fragile x disorders in my life including FXPOI and most scary of all FXTAS. Very little in this world scares me more than FXTAS and the effects it could have on me.  So much so, I won't blog about it but you are welcome to read more about it and I encourage you to do so.

Fragile X disorders bring challenges to multiple generations of a family at one time.  While our lives are beautiful, they are challenging and there is so much needed to be done.  That takes money.  I wish it were free.  I wish research was free. I wish education, advocacy, awareness and support were all free but they are not.  Our future and the future of over 1 million people in the US alone are counting on us.  The National Fragile X Foundation needs your help to make a difference.

Please.  Be a part of the difference and donate today.

Sunday, May 10, 2015

Not so quality medical care, Momma's sick.

I held off on writing this because I don't like to write from emotion alone no matter how I'm feeling. I want to step back and be fair, re-evaluate and think the entire situation through.  Ok, and not be so mad that I'm typing out f-bombs like punctuation, which is a very accurate description of where I was earlier today.

I've always been very supportive of our local clinic and hospital.  We are very fortunate for a small town to have the medical facilities that we do. I've never really understood why people leave town for medical care - especially in an emergency - or complained about the quality of care that is provided.

Until today. 

I am the first to admit, I've been incredibly spoiled with the absolute best medical care for my family.  I was under the care of Dr. Steutermann for both of my babies, because of him and the great medical team that delivered Parker as an emergency c-section my uterus was saved and 3 years later I welcomed my beautiful princess, Allison, into this world.  When Parker's delivery took a turn for the worse (for me, not him) Dr. Steutermann never gave up, I'm told he swore like a sailor that day which was incredibly uncommon for him but his determination persevered and to this day, I am thankful to him.  I received incredible care pre and post pregnancy. To this day, since his passing, I have not replaced him... I know I need to but... I haven't.  From birth, Dr. Krock has been a part of Parker and Allison's lives.  If there is something he is not familiar with, he's open and honest about that with me and searches for an answer.  He's incredible with both of my children, accommodating for their disability, always learning, always asking questions and always putting new solutions out for us.  He works wonderfully with the Fragile X specialists and holds my highest respect. It takes a lot to get me to the doctor, I was under the incredible care of Dr. Day for many years until he retired. Replacing him took me a lot of time (ok, and getting really sick) because those were going to be some huge shoes to fill.  I was lucky to be referred to Dr. Bowers, who has always went above and beyond for me, listens and doesn't give up on me.

Several years ago, Allison had stitches from a mole being removed by her dermatologist near her ear.  The day of her birthday party  she landed wrong on the trampoline (which she had been cleared to jump on) and split the stitches open... at 4:55 pm.  With a quick call to the clinic, Dr. Buckley and his nurses told us to hurry down, they would stay and wait for us and stitch her back up without a trip to the ER.  This is the type of home town, personalized care that we've always had.

It's not just the doctors, we've had the best nurses like Elsie and Mary (and way too many to name), I'm yet to meet a receptionist that I don't adore and last week when I took Parker to the lab for a throat culture, we had - hands down the best lab girl in the entire world.  (her name is in my office as I have on my list to write the clinic singing her praise).  She was outstanding with Parker thoroughly impressing me and successfully getting his throat culture.  To say she was amazing, fun and spot on with working with someone with a disability just isn't praise enough for what I witnessed.

So, yeah... spoiled.  I've been spoiled with incredible medical care here.  Spoiled to the point that I expect it.  I expect to have qualified, pleasant, caring professionals working with me on my medical needs.  Not getting that today has left me understanding why people don't choose our local clinic and services.  

Here's why.

My allergies have been difficult all week.  Pollen counts are high, everyone is mowing, my windows were open for 2 days because our air went out.  Our allergies are the reason you rarely ever find our windows open (and reason #18471 I love winter so much).  So as the week has went on and I've become increasingly more ill, I began to question if it was really just my allergies.  I was faithfully taking Mucinex, Tylenol, Ibuprofen, Clariton and now and then Robitussin just for an attempt to breathe.  As the week went on, I developed a tight, deep cough and wheezing. I couldn't take a deep breath and my chest felt like a million pounds of pressure caving in.  My ears began to ache, my throat began to swell, I couldn't regulate my body temp and I could not shake the headache and pressure in my head.  Still... I had this under control.

Until I woke up this morning with a 103 degree fever and chills in addition to everything above.  I was a barely functioning mess.  It was also Parker's regional track meet, not just his opportunity to qualify for state but also he was chosen as one of the members of his team to be part of the torch run during opening ceremonies.  This is an opportunity that will likely never come along again.  Missing it was not an option.

