My friend’s daughter died yesterday. She was a college student. I only met her a few times, but she was beautiful and she was smart and she was full of the joy of life. She had cystic fibrosis. Her lungs stopped working. Lots of CF patients have double lung transplants. Some of them have the… Continue reading A Goodbye Too Soon
Category: Cystic Fibrosis
Don’t Wanna
I got this in the mail last week. I haven't opened it. I know what it is, and I'm being a brat. It's a nice thick packet. It's all the paperwork that I need to fill out in advance of Levi's annual appointment at the cystic fibrosis center. I've written about annual appointments before. Short version: We… Continue reading Don’t Wanna
Virtual Riders
(Quick links for Paul and Carol, if you're returning and want to access donation sites without reading.) ***** Paul and I have been participating in a ride to raise money for cystic fibrosis research for several years now, and because of the generosity of our friends and family, our team of just two riders has been on… Continue reading Virtual Riders
Happy Faces
Why so gleeful? That there in Levi's hand is his last IV. The PICC line will come out tomorrow morning and swimming may commence. I am of course delighted and also I would like to take a mammoth nap. I was talking to Paul this morning, and we agreed that one part we really dislike… Continue reading Happy Faces
Daddy Eggs
For breakfast this fine holiday morning, we had a bit of nostalgia. As Paul and I lolled in bed at a shocking 7:00 AM (remember, this is a man who rises daily without an alarm at the inhuman hour of 4:45), he said, "Ugh. I don't feel like making breakfast." He does, most days. He… Continue reading Daddy Eggs