Saturday, May 18, 2013

Sleep helps...right? The calming of the news of the STX209/Arbaclofen end

I tend to do a lot. I play with the kids a lot. I work a lot. I volunteer a lot.  I always have something (somethings) going on.  What I don't do a lot of is sleep.

Everyone asks, "How do you get so much done?"  My reply is always the same, "I just don't sleep"  And while many laugh at that, it's actually kinda true.  I tend to sleep around 4 -5 hours a night, which looking at it that way looks like a lot to me.  Seriously 4-5 HOURS.  That's a huge chunk of time in my life.  But everyone needs to sleep sometime, I guess.

To say the last couple of days has been a hurricane of emotions is an understatement. To discover the drug trial extension that has changed my children's' lives is over, terminated, immediately... honestly put me through ever emotion imaginable.

The last couple hurricane days turned into one exhausted mommy crashing on the couch at 8 pm last night.  With Parker sitting on my feet watching TV and Allison on the floor by my head with her iPad, I slept.  Parker woke me up when he was ready to go to bed.  Even at 14, it wouldn't be bedtime if I didn't tuck him in.  As I climbed the ladder on his loft bed, I asked him,  "Buddy, if you can't have your pills anymore, will you still talk to Mommy?"  Not that either of us knows that answer but his response was predictable and what I wanted to hear.  "Yes"  he said followed by "Take a shower, hot boys won't like you" (that's a whole different blog there, lol!)  I grinned, fighting back tears wondering if a month from now he'll still remind me to shower, put on deodorant, or brush my teeth so "hot boys will like me"

This morning, 12 hours after I slept very soundly - I also have a sense of peace.  For the first time since the news broke, there is a calm to me.

I am extremely thankful for the opportunity for both of my children to have been part of this incredible experience.  I have been very public about the incredible changes Parker has seen from this drug.  I have shared major success stories from both children, as they both have had major success -  "major" is measured differently and Parker's "major" changes have over-shined his sisters.

I am thankful to the dedicated team at Seaside Therapeutics. I have had the privilege of knowing many of them personally and their dedication to Fragile X is incredible.  I am thankful to the donor that provided millions of dollars to get us this far. I am thankful they are analyzing the data from Phase 2 and Phase 3, and hopeful the results will be good enough for FDA approval.

I'm still angry that the extension ended so abruptly. I think that was crappy.  I don't think they had control over that either, it's not like them to do something so fast. So I try not to be too angry over it.

 I am amazed and in complete awe of the people who have contacted me, shared my story and reached out offering to help. I am proud of all of the Fragile X families who's worlds have been shook, just like mine - and are using their voice to tell their story.

This isn't just about Parker and's about an entire Fragile X Community.

I have seen everything from blogs: (you can click on them to read their story!)
*I am sure there are many more, these are the ones I am aware of as I type this.  I would be happy to add more, I do not want to overlook anyone, please feel free to add them in the comments!*

 To groups coming to our support:
Over 493 shares from the blog photo they created!

 To Petitions created:

To TV stories:

I have received more email messages, comments, tags and twitter messages than I can keep up with (although I am trying!)  I cannot even begin to express how grateful I am for the support of my friends, community and complete strangers  - I am so thankful for each of you!

We are hopeful.  We are trying.  No matter what the end result brings, we have raised awareness for this disability that impacts all of our lives.  We have come together with our communities, locally and online.  We are not giving up...we are aware we may not win this battle, but we won't walk away without a fight either.

Yes, there is a calm to me today.  A peace in knowing thousands of people are by my side.  No matter the result, I won't face it alone.

Thank you all.

Fragile X Syndrome is the leading cause of intellectual disability and the leading known genetic cause of autism.  To learn more, please visit the National Fragile X Foundation's Website at

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