My mom met us in Monmouth for the track meet.  Mom, I should mention, is a nurse.  In talking with her and with Scott's girl friend, Jen - also a nurse, it was clear I would need to leave the track meet and get into Urgent Care for something fast acting in the form of a shot, to get me started.

I left the track meet after 2 of Parker's 3 events and headed back to Canton after debating going to the Galesburg Urgent care because it was closer.  I chose to drive all the way back because this is where my trust is.

I thought it would be better to call Urgent care instead of just walking in, giving both them and me a better idea of who would be there and the approximate wait time.  When I called, the receptionist said their appointments were full but she would pass me back to the nurse who could help me.  That conversation was the start of what was a day of understanding all of the negative attention our clinic gets.

While on hold, the phone suddenly started to ring.  When someone answered I was not sure if I was back with the receptionist or what had happened, so I said, "Hi, I was holding for the nurse." in response to the "Hello?" at the other end.

She replied, "This is the nurse."
I said, "I understand you are full this afternoon but I need to get in to be seen.  I was wondering if it is possible to make an appointment."
She said, "No.  We are full."
I said, "Ok, well, you are a walk in clinic, correct?  I can just walk in to be seen."
She said, "No.  You have (counting) 14 people in front of you.  It'll be at least 2 hours."
I said, "Ok, then can you put me down for 2:46 ( 2 hours from the current time)"
She said, "No. We are not taking appointments."
I said, "Ok, I can come in as a walk in and wait 2 hours."
She said, "No."

MIND YOU, she never even asked what was wrong.  My voice was incredibly horse, I was struggling to breathe to talk - clearly I was sick.

I said, "Actually I can."
She said, "If you wanted to be seen you needed to come in or call at 8:30 when we opened."
I said, "8:30 this morning was not an option. I had other obligations."
She said, "If you were able to do other obligations you are clearly not that sick."
I said, "You have no idea how sick I am. This was not an option. I will just walk in and wait."
She said: "If you are that sick, you should go to the ER."
I said, "There is not point to go to the ER when we have an Urgent care. That is why you are there. I will just walk in."
She said (again) "We do not have time, there are 14 people ahead of you."
I said, "I look forward to spending time with you in a couple hours. I can't wait." and hung up on her.... possibly after muttering something resembling the f-bomb.  Not my best moment.

When I arrived at the clinic there was ONE, yes 1 car in the parking lot.  I took pictures I was taken off guard by the lack of cars there.  No one was in the waiting room. It was just a super sweet receptionist.

I told her I'd like to make an appointment, hearing my voice she said, "didn't you call a little bit ago?"  I said, "Yes and against the nurses advice, I am here."  She said, "You are in luck, we had a 1:45 appointment just cancel.  I can put you in that time slot."  I said that would work.  She apologized for the lengthy wait time which I told her I understood and expected at an Urgent Care, especially without an appointment and thanked her for getting me in.  A couple of people (3, I believe) came in with appointments while I waited.  No big deal.  Clearly not 14 but I was rather thankful for that miscalculation given how bad I was feeling.

When I went back my temp was 101 with Tylenol 2 hours in my system. When I was seen the focus was on my allergies.  I was simply having an allergy attack.  No looking into my ears, my throat, nothing.  Just a strong recommendation to use a netti bottle (which I am very opposed to knowing that if your water is not clean enough you could be doing more harm than good and I was raised not to stick things in my nose - yes, I know many people love them - please, this is not about netti cleanses, that is just my personal 2 cents - it's personally not for me.) I mentioned that my daughter had strep a couple of weeks ago and it was said "maybe that was what was going on with me."  Moving the exam on, it was discovered I was wheezing and had significant chest congestion, I also have fluid in my ears - the left ear being really bad and my throat is red and sore.  No clue on the strep as no culture was ordered.

I said that although I haven't used my inhaler in a couple of years, I do have asthma.  I was told, I don't. I likely grew out of it.  Interesting that 2 years ago, I still had it.  Apparently 41 is that magical age where it disappears.  I wish someone would inform my lungs of that.

The decision was made that I was in crappy shape. 3 shots would be ordered to accelerate the healing process. (I liked this a lot, especially since it was what my mom wanted), an inhaler would be ordered to open up my lungs and an antibiotic to start that evening.

I will say, everyone was very nice.  Nothing at all like the phone call.  They all urged me to call or come in the next day if there was any troubles or I was not better.  Perfect. I was willing to write off the crappy and unprofessional phone call.  I asked about my prescriptions and was told they had already been faxed to Walgreens and I could go pick them up.  So I left, empty handed, no idea what I was shot up with or if this burning in my hips from the 3 shots would subside anytime soon.

