Oct 15, 2015

"How's Claire?"

I never know quite how to answer this question. And I get asked it a LOT. We're lucky we have so many people concerned about Claire's welfare but the reality of how Claire IS is kind of a bummer.

Claire has progressive, incurable brain disease. Couple key words there. "Progressive" means it's going to get worse, and "incurable" means there is no cure. While there is a treatment for Moyamoya disease - surgery - Claire currently isn't a candidate. The disease is progressing in Claire's middle cerebral artery at the moment, which isn't exactly accessible for surgery. There's really only one of two ways this could go: the disease could begin to progress outward, in which case surgery may eventually be a viable option; or it could progress inward, in which case it will be fatal.

That's it.

We had a pretty good run for a few months. Claire went the entire summer without having a single TIA (that we knew of). We've been told that she has them in her sleep so, the days she didn't wake up all wide-eyed and bushy-tailed as usual, it's possible she had one during the night. But she did not have any observed incidents for three months.

She had one four days ago though. A scary one. One that lasted longer than some of the previous TIAs and one that had me thinking maybe it was time to take that helicopter ride to the big hospital. She came out of it eventually, but she's still not quite back to full Claireness... and maybe she won't ever be.

Because... progressive. Incurable. Not a surgical candidate.

Claire is not going to "get better". In fact, she's going to get worse, and worse yet until hopefully she gets bad enough that surgery would be an option, but not bad enough that she dies. And while I don't spend a lot of time thinking about that - some days it just reaches up and smacks me in the face.

Claire does a wonderful job of living each day in the moment, and as much as possible I try to follow her lead. I don't like to think about the stark realities of what her future holds. 


How is Claire? Today she is smiling. She is happy. She is alive.


  1. I love you, I pray for you, I cry for you friend...

  2. As sorry as I am to know the stark, sad reality, thank you for sharing it. I met Claire when I was a substitute teacher in her 5th grade class and instantly fell in love with this sweetie pie. My son, Jason is her friend. I'm going to start praying with him for her.