It was three years ago today that I did the single scariest thing in my life so far. Claire and I flew to Boston for 24 hours to apply to …
Game Changer
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 …
Boston Doesn’t Suck but Rett Syndrome Does
I really wanted to beat Rett syndrome. I wanted to out plan it. I didn’t realize it at the start but I feel confident saying that as I look back. …
Miracle Drug
I’ve been thinking a lot about how much I don’t want to go to Boston lately. In fact, I’ve decided I don’t like trips longer than 5 days. I’ve also …
Balance
Balance is hard. I believe it always will be. Right now part of my struggle is living in a place that fully accepts and embraces Claire for who she is …
No Safe Adventures
Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having …
Numb
We have been away for almost a week. There have been ups and downs. At the start things were fairly smooth. With time, they got rougher. Claire’s eagerness to be …