Partway through reading my friend Chris Gabbard's recent memoir, A Life Beyond Reason, I came across the word grace, and was emotionally stunned. Chris uses it to describe a commitment he made to raise his son August with as much poise and kindness as he could muster. August, like Calvin, had cerebral palsy and was legally blind, non-verbal and incontinent. Unlike Calvin, his condition was the result of injuries he suffered during a medically negligent and reckless childbirth. Reading the word grace, I felt a deep sense of shame and regret, since too often when caring for Calvin, any semblance of grace I might be able to muster, inevitably goes out the window. And though I can blame any number of reasons for my graceless behavior—sleep deprivation, agitation, resentment, monotony, grief, impatience, anger, frustration—I still feel remorseful of my inability to be wholly graceful when caring for such a pure, affectionate, faultless little kid.
In the heat and humidity of early evening while strolling alone in the garden yesterday, Michael having gone to Boston for the night, I heard, via the baby monitor slung around my head, Calvin banging the wall behind his bed. I made my way up to his room and was greeted by the stinky news that he had pooped. After unfastening the safety netting and side panel of his bed, I first sniffed his fingers. Yep. He had put his hand down his diaper and into the shit ... again. Exasperated, I grit my teeth. I wiped him up, gave him a new diaper, and spread copious amounts of sanitizer on his hands. All the while, I bitterly and openly lamented the fact that, despite how often this happens and no matter how many ways I try to explain to him why he shouldn't do it, it never seems to sink in. I rubbed his palms and fingers down, cleaning underneath each fingernail with half a dozen baby wipes. I changed his pants and shirt, which were both wet, then put him back into bed. When laying him down, I noticed a brown splotch on his clean sheet and another on the wall above his head. I tried hard to contain my vexation, tried to emulate my friend Chris, and to act with grace. But in my state of cumulative and acute sleep deprivation, plus a certain kind of traumatic stress disorder from fifteen years of rearing a boy with chronic epilepsy who it still a lot like an infant, I lost my head.
I screamed at the sheet, at the walls, at the bed, at myself, at my son. Luckily, Calvin remained visibly unfazed. No doubt, however, with all the windows open, any passersby or neighbors could have heard my ugly distress. The grace I tried to hold in my body's vessel, in my brain and spirit, went right out the window instead.
I apologized to Calvin and to Nellie. I should apologize to the neighbors just in case. I forgave myself for the eruption which came on the heels of a buildup of worry, frustration, pressure and tension. But when I woke up this morning, I was uniquely aware that I hadn't spent the night clenching my teeth.