Emily Dagostino

I’m smitten with Eli.

I receive Brain, Child’s promoted essays and posts on my Facebook timeline. One, in honor of May being Cystic Fibrosis Awareness Month, linked to what has quickly become my favorite blog. It’s about Eli, a baby boy with cystic fibrosis.

Every day I am eager for updates. Part of it’s because Eli is so damn gorgeous! Part of it is the writing. His mom’s got the gift of storytelling. I am so glad she’s telling her family’s story. It’s sad, scary and hard, but most of all, beautiful. 

I have no personal connection with CF. But, as I recounted to my husband recently in those spare, blissful hours we share between 7:30 and 10:30 p.m. when our little man sleeps soundly in his crib, I read a book about it when I was young. Really young. Like, 8 years old.

“Here! This is it!” I exclaimed after doing a quick Google search and finding the cover image I remembered of the pale face of a young girl with braided brown pigtails.

“By Frank Deford?” Sean asked.

Yes, turns out it was written by the famous sportswriter whose weekly commentaries I love to listen to every Wednesday morning on National Public Radio, and who my husband (a former sportswriter) thinks is “too sentimental.”

I certainly didn’t know who Frank Deford was when I was 8 years old and plucked Alex: The Life of a Child from the top shelf of my dresser because I was curious about Alex and the illness she had. I’d never heard of cystic fibrosis. Hell, I’d never heard of kids dying.

Aside from that book, though, I don’t have first-hand experience with CF. When I was a reporter in South Carolina, I wrote about a whole family with CF. And my husband’s friend Jennifer–“a tough cookie because she had to be,” he says–had CF and died when she was 24. He has strong feelings about her:

“People would always be like, ‘Isn’t she so inspirational?’ It would always make me mad because no one deserves to suffer just so the rest of us can be inspired … People were using it for selfish means. ‘I could learn so much from her.’ And it’s true. But she also suffered a lot. She was in a lot of pain. She died at a very young age. I’m glad I knew her and I’m sure illness shaped a lot of who she was. But I also wish she were still here.”

Looking at photos and videos of Eli, reading about his daily struggles and triumphs, it can be hard to stay above water. Like today, when I read that his tummy troubles are causing him discomfort and, consequently, stealing his–and his parents’–ability to sleep. We all tread in our own mortality, but the rage and sorrow I feel for sick, suffering kids threatens to drown me.

My family always says I’m too emotional, drawn to the morbid. But morbidity isn’t the hook here. A friend of mine gave me The Traveling Death and Resurrection Show by Ariel Gore. Thinking of why I love Eli reminds me of this passage: