Our Cousin Jack

Our latest road trip — dubbed the "Cousin Tour" — brought us to Pennsylvania, home of Cara, 7, and Jack, 12. This visit was extra special, because we don't see them often.

At 6 months old, Jack was diagnosed with spinal muscular atrophy (SMA), a genetic condition that leaves his muscles too weak for many of the everyday parts of life we take for granted, like eating, dressing, and walking.

Jack does his fifth grade math homework on the computer, shows us around his neighborhood, and leads us through Longwood Gardens — his favorite place — in a powered wheelchair that he controls with his fingertips. Still, his care involves a lot of special help and extra gear that doesn't take to the road with ease.

Unlike some of the other cousins, Caitlin and Ellie are cautious, sometimes evasive, around Jack. Knowing how important visits and buddies are to Jack, I hope they warmed up enough to him and didn't spend too much time cavorting with his sister Cara.

Driving back to Maine, the questions pour out. How does Jack answer a question in class? How does his teacher understand what he's saying? What does he do during gym class?

Then Jack's father tells me about a book, OUR FRIEND MIKAYLA, written by third graders whose classmate, Mikayla, has severe brain damage. I ordered it right away, and the day it arrived, I read it with all the girls after school.

It made all the difference for Caitlin and Ellie to get their questions answered by peers, a trustworthy, been-there-done-that bunch. The girls pointed out things Jack had in common with Mikayla — both are fed by a special tube that connects to their bellies but still enjoy eating certain foods; both roll their wheelchairs into their vans to get to school; both like to laugh and have friends. Talie — who wanted to hear this book read over and over — summed it up well: "You should be nice to people in wheelchairs. They can do things, too. They just do them special."

Editor's Note: To learn more about SMA go to www.curesma.org.