When Addie was a year old, I wrote Frank Deford. He's a famous sports writer whose daughter Alex died of Cystic Fibrosis at the tender age of eight. He wrote a book after her death entitled, ALEX: THE LIFE OF A CHILD. It was later made into a Movie of the Week. I watched it (ironically when I was about eight), and it has stayed with me all these years.
I remember sitting in our basement sobbing and thinking, "That is the very worse disease anyone could ever have." It was such a concrete memory, where scenes were cemented like a child's hand in the driveway, where you look back and say, was that me? Was I ever that little? Did this really happen?
One scene stuck with me: Craig T. Nelson, who plays Frank Deford is holding his daughter upside down, pounding on her back as she's coughing up blood. He's trying to stay positive, trying to act like his daughter isn't coughing up blood, isn't dying in front of him. And it was one of the hardest things I'd ever seen in my life. To this day. I can't get that image out of my head. My mom had just returned home from a meeting, and I buried my face into her. It was the first time I realized children die - life was excruciatingly unfair.
When we were diagnosed, that scene played over and over again.
I don't know if this was a premonition or glimpse into our future, but I do know I was changed.
Because of that film, I started donating to the Cystic Fibrosis Foundation. It was actually the first donation I ever made. And strangely, beautifully enough, I have been donating to my daughter's cure, every year for 17 years. And eleven of those years I had no idea.
I told Mr. Deford this in my letter and sent an essay I'd written entitled WHEEL OF MISFORTUNE. He wrote me back, in his own writing. He even addressed the envelope. I kinda love the guy. Here's what he wrote:
November 2, 2006
Thank you so much for your lovely letter and your brave essay. I can see that your beautiful daughter is in good hands - so she should be just fine when we find that elusive cure... which we must and will.
Things are so different now with CF then they were when Alex had to deal with it. I'm sure Adelaide will live a long and prosperous life.
All my best wishes,
Frank Deford (Alex's Father)
I treasure this letter. And I like to think that it was a preparation for what was to come. I got a glimpse of what CF looks like and I started early on my journey to raise money for her cure, for all the kiddos and adults and in memory of those who didn't make it, for all the Alex's out there who changed lives, who inspired donations, who made a difference. Thank you. Thank you. Thank you.