When life gives you Rett

It’s surreal. Since school finished on Thursday we went to a fundraiser in Santa Barbara and to see some doctors in Boston. It was a big first week of “summer vacation”. I have often struggled with the whole “summer” situation. When you are still spoon-feeding your child that can’t play on her own, vacation isn’t exactly what it feels like to not have school. Fact of the matter is that I don’t see a lot of vacation in my future but what we do have is something different and very special.

It never really occurred to me until today that families often take vacation during the months that school is out. It wasn’t until a cab driver asked about our vacation plans that I had this realization. Then I looked around and noticed that a lot of people were in Boston just for the fun of it. It never crossed my mind to go there just for fun.

We started visiting Boston not because it was close or easy but because that is where the researchers are. Along the way we have decided to make the best of it. After all, if life gives you Rett, enroll in a trial and have fun with it, right? We had 48 hours in Boston this round. No time for sight seeing but we managed to get plenty of laughs and a tiny bit of rest.

I am just so thankful to everyone out there cheering us on. This isn’t easy but I couldn’t imagine not doing it. It has been the craziest, most draining and rewarding experience yet in my life. Here are a few highlights, it wasn’t a vacation but many great memories were made and I am happy to take that.

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First miracle of the trip, Claire stood, in the corner of the bathroom for longer than she has stood unassisted in a very long time.
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Claire charmed her way into a fancy room at the hotel complete with a patio overlooking the river.
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It was a long 3 hours of autonomic recording but she was a trooper and was happy when it was over.
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We managed a few minutes out in the warm humid weather. It wasn’t the June gloom we are used to but it was beautiful while we could tolerate it.
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Claire had to wear motion sensors which she eventually got off when I wasn’t looking.
Since we couldn’t get a rental we used Uber and Claire loved feeling like a super star in the big black car.
Dr. Dan takes such good care of us! I am learning a ton about the brain from him and he loves Claire so dearly.
Dr. Dan takes such good care of us! I am learning a ton about the brain from him and he loves Claire so dearly.
Natalie and Grace were fun to see as always. These lovely ladies do a lot to make this study work and we are grateful for them.
Eventually the seizures got to her. Luckily it was while we were killing time in a rocking chair. Still could have done without it.
Donuts for dinner is our new favorite tradition on these long days. Everyone should find an excuse for a tradition like this.
Silly tired and on a sugar high we headed home.

It wasn’t a typical vacation but nothing we do is typical these days. It was a very exciting start to summer. I wouldn’t have chosen to take a whirlwind trip across the country but we did and I would be lying if I didn’t tell you it was fun. The highs were so high the lows weren’t too bad and I’m grateful to be walking away from this round with my head still high and a smile on my face.

4 thoughts on “When life gives you Rett

  1. Here I am, balling over the picture of Claire STANDING in the airplane potty! I know this is so hard, but praying it will be so, so worth it – and you will have many more moments like these! xoxo

  2. It’s amazing to see all the grace given to you with the way you are teaching Claire how to enjoy life. You are the perfect mother for her. I love you 🙂

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