Up To The Mountain-again.

I struggled to come up with a title for this post and I struggled in deciding whether to write it or not. But, I challenged myself to be honest with both myself and others when I began this blog and so, if I cannot be honest during a difficult time what does the rest mean anyway.

Yesterday, Acadia came out with an update, including the information I have been waiting a very long time to know… the age cutoff for the Trofinetide trial.  It’s 20. My daughter is 25. Five years too old. Five years too old to talk this year. Five years too old to be calm this year. Five years too old to use her phone from Santa this year. Five years too old to tell me her dreams this year. Five years too old to be saved  from her prison of silence this year.

And I had a good long cry about that. Pure selfishness on my part, but I did. Then, I played Up to the Mountain by Kelly Clarkson, my go to song when there comes a moment I just feel so tired; tired of waiting, tired of wanting, tired of telling myself to hold on, tired of holding on. Because, if anything, Rett syndrome can make a parent tired.

And I play that song, because I have been so often to the mountaintop. I’ve been there and looked all around me and have seen that promised land; I had a glimpse, it was shining, it was green and peaceful and songbirds singing with my child’s voice flew through the air. And, even though being told five years too old is keeping that view still just a glimpse, I HAVE seen it and I KNOW it’s coming. Just because my child is five years too old, does not make that scene five years away. In truth, even though she won’t be the one bringing it closer THIS TIME, she DID bring it closer, once,and now there are others who will do it. And that’s on me to deal with.

So, I want to say that I am happy beyond measure for those who get to be part of this road, some of you have been on it already, so I can only guess at how excited you are. For those who get to be on it for the first time, wow, just wow. You have a miracle waiting for you. I had my little taste of magic and you’re going to get a BIGGER taste of it; I’m almost giddy for you, truly. I don’t begrudge any of you what your near future holds. All I ask is that you grab this chance, grab it quickly and hold on to it and get this trial done! Don’t cave into the distances you may have to travel, or the challenges of it all. Rett syndrome is a greater challenge than this chance, this chance is EVERYTHING and more of what you could hope for.

We’ve all been up to the mountain, been so tired that all we could do is lay us down, but then we get must get up because our children ask us to. May we all rise to this occasion, support each other, be happy for those who will be in this trial and thank them all for bringing Trofinetide and the view of wonder from the mountaintop so much closer.

Because of YOU all, the next thing I will tell my daughter about Trofinetide is that it has been approved. Thank you, Coleen, for that bit of wisdom.