The English Take Boston 2014

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.

The autonomic recording by far took the most time. The hard work of world changing can be incredibly boring.
The autonomic recording by far took the most time. The hard work of world changing can be incredibly boring.
Despite the boredom Claire was very happy to be in Boston working hard.
Despite the boredom Claire was very happy to be in Boston working hard.
Claire loved the EEG and blazed through it in 41 minutes.
Claire loved the EEG and blazed through it in 41 minutes.
Even coming down with a cold Claire loved being at Fenway for a game.
Even coming down with a cold Claire loved being at Fenway for a game.
photo
Chloe loved the Red Sox game and proclaimed it “the awesomest thing ever!”
We were scheduled 4 hours for the Mullens testing Claire completed it in 25 minutes. Her focus and determination amazed us all!
We were scheduled 4 hours for the Mullens testing Claire completed it in 25 minutes. Her focus and determination amazed us all!
We all loved our day off at the museum. Claire really loved getting to see so many different paintings.
We all loved our day off at the museum. Claire really loved getting to see so many different paintings.

photo 3The next few pictures are from our great Cape Escape.

It was a treat to head out of town and get to meet up with some fantastic moms who have helped paved the road that we walk.
It was a treat to head out of town and get to meet up with some fantastic moms who have helped paved the road that we walk.

IMG_1210IMG_1198IMG_1202IMG_1221IMG_1235IMG_1261It was a wonderful getaway but we had to go back. Monday before Jared and Chloe flew home we checked another thing off Chloe’s list, the Boston Public Garden and the swan boats. IMG_1275IMG_1285photo

Our final appointment. Dr. Kaufman stopped by just before the seizures started, it was a sweet moment just before the storm hit.
Our final appointment. Dr. Kaufman stopped by just before the seizures started, it was a sweet moment just before the storm hit.
Across the country this cutie was "nervouscited" about her first day of kindergarten.
Across the country this cutie was “nervouscited” about her first day of kindergarten.

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.

4 thoughts on “The English Take Boston 2014

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