It’s hard to know where to start when it feels so much like the end. Since mid March we have been to Boston 4 times. We’ve spent 21 nights in hotel and given Claire 280 shots. It has been an incredible and empowering experience getting to actively change our world. With each injection, each trip we could sense that bigger things were happening. Now we go into a washout period and with that I’m sad. I will miss the thrill of changing the world. But I won’t miss sleeping in a hotel or sitting on a plane watching for seizures like I have for the last two hours.
This wasn’t an easy trip. We made the most of it. I am incredibly proud of both Chloe and Claire for being stellar travelers and understanding of all of the research protocol. One of the highlights of the trip was going to the Museum of Fine Arts. Claire has always loved looking at things, it plays to her strengths, so this was a natural fit. I was surprised by how much of the art celebrated ordinary, every day life. It was a perfect reminder of the gift that each day is, just as it is, even if you aren’t out there changing the world. Life, as it is is extraordinary. So as we switch from world changer mode to our normal, very rad life, I am seeing beauty all around. At this point my eyes are really too swollen to say much else about the trip. So I will share some pictures from the adventure.
There was a lot more not pictured. We got the pleasure of meeting up with another family that was in the study. We had a lot of fun meals. On the last day my eyes were puffy from crying and Claire’s were from seizures and congestion. It was an amazing adventure. I am glad that we had the chance and I hope that in I get to see the fruit of it in years to come. For now it’s back to normal life in Rettland. The adventures to Boston will resume March 2015 when we return 3 more times for the rest of the trial.