I may have mentioned, once or twice or sixty times, that I'm a nervous wreck leading up to Levi's annual appointments at the CF clinic. This feels ridiculous, because we almost never get bad news. But it feels significant, like something very bad could happen. And his whole team would be there to tell us about the… Continue reading Big Things Happ’nin
Today as I sit here and write, I'm okay. But I'm going to share something with you that I created when I was not okay. Last week, I was really upset. We ran into a little red tape with some of Levi's medications, and it looked like we were going to end up paying thousands… Continue reading Stuck In the Middle
CALENDARS ARE READY TO SHIP! Calendars are $20 each, or 15% off ($17) with a discount code for anyone signed up with The Circus email list. All proceeds from the sale of 2019 #bethetree calendars support the Cystic Fibrosis Foundation. You can order one of two ways: online (shipping costs apply; payment immediately)ORDER ONLINE HEREIf you are a subscriber to… Continue reading 2019 Calendars Available for Order
It's that time again, folks. I will be riding in the CF Cycle for Life fundraiser next Saturday, September 15. If you want to skip all the fol-de-rol and go straight to donating, here's the link. Cystic fibrosis is a currently uncurable genetic disease. Improved treatments and medicines have lengthened the predicted lifespan of CF… Continue reading Help Keep Levi Crazy!
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