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
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
(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
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
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
This is me, not freaking out. We just dropped Levi off for overnight camp. He'll be gone two nights. He has been apart from us overnight before, but it's always been one night, or he's stayed with my sister. This matters because if he's gone one night, we can manage all his treatments around being… Continue reading Camp!
Well, it's that time again. (To donate to CF research without listening to my rambling, click here to support Carol or support Paul!) By "that time" I mean that Paul and I have registered for our annual Cycle for Life ride to raise money for cystic fibrosis research, but we've done absolutely nothing else. We've raised zero dollars… Continue reading Cycle for Life
I've been trying to read a book, and I'm having a lot of trouble getting through it. I'm seven chapters in after an entire month. The problem is not time. Maybe a little, but I'm finding time to read again these days. The problem isn't the writing. It's well done, and I am in fact attempting… Continue reading Seven Chapters In
The boys and I went to a benefit dinner last night. Paul stayed home. I told the boys he wasn't going with us, and Elias said, "Papa's in trooooooouble!" (Because why else would you be forced to stay home from an outing?) He seemed pretty happy about that, for some reason. I was just happy… Continue reading You talkin’ to ME?
We were at the CF center this morning (regular checkup; all's well). Because of infection control stuff, we don't see much of other patients and families. Sometimes you see people you know in the hall and wave goofily from a safe distance. (You can occasionally determine by text that your friends are a couple of rooms… Continue reading You Can