I’ve been home for almost a week and I am still trying to come down from the awesomeness high that was the last
two weeks, three months better part of a year. I still can’t believe this is my life. When we were told that Claire had Rett Syndrome I saw a future filled with fighting for each small victory. I saw small miracles like making it to a neurology appointment at the scheduled time or managing to refill prescriptions before we ran out. I thought we would just be getting by forever. It’s been a long process but somewhere along the way I woke up and things were different.
Once we decided to start putting ourselves out there I found a world so much bigger than I had ever conceived. I never imagined that people, both familiar to me and not, would show us so much compassion, its overwhelming. Everything converged last weekend as I sat in awe, of the families that went before us and made a path across Rettland. I saw Dr. Percy’s tears stream down his face as he talked about how far we’ve come and where we are going. I cried with friends when the announcement came out that phase II of the NNZ-2566 clinical trial was fully enrolled. We celebrated that we had the chance to help a few of those families along the way and that we will likely be helping many more in future trials. How does that happen? How did my life get so awesome?
I came home with more hope than my heart could hold. It was tempered with Claire’s seizures and our collective exhaustion but still, my smile is bigger than it ought to be. My vision is blurry from what I can only describe as extreme fatigue and a closeness to the most pure joy and love that I have come across so far this life. The rational part of me says step away, slow down, you can’t keep living that sort of high, your eyes will burn, your heart will explode, we aren’t designed to live this much. Then the other part of me says, keep on. It’s better to live a life too full of too much good than one that is desolate and devoid of joy.
It feels like an awesomeness hangover, my poor body just can’t process that much good in that short of a time. But it is just so fun, even exhausted and barely able to function it’s all I want, to be out there, fully aware and grateful for all the people who have gone before us and fully aware of those that will come behind us. Soon enough something will change, heartbreak will come and I won’t be vomiting rainbows. For now I can and so I will.