From Trail to a Texas Trial It's a Wonderful Life 24 Dec 2014 As...

From Trail to a Texas Trial

It's a Wonderful Life
24 Dec 2014

As I reflect upon this last year, it’s been almost one full year since we returned from Texas, I wonder, “how can it be a whole year already?!” It still seems like yesterday. A blink. But, a year it’s been. And so, as I think about this year, I can’t help but be a little introspective.

Here we are on the brink. I imagine, as we all face the dawning of the New Year, every Rett parent is facing their own internal ponderings-will it work? Will it come too late? My daughter is old, should she get it now? Now, when all her life has been this way? What will THAT do? So many decisions facing all of us in our unique worlds. For me, it’s will she talk soon enough… soon enough to make a choice that will make all the difference.
And Neuren…. what can I say? They stand on the brink, too. Can you imagine? Being the people who save so many? I wonder if that brings the feeling of, “but we could’ve saved more” when the wheels of FDA approval seem to move so slowly. I hope not. I hope they know that those of us waiting, not just Rett parents, but Fragile X, Autism, Traumatic Brain Injury families, we’re just all so grateful for the Hope.