Paul and I did the Cycle for Life today, to raise money towards CF research. (Those are our friends Rich and Heather with us.) The course was mostly on the towpath. Now, the only other time I've ever come to the towpath to ride, I fell off my bike and down the side of a… Continue reading On Falling Down
Category: Cystic Fibrosis
A Day in the Life
Levi had an annual appointment at the CF Clinic today. An annual appointment means there are lots of people to see, and we stay a long time. I thought it might be interesting to take you all along, sort of. It's not really a very representative day in his life, so the title is probably… Continue reading A Day in the Life
Living with Fear
There's a kind of online community of people affected by cystic fibrosis, and I'm loosely connected to it. I heard this morning that a 23-year old woman with CF died yesterday. I'm sad today. It feels a little ridiculous, because I'd never heard her name until this morning. And yet, her death feels personal. It… Continue reading Living with Fear
Endings and Beginnings
Levi had an appointment at the CF center today - just a regular check-in. It was a bit of a different day, though, because it was his last appointment with Dr. Spoon. Dr. Spoonhower is leaving our clinic for another one close by. We will see another wonderful pulmonologist (Hi Dr. Strawbridge!), but we will… Continue reading Endings and Beginnings
T-shirts and pizza and squirrels. Wait … squirrels?
It was Great Strides day in Akron today. I arrived early to help with setup and registration.Hardesty Park in Akron gets festooned with banners and signs in short order. T-shirts are stacked up in monstrous piles for any walker who raised at least $100. (I get mine in size Little Boy. The boys wear t-shirts… Continue reading T-shirts and pizza and squirrels. Wait … squirrels?