I’m afraid. I’m afraid because I’ve brought a child into the world who may never develop the life skills to care for himself. I’m scared because I can’t promise him I’ll be here tomorrow and we’ve lost six long years to not knowing. Six years to denial. Six years to “it’s just a little speech delay.”
I’m scared of that word. Retard. I’m scared of hate, and exclusion and closed minds. I’m scared of you.
His big sister, Cleo, is smart. The kind of smart that worries me. The kind of smart that if it can’t find it’s purpose might just flail wildly in the world and never make a mark. She’s fascinating. And she’s in a perpetual state of existential crisis. Most nights when I lean in to give her a goodnight kiss she whispers her fears in my ear. “I don’t ever want to die. I don’t want to get old. I don’t want to grow up.” I could do as her dad does and joke that she doesn’t have to. “Then don’t!” he’ll say. “I certainly don’t plan to.” And he laughs. But she knows it’s a lie. So I just squeeze her and remind her again that she won’t have to worry about these things for a very long time. A half-truth.
Then it’s time to say goodnight to Huey. I lean into his bed and he wraps his little arms around my neck, his fat cheek pressed against mine so that it hurts, his stout little body rigid and sincere. I can feel his hot breath on my neck, and he whispers something about monster trucks. I tuck him in and reassure him that he may play with his trucks again tomorrow while my heart whispers a prayer. “Please, little man…don’t grow up just yet.” And now we know that he won’t. Not in the ways that it matters.
“Nobody does ‘wonder’ quite like Huey,” Andy says, and it’s true. If you want to see the beauty in a day I know just the guy you should spend it with. And he’s kind. Not in the learned way that kids are kind. When they’ve mastered the art of sharing, and learned how their words can hurt. Bear finds joy in the sharing, and this is what scares me most.
I’ve learned to be Huey’s advocate, his teacher, his planner, his seeker of answers. These things I can do with confidence. But I’m afraid I won’t be able to protect his sense of wonder in this world that seeks to steal it away. Will I be able to shield his extra squishy heart from those who would see it calloused and broken? Will I be able to protect his joy?
The evidence is flimsy. Just last week at the lunch table a group of boys insisted Huey had whispered a swear word in someone’s ear. It seemed plausible. Swear words are cool and Huey doesn’t yet fully comprehend how they can be hurtful. But the boys seemed a bit too giddy, so I turned to Huey and asked him what he’d said. He grinned with embarrassment, drew his chin to his chest and confided that he’d whispered to his friend “I love you.” When my other children were six I’d have wondered if this was a poorly concocted lie. On this day I didn’t. It wasn’t. So I scooted him closer and told him that “I love you” is the most lovely thing you can say. Then I offered him some ice cream. But I wonder, should I have said something to those boys? Called them out? Was I enough in that moment? Will I ever be enough?
I can’t say what the future holds. And we’ve barely begun to understand what it means to prepare a child with intellectual disability for a lifetime of challenge. But we’ve turned to face the thing from which it is human nature to turn away, and we’ve found that this simple truth remains; Our son is beautiful and worthy, and he’s going to need an army of us to carry him.
If there was ever a case for having five children this is is it. Thank the universe for poor planning and romantic notions. Huey has a built-in army of superheroes.
I’ve spoken to his siblings. They know. I think they knew before I did. Kids are like that. I consider the parts that he will borrow from them; Cleo’s pluck, and Aidan’s wit, and Maeve’s arms wrapped around him, with her matching heart, and grit that dares to be reckoned with, and I feel soothed. I imagine them together on the day that I am not here, holding each other up. And I am a little less afraid.
Look at it with us, will you? This thing called Intellectual Disability. Look into its eyes, the same deep purple where you will often find stars. Hold it tight when the moment calls, and see what it has to give you back. And when it whispers “I love you” in your ear, know that this comes from a place of the deepest sincerity. Cherish it.