Leif and Rosy at the Shadow’s Edge booth at the 2018 Child Life Annual Conference

A few weeks, I brought my son Leif with me to the 2018 Child Life Annual Conference in Washington, DC. Just before his second birthday, Leif had brain surgery to ease the symptoms of Chiari malformation. Now he is 12 years old and is excelling in many ways, academically and physically. For him, it’s been so long since he was considered “chronically ill” or “medically challenged” that he doesn’t even remember that time. For me, it’s as if his surgery happened yesterday.

Of course, Leif was excited to go on any trip that got him out of school for a few days, which he would justify by visiting museums and seeing memorials. He didn’t know (or at least wasn’t fully aware) that I was going to make him work at the Shadow’s Edge booth.

He’s been playing the game for a while – he says he just likes to search through the city of Shadow’s Edge to find the missing pages that were blown throughout the city by the storm (a metaphor for illness or trauma, of course). And he says his favorite part of the game is spotting the pigeons that offer words of wisdom. But I when a question on one of these pages catches him, I will find him journaling sometimes. And I wonder if somewhere deep down, he remembers more about his illness and surgery than he knows in his conscious mind.

Back to our trip to DC. At first, Leif was shy, sitting in a chair behind the Shadow’s Edge table playing the game or watching for the conference staff to put out free cookies. Then, as he saw people taking our giveaways, he took on the task of organizing and repopulating the materials on the table. And by the end of the conference, he was standing in front of the table with a fan of brochures, asking passersby if they would like to learn more about the game.

What I watched wasn’t so much the development of a salesperson as it was the ownership of his own illness experience. Could he really admit his challenges to a room full of strangers? Could he let himself be seen as a member of the chronic illness community? At first, the answer was an emphatic no. But by the end of the conference, not only was he putting his true self forward, but he was letting himself represent a person who has grown through illness.

His empowerment was incredible.

On the conference’s last day, we left the booth in the capable hands of our compatriot, Rosy, who oversaw the design and development of the Shadow’s Edge, and we went to the National Mall. As Leif and I were standing on the steps in front of the Lincoln Memorial, he said, “Hey dad, don’t you think we should get back to the conference?”

We went back. And he helped connect these Child Life professionals with tools that he knows will help other people like him take another step on their journey toward wellness.

Garth Sundem
Garth Sundem is a parent, husband, GeekDad and author of books including "Real Real Kids, Real Stories, Real Change". Find him at www.garthsundem.com.
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