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Devan & All the Children: Too Damn Cute to Die

August 30, 2010

By now, a lot of you have probably heard, read or seen something about Devan Tatlow, a 4-year-old boy battling a rare form of high-risk leukemia whose parents launched a worldwide campaign to encourage bone marrow donor registration. Lots of people love this little boy to pieces, and now I totally get why.

OMG, he’s sooooo cute. I’d heard a lot about him over the past few years from my friend Laura, who is close with Devan’s parents, but, until the other day, I’d only met him once. Very briefly.

Then, at a barbecue at Laura’s house one August afternoon, I got swept up into Devan’s world. Between rounds of hand sanitizer, Devan zeroed in on me as a likely sucker for his charms (have I mentioned how cute he is?), and together we  hummed a tune. A 99-verse tune. OK, it turned out that we didn’t hum ALL 99 verses, but it’s fair to say that we spent quite a bit of uninterrupted time together.

Devan’s joyful energy certainly belied the gravity of his illness. He made up the tune. He laid out the plan: Each verse would last 12 seconds; each successive verse was to get progressively louder; and we would take occasional breaks when we would be able to skip from, say, verse 9 to verse 12.

This over-the-top adorable boy with a curly mop-top and a radiant smile inventively led me through his imaginary world filled with long songs, short rests and deliciously creative breakfasts (think chocolate-covered bagels and scrambled egg soup). We had a giddy time together. The very definition of being in the present moment.

Needless to say, I fell head over heels for him. It’s unfathomable that this boy who is so alive has such evil literally coursing through his veins.

And all I could think after he left was: He’s too damn cute to die.

The children. They’re all too damn cute to die. Whether it’s cancer or meningitis or a car accident, the grief of losing a child seems unbearable.

Devan’s been getting chemo, but the toughest and riskiest part of his treatment lies ahead. Soon. As you likely know from from all the news stories that ran back in in May and June, he’s depending on a bone marrow transplant to save his life.

The all-out fight against cancer carries it own type of Grief, Interrupted. It’s a delicate balance between honoring your sadness and anger and mustering the resources to defeat this monster illness.

Devan’s parents, Indira and Dermot, have faced this nightmare with both ferocity and generosity. The unprecedented bone marrow registry drive they and their friends have spearheaded has brought untold numbers of potential donors out of the woodwork. Their focus on minority and mixed-ethnicity communities will contribute to saving lives in hard-to-match children like Devan.

He’s too damn cute to die. This is one of those moments when it’s tempting to throw a tantrum and demand “fairness.” If life were “fair” as most of us would define it, Devan’s fate wouldn’t even be in question. He’d vanquish this disease and come out on top like a superhero. A singing superhero, of course.

My wish for Devan is a full life at least 99 verses long. Each verse will last a year, and each verse will be lived increasingly out loud.

……….

Coach’s Query

Can you think of at least one way you could live your life increasingly “out loud”?

……….

Find out more about Devan and becoming part of the bone marrow donor registry.

As I was looking around online at other stories about Devan, I came across the equally heart-rending story of an 11-year-old girl named Shannon Tavarez, who was starring as young Nala in Broadway’s “The Lion King” when she became ill with a similar form of cancer this past spring.

……….

Coming tomorrow: The scary thoughts that Devan’s illness brings up.

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