When Richie was a baby, linked to a ventilator and a feeding pump, I would get pitying looks and stares as I took him from place to place. “Poor thing,” people would say, as if his entire existence was about those machines. I brushed it off and realized that people don’t mean any harm; they just don’t know how to react when they see a baby hooked to life support mechanisms. As he has gotten older, those looks have changed. People glance in his direction and then quickly avert their eyes as if they are ashamed of wondering about him, ashamed of their own curiosity. They avoid staring, but at the same time, they ignore a child who loves to interact and be friendly.
A few months ago, we visited Richie’s pediatrician. The waiting room was crowded, and Richie was enjoying watching the kids in the room. He was laughing loudly and squealing with joy. The parents and kids took notice of the noises he was making and turned to look, but they quickly looked away. It was like they wanted to pretend he wasn’t there. I felt ill at ease, and I couldn’t wait to get out of there, but my emotions about the visit confused me.
Not only was I bothered by their reactions, I was annoyed at myself for being bothered. Why did it matter what these strangers thought of my son? Why did it get under my skin?
I spent some time examining my reaction and trying to understand my feelings. On one hand, I’ve never liked all eyes focused on me, so that was one reason for my discomfort. But what was most uncomfortable was knowing that whatever those strangers were thinking about my son, it wasn’t the whole picture. Yes, he was shouting out in public. Because he’s three and very big for his age, I knew the people in that room probably made assumptions about his cognitive ability and his behavior. I knew they were wondering “What’s wrong with him?” I knew what they were thinking because, in a time that seems long ago, I would have thought the same things. I was uncomfortable not only with the way people reacted to Richie but also with the realization that I once would have done the same.
What my son has taught me, and what I wish others knew, is that a moment in a child’s life, a reaction or noise or behavior, is not the sum of who that child is or who that child can be. When we choose to engage and resist the urge to look away, we have the opportunity to really understand the complexity of another person’s journey. Talk, ask questions, learn. See the human being in front of you. Whatever you do, just don’t look away.
TheMighty.com featured this article on its site in February 2015.