Why I think Rett Syndrome Sucks

As I sit down to write tonight the question in my head isn’t how did Rett Syndrome affect my life today, it’s where do I start. Thank you for bearing with me as I try to get to my point.

This is a really exciting weekend in rettland. A documentary was being filmed about research, I got to go up and volunteer at the natural history study and see many of our extended family and tomorrow is the 3rd annual NorCal stroll and I made our team capes. So much fun! I spent the bulk of my day catching up with some families that I haven’t seen in a while and love so much. I got to meet some new people and a few of them told me that they read my blog, so humbled, really it means so much to me. After a full afternoon of fun at the study I had intended to go home. I however stink at directions and got on the wrong freeway and I ended up at the hotel where the family get together was so I stayed and got to hear Dr. Steve Kaminsky give an update on the three larger trials as well as answering questions and discussing the overall big picture for research to help fix Rett syndrome. Just before the talk started I heard from Jared that Claire was experiencing some weird stuff that started with her holding her breath and gagging, I could hear that he was worried even though he assured me that it was fine. So I stayed for the talk and am I ever glad I did. It was amazing! There are real people, very smart ones, that are doing everything in their power to get some help to the children and families affected by rett. It was surreal to sit and listen to him explain the biology behind what is going on in the brain with rett and actually understand most of it. Oddly and not surprising, it really explains why Claire experiences what she does. It makes more sense than ever why she has such crazy brainstorming on good days at school when she learns a ton. I hate it that we have to slow our selves down when Claire is loving learning but the truth is that her brain can’t handle it.  I left the meeting feeling fired up and ready to do everything in my power to fund raise and support all of the efforts that are taking place. I left encouraged that there is a real chance that in a few years there could be a medicine that might help. Dr. Kaminsky even discussed what they are doing to begin to start a rehabilitative program, they think this is a need, amazing! I called Jared to share my enthusiasm as I got on the correct freeway and headed home. We only spoke for a moment before he had to hang up because Claire was vomiting, again. My drive home was just over and hour and I came in to find Jared, holding Claire over the toilet, her pj’s cover in vomit. I gave her a bath while he changed the sheets. I talked to her and tried to calm her down. After an hour of brief moments of dystonia, gagging and vomiting, it got bad enough and we had to give her diastat. It was heart breaking to go from listening to a doctor discuss how he thinks he can help what I perceive to be our biggest problem to looking at it straight in the face, tonight it was holding Claire hostage as well as Jared and I. Here is the part that makes it worse, I am pretty sure she was just excited. We’ve never had a team for the strollathon. We’ve never made our our shirts much less awesome capes. I am so mad that her body can’t let her just enjoy the excitement and now I understand why but it still sucks. I guess that is the point to todays story, even though it brings some of the greatest people in the world into your life, rett syndrome sucks.

3 thoughts on “Why I think Rett Syndrome Sucks

  1. oh man. im sorry you had to come home to that. I bet she is just pumped. cant wait to see you all tomorrow! thanks so much for being there today!

  2. mj says:

    you know what sucks for me today? that i wasn't with you guys at the strollathon and team leah bean talking with you about how much rett syndrome sucks. that sucks.

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