Every weekday, just past twelve-thirty, Calvin’s bus pulls up to the end of our drive. Mary, his one-on-one, hands him over, his floppy, clumsy, heavy body awkward to handle coming down the stairs toward me. She tosses me his lunch box and satchel then we walk hand-in-hand across the lawn as I call goodbye to his driver, Cindie, from over my shoulder while gripping Calvin's wrist firmly to keep him upright.
In the zippered pocket of his threadbare, floral satchel—a backpack really, but one he can’t wear—I usually find a series of folded colored papers. I look at them all fleetingly. A red one advertises the school’s family pizza night, a yellow paper tells about visiting artists, a blue one that describes a read-a-thon might double as an order form for first-grader books, an orange one talks all about the Halloween parade and after-party that we won't be attending. One by one I toss them all into the recycling bin—Calvin won't be participating. The one I keep, at least for momentary reference, and read in detail, is the one that Mary fills out describing Calvin’s day, what therapies he received, how he did, how much water he drank, how his balance and behavior were and the time, size and consistency of any bowel movements he might have had, (he's prone to constipation because of his low muscle tone, and I must manage it closely with medicine.)
On somewhat rare occasions artwork comes home. Often it’s a drawing, or two, from some of Calvin’s classmates in his mainstream homeroom. Once in a while I’ll get to unfold a work of art that Calvin “made” with help—perhaps a huge, tangled scribble on a page, a cut-out in the shape of his hand made into a turkey, a colorful paper jellyfish with crepe ribbon tentacles. Even though Calvin did little to no work in making these keepsakes I know his precious hands were on them, even as Mary’s were guiding them like a puppet’s.
Each one of these gems that has come home from school with him I’ve saved in a slightly unruly pile shoved into our buffet cabinet along with wads of colored tissue, recycled wrapping paper, raffia, small ornamental gift bags and rolls of iridescent curling ribbon, all anchored into place by a stack of board books that Calvin doesn’t look at anymore. I imagine most parents keep their children's masterpieces just like my mom did, neatly printing my name in black felt tip marker on the lid of a misshapen shoebox. My mother and I enjoyed pulling each dusty faded, crinkled creation out of a long-forgotten box fished out of the basement when I was in my twenties.
But I don’t hoard these sweet, colorful crafts to give back to Calvin when he’s grown. I keep them to look at later, in the case he dies before me. It’s a morbid thought, I know, but not one that is unrealistic or out of the realm of possibility in the world of epilepsy. And certainly when I began collecting them the chance of his premature death seemed very real to me. After all, we came so close to losing him when he was just two-and-a-half during a seemingly unstoppable, forty-five minute seizure.
When I was in my thirties I remember grieving my father’s death every single day in the year before he actually died. I knew the cancer was eating him alive. He was losing weight, suffering pain in his jaw and sternum, catching pneumonia, going to the hospital, taking more and more morphine. I could see it coming, and grieving the gradual loss of him by bits and pieces, day by day, while he was still alive seemed to make the tragic thrust and impact of his death somehow easier.
It’s possible I’m doing the same thing by mournfully saving Calivn’s happy scribbles and each gluey, glittery scrap his grubby little fingers have patted. Maybe I’m preparing myself for the worst while still hoping for the best. But perhaps, once in a while, I should pull out that disheveled pile of decorations and doilies and, instead of seeing them as an ominous heap of bittersweet fortunes, I’ll try hard to purely—simply—smile at the papers that bare Calvin's precious mark.
In the zippered pocket of his threadbare, floral satchel—a backpack really, but one he can’t wear—I usually find a series of folded colored papers. I look at them all fleetingly. A red one advertises the school’s family pizza night, a yellow paper tells about visiting artists, a blue one that describes a read-a-thon might double as an order form for first-grader books, an orange one talks all about the Halloween parade and after-party that we won't be attending. One by one I toss them all into the recycling bin—Calvin won't be participating. The one I keep, at least for momentary reference, and read in detail, is the one that Mary fills out describing Calvin’s day, what therapies he received, how he did, how much water he drank, how his balance and behavior were and the time, size and consistency of any bowel movements he might have had, (he's prone to constipation because of his low muscle tone, and I must manage it closely with medicine.)
On somewhat rare occasions artwork comes home. Often it’s a drawing, or two, from some of Calvin’s classmates in his mainstream homeroom. Once in a while I’ll get to unfold a work of art that Calvin “made” with help—perhaps a huge, tangled scribble on a page, a cut-out in the shape of his hand made into a turkey, a colorful paper jellyfish with crepe ribbon tentacles. Even though Calvin did little to no work in making these keepsakes I know his precious hands were on them, even as Mary’s were guiding them like a puppet’s.
Each one of these gems that has come home from school with him I’ve saved in a slightly unruly pile shoved into our buffet cabinet along with wads of colored tissue, recycled wrapping paper, raffia, small ornamental gift bags and rolls of iridescent curling ribbon, all anchored into place by a stack of board books that Calvin doesn’t look at anymore. I imagine most parents keep their children's masterpieces just like my mom did, neatly printing my name in black felt tip marker on the lid of a misshapen shoebox. My mother and I enjoyed pulling each dusty faded, crinkled creation out of a long-forgotten box fished out of the basement when I was in my twenties.
But I don’t hoard these sweet, colorful crafts to give back to Calvin when he’s grown. I keep them to look at later, in the case he dies before me. It’s a morbid thought, I know, but not one that is unrealistic or out of the realm of possibility in the world of epilepsy. And certainly when I began collecting them the chance of his premature death seemed very real to me. After all, we came so close to losing him when he was just two-and-a-half during a seemingly unstoppable, forty-five minute seizure.
When I was in my thirties I remember grieving my father’s death every single day in the year before he actually died. I knew the cancer was eating him alive. He was losing weight, suffering pain in his jaw and sternum, catching pneumonia, going to the hospital, taking more and more morphine. I could see it coming, and grieving the gradual loss of him by bits and pieces, day by day, while he was still alive seemed to make the tragic thrust and impact of his death somehow easier.
It’s possible I’m doing the same thing by mournfully saving Calivn’s happy scribbles and each gluey, glittery scrap his grubby little fingers have patted. Maybe I’m preparing myself for the worst while still hoping for the best. But perhaps, once in a while, I should pull out that disheveled pile of decorations and doilies and, instead of seeing them as an ominous heap of bittersweet fortunes, I’ll try hard to purely—simply—smile at the papers that bare Calvin's precious mark.
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| photo by Michael Kolster |
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