I am sitting on an airplane headed home again and overwhelmed by just how awesome the last few days of our trip went. Our time away at Cape Cod was really good. It took a full two days for the adrenaline of the last few weeks to subside a little and I began to feel human again. Chloe turned the corner just in time and we were spared a trip to urgent care which was a great way to start the week. As we drove back to Boston Claire beamed with excitement. She was ready to get back to the business of clinical trials and world changing.
Our new hotel couldn’t have been more amazing. At check in they upgraded us to a beautiful view and added a bunch of stuff to make our stay more comfortable, just because. After sleeping in a bit and a lovely breakfast we were off to share our new world with Jared and Chloe, it was really exciting. Jared was amazed by how people drive in Boston and how well I manage it. Chloe had a million questions about everything and Claire was so calm, so happy to have us all together, trekking off to do what we can to make life with Rett Syndrome a little better. I enjoyed just how easy it all is when we are all together, a complete team makes such a difference.
Chloe watched Claire get hooked up and get to the important business of watching movies while monitored. It was so relaxed and natural, to all be in a little room, watching a movie with wires all over Claire and several cameras. I suppose it could be sad that we spend that much time in doctors offices but it is just so awesome that we all enjoy doing it together, it’s a gift that I treasure for now. At the break Claire took Chloe upstairs to get her going on her test. She loved watching her little sister bravely get set up and educate all the researchers about the Pirate Fairies. Chloe did so well, I just can’t say how proud of her I am for choosing to be as involved as she is. After the days data had been gathered we headed out on the town for a little adventure. Claire and I had been wanting to see the finish line from the marathon. As we walked up to it I nearly lost my breath. My friends were part of Team Rett last year and they didn’t get to cross that finish line. Much like they didn’t get to see their daughters blow out their own candles on their 3rd birthday cake. Something that seemed so certain and taken away so suddenly. Yet, soon they are coming back. This year they have raised far more money and awareness as they come back stronger. And there I stood, at that finish line, with Claire, the day before we start what might be treatment for Rett Syndrome. A treatment that might allow Claire to blow out her own candles, with her own breathe. There is something really special about not getting to finish and going back, in a way I feel like this trial is a bit like that for us. Chloe was exhausted so we went back to the hotel after that. Much to our surprise, just after we got to our room there was a knock at the door. The chef from breakfast sent up chocolate covered strawberries, an assortment of juices and some wine along with a lovely note. In about 15 seconds that simple gift transformed Chloe from an overtired and whiny 4.5 year into the most grateful, happy little human. It was amazing how the timing couldn’t have been better. That night we stayed low key at the hotel and tried to go to bed early before our big day that started at 8am at the hospital. I wasn’t really surprised when Claire woke up early this morning. She typically takes a little while to warm up but not today. Today she was ready to go, ready to be done with Rett Syndrome. We got ourselves together as quickly as we could, ate breakfast and headed over for “the big appointment”. There was lots of boring formalities and such but Claire had her game face on and was ready to go. She was done testing, she wanted to start the shots. She meant business. It all went well. We had a lot of laughs with the doctors as they asked us a million questions. Claire was weighed again and all of the papers were filled out with directions so we don’t screw it up. Eventually a really fun and smart nurse came in and walked me through giving Claire her first shot. Claire was fine, I nearly passed out. I hadn’t anticipated what it would be like to give her a shot like this, it was a thing, a very big thing. And once that was over we checked her blood sugar and headed out of town. The whole thing is just crazy awesome really. I am sitting on a plane somewhere over Colorado. I just gave Claire her second dose (yes, on the airplane) and now she is sleeping. Her body is calm so far from the spastic sleep she experienced on our last flight home. I don’t think it’s the medicine. I think that it is us fighting for her. Claire knows that we are not joking when we say we will do anything to get her better. There is a peace that has filled her body just from the process. It’s come from meeting several other families with Rett, from seeing the finish line and talking about all those that are running so that one day she car, from being with doctors and soaking in their words as they talk about the future of research and Rett Syndrome. It is all just so good or as Chloe has started to call it, Boston Awesome.