Like most parents I lose my patience. It usually occurs after the bazillionth time I’ve had to tell Calvin to stop biting the bookcase, the shutters, the window, the banister. He’s got a hairline fracture in one of his front teeth as a result of all his biting. I’m surprised he hasn’t broken a tooth off while trying to munch the cast iron radiator or the sink. Sometimes he drives me so crazy I scream until my throat gets raw and hoarse, though it takes a lot to get me there. And the poor kid, he can’t even help it. At eight-and-a-half he’s still stuck with the oral fixation of an infant thanks to hundreds of seizures and thousands of pills, tablets and capsules filled with mind-numbing chemicals that would flatten any adult like a pancake on a hot griddle.

For whatever reason I woke up with the blues and it went downhill from there, perhaps because of my perpetual state of sleep deprivation, perhaps hormones, though more likely the antics of my daffy kid. The blackness creeps over me without any warning and I emit a mood so strong—like garlic seeping out of my pores—that it, and my barking, shoos our dog Rudy into the next room. When Michael sees me like this he first tries to cajole me out of it with jokes and if that doesn’t work he’ll ditch his plans to put some weekend hours in his studio in exchange for spending extra time with Calvin and me.

The weather was stellar, warm and windy, perfect for the neighborhood kids sitting behind a low table selling lemonade and chocolate chip cookies. Michael crossed the street first holding Calvin’s hand and called Rudy to follow, while I straggled along behind them with a little black cloud looming over my head. Once across the street I grabbed Calvin’s other hand and we coaxed him up the broken sidewalk trying everything in our power to thwart his ceaseless staring at the sun and his fierce desire to drop to the ground like a stone or wilt in our arms like some water-logged rag doll. Eventually, Michael had to pick him up and carry him, which he has to do often, especially if we want to get anywhere.

At the lemonade stand Calvin stumbled over to a handsome redheaded boy, Lane, and hugged him as Michael held Calvin’s harness as if suspending a marionette. In the process Calvin slimed Lane’s face with a big slobbery mouth, perhaps trying to give him a kiss. Lane, only a couple of years Calvin’s senior, and who has known him for years, remained patient and kind in the face of our goofy little kid who was completely mauling him with affection.

After our cookies and lemonade, we buckled Calvin into the stroller for a short walk across campus. We staked out the only bench on the grounds, right next to a young father and his babbling baby, who must have been no more than six months old, making sounds I’d never heard coming from Calvin. Perhaps to make myself feel better I remarked on what a happy day Calvin had had and how, having spent most of it with Michael, my mood was much improved, my patience reserves recharged, if only a bit.

On the walk home, I thought about my previous ugly, annoyed mood toward a son so innocent and pure. “I wonder if parents of dying children treat their kids any differently?” I asked Michael, then added, “If I knew Calvin was going to die, would I still lose my patience?” The thought stuck with me for the rest of the day.

After Michael finished making dinner for us—again—we sat down with our roasted salmon nestled in a sauce of blueberries, sautéed shallots and white wine, and popped in a film. In an offbeat and humorous manner, the movie (which I won’t name here so as not to be a spoiler) explores life’s differing perspectives, particularly playing brother against brother, wife against husband, mother against son, fate against chance. The characters, all of whom are beautifully crafted from one scene into the next, each have a rare blink-of-an-eye opportunity to taste a bit of what life would be like if one of their most beloved had died. At the end of the film they all hang in a white-knuckle limbo skirting the edge of the unknown, the edge of tragedy, of loss, of death. The intensity of the scene made me gush tears, flooded me with heartbreaking thoughts about what it might be like to lose Calvin.

When the movie was over we headed downstairs to clean up. Silently, I ran cool water over blueberry-stained plates and loaded them into the dishwasher in neat rows. I heard Calvin rustle in his sheets and make a little sigh. I turned the movie over and over in my mind, the mix of emotions it explored—rage, aggravation, worry, love—and I realized, hoped, that in my most fragile moments of anger and frustration, perhaps I can have a bigger slice of patience for a boy who, though he drives me batty at times, I’m not so sure how I could live without.

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  1. Sometimes, when I read your words, I feel as if you are a kindred soul. I think one of the things I've learned on this journey, or at least become quite adept at is the ability to hold very opposing thoughts in balance. It doesn't seem possible, but it happens.

    P.S. And I'm very curious about that blueberry sauce -- how did he make it? :)

  2. I too, sometimes have thought of our son as a burden, and felt guilty about it. Then I had a dream that he died, and I really have appreciated him much more ever since. A lot of work, but a lot of reward. I am so proud of him for having a good attitude thru all his struggles and he has touched lots of people, as I am sure Calvin has too.