And Done!


It’s been about 36 hours since my last post and I am exactly where I was when I wrote that, 35,000 feet above the middle of our country. A lot has happened in that short time. Just after I hit publish Claire started a series of seizures, it wasn’t too bad. We got off the plane and it all hit me like a ton of bricks. Finding a ride to the hotel really overwhelmed me for some reason. Once we made it there I found out that the hotel stunk and I had a hard time finding food options. That’s when I ended up crying as I sat at a table in a crap restaurant feeding Claire Kraft mac’n’cheese. All of the unknowns just came crashing down on me.

We went up to the room where the next wave of seizures started and it was a very long night. I laid awake listening to her shallow rapid breathing in between brain storms, waiting for her to stabilize. Eventually she did and I got a little sleep. The last round came at 6 am and she was able to fall back to sleep for one last power nap before we had to be at the hospital at 8 am. I got everything ready to go, got her up and off we went. I asked which way the hospital was as we walked out the door into the cold and onto the next leg of our adventure. It was a short walk and we quickly found our way to where we were expected and that is when everything turned again.

As we rolled up, in the way that is so uniquely Claire she just relaxed into it all. I imagine that she had a raging headache from the long night and she was fasting but her soft smile said that it was all good, and it was. She laughed on cue as we filled out the paperwork, sat still as they drew an amazing amount of blood, held on to stand for her weight and jumped through all of the other hoops with the greatest of ease. As the nurse was filling all of the tubes of blood Claire looked on with great pride. As obvious as it sounds, she really enjoyed getting to do something herself. Even if that meant being a test subject. She seemed to relish the ability to do what she could to help, qot do something bigger than herself and I have never been prouder of her.

After all was said and done we met up with another mom and her daughter that were there for their appointments. It was great to be on the other side and just sit and talk about life, rett and trials. She gave me some tips on cabs and such and we were off to the airport. Claire took in the sights of the different buildings as we made our way through town like the rockstar that she is with all of the confidence in the world. Confidence that came from doing what she could, which in this case is changing the world as we know it.

Once at the airport security seemed to take particular issue with us and it took forever. We rushed back to the gate as they called me over the speaker by name. With that, the kind people at Virgin took my bags for me and helped me to the plane. Before sitting down Claire said hi to the captain and got her wings while she sat in his chair. She was so stoked, it all felt so normal, because normal is flying home 24 hours after landing, right?

Well maybe it’s not normal but it is awesome and I do love that. A big part of what made this trip so awesome was all of the text messages, prayers and online love that I got from people as we went about the journey. This adventure is so much bigger than that us and we couldn’t be doing it without everyone out there. Thank you so much for cheering us on, it really made this very scary journey a lot easier.

2 thoughts on “And Done!

  1. maren says:

    Whew! I’m exhausted after reading this. It’ll be amazing to look back at this first intake appointment when you are flying home from your last. 🙂

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