It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first diagnosed. We were given paperwork for a disabled parking permit and Make A Wish and sent home. All the doctors and specialist that filled the schedule while we searched for the answer were suddenly a thing of the past. Everyone knew that there was nothing that they could do for us.
When we enrolled in the trial part of the appeal was in getting to go back to a place where there were doctors that were trying to help. I’ve been nervous to step back outside of that as we wrap up this process. There is an odd comfort that comes from being involved with medical professionals. It’s a false comfort as they weren’t actually treating Claire, but it felt good.
I wish I could better describe the last 10 days or better yet, what we’ve experienced over the last year and a half. All I can come up with is that I’ve changed. Claire’s changed. Jared and Chloe have to. We got to try to do something to help Claire. Three years ago, that option wasn’t on the table.
Today we are on our long journey home from the hospital. Claire is peaceful and proud of what she’s done. Seven years ago we would have never dreamed that she would be able to do anything for herself, much less be part of changing the course for Rett syndrome. Until we started the trial we only knew a Rett syndrome that took.
Today I see the potential for a life with Rett that can get better. The game is changing. I’m not sure what to do with that, other than to keep dreaming. This has been hard but it’s not time to give up. Not yet.