It has only been 5 days since I last posted but it has been a very full 5 days. If you define adventure as the moment that everything goes wrong, well I would say we are there. Somehow, at the same time just as much is going right and we are having a pretty wicked good time. Claire was happy that Wednesday and Thursday had testing that required a little more work. She was underwhelmed that the first day was just being monitored while we watched movies and welcomed the more active tests. While the testing got more fun, life away still wasn’t easy. I wasn’t sleeping well as our hotel was right by the big hospital and some sort of construction yard that moved giant loud things early in the morning. By Thursday I was desperate for a win so we decided to go to the American Girl store for dinner. It was 30 minutes away but we had plenty of time to spare and really needed some fun. Just as we got close Claire had a pretty good seizure and my phone completely died, it was far from the fun that we had hoped for. In the midst of it we met some of the kindest people. The server at the AG cafe was beyond wonderful and charged my phone while we dined. The only other group eating made a point to say hi and how cool Claire’s chair was as well as comment on her sheer beauty. Claire was more interested in the fries but at least she could let me know what she wanted, food. I was mildly renewed as we went back for our final night before Jared and Chloe joined us and we got out-of-town. I imagine it’s a little like you might feel half way into a marathon, right before you get a little tail wind. Friday morning we checked out and went in for an echocardiogram. Claire handled it like a pro, as she always does. She held so still the tech couldn’t believe what good pictures she got of Claire’s heart. I am just so proud of her.
Once the testing was done we got to go have some real fun! We had 8 hours between when we were done and when we needed to go get Jared and Chloe. Earlier in the week, when I was down I asked my friend Kim if there was any chance of connecting us with tickets to the Red Sox game, which happened to fall right in that window. Apparently it was their home opener which is why I couldn’t find tickets, this game was a really big deal. Prayers were answered her son-in-law, Steven Wright (watch for him #35 I hear he’s got a heck of a knuckleball) was able to get Claire and I in for her first baseball and it was nothing short of amazing. To start there was Danny the usher, who moved Claire’s chair to a safe place while we sat in the real seats and came and checked on me every few innings to ask if I needed anything. Then there was the complete stranger who gave Claire is warm jacket on top of her blanket and the other stranger who gave Claire a knit hat to keep her ears warm. I was blown away by how wonderful everyone we met was. Eventually we got cold and went back to the wheelchair area. Claire got her own hat and another blanket to keep warm because she really wanted to stay and watch the game.
The girl loves baseball and it was such a gift to watch her take it all in! I think I see more games in our future. As we left some nice guy came toward Claire and handed him his opening day hat. He got down and told her how she is a hero. We said thanks and got on our way, excited to surprise Jared and Chloe at security. It was wonderful to have the rest of our crew join us even if Chloe was miserable and sick.
Before we headed out-of-town we went to grab some food. Our friend told us about this great pizza place that was close and even called to get us a table. We sat in the back of this quaint little place, both of us in shock, that we were all together, in Boston, so good and so surreal. Then, out of nowhere, this guy walks up and says, hey, I remember you, that’s my hat! It was the guy from Fenway, SMALL WORLD!
He introduced himself and we talked a little, he wanted to introduce us to his family. As we left we went by their table and all 20 of them clapped for Claire. Again, he got down on his knees to talk to Claire and tell her of his admiration. This could have been really creepy, but this guy was so authentic and genuine. He told us how his dad was a doctor and he was in the field. It was sorta cool for a complete stranger to address Claire as the rockstar that she is.
After that we ran through the freezing rain to the car and drove out to Cape Cod. It was so nice to get away from Children’s and go rest for a few days. The picture doesn’t do it justice but I went from waking up to the top picture all week and then the view on bottom for the weekend. It was peace and quiet that our whole family deeply needed. We were all so tired. Both Jared and I had marathon weeks. Chloe has been exhausted from being sick and Claire loves life at this speed so it’s been great all the way around. Just to keep things from getting too comfy Claire’s wheelchair broke.
It’s a very vulnerable feeling to be away from it all, on the other side of the country with several days before you get home and have your fragile child’s wheelchair that you depend on break. Thankfully Jared was with me because somehow, when we are together this sort of stuff doesn’t phase us. We laughed it off and asked the rett mom we were meeting in the morning if she could spare some duct tape for us, problem solved. This morning we got to meet up with Jillian and her fabulous mom Jennifer. Claire was very excited to be with our extended rett family, for that matter, we all were. Our rest away is just about wrapped up. I will take Chloe to urgent care before we head back to Boston in the morning, hopefully it will be a very quick and boring visit. Claire has two final days of stuff for the study before we fly home Wednesday night. It’s been a long trip with so many ups and down but we are better for it. Maybe it’s because I am delusionally tired but I really think that once we get home and rested I will look back and be better for all the steps on this journey. Already I am so thankful for all the paths that we have crossed. Strangers, facebook friends, random hospital people, we have connected with so many and it has been a beautiful gift. Thanks for bearing through the wordiness of this post as I am too tired to edit. Hopefully the next one will be much more succinct