Days like this remind me of A Tale of Two Cities. “It was the best of times, it was the worst of times.” Yesterday I woke and checked my inbox to see if we had received confirmation from Boston. While there was no news on that front I learned that the world lost a beautiful soul that morning. Brianna had been fighting to recover from a pneumonia for a while and Monday morning she was set free, to dance and use her body as she pleased in heaven. I nearly choked on the knot in my throat and lost my breath for a moment, perhaps this is how Claire often feels. I took the girls to school and basqued in the vivaciousness of their laughter.
Once they were both in school I called Boston again, nothing. If ever there was a time that I would like to feel like I was doing something, it was that moment. Would we be able to give back to our community by participating in this trial? How many more friends will we lose before help is available. I sat and watched the waves as that seemed to be the limit of what I could do in that hour. I prayed, I breathed and I opened my hands. I sat in the sand and cried, for the family that had to leave the hospital without their child after such a long fight, for Claire as I know she is so ready to be done with it and we are such a long way away. I thought about the overwhelming task of going to Boston if we are excepted and about what we do if we aren’t able to go.
I gathered myself and figured that either way, I had to get some sort of grip on our life as the fridge is completely empty and there isn’t a clean pair of socks to be found in our home. I called friends to distract myself and pass the time. Then I called Boston again, just in case there had been some change in the last 90 minutes and it’s a good thing because there was. The research assistant answered and replied that she was just about to call me. The team was done reviewing the neurology records and decided that we qualified to participate in the trial now. “You can finally be excited now.” It started in September, we waited and waited some more. Then we went to Boston and waited some more and now, now we can be excited.
I nearly passed out, then I felt like I might puke, I cried some more and began to share our exciting news. October 2007 we were told that Claire had Rett Syndrome and that there was nothing we could do. We were told she might just die in her sleep or that she might live a long life. We’ve seen too many of Claire’s Rett sisters leave us too soon. But today, today we are given a chance to change that. This treatment might help Claire with breathing and if it does that would change our world on epic levels.
So while my heart broke, it also soared. As the day went on and Claire got to share her news with those that we saw I learned of another two girls with Rett Syndrome that left this world. Three in the same day, so bizarre, it’s unfathomable that it happens at all, but 3 in the same day?!?! At the end of the day, after the girls had been kissed and tucked in I sat and tried to wrap my head around the events of the day. We are going to Boston, Claire will receive treatment, families are grieving and friends are pulling together. What a whacked out and beautiful scene it is. I remember the soft sound of the waves and the uncertainty that swirled around in my head. There is still so much that is yet to be known and figure out but what I do know is that right now, with what we’ve got we are doing the very best that we can. And it is enough.
4 thoughts on “The Best and Worst”
Colleen! First of all – blessings as you begin this journey of clinical trials and travel and hope. I know how you feel, hearing about the loss – sorry for them and yet happy it’s not what you have to face. I feel the same way whenever I hear about a young adult lost in their sleep to SUDEP. Bless you in the days ahead – I will be praying. xoxoxo Tami
Thank you Tami!
I have a similar blog post brewing! Yesterday was exhausting with all the sad news and to get your news the same day!!! We love you!!
What a ride! We love you too! I think April is going to be a hell of a roller coaster but we will come out of it, having kicked some major Rett ass 🙂