What a ride. We had a blast over the weekend. It was a 5 hour drive each way but worth every minute to be with our tribe, the crazy ones. Chris and Megan had people sleeping in every corner of their home. Erica and her husband drove longer than we did and hit every circumstance possible. They knew that they would be getting there just as it wrapped up but that didn’t stop them from showing up. Even though it was only his 5th time paddling, Jared paddled the whole 9 miles. He and Eric, another Rett Dad in a kayak, were in an hour after everyone else. The boats kept asking if they wanted to be picked up but they pushed, because we are the crazy ones. There are so many more examples, each of the families journeying to the trials, the families holding fundraisers, those out there advocating and being in their communities, it is all against the odds and they keep doing it over and over because we are a special kind of crazy.
That is the crazy that has changed the landscape in Rettland so quickly. I still can’t believe that in less than 15 years researchers found the gene, figured a plan to try a fix it in mice and moved to clinical trials. That is CRAZY!!! When we were diagnosed in 2007 we were referred to Make A Wish and now, I am sitting on a plane, headed to a hospital where they have all sorts of ways they are working on attacking the problem.
You may wonder, why so crazy? Why is it that so many of the families living in Rettland have lost there minds. I don’t know for sure but my guess is it’s the eyes more than it is the water. It’s the girls eyes. There is something about the look that your daughter gives you as she slips out of her body in the regression. There is something about the piercing, silent love that the girls convey. If you slow down enough to look, you can’t help but be changed. After meeting one of the girls where they are, you just can’t be sane. Parents, friends, loved ones, anyone who has ever met them, it changes you. I am so glad to be on the crazy side with all of these fabulous people. I am so glad that I am crazy enough to take Claire to Boston for 48 hours. I am thankful to her for exposing the flaw in sanity, I never knew how much it lacked.