In two weeks we will be in Boston. Again. This will be the 5th trip for Claire and I; the 3rd for Jared and Chloe. I’m not sure how our thin California blood will fare in the cold or what we will do to keep Chloe entertained. Don’t get me wrong, we love Boston, but I sorta wish we were indulging Chloe’s dream of meeting Hope and Winter down in Florida instead.
Last round we suspected that Claire was on the drug. Which means that this round will be injections twice a day for 20 weeks of a placebo. They have to measure both sides to tell the whole story. We knew that this would happen when we signed up, it just wasn’t as real as it feels right now.
Here’s the thing that is keeping me going right now, why I am happy to travel to Boston 3 more times, give all those shots, for a placebo:
In researching Rett syndrome, all the data points are platinum.
When you are learning, there is no failure, there is no data that is invaluable. It’s all an improvement when you know more than you started. In the history of the world, research for Rett syndrome is just starting. Any way that teams go about and study Rett syndrome we as a community are gaining traction. When we first signed up for the IGF-1 trial it wasn’t because I believed that it could help Claire, it was because I wanted to help pave the way for whatever will eventually help Claire and her friends that are limited by Rett syndrome.
It’s easy to want to speed past the learning stage and just get there already. We were all ready for a cure yesterday. I don’t want to do the hard part, the hustle. I don’t want it to hurt, I don’t want it to fail.
Then I remember what we have already done. That Claire at the age of 9 has contributed more to change the world than most people my age. I am reminded about all that I have learned is possible in this process. This has become bigger than a cure for Rett.
As we go I am finding that living outside the bounds of what I thought was possible is where the best stuff is. We are learning about the kindness and generosity of strangers. Rettland is already changing for the better, before any official announcements can be made about it.