Friday, December 21, 2012

Dear Fragile X, I want my son back.

Dear Fragile X,

I want my son back.  The beautiful, handsome, LOVING, boy who is filled with laughter, words and hugs that you so often take away from me.  Of all days, you would pick this one to pull him away from me.  This day, when I will spend my lunch hour with the attention of over 200 of his peers talking to them about Fragile X - his entire 8th grade class - you remind me that you still hold the tightest grip on him.

I know, I know, it's that time of year.  And while every child anxiously awaits Christmas, my son does so filled with anxiety.  Anxiety over some things I am aware of: Santa will be here - in his house, while he sleeps; only a handful of days left of school - each one following our schedule less than the previous; the upcoming visits to relatives houses - with conversation, hugs, lots of unusual smells (food, not people), presents and commotion; and snow - will it or won't it come.  I'm aware of these things - I prepare for them, I am ready to help him through.  We have count down schedules, frequent contact with teachers, reminders that we can do something quiet away from everyone at Grandma/Great Grandma's house, daily weather updates... The things I can help with and control - I do.

Then there are the things I just can't predict, or should have known but overlooked (Yes, I do that); the 60+ mph winds that would rip one of his favorite inflatables from the yard despite being buried under snow and ice and destroy it, the boots that fit perfectly a month ago when we tried them on - now too small for his constantly growing feet, the doors on the van frozen shut despite it being in the garage... none predicted, all catastrophic to my little guy.

This morning that started out so awesome - the elves made snowmen in our freezer!!, the kitten was extra cuddly during Power Rangers before breakfast, it is the last day of school before break, everything was good until we discovered the great big snowman out front was destroyed.  And the stress over that did what stress and anxiety does to Parker - it took away his words.  I could see as we were working through our list of solutions (we do have more inflatables) that with each passing minute - despite the deep pressure and hugs, he was withdrawing more and more.  Then he stopped.  He stopped talking altogether.  Instead of words there were screams, pointing and pure frustration.  The problem was, it wasn't about the inflatables anymore - what was it?  10 minutes later he came through for me with "Boots".  Ah yes - he wanted to wear his boots! Of course he did - there IS snow on the ground.  No problem, we can still make it to school on time.  Or so we thought.  It turns out the boots are now just too small enough that our feet won't go in.  I offer to run to the store - we still have time - but it's too late.  His processing, his thinking, his reasoning - it's gone.  It will be a fight with me and this syndrome that prisons him to get it back.  We talk about the schedule, we do deep pressure, I continue with my soft sing songy voice  - he continues to slip.  Allison brings me Sweetie, his kitten , he cries big ol alligator tears onto the top of her head as he gives her kisses and holds her close.  Just as I think I'm getting him back, I realize as puts the cat down and grabs my hair - he's not back yet, we have a ways to go.  Allison is watching the clock, not saying a word but beginning to pace.  My princess who loves school doesn't want to be a minute late - and I don't want her to be either.  With my hair in his hand, I lean in close - hold him tight and think, there has to be something.  I sniff loudly and start to lightly cough... "Who's pitters do I smell?"  I asked - I feel my hair falling back to my my face and his body relax as he laughs.  I found our out.  I will win this.  I will get my son back.  We agree on tennis shoes, we put on extra deodorant (he won't need any for a week now), start the van, put on coats and out we go to the garage - happy, laughing, ready - only to discover Allison's door is frozen shut.  We make it through that unexpected moment, I walk through his schedule on the drive to school.  We are later than normal but... we are ok.  Everything was on track until - somehow on the 2 minute drive to school his door froze shut.  And that was his final straw.

The next 5 minutes felt like 20 as I ended up climbing over the seats and in the backseat sitting with him, holding him tight to prevent him from pulling out more of my hair, hitting, headbutting or biting me.  I know he's gone.  I know hyperarousal has taken over.  You, fragile x, have once again taken my son.  I'm tired.  I'm angry.  I'm feeling the clock tick as Allison sits patiently through all of this.  His teacher finally gets the door open but I know I can't yet let go.  He's not ready.  His body is still fighting.  I feel his teacher and para holding his hands and talking through the deep pressure they are doing with joint compressions.  They, also with that sing songy voice, are working with me as a team to bring him back.  As I feel his body begin to relax, I whisper "Are you ready to give Mrs. Reavis a hug?"  We all 3 know he can't happily hop out of the car and be ok.  This is our test to know who is winning this battle.  He doesn't talk but lifts his arms to her. Nice arms that want hugs.  I let go and undo his seatbelt.  He holds her tight and I wait for her to give the next direction.  She says, "Can you give mom a hug and tell her you are sorry.  She needs to know you are ok."  I know by her words she has felt his body relax.  Through the silence I lean in and say, "How about just a hug first?"  I watch cautiously as his arms lift - this will be telling, either they will hit me or hug me - they hug me and his words are heard next.  Not "I'm sorry mom" like requested but instead, "I love you mom." followed by a tight squeeze and an ornery lick to my cheek. 

We won.  We got him back.  I know his day will be a struggle but with the great team, he'll make it.  I dropped Allison off to school 1 minute late.  The principal was at the door and said, "No tardy's today it's my Christmas present to you!"  She had no way to know what we just went through.  I said, "We appreciate that, big brother had a very rough morning and Allison could use some extra love and hugs today."  She understood and promised she would.

Parker has come so far since the start of the STX209/Arbacolfen trial in August of 2009.  This drug has given him so much life and I don't ever want to be without it - but it's not a cure.  It doesn't overcome everything.   For everyone who thinks giving a pill or medicating our children is the answer and so simple - timing, dosage, interaction with other medications - it's everything.  You wouldn't think 15 minutes would make a difference in a delayed dose - but it can and it does.  And there is so much more to you, Fragile X, than what this one pill (or the combination of them that Parker is on) can do alone.  It's all has to work with therapy, behavioral interventions, a team on the same page... persistence.

While I am very thankful and appreciative for the many people and opportunities that you have brought into my life - right now, I really hate you.  I hate that you have taken my son away - again.  I hate that each day is a new battle, not just for Parker but for Allison too.

Today, you don't make me weaker by this battle.  You make me stronger.  More determined.  More focused on the work I do. More determined to write.  And more prepared for the 200+ 8th graders I will talk with later today. 

You, Fragile X, may win little moments of time ... but we will win this overall battle.  As Parker would say, "Mark my words."

Sincerely,

One very broken hearted but extremely determined Momma


To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.

10 comments:

  1. For every tear you shed, I shed with you. For every cringe, every pause, every sigh....you are not alone. Every other Mom of a Fragile X kid is with you. Sharing your journey and lifting you up. Tomorrow is a new day. We shall all prevail and survive. Here's to looking forward to December 26th!!!

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    1. Thank you so much Mrs. Rogers, I love that you are always a phone call/text/keystroke away. Thank you for being such an inspiration and rock in my life!

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  2. Oh Holly, this is such a powerful post. I admire your love and courage and determination. We hate Fragile X too!

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    1. Thank you so much Kristin, I appreciate that! Thank you for your understanding and relating to the post!

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  3. Am right with you Holly, & like I said to someone else last week, we've all got too allow ourselves these days so we can continue to move forward and fight, this is what drives us. You are an absolute inspiration & your babies are both beautiful xxx

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    1. Thank you Sam! I agree, it is these moments that drive us. Thank you for all of your kind words! xoxo

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  4. Days like that are tough and sound very familiar. I am jealous ( but happy of course) you get to hear words. We too try and make Jake laugh to come back from the ovrrstimulating moments. It does work most times. Hang tough for the holidays girl....and i know what ur saying about hating fx. Sometimes but def not always :)

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    1. I hope one day, Megan, that you get to hear Jake's words. I waited a very long time to hear Parker's. It is worth the wait! Wishing you the happiest of holidays - friends like you are definitely one of the reasons I'm also thankful for FX :-)

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