Smitten with Eli

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:

“I hardly ever studied for religion class–couldn’t quote scripture to save my life–but I impressed even pinch-faced Sister Mehitable with my vast knowledge of the saints, their wild maudlin lives, their miracles. Of course I knew the answers–my friends whispered them in my ear. Sometimes I had to edit their explanations to please the sisters, of course:
Why did the saints intentionally make themselves uncomfortable, sleeping on stone beds and pricking their fingers?
To better identify with Our Lord’s suffering, I’d say.
But according to my saint friends, it was more complicated than that. Clare of Assisi, who wore a hair shirt under her rough Franciscan habit in that cruel Umbrian heat, told me it amounted to a kind of joy training. ‘If my happiness is so weak it can be destroyed by an itch, a mosquito, a foul wind, is it really happiness? The risen Christ taught us that we needn’t let suffering have the last word.’ She cocked her head to the side, gazed upward. ‘Hungry, ill, and overworked,’ she said, ‘my joy is thick.’” 
Eli and his family–their joy is thick.
No, he doesn’t deserve to be sick, suffering and in pain. No, it’s not fair. It pisses me off. I want the story of his life, his family to be long.
I want the story of my life, my family to be long. (To go on and on forever.)
Every night when I put my son down to sleep for a few blissful hours in his crib, I say two prayers: “Thank you, God, for today. And please give us another day together.”
It’s the most any of us can wish for.

3 thoughts on “Smitten with Eli

  1. I so enjoy your writings. Reading them makes me feel close to you and your expanding family. Thank you. You are a wonderful writer. Give Henry a hug from me. Aunt Gloria.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s