My son Charlie was born into a room filled with professionals—NICU doctors, respiratory therapists, neurologists, nurses, and residents—ready to meet his needs, gathering around my not-breathing infant and giving him breath. They incubated him and hooked him up to monitors that read his oxygen and heart rates. They fed him through a tube in his nose and then later in his belly. They eventually performed a tracheotomy, which would allow him to breathe on his own and allow us to finally bring him home. With this many caregivers and experts at the ready, Charlie was never short on attention.
Charlie grew bigger and more stable. The trach was removed and the specialists significantly lessened. We reveled in the dimming of all those spotlights of attention. When he turned four, we started venturing out of the house to go for walks at the local park, which had a sign marking the one-mile paved path around the perimeter. It read, “Welcome to the LifeTrail.”
It was while walking on this LifeTrail that I first noticed something strange. Little kids, probably preschool age, would run up to us and ask Charlie, “What’s wrong? Why can’t you walk?” He was obviously too big for the stroller he was in, and they couldn’t figure out why this kid who was not much younger than them wasn’t running around. Because Charlie is nonverbal and was just learning to use his speaking device, he would generally smile and wave, and I would fill in their answers: “His name is Charlie, and his legs don’t work the same as yours, but he can still wiggle them, and he loves to go for strolls. Thank you for asking.” It was at this point that they’d say “Hi” to Charlie and then run off to play. Occasionally, they’d look back over and wave and we’d wave back. We were all on this LifeTrail together after all.
But it was another scenario entirely when parents were involved. If parents saw their children looking at us, they would smile and then politely pick up the pace, especially after Charlie got his wheelchair and his differences became even more apparent. One fall afternoon, a little girl spotted us where she was gathering acorns underneath the mammoth oak tree at the entrance to the trail. She pointed at the wheelchair, but before she could open her mouth, her mother leaned down and whispered something and tugged her away. We were left standing under the big tree wondering why there was suddenly so much more space at the park. We had gone from a surplus of attention in his early years to a wide swath of inattention as he grew older.
Let me stop and say, I know these parents meant well. They didn’t want anyone to do or say anything embarrassing. Kids at that age are in the lesson-learning stage where parents are constantly imparting all kinds of pearls of wisdom like: Yes, that’s a potty word, and no, you can’t stick that up your nose. Kids are learning what is socially acceptable and what is not. But the lesson these interactions ended up leaving us all with was that if someone is different from you, be polite and move along so no one gets uncomfortable. Rudeness was to be avoided at all costs.
I know these very same people would be willing to donate to the Cerebral Palsy Foundation on Facebook and sign up for a meal calendar for us if Charlie were ill. But sometimes what I really need, what we all really need, is to be acknowledged and engaged with. Charlie is not a cause. He is Charlie. And he wants to say hi.
It’s the simple act of curiosity that makes us feel a part of the world. Isn’t that how we learned to make conversation? You get to know someone by asking a question and then listening to the answer. It’s the beginning of friendships and terrible blind dates and wonderful marriages. It is how we send out feelers into the world for who our people are. But if you never ask, you will never know. Kids with special needs and their families want to be known. They want to be seen. There is such a stigma about possibly saying the wrong thing that nothing gets said. Opening up a dialogue with someone who is “other” than you is a huge risk. But there are such great rewards! Charlie loves peanut butter and music and crinkly paper and math and will hug you with his whole self. He’s easy to make smile. He’s a person you want to know.
I believe God puts so many different kinds of people on this earth because He is ultimately curious and creative. He genuinely wants to know each and every one of us, and He wants that same level of relationship for us. The world would be quite boring without nuances or seasons or personality types.
Charlie and I still walk the LifeTrail, and every time a kid runs up to us to ask about the wheelchair or the speaking device, we say “Hi” and “Thank you,” and in the space of those few minutes of conversation, a connection is made; we are seen. And when we part, one more person in the world understands us, and that is exactly the kind of encouragement we need.
Jamie Sumner has written for the New York Times and the Washington Post among many other publications. She is the author of the nonfiction books Eat, Sleep, Save the World (for parents of children with special needs) and Unbound (on motherhood), and the middle-grade novels, Roll with It and Tune It Out. She is also mom to a son with cerebral palsy and she writes and speaks about disability in literature. She loves stories that celebrate the grit and beauty in all kids. She and her family live in Nashville, Tennessee. Visit her at www.jamie-sumner.com.