friday faves - to breathe

A short while after Calvin was diagnosed with epilepsy, when he was two, Michael and I escaped up the road a bit to have dinner with some friends. I remember the drive along a snaking route that hugged the river, worrying about Calvin who we’d rarely left behind and, though he was in the care of a nurse, I found myself tensely holding my breath.

The trip seemed forever, hard to get my mind off of our son, but we finally pulled into the gravely drive and climbed the stairs to greet our hosts. Inside, our friends cupped glasses of wine and champagne and before too long I had my own. Michael and I huddled up to the island on tall stools hovering over appetizers fit for a king. My friend Uli had fashioned hand-rolled tuna maki with sticky rice and spicy mayo wrapped up in dark wrinkled seaweed sheets. I felt the warm alcohol buzz melt over me, felt my legs get deliciously heavy and relaxed. I took a deep, refreshing breath and exhaled.

My lovely host and her husband, who we were enjoying getting to know, were pregnant with their first child. They kindly asked about Calvin so we filled them in a little about his challenges and his seizures but tried to keep the conversation short not wanting to incite fear into the minds of soon-to-be parents. She told me about a collection of essays she was reading, essays about mothering against the odds. In the book, she went on to say, was a piece by a mother of a disabled child that she thought was very good and that I might be interested in reading. Immediately, my guard went up, the brick wall of cynicism I’d formed like a shell around my delicate innards. She can’t know what I think or feel about my disabled child, I thought, she isn’t even a mother yet, much less one of a kid missing part of his brain. I feigned interest, didn’t take the book. “I’ll copy it for you and send it,” she said. “Thank you, that’s very kind,” I offered, sure that I had no interest in what the author might have to say but appreciative of my friend's kind—though, in my mind, naive—gesture.

We gathered around the dinner table for homemade pad thai with peanut sauce and huge succulent pink shrimp. Wine poured freely as the five of us laughed until our faces ached. Although we were sad to leave our happy hosts, and reluctant to step out into the frigid fall air, we were happy to be heading home to Calvin.

A few days later a large amber envelope arrived. I untaped its mouth, pried open the butterfly closure and fished out the stapled copy of the essay. “’Exceptional’ Mothering in a ‘Normal’ World” by Miriam Greenspan. I sat myself down on the couch and started reading. Throughout the essay my thoughts drifted to the friend who had sent it to me, to her angelic face and shining golden curls. Thinking about her made me cry, finally understanding her capacity for compassion, and for recognizing that the essay might resonate for me. Indeed it did.

The child in its pages was a lot like Calvin, the grief and hardship of her family a lot like ours. At once, reading the author's words, I realized I wasn't alone in the world—this bitter cold world—of seizures, ambulances, hospitals, sleepless nights, therapies, drugs, needles, x-rays, body braces, pneumonia, gawkers, fear, despair, stress, grief, loss, marginalization, disappointment, worry, uncertainty, heartache. Finally, I felt I could softly lay down my head—as if on my friend's shoulder—and finally begin to breathe.

Originally published 09.23.11.

detail, photo by Michael Kolster

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