3.11.2014

perfect storm

By now I’d usually have seen it rolling in for at least a couple of days. We’ve got pretty much every element that makes for a perfect storm, a seizure: the barometer is nearly spitting blue from its spout the pressure is so low; the full moon is inching its way here in less than a week. it’s day nine—a recent average between seizures. So, too, has Calvin been sick these past several days, first with a fever and for two days now his temp has dipped below 97 degrees for hours at a time—with mottled skin and goose bumps to prove it—though he’s bundled up in fleece and the house is amply warm. And yet the kid is calm, perhaps suspiciously so. He isn’t whining when he wakes up. He isn’t coughing or screaming trying to dislodge his burps. He isn’t dropping down at a moment’s notice in stubborn refusal. He isn’t flailing on the changing table or in the bath. Come to think of it, he didn't have a seizure as the result of the fever. He’s simply calm, affectionate, seemingly happy and content. However, he woke early, seems a bit spacey today and doesn’t want to nap, none of which are very good signs.

The other night I watched Robert Redford’s film All is Lost. At times I thought I was watching my life in metaphor. In it, the rugged guy has a good, clean, solid boat equipped with everything he needs to sail around the world by himself. It’s clear he knows what he’s doing, has the experience necessary, is creative and resourceful. The skies are clear, the air calm. But, in the middle of a vast sea miles from land, by chance he runs into a snag and takes on water. The rest is a beautiful illustration of his relentless struggles, and as I watched Redford get bashed and torn by the sea, I felt my own exhaustion from taking care of Calvin.

Redford's character writes this as part of a letter to loved ones:

I fought ‘til the end, I’m not sure what that is worth, but know that I did. I have always hoped for more for you ...


I feel you man, I thought to myself, Calvin in the next room floating deep in sleep as I listened for his next seizure to announce itself over the baby monitor slung around my head.

Who knows if the homemade cannabis oil that we recently started giving Calvin will slow the tide of incoming seizures or, as I hope, will stop them all together. So far we haven’t reached any rough spots and things feel pretty smooth, almost awkwardly so. I just hope that perfect storm stays off shore, because once it hits there's nothing much to do but hold my breath and wait it out.

photo by Michael Kolster

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