It’s been an odd January. We have been getting all the rain that we didn’t get for the last few years, my health has been horrible and there is a giant Boston sized hole in our calendar.
For two full years, we had a mission, go to Boston, fill out the forms, live bravely, go to Boston, repeat. On the first trip to Boston in March of 2014 I had no idea what to expect. Honestly, I didn’t think the medication would work and believed that the research needed to happen so that we could learn by failing.
There were so many unknowns at that time. We rallied our people around us and we bravely went. It was truly like nothing we will ever do again. Before we enrolled in the trial I had to make one major shift in the way I thought, I had to believe that Claire could be better. That was hard. I felt like I betrayed her in that. All I have ever wanted was for Claire to feel like she’s enough, exactly how she is. To tell her we had to do all this so that maybe she could be better, that was hard. Thankfully she rolled her eyes at me and made it clear, we needed to go for it.
I had never dreamed so big and stepped out so vulnerably as the day that we flew to Boston for 24 hours for the screening visit. I had so many questions and somehow today, I have answers and it’s weird. It’s weird to not be trying. To be done with that. It’s uncomfortable to not have dates for Boston on our 2016 calendar.
I know now what it is like to have Claire, a little better because of a medical intervention. I really like Rett having a little less grip on her, yet still it controls too much. It’s become our new norm. We’ve moved on to new, still not exactly typical challenges with life. With the trial done we are trying to figure out how to find a balanced life that doesn’t revolve around research. It’s sorta normal and awesome and empty all at once.
I learned the hard way that we can’t sustain a healthy life and push that hard for too long. The part of me that wants a normal life for Claire is still there, but instead of being indulged with brave big plans, that part sits on a bench and takes deep breathes with the waves as they crash.
Now I discuss time as before and after Boston, as it was a major turning point. I’m so glad Claire wanted to go for it as I have learned so many lessons in the process. One of those was that it is good to go for what’s scariest. The new scariest thing, just living, in our new normal, the adventure never really stops.