The other day, I took Namine to McDonald’s, just the two of us out to a father-daughter lunch after a hard physical therapy session. Namine had worked hard, and despite being sick, made steps (ha ha) toward strengthening her legs. She deserved a treat.
As we were eating (Namine her chicken nuggets, apple slices and french fries; me my crispy chicken sandwich), a mother (I presume) and her little boy (I’d say no more than eight, but as Jessica will tell you, I’m horrible at judging kids’ ages; Namine’s size throws me off) walked by.
“Mommy,” I heard him say loudly, “what’s wrong with her legs?”
You can imagine the look of absolute horror on this poor woman’s face. While the thought (though perhaps not as crudely phrased) likely occurs to nearly everyone who meets Namine, she obviously would never have said such a thing out loud. She quickly stammered out an apology to me, but I shushed her.
It would have taken too long to explain my thoughts and feelings on the matter, so I simply said, “It’s not a big deal, kids just speak what’s on their mind.” A thought occurred to me, so I asked her, “Can I tell you about my daughter?” She nodded.
“This is my daughter Namine,” I said, and encouraged Namine to say hi. She waved, each hand full of food and a big smile on her face. She loves seeing other children, no matter the age. “When she was born, her legs were made different than yours or mine. They’re smaller, and they’re not as strong as yours. She has braces around her legs to help her learn to walk.”
The little boy looked distressed. “Do they hurt?” The honest answer is more complex than I would be willing to burden him with, so I said no, they didn’t hurt. (And the braces themselves don’t hurt Namine, really; it’s her feet themselves that hurt constantly, which I suspect is because they are constantly fighting their new position.)
“I hope she can walk someday,” the boy said. His mom looked proud, and I think she teared up a little. She said goodbye and that she hoped we had a good day. I wished her the same.
I didn’t set out that afternoon to spread awareness of caudal regression syndrome. I don’t stand outside on street corners; I don’t run a ministry. I’m no hero; I’m certainly not much of a role model, and a poor one at that.
I just want to tell you about my amazing daughter, if you’ll listen.