I went to Walgreens to pick up my prescription and they said they had not received it yet so I went home to lay down.  I was completely exhausted, burning up with a fever and in really bad pain from the shots.  So, I called mom.  She told me to ice the spots and take a nap, however because I didn't have any paperwork I couldn't tell her what the shots were which made it difficult for her to tell me how long the pain may last.

I woke up after a short nap and went back to Walgreens only to find out they still did not have anything.  They checked their Walgreens system and there was nothing for any of their stores. They recommended I call WalMart to see if it went to the wrong place, so I did.  Nothing.

Here we were, almost 6 pm. Urgent care is closed and our pharmacy's are about to close for the night.  I have had 3 shots and need my inhaler and antibiotic so I call the hospital.  The incredibly sweet receptionist (really, this part of the job they have down!) who paged the dr on call to see if he could access my records and help.

I had already looked at the online patient portal which was incomplete.  Part of my information was there from today part was not.  Lots of "directions are in the notes section" (or something to that effect) was written but nothing in my notes or email, just a partially complete review of the day.  When the doctor called I told him what was going on, he asked what was prescribed and I said I believe Bactrim but I did not know on the inhaler nor did I know the dosage.

He asked which pharmacy and I said my only option is to go to Pekin, 40 minutes away and could he verify that the pharmacy would be open long enough for me to make the drive before giving them the order.  He said, "No. That is the responsibility of the patient. You need to know the hours of the pharmacy of your choice."  Well, I was tearfully sitting with a fever barely able to breathe in the parking lot of the pharmacy of my choice and they were closing. I am sorry I do not know the hours of pharmacy's I never use.  So I said I would look that information up and call him back.  I did.  4 times and he never answered.

So, I called the hospital back and asked them to page him again and request that he call me.  He did.  I told him the pharmacy I wanted, thanked him and started the drive over.  On the way over I called to be sure that my script was called in, it turns out the pharmacy I thought was open til 10 was closed.  Apparently I do not do my best research when I am sick as I looked at their weekday hours, not the weekend ones.  There is another location in Pekin with a 24 hour pharmacy so I called the hospital back, explained my mistake and asked them to page the dr to have him use this other pharmacy.  He did.

When I arrived they had the antibiotic but no inhaler was called in.  I understand that the dr on call for the hospital didn't see me and couldn't prescribe an inhaler without treating me or being able to find it in the notes left by the doctor who had treated me earlier.  I was happy and feeling victorious for having 1 of the 2 items.

Here's the thing.  I understand busy.  Trust me, I understand busy.  I understand frustration. I understand wanting your day to be done.  I understand bad days.

What I don't understand is rudeness.  I don't understand telling someone who is ill that they were clearly not "that ill" if they couldn't come in as you opened your doors and telling them to go elsewhere and not come in at all.

I don't understand incomplete file updates that are being done electronically while you are with the patient.

I don't understand not listening to the patient.

I don't understand saying you faxed in a prescription when you did not. I don't understand how I was sick enough for 3 shots but not for the additional pills to be called in so I could be properly treated.

It's rare I have to stray away from our regular doctors. I'm thankful we have an Urgent Care but will say that based on first impressions - this could not have went much worse. It was not the level of patient care I expect.  It wasn't even close.  I don't expect to be catered to. I expect to wait my turn, I expect to have to update someone who has never met me with all of the things my regular doctor would know... I'm realistic.  What I don't appreciate it being told not to come in and my medications not being called in for me.  I don't like not having information on what shots I was given, it's hard to gauge reactions and interactions if I have no idea what was put into my body (I'd still go the shot route, it was the best decision, I just want to know WHAT it was.) I don't like making multiple phone calls, driving 40 minutes each way and only having part of my medications.

Maybe I'm picky.  Maybe I'm spoiled. Maybe it's a reflection of how crappy I feel.  But this to me is not quality care.  This is not what I expect and I am sad to now understand why others are so quick to go elsewhere and complain so often about the services provided.

I'm also thankful that come Monday, I can call my regular doctor ... who I know will provide quality care.

Sunday, May 3, 2015

Milestones... Parker's 16th Birthday

16 years ago today you came into my world.  I wasn't sure I was ready, some days I’m still not sure I am.  I wasn't the expecting mom who couldn't wait to have this child.  I was the expecting mom who loved knowing where you were, always with me, safely tucked inside my protruding belly. I was worried if I could keep you safe, if I could raise you to be a kind, thoughtful man in a world so filled with evil. I was worried about a million things which, as it turned out, none of needed to cross my mind. I had no way of knowing the worries I would have would be far greater than I could ever imagine.

You came into this world with struggle yet so perfectly.  With your head caught on my pelvic bone, an emergency c-section was ordered.  A surgery that you breezed through, scoring perfectly on your apgar scores, yet leaving me hemorrhaging on the table at risk of losing my uterus. I am incredibly thankful to the medical team who saved my uterus (allowing us to welcome your sister to this world 3 years later) and who with family and friends took wonderful care of you while was I given unit after unit of blood during those first 48 hours. While it makes me sad that I am unable to remember those first 48 hours, visitors, phone calls, first cries and diaper changes I remember clearly not wanting you to ever leave my room.

Some people say that if you can’t bond immediately during the very beginning of life, that bond is not as strong as others - or is lacking. Our beginning bond was not ideal. We were together, you nursed, you were laid in my arms and on my chest, I simply was not stable enough from the blood loss to do anything on my own or welcome you the way I had imagined into this world. Our bond, however, was clear from the start, you made all of my dreams come true and our bond was – and still is – undeniably strong, we have a way of proving the world wrong.

Over the years, we've spent a lot of time celebrating the inchstones in your life.  While other children your age were saying first words, learning to ride bikes, or picking classes for school… we were celebrating in our own way, our own goals.  Through therapy, early intervention, and school you continued to grow and we continued to celebrate things others take for granted, things that come easily or natural to some are incredible struggles for you. Yet, we never lose hope or faith.

Your birthday is always a little difficult for me, as your mom watching you grow up into an incredible young man is beyond expression – I am so proud.  It’s difficult because time is going too fast and I need it to slow down. Not just because I don’t want you to grow up (although that’s part of it!) but because we don’t have the answers we need yet and I know each day that goes by is a day we've lost from your future.

I've struggled with incredible guilt over the years since your diagnosis of Fragile X. I struggle with the fact that I didn't know, I had never heard of this genetic condition that I have inside of me and that I would pass along to you… and your sister.  I didn't know. I am so sorry, I didn't know – while I never, ever want to even think of what my world would be like without you, I am so sorry that you have missed out on the life that could have been if you did not have Fragile X Syndrome.

It’s not often that I let myself go to this place in my heart and mind. It’s an incredibly difficult place to leave once my mind is here.  Sometimes, I simply can’t help myself – the world around us has a way of triggering my mind and emotions to visit this spot. Sometimes it’s seeing kids your age playing at the baseball diamond, football field or basketball court… seeing them independent and now dating, driving, working, preparing for college and the next steps in life. 

It also happens often around your birthday.

During one of my favorite days of the year, the day to celebrate you even more than I do every day, a cloud of guilt tends to hover over.  Another year without an effective treatment for you, another year without a cure, another year of incredible accomplishments and mountainous hurdles… another year where you are trapped inside of this neurological disorder that stops you from living a life of unlimited possibilities. This year your birthday has hit me harder than ever before.

Today you turn 16.  16!!  Putting aside for a moment that I’m way too young to have a 16 year old son, even one as incredibly handsome and wonderful as you… 16 is an incredible milestone for every one.

In our buzzing world of social media, I can’t simply hide my way through this year away from the reality of watching your friends learn to drive, flashing the picture of them with their driver’s license, and proudly showing off their new (or new to them) car. It’s there, daily as I log into Facebook, Instagram or Twitter.  I love your friends dearly, my heart is filled with excitement for them and pride in who they have become.  I cherish those who have never left your side and include you on this journey of life through grade school, middle school and now in high school.  I am, happy for them.  I also hurt, deeply, for you and for me for the experiences we don't get to share.

This (driving) is a milestone we likely will never meet. There was a time I believed we would, I was told “we will have a cure before he reaches puberty”.  They tried, they really did and they continue to.  We've participated in research and continue to. I know it will happen, however, I also know it is too late in your life for you to have a “cure”.  There will be an effective treatment in your lifetime, I believe with my entire heart, it will cure those not yet born or those still very young… but it’s too late for a “cure” for you.  It’s ok. An effective treatment will be amazing and life changing – and you will continue to shine.  I just have no idea when it will happen which leaves me to focus on today.

I will celebrate this entire day with you, from the moment you wake up until the moment you lick my face and tell me goodnight… we will celebrate you to the extent that you can handle.  What you won’t see is how much my heart is breaking today, that while I have given you a life filled with love, I was not able to give you the life like your friends… the life that would put keys in your hands today.  A tiny part of me sees this as a blessing, I never have to worry about you out on the road driving, breaking curfew, drinking and driving, drag racing… that endless list of possibilities that happens when you are able to drive.  Still, I’ll always hold the guilt of never being able to give you that “typical” life – because you deserved it.  You deserve so much more than this life has handed you.  It doesn't mean you don’t have gifts, you do.  You inspire people world-wide, every single day.  The world has watched you grow up, they've laughed with you, cried with you and celebrated with you.  You will possibly positively impact more people in this world than any of your classmates. The difference is, you will likely never realize the amazing impact you have on this world, how you make it a better place.  That won’t stop me from telling you and reminding you how incredible you are and how love you are by everyone every single day.

Today, I can’t give you a car to drive (well… I could just not legally and it wouldn't end well), I can’t know what you are thinking, I can’t do many things or give you the ok to do them… but I can continue to love you more than life itself. I can promise you that today, as you celebrate your 16th birthday, that we are in this journey together.  I can honestly tell you that you have filled my life with more love, pride and inspiration that I ever knew was possible.

And while I can’t give you a car or driver’s license – I can make a promise to you and plea to those whose life you touch.

My promise to you remains the same, I will always love you unconditionally, you are my smile, my laughter, my pride, my heart and my soul.  You are my inspiration and I am better because of you.  I promise to continue to do everything I can to make a difference in this world.  I will continue to work hard so families who are diagnosed know they are supported and never alone on this journey.  I will continue to advocate for you and others on every level from the bottom to the top…our voices will be heard.  I will continue to educate others on Fragile X, raise awareness and let you inspire the world around us.  I will continue to be sure that research is supported.  I will never give up hope that the “more” that is out there for you will happen… it will, my heart believes it.

My plea to those who know you or who may have stumbled across my blog is that today (or anytime this month of May) that you make a donation to our Crowdrise page to support the National Fragile X Foundation in Parker’s honorCelebrate Parker’s 16th birthday by making a donation in his name, being a part of the support we need that the National Fragile X Foundation provides to families on this journey; providing advocacy, supporting research and raising awareness that impacts our every day life.  Fragile X isn't about just one thing… it’s about everything.  Research is one aspect to our lives, one aspect to our future.  We still need to get through today, tomorrow and the weeks and years that lead up to that life changing answers.  We can’t do that without support, awareness, education and advocacy – we need every aspect, including research, to be sure that Parker and those living with fragile x, have the daily skills and tools they need to be successful adults.  One inchstone…one milestone at a time.  You can make your online donation to celebrate Parker’s 16th birthday here .

Parker, 16 years ago when you came into this world, you forever changed my life making my dream of becoming a mom come true. You have taught me patience, understanding, respect, fight and determination – I am forever thankful.  There are no words to accurately describe the love a mother has for her child but I don’t think I need to.  I believe you see it each time you glance into my eyes, hear my voice and feel it with all that we are with each squeezy hug. I’m sorry this isn't the life we had planned, a part of me will always hurt over the experiences that will be out of your reach but I am not sorry that you are my son.  I cannot imagine my life without you and pray that I never know. Whether we are celebrating an inchstone being met, a milestone, or just that it’s another day together – every day I celebrate you.  You and Allison are the most amazing gifts I've ever been given, the 2 of you complete me, inspire me and leave me bursting with love and pride.

Happy 16th Birthday, Parker.  Mommy loves you most of all…and has a ridiculous amount of Cubs themed gifts for you today!!  :-)

For our friends… please celebrate Parker’s 16th birthday by donating here.  It all adds up, no amount is too large or too small, it all – just like each one of usmakes a difference.

Sunday, April 19, 2015

Life's reminders

I love to write, it's why my blogs are often long instead of short.  I love the details of life, of our journey, our daily story. Sometimes though not many words are needed as a circumstance itself often leaves a bigger impact than words ever could. Translating those experiences into words sometimes comes naturally and sometimes feels like the words I've chosen can never make the impact of what caused them to begin to stir in my mind...but I will try.

Last Friday Parker and I made the 4 hour each way trip to Chicago to see the wonderful fragile x specialists.

After the 4 hour drive up Parker refused  - for over 2 hours -  to leave the van and go inside. When he finally did, thanks to Anne & Dr. Mike, he was a superstar throughout his hours of testing charming and surprising everyone - except his expected nothing less very proud mom :-)

When we left for our 4 hour drive home I promised Parker we could stop at American Sale, his favorite store, just outside of Chicago. That stop never happened.

We were in barely moving traffic for 1 hour and 42 minutes.  I could see from my navigation that there had now been 2 separate accidents causing the back up.

During our 1 hour and 42 minutes we traveled 19 miles. Parker watched the clock and was angry when it was clear we would not make it to the store before they closed at 8.

Having barely eaten all day due to his anxiety of the visit he was incredibly hungry telling me frequently that his belly hurt because he was starving. Even after devouring all of the snacks in the van, he was simply hungry for real food.

The battery on his iPad was dead. It was time...and then past time for his medications that he refused to take.

My mind wandered with frustration,  a combination of processing all of the information received that day, disappointment that I couldn't keep my promise of rewarding him with a trip to the store and exhaustion - all of which I continually tried to hide from him with a smile and entertaining distraction.

As we crept along I thought of all of the ways I've focused life on paying it forward and the incredible personal transformations of regaining personally who I am and the path my life has taken over the past few years. I thought about karma. Something I've never believed in and this was an example as to why. As the instances of ways I had paid it forward that week went through my mind there was no way "karma's" return to me was an over  2 hour parking lot meltdown wait out and now barely moving traffic with an incredibly exhausted son. As I sat in the traffic not moving, listening to Parker grumble about the "cutter" I let merge in front of us I began to type out a frustrated status on Facebook blasting the idea of karma and wrapping my mind around what we "had done" to be put in this situation.

I set my phone down in the middle of typing as traffic started to move again. I could see the lights of police and first responders  ahead. I pointed them out to Parker and we began to count the police cars, ambulance and fire trucks. As we slowly crept by what felt like in slow motion past the 2nd accident I quickly realized it was unlikely that everyone survived.  (This was later confirmed by my friend Missy, a 25 year old mom and her 2 year old did not survive the crash.  Our prayers are with their family)

As I looked at the mangled pieces of vehicles attempting to piece together who or what was involved I kept glancing back to what appeared to be the remains of a motorcycle. My mind raced to the couple that had weaved through traffic early on in our slow journey when my navigation was showing just 1 accident. I prayed they were not the 2nd accident and that whoever was in this was blessed with the miracle of survival.

With a lump in my throat and tears streaming quietly from my eyes I remembered that everything in life happens for a reason. A reason sometimes out of our control and part of a much bigger plan.

This wasn't karma, it was a reminder if my blessings. A reminder that we were delayed today for a reason. A reminder that while we didn't get a reward from the store, we are blessed with another day here on Earth with those we love - a much larger and more valuable reward than could ever be purchased. A reminder that we all need to slow down.

I never did post the status. When we stopped for gas I deleted it instead of finishing it. I hugged my boy, thanked my God and remembered why I have chosen to live my life paying it forward in any way I can. It's not about money, I don't have any :-) - it's about caring. Being there for someone who needs a hand, a reminder they are not alone, an act of kindness to help heal what troubles them.

I believe you should do good things and be kind because it's what is in your heart, not for reward, praise or attention. I'm thankful to those who cross my path with understanding,  a smile, encouragement,  support and love and strive to do the same for the people in mine.

I'm far from perfect. I've made mistakes and always will. I can only hope to learn from them and not repeat them. I use them to be better to those around me, not seeking perfection but understanding the difference being there to support and lift others makes in me...and them.

I have my struggles, they are greater than I will ever share..but I also have my life,  something I know not everyone will be able to say today who could yesterday.  I pray for their families, their friends, their communities...and hope the reminders in my future of what is important versus trivial doesn't take such a somber reminder.

Hold tight to those you love. Remember it's never too late to become a better version of you, to start new, to love deeply, to find passion, to follow your dreams and make a difference in this world...make it a positive one, please.

Tuesday, March 10, 2015

When the time changes.

I can't believe it's been 6 weeks since I've taken the time to write. It's not that I don't have a list of a thousand topics I really want to write about, it's just that life is busy and time slips away.  Writing is moved to the bottom of my list, I tell myself "I will tomorrow" yet I don't.

The past few months my life has been busier than normal, I know that seems impossible (to me as well) but completely true.  Some days I'm not sure how I'm functioning, then I look around at the chaos of my room before collapsing in bed for a few short hours each night and realize where the give has been in order for me to take in more.  It's been a good busy though, a busy that has brought me incredible happiness and a sense of peace and belonging that has been missing from my life. A piece I didn't realize belonged or was missing in my life but completes me in a way that I can't even begin to describe beyond my soul is complete.

While I am busier, I am happier and as odd and completely contradicting as this will sound I feel as though life has slowed down enough for me to really step back and see what is going on around me.  A way that encourages me to want to slow down and step back more. That piece that was missing is peace and it's amazing.  Tonight, it was also tested.

Things have been going really well for Parker for quite some time now.  There was the meltdown at Christmas that left the fingernail of my middle finger completely black and blue for over 2 months. While the color is returning, the nail is now chipping away leaving me with the most unique of fingernails around.  It'll be fine, like all of my bruises this one too will one day be a distant memory and not a daily visual reminder of a rough moment in time. It's part of my life... of our life... of fragile x in our home.  We move forward instead of dwell, each day is new.

Deep inside of me, I've tucked away my uncertainty and unhappiness about this week. This week that should be like any other but is disrupted by the wonderful "springing ahead" of our clocks. While it throws off everyone's balance just a bit, I have been quietly waiting for the fall out from it catching up with Parker.

It's Tuesday, one of his favorite days of the week.  Basketball practice.  One of his most favorite activities. Today, I did not anticipate the time change to affect us, even though, I totally should have.

Our evening had been incredibly pleasant. I didn't work too late.  The weather is very spring-like in the mid 40's to lower 50's which translates to windows being opened in the house. Everyone had a great day at school.  I was fixing breakfast for supper... we were like the picture of perfection.

Allison had been outside playing in the sand, later swinging on her favorite swing on the swing set while I was making dinner. I have been debating all winter of getting rid of it but watching her swing from the kitchen window, seeing her smile and so incredibly care free everything around me stopped.  I soaked in this moment in time -  her smile, her laugh as Daisy would run past her chasing the tennis balls Allison had thrown for her, every second of this beautiful spring like day.  I smiled as I watched her, reflecting on how much she's grown up and appreciating how much she's still my little girl and deciding the swing set would stay.

After I had everything ready, I called her in for dinner.  We had 40 minutes to eat before taking Parker to basketball practice.  I had let her hold off on her homework to play outside with the agreement that she could do it while he was at practice. We ate together, I couldn't help but smile as I watched them finish their meals.  That piece of peace that was missing overflows to all 3 of us in our much more completed lives now.

Life had seemed to fall into place. This is a life I could adjust to, easily falling back into the meltdown free days and evenings, taking in snuggles, hugs and kisses over flying fists, headbutts, kicks and being spat on. I wasn't sure when this became my reality but I was more than happy to be right here. It wasn't perfect, I do have a 15 and a 12 year old... we have some awesome teenage attitude from time to time but I'll take it and giggle at the eye rolls remembering how I used to do the very same.

I told Parker it was time to go to practice.  He knew.  It was on his schedule.  It came after dinner.  There was one problem.  One problem completely out of my control.  It didn't matter what the clock said or that the routine of tv programs was right on track, Parker looked at me confused with those huge blue eyes and said, "It's not dark out."

F*#$&@g day light savings time change. Of course it wasn't dark out yet.  We had "sprung ahead" an entire hour. While we watched people enjoying bike rides and walks in our neighborhood, his walls had been silently crashing down inside over this.  His schedule was off and I couldn't fix it.  I knew things had been going too smooth for this time of year and it hit hard. Literally, he hit (me) hard, when this reality crashed down his walls.

I spent the next hour doing everything I have learned to do over the years. We calmly went over his schedule.  We looked at the clocks.  The TV schedule.  We talked about his friends who were waiting.  I was quiet and calm. Every fraction of a second that passed, no matter how calm and quiet my soft sing-songy voice that he likes was I couldn't stop what was happening around me and within him.

I went with my fall back of humor.  Humor always works. At least almost always. Today, not so much.  He asked for the impossible - for it to be dark first, for Dan (who was at work and lives 40 minutes away) to come take him, for coach to cancel...the requests I couldn't fulfill fueled his already growing fire inside.  I had a reason for everything and his favorite reason for us to really kick it in gear so he wasn't late "I had to poop" (not really at that moment but it's his favorite reason for us to hurry through anything so I go with it) was my fallback - of course, his favorite fall back of mine. While it brought some smiles, it wasn't enough.

When I went outside to start the car, he was behind me a short time after, fists flying, tears flowing.  "It's not dark, it's not time, it's NOT dark" he kept repeating.  I'd ask for hugs as I blocked swinging fists, through tears he'd open his arms and hold me close for a hug only to start hitting my back a few seconds into it pounding with a tightly closed fist.

At almost 16 and 6 foot tall, he has absolutely no idea of his own strength as he towers over me. As I held him close I reminded him "soft hands" and "only hugs".  Not wanting to continue this in the yard for the entire neighborhood I guided him back into the house.  Exactly where he wanted to be so not exactly the best move I made but certainly the least physical.

As I regrouped and brought out my best familiar silly voices that I do that he loves, I would text on my phone, the replies brought him down a notch and almost falling over with laughter at times.  It appeared to be the distraction that I needed to redirect him from "not going" to "going".  However with every step that felt like we were going forward and would make it we were thrown back on our asses by the very bright sun still beaming outside.  "It's not dark yet." would be repeated.

I acknowledged the sun, reminded him that it's spring and will be light longer. I dodged a headbutt or two or seven reminding him to be nice. After missing the first 20 minutes of practice we had the shoes previously taken off his feet and thrown at me back on, along with socks and had made our way back outside.

Allison was in the van, I took my place in my seat fairly convinced this would go well.  About 10 minutes and several swings at me later he was in his seat and agreed to close the door.  I exhaled feeling victorious and confident that having made it this far, we'd obviously make it in for the end of practice.  That was my goal, knowing damn well that if he didn't go inside, he had won and Thursday would be a repeat of tonight's battle. With "Old Time Rock and Roll" playing I backed out of the drive as I heard the familiar tapping of drumsticks on my headrest. That's when he noticed he left the front door open.  "Stop" he yelled out while a hand reached up from the back seat connecting with the side of my head.  "Parker!" I said back in my deep and not at all happy, you've pushed me too far voice.  "You do NOT hit mom. Not at all. I am DONE." Almost a full hour into this battle, I was done.  "The door is open" he yelled at me.  "It's FINE" I replied telling him the neighbor's would close it and driving away.

As texts came in checking on us, I asked him if he wanted to make the call I had promised to Dan as a reward for getting in the van.  He did not.  He was focused on the door being open at home.  I was focused on how I would get into the school where is practice was to get his papers of information on Friday's games. I replied simply to the text asking me to call "I can't".  I couldn't. It wasn't about Parker, it was about me.

Disappointment had filled every ounce of me for snapping at Parker, for not going back to shut the door out of fear that he'd get out and we'd be still at home, for not getting him to practice, for the time change winning.  While I knew he wouldn't get out and go into practice, I was still determined to make it to the school to get his paper.  I was fighting back tears, knowing I still had to walk into the school composed to get his papers and explain why he wasn't at practice. I knew the voice on the other end of the phone would instantly bring Parker to a better place, it always instantly did. It's also the voice that's become my safety net, the voice I can't hold it together for, the voice who wouldn't listen when I said, "I can't" and instantly called.

After finally getting the phone switched over to blue tooth we were at the school. I left the phone and kids in the car to carry on their conversation that was switching over to laughter while I fought with every exhausted bit left in me to pull myself together, walk in and get the information that was needed convincing myself I had this under control.

This... THIS should be the easy part.  Post meltdown. No flying fists to block. No one spitting at me. No kicking. No headbutting. No throwing.  Just hugs, laughter and endless "I'm sorry"s.  THIS should be the part where it's easier, not harder.  Yet it's always the hardest part.  While he's moved on and we've made it through, emotionally and often physically, I am drained. Smiling, hiding a tear stained face and pretending like everything is great takes an incredible amount of energy.

With a deep breath exhaled, I walked into the cafeteria to ask for his papers and explain why he was not at practice.  An incredibly difficult task, I'd like to believe I often pull off well... tonight I completely failed at. Making it passed the first two questions of "Have you been crying?" and "are you alright" with simple quick answers there was no keeping the tears back when I needed to explain where he was.

It feels so silly.  He's healthy.  He's in my eyesight.  He's ok now.  So very much to be thankful for.  Yet, tears of exhaustion, defeat and frustration quietly fell and there was nothing I could do except say "It's not dark yet.  Practice doesn't start until it's dark."  Words that the coach's wife very well understood as she walked me to the door.

As I got back in the van, the conversation continued on the phone.  Reassurance that Thursday Parker will go to practice without any problems, that these things happen and most of all that Parker is loved and very much believed in wrapped up the call before the endless laughter and giggles of the goodbyes.

Home again it wasn't long before he was in bed.  Meltdowns take a lot out of all of us. As he settled into his room to watch TV, Allison and I wrapped up her homework.  Sitting together at the table the conversation went from her incredible music score test to the words I am sure she thinks often even though I rarely, if ever, recall her saying: "Mom, sometimes I wonder what Parker would be like if he didn't have Fragile X.'

I couldn't even look at her. My heart ached as tears simply streamed down my face as I reached over to run my hands along her hair finally saying "Me too, princess, me too."

We returned to her school work, focusing on spelling.  Panacea, another word for cure, is one of her words this week.  She looked at me with her big blue eyes and said, "If I were a wizard, I'd create a panacea for fragile x."  A huge smile covered my face, looking directly at her I simply and honestly said, "There is no doubt in my mind you could do it, wizard or mortal, you have that power."

Over the next week... possibly two... we will once again adjust to the sun staying out longer, eventually still being out when it's time for bed.  In the blink of our eyes fall will be here and I'll be explaining why it's dark so early once again.  Likely as a reminder, I guess, that some things are simply out of my control but we will still survive.