You Never Know

Claire's 1st birthday, October 2006
Claire’s 1st birthday, October 2006

One of the things that I have slowly been learning about Rett Syndrome is that you just never know. When Claire was born a beautiful healthy little baby girl we never would have guessed that a year and a half later she’d stop hitting milestones. When we got our diagnosis I had no idea the levels of highs and lows that were ahead of us. When I have been ready to throw in the towel and quit Claire suddenly does something amazing that I never thought she’d be able to do. The only thing that is constant in rettland is that you never know what is around the corner. Yesterday I had a horrible day. Grief struck me as I was reminded of a visit with a neurologist shortly after Claire had been diagnosed. I had all I could do to get myself together to go pick up Claire from school and take her to physical therapy. Once we were at pt she had a huge seizure and then another one once we were home. This morning I was exhausted and wanted to crawl back into bed as soon as I had gotten up. I was guarded, watching for Claire’s brain to short circuit. She was fine and we went on with the day. After I finished my coffee I listened to the voicemail that had come in, it was somebody calling about Claire’s application for the trial. I called back, expecting to get a list of what I had forgotten to include. However the friendly voice on the other end told me that it looked like Claire was a good fit for the trial and that once they were able to schedule for the intake appointment we would be contacted again. Yes, I went from helpless, seizures, exhausted to about to enroll in a trial that could shed light on how to treat rett syndrome. Yes, we might be part of the solution. In October 2007 we were told that our daughter had Rett Syndrome and that there wasn’t much that could be done other than physical therapy and maybe Make a Wish would be a good idea. Here I am 5 years later and we’ve been invited to Boston, to participate in a trial for a drug to help alleviate some of the struggle of living with Rett Syndrome. Doctors and researchers are working together and getting closer, new studies are coming out. The picture for life with Rett Syndrome looks different than it did just 5 years ago. I know that I have no clue about what is on the road ahead of us and right now, I’m alright with that because what’s happening today is better than anything I had ever dreamed.

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