No Safe Adventures

Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having fun, or trying to just keep your head above water. We knew that it wasn’t going to be a vacation and it wasn’t. It was an adventure on every level. While we were away I saw this quote from Jon Acuff. photoWhen I saw this a giant light bulb went off in my head. This trip is anything but safe and somehow I had been overlooking that. I wanted it to be smooth and easy. It hasn’t been. It has been an adventure, which is what we had signed up for at the start. We enrolled in the trial because I dreamed big enough to believe that with time, there might be a treatment for Rett syndrome one day, not because we wanted to play it safe.

Trials are hard, it sounds obvious but somehow it is glazed over. We signed up for a commitment of over 70 weeks and 7 trips across the country for something that might not help Claire or ever be approved for Rett syndrome. We didn’t sign up for a treatment for her, we signed up for the process of learning and experimenting and we are happy to be doing it. But it isn’t safe and we are at this point very tired.

I wish I had some fabulous update about all of our adventures that went perfectly smooth but that isn’t this story. So here are some of the ups and downs with pictures.

We were so excited to leave on this adventure. We even made it to the airport early enough to take a picture of us all smiling.
We were so excited to leave on this adventure. We even made it to the airport early enough to take a picture of us all smiling.
Our first day of appointments was St. Patrick's Day and Chloe was feeling fairly festive.
Our first day of appointments was St. Patrick’s Day and Chloe was feeling fairly festive.
As much as this trip was all about Claire we tried to make it fun for Chloe. Tea time at the American Girl store was just that. Or as Chloe put it, "Best day ever!"
As much as this trip was all about Claire we tried to make it fun for Chloe. Tea time at the American Girl store was just that. Or as Chloe put it, “Best day ever!”
Chloe was resistant to the new time zone, so we hid in the bathroom until she fell asleep.
Chloe was resistant to the new time zone, so we hid in the bathroom until she fell asleep.

photo 32 photo 29 photo 27 photo 25

While Claire and I had appointments Jared and Chloe kept themselves busy at the science museum, the Boston public library and the museum of fine art.
While Claire and I had appointments Jared and Chloe kept themselves busy at the science museum, the Boston public library and the museum of fine art.
Claire was very happy to be back to work with some of her favorite people.
Claire was very happy to be back to work with some of her favorite people.
Claire also was very fancy using her hands to show off for the testing. I may have been doing backflips as I watched on the screen.
Claire also was very fancy using her hands to show off for the testing. I may have been doing backflips as I watched on the screen.
The amazing chef at breakfast took note when I passed on juice for Claire. She can only drink coconut water. The next morning he had some for her along with special pancakes which she enjoyed tremendously.
The amazing chef at breakfast took note when I passed on juice for Claire. She can only drink coconut water. The next morning he had some for her along with special pancakes which she enjoyed tremendously.
It was my birthday so Jared took the girls to the science museum while I took some time to breath deeply.
It was my birthday so Jared took the girls to the science museum while I took some time to breath deeply.

photo 21

Chloe zipped Claire all over the solar system.
Chloe zipped Claire all over the solar system.
It snowed. Chloe was over the moon excited.
It snowed. Chloe was over the moon excited.
We learned about shoveling and the importance of appropriate footwear when we got to the house we were staying at while we had a few days off.
We learned about shoveling and the importance of appropriate footwear when we got to the house we were staying at while we had a few days off.
Captain Awesome was a great sport about having to wear my shoes for his first time ever shoveling snow. It was memorable, very memorable.
Captain Awesome was a great sport about having to wear my shoes for his first time ever shoveling snow. It was memorable, very memorable.
photo 18
Claire got a horrible cold half of the way into the trip. With two seizure filled days she got a lot of sleep and is still trying to kick the super annoying cold.
Chloe got to make her first snow man. She wasn't phased by a lack of gloves.
Chloe got to make her first snow man. She wasn’t phased by a lack of gloves.
We nearly froze in the process of learning a little history.
We nearly froze in the process of learning a little history.

I won’t go into all the boring details of the many mistakes of Captain Awesome and Miss Amazing. But I did get out at the airport at the completely wrong area with both girls and all the luggage so we took the full “tour” of Logan Int’l. By the time this happened it was pretty much par for the course.

We made the most of it the best we could but it was a hard trip. Seeing Claire sick is really hard. Dealing with that not at home is a whole new level of nuts. But that’s why we are doing this. Because what Claire has is hard and it isn’t going to change itself.

I try to embrace the adventure, I really do. But right now, I’m happy to be heading back to the safety of home. It was good. I am so glad that we can be doing this. But I am very tired.

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