She was maybe 6 years old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.
And then, without taking her eyes from his face, she said, “I feel sorry for him.”
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.
Children ask all sorts of questions about my son.
Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?
But questions are easy. For children, questions have answers.
“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.
A system that tells her my son’s wheelchair is “very sad.”
A system that tells her he is a “poor thing.”
A system that uses words like confined to, suffers from and bound.
A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers and friends.
A system that tells her my son smiles “in spite of,” rather than simply because he too is a child and has access to all the same earthly wonders that she does.
Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.
So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue-tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world and I had missed my chance to set the record straight.
I realized I am very small. I am only one person.
Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19 years old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.
I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very very sad.
“It’s not sad,” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”
And then my heart turned to mush and I closed my eyes to keep from crying.
I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.
More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.
I am only one person.
But I am not alone.
This post first appeared on What Do You Do, Dear?