We’ve made it a long way. We pushed and got to the airport with a few minutes to spare. We are now on our 4th trip to Boston within 5 months, I still can’t believe it. We’ve learned a lot along the way. We scheduled in a lot more margin this time. We started packing earlier, asked more people for help and were very intentional about making sure that Jared and I were laughing together and staying on the same page. Somehow, even with everything going smooth by our standards, the grief snuck in and hit me hard, right in the gut. It’s not fair that even when everything is going well, still it is so hard that it takes your breath away and makes you feel like you have to puke. After much reflection I have come to a simple conclusion. That is because it is hard, really hard. Support from friends helps. The peace that I get from my faith goes a long way. At the end of the day, this is hard and those thing make it manageable but nothing can make this not hard.I knew when we signed up for the trial that it would be hard. I knew that we would drain our bank account with the cost of travel. I planned that there would be a physical toll on all of us. What I never could have seen was the heartbreak I am feeling right now as I sit on the plane next to Claire as she contentedly watches the Muppets. I signed up for this trial because I knew that everyone has to start somewhere. Much like the first planes didn’t fly, I had very low expectations for this treatment. Due to the sensitivity of the research I can’t say much, but I have checked with the team and I can say this. While I can not be certain, I do believe that Claire is on the drug and it is devastating to know that we can only give her these shots for another week. This is a whole new level of hard.
I’ve been to conference and spoken to doctors about the future of Rett Syndrome and the response has been, “not if, but when”. For us, the when is now. I live in a world where I can give Claire something that helps. Soon our when will become a “back then.” I don’t know what will happen when we stop the shots. Research will keep on but I don’t know what Cliare’s brain will do without whatever was in those little vials that we are giving her. This I do know. I am so glad that we’ve made these sacrifices and got a glimpse of the possibilities. After all, don’t think there’s ever been a better time to do the hard stuff than now.