I'll stand by you... Will YOU make the promise?

Just a heads up... I'm going to ask you to make me a promise...

If I were to make a list of things in life that make me struggle, undoubtedly you would find on it:
1. Not having control
2. The unknown
3. Not being able to fix something

Especially #3, not being able to fix something.  Right now, many of us in the Fragile X Community, including friends outside of the Fragile X world,  have come together doing everything we can think of  to try to fix the problem that has been laid before us with the termination of the STX209/Arbaclofen extension.  While I pray and fight so that we can fix this, I also am preparing for that possibility that it might not to happen.  I've never been one to bury my head in the sand, I have to face what could be ahead.

I don't know what's going to happen when Parker & Allison start to come off this drug.  For Allison, I don't anticipate many changes and I believe we have more options to help her with her anxiety.  For Parker, I just don't know.  The changes in him have been so significant, so huge...I just can't image him being able to hold onto all of them without the help of this drug.  I'm praying he does but I just don't know.

I wish I could say I've been strong and confident through all of this but I haven't.  Despite my efforts to contact anyone who will listen and determination not to give up, while I fight -  I feel paralyzed with fear and heartache.  Each time I look up, all I see is his bright blue eyes. Those incredible eyes that look to me for answers and guidance, with trust and confidence.  Those eyes that believe in me. 

My mind wanders to all of the places we have yet to go, the things we want to do, to see, to experience, all of those things he has done that we never imagined possible and I wonder what will happen to that list.

My ears hear the incredible sound of his voice, the laughter that fills the house, the football picks we go through each week, the answers to my questions and I wonder what will happen to that voice.

My arms feel the gentle touch of his hand as he reaches for me, the squeezy hugs I get each day, the tenderness of his head on my shoulder as he laughs and I wonder what will happen to the soft touch he has gained.

I can't help but think of the look of confusion, the feel of frustration he will have when things start to change.  When he can no longer be who he is now.

I wish I had the answers.  I wish I could tell everyone in Parker's life what to expect.  I wish I could tell every family who's loved one is on this medication and about to be in my position of weaning their child off what will happen.  I wish I could tell you it's ok, not to worry that the progress made will not be lost.  I wish I could provide the funding so you didn't have to go through this.  I wish people knew life is hard enough raising a child(ren) with Fragile X without this being added to the plate.  I wish, I wish I could do something more than I already am.  Something I felt would bring peace and comfort to all of us right now.  I wish I could. 

While I take appreciation in the fact and am so extremely grateful for the fact that I still physically have him here with me, I ache and curse what I could witness as the Parker I know is taken from me with each lower dose until there is no more of this drug available for him.  No parent should ever have to watch that. No one should ever have to experience what so many kids like Parker may go through next.  Can you even stop to imagine that?  To look at your child and watch them no longer be able to communicate with you?  To be filled with frustration and anger where happiness and involvement once was?  Knowing you had a pill in your hand  just days ago that could give him his voice and happiness back?  Instead that's been taken and all you can do is watch...and wait to see how his body will react without this medication.  No one should have to do that.  Not ever.

The only thing I have control of at this moment is how much I love him, preparing those who care for him as to what we might see, and holding them to a promise to stand by him as we get through this.

While I was in the store today "I'll Stand By You" by the Pretenders came on.  I cried as every word rang true to me and I knew the promise I needed to ask of Parker's friends...

"I'll Stand By You"

Oh, why you look so sad?
Tears are in your eyes
Come on and come to me now
Don't be ashamed to cry
Let me see you through
'cause I've seen the dark side too
When the night falls on you
You don't know what to do
Nothing you confess
Could make me love you less

I'll stand by you
I'll stand by you
Won't let nobody hurt you
I'll stand by you

So if you're mad, get mad
Don't hold it all inside
Come on and talk to me now
Hey, what you got to hide?
I get angry too
Well I'm a lot like you
When you're standing at the crossroads
And don't know which path to choose
Let me come along
'cause even if you're wrong

I'll stand by you
I'll stand by you
Won't let nobody hurt you
I'll stand by you
Take me in, into your darkest hour
And I'll never desert you
I'll stand by you

And when...
When the night falls on you, baby
You're feeling all alone
You won't be on your own

I'll stand by you
I'll stand by you
Won't let nobody hurt you

I'll stand by you
Take me in, into your darkest hour
And I'll never desert you
I'll stand by you
I'll stand by you
Won't let nobody hurt you
I'll stand by you
Won't let nobody hurt you
I'll stand by you

We don't know what is ahead for Parker.  We don't know what he will lose and what he will keep.  The promise I need from each of you, whether you are his friend from school, the community, a parent of a friend, a relative - in whatever way you are connected to him... I need you to promise, you will stand by him.  In his darkest hour.  That you'll never desert him.  You'll never let anyone hurt him.  That you will always stand by him.

 My love for my children grows stronger with each second that passes.  I am their mom.  I will always stand by them.  I will always fight for them.  I will always be by their side.  Proudly.  Nothing can change that, no matter what is thrown at us. I need to know, you will too.

I know, with time, we will get through this.  I know there are new drugs in trial that I've heard are even better. I know Seaside will still push for FDA approval if the results being analyzed are good.  I know there is a chance the incredible group of FX families will pull off a miracle and save the extension.  I know, with time, whichever of those it is...we will be ok again.  But between now and then, I need to know - you'll stand by him.  I can't promise you it will be easy.  I can't promise you it will be fun.  But I can promise you we will, eventually, make it.  Just promise me you'll weather the storm with us.  He needs you, even when he can't say it, he needs you.... so do I.

Will you make the promise?  Will you stand by him?





To learn more about the termination of the STX209/Arbaclofen extension from Seaside, please visit the National Fragile X Foundation's Open letter with FAQ on this subject.

Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of autism.  Learn more about Fragile X and all of the Fragile X Associated disorders from the National Fragile X Foundation at www.fragilex.org