8.10.2013

familiar oddities

He pranced and cooed and shrieked and flapped, all in a pair of colorful swimsuit trunks. Even in August, the river, the mouth of which mingles with the ocean, felt frigid. The boy dipped his toes into its clear green-blue as it lapped up onto the beach. The scene was delightfully odd to witness. “He must be about fifteen, right?” I’d said softly to Michael as we strolled down the shore, the boy receding behind us chirping and cackling, the beach stretching out in front and the sky painted in gossamer clouds.

The youth, who was dark blond, lanky and nearly as tall as I, was monkeying around like a toddler, excitedly racing back and forth between the water’s edge and his mother who was spreading out a towel on dry sand. I wanted to look back but I didn’t dare gawk. Seeing the teen made me imagine how Calvin might be at that age, made me wonder if in four or five years he’d be walking by himself, if he could play at the beach without eating sand and driftwood, without flopping onto the ground in a fit, without staring incessantly at the sun. I wished as much.

Michael and I ... we’ve developed radar of sorts, the kind that can spot developmentally disabled kids—kids I like to call extraordinary—from a mile away. There’s a warm, knowing feeling when we do, a comprehension that we’re not alone on our journey raising Calvin. “Did you see that kid?” I find myself asking when we exit the grocer or cross the street or enter a diner, and we smile at each other, at our glimpse of familiar oddities, but also in solidarity of the heartache, the burden, the ridiculous joy, the suffering, the marginalization of it all.

And the parents of these boys and girls, ones with Autism or Angelman’s syndrome or Down syndrome or Rett’s syndrome, these kids with epilepsy who, because of their seizures, have lost their opportunity to live a normal drug-free life, are doing it. They're doing it happily and are seemingly well adjusted. But they’re not doing it alone, and hopefully they're cognizant of that and have others who they can lean on when the going gets rough, like we do.

We continued down the beach and back watching child-free couples walking hand in hand and teens playing beach Ping-Pong and girls with tattooed shoulders sunning themselves with their dogs and dogs peeing on sandcastles and sandcastles melting into the surf. And I thought of Calvin at home with his nurse splashing in his tiny inflatable swimming pool, having his diapers changed and his pills spoon-fed and his body bathed and his tumbles intercepted and his little neck hugged and somehow, without him there, I felt all alone.

2 comments:

  1. This is lovely and poignant, and the photo at the end fits it just perfectly.

    ReplyDelete