Monday, December 19, 2011

Hope with me

Well Hayden is officially as of today in the STX-209 trial. Nope this is not an audition for a new robot on star wars. This is the drug study for Fragile X. Hayden has entered phase one as of 2pm this afternoon. He is enrolled in a double blind study. Meaning he could get the actual medication or he could get a placebo. But here is the really SUPER part after 8 weeks in the trial he will be guaranteed the real medication. Even if he didn't get it during the trial. So I shall wait patiently for 8 weeks. I just laughed as I typed that. As we were walking out of the doctor's office Mike says to me. "Now don't get your hopes up and let's not look for things that are not there". Um okay honey cause you know that's just how I am. Yeah right...I will analyze everything my little man does to see if anything is improving, changing or developing. Yep that's how I roll. Not even gonna pretend.

So we are holding on to this crazy HOPE that this will be the miracle that helps Hayden. Is it wrong of me to say this...maybe. Does it make me a bad mommy? Maybe to some people. Walk in my shoe's. Spend a day in my life...the unknown...the future. The agony of not knowing what his life will hold. Do I dwell on this...nope. I CAN"T, I WON'T. I've learned it helps nobody. Not Hayden, not my family, not my friends and especially not me. I refuse to do it (well not for very long anyway). It's taken a lot of practice but I have learned how to embrace the here and now. I again with much practice have learned how to snap myself out of a down word spiral of things I can't control. I can't control the future. I can try to shape it by making sure he has what he needs to help him succeed to the best of his ability. With great schools and therapy. I can help shape it by being his mommy, therapist, teacher, friend and did I say mommy?

So as our family heads off into this new adventure. Wait patiently with me...blah, blah, blah. Hope with me that Hayden is on the actual medication!! Yep I said it and I am not taking it back. Hope with me that this will help give back some of what the lack of protein has taken from him. Say a prayer that this IS what we so hope it will be. Say a prayer for all of the other families that are holding on to hope along with us that this medication is what we all hope it will be for our little ones.

Love,
Tina

4 comments:

Rachelle said...

My best to you! May the next 8 weeks bring you strength (and changes). But, if it doesn't, we'll still have the Hayden we all fell in love with! Love you!! I hope it all works out for you guys :)

normalcyattempted said...

Right there with you hon!!

Turtles Mom said...

Thank you both! It is so nice to know that we are not alone and that many families are right there with us!

Amy Z. said...

for some reason my comment from before isn't here... so want you to know that we are with you, hoping, hoping, hoping!!! hugs to you all!!!!