i can relate

The New Yorker cartoon caption contest, Roger Ebert, Chicago IL

silver hare

My friend and kin Jon with his young son Jesse, Calvin’s fourth cousin, found a dying hare by the side of a New Mexican road where they now live. It had probably been hit by a car and was breathing when they peddled their bicycles up to it. The two laid it in an adjacent field, which I imagined flat and expansive, grasses glowing golden under a vast cloudless western sky. It died there, its silver body gracefully sinking into the terracotta earth. He sent me a photo. I haven’t been able to get the image out of my mind. Somehow it reminded me of Calvin. So beautiful. So defenseless.

In the photo the hare, willowy with a soft fair coat, lay in Jon’s careful hands, its large apple-sized head resting gently, cradled in a slightly soiled rag. I think it was still alive.

When Calvin was born I was swimming deep under waves of anesthesia, my platelet count too low—having given some for Calvin—to risk an epidural bleed. The surgeon, though I pleaded, wouldn’t allow Michael in the operating room since I’d be unconscious, so neither of us witnessed the birth of our only child, nor did I experience my newborn babe lying warmly on my breast.

In the dim hospital room, where I had left Michael as they rolled me down the hall to emergency surgery, they brought him his newborn son. He’s recounted the story to me several times, but since I wasn’t there I can only imagine by piecing together his details like a collage in my mind. Calvin was tiny and swaddled in cloth, not quite five pounds, with a little knit cap swallowing his head. He surely was as supple and lithe as that hare, though much, much smaller. The doctor handed him to Michael just minutes after his birth, so fragile, and—like that hare—teetering on the verge between life and death. As quickly as Calvin appeared he vanished, whisked away to a world of respirators, monitors, leads, alarms, needles and tubes, dangling in a vulnerable limbo, delicately cradled in a caring stranger’s hands.

photo by Anna Hepler

grandma’s album

Shortly after my grandmother died at the age of ninety-five—just two years before her son died—my dad tugged a large trunk out of a downstairs closet. He told me to go through the things she had left in it and choose whatever I’d like to have.

The trunk was a dark wood lined with thin brittle tea-stained paper, bubbling and separating from its edges. In it were several empty wooden frames, a few purses, a rosary, handkerchiefs, gloves, a bible and other knickknacks you’d expect to find in a musty old trunk owned by a woman born in 1899.

I chose one of the rosaries, not because I was raised Catholic—I’m not religious at all—but because of its beauty and the knowledge that my grandmother’s supple, thin-skinned fingers ran over its beads. Then a red velvet booklet caught my eye, slightly smaller than a half sheet of paper, about an inch thick with rounded corners. A decorative font embossed diagonally across the front reads “ALBUM” surrounded by what were velvet curlicues and sprinkles, though long worn thin and threadbare from being handled. An old piece of shiny amber tape secures a tear on the inside page where my grandma wrote her name in the familiar cursive I remember from her correspondences to me. The opposing page is prettily adorned with three delicate budding tea roses.

Most of the book’s pages are empty, though the beginning is filled with various quotes, all written in my grandmothers hand. The first is about the affects of the caustic tone of voice and is attributed simply to “mother”. Following are quotes from Emerson, Longfellow, Buddha, Confucius, Mohammed, Plato, Goethe and President John F. Kennedy. Brotherhood, kindness, love, self-discipline and hope are common themes. One of my favorites reads:

“If I keep a green bough in my heart, the singing bird will come.” - Old Chinese saying

I’ve read these quotes many times, lightly touching the yellowed paper and faded black ink, always remembering the common thread of biology that runs from her through my father then to me. I wish I had known her. I really didn’t. She lived so far away. I only know she had Spanish blood, bore two sons, was well read though not college educated, played the guitar on the radio and lived in San Francisco, as did I. But through the selection of passages she has transcribed I realize we are so alike, and that feels wonderful. I have continued to write favorite poems and quotes in the album. I only wish Calvin could, one day, read them all and add his own. Something else to dream about.

My dad and Grandma with one of my brothers

good husband

Michael cooks, he cleans, he shops for groceries. He brings home the bacon and pays the bills. He finds the music and plays it. He pours me wine. He's an amazing dad. He gives me loving smiles. He says “I’m sorry.” He does the laundry. He changes the oil. He looks good in an apron. He makes me very happy.

He plays vinyl records—loud. He takes me to dinner. He's my best friend. He has a good sense of humor. He gives me compliments. He's very forgiving. He laughs at my jokes. He takes incredible photographs. He views the world in ever changing ways.

He works harder than anyone I know. He gives Calvin tons of hugs and tickles and kisses. He has an amazing vocabulary. He teaches me plenty. He recognizes his limitations. He loves his parents. He loses at cribbage. He rides a vintage motorcycle in a cool brown distressed leather jacket. He fixes anything and everything. He is humble.

He digs Frank Zappa. He's one of his students’ very favorite professors. He makes strong coffee. Kids and animals love him. He paints things. He reads interesting books. He has super friends. He enjoys simple pleasures. He wrote the music and lyrics for a song on his guitar and he plays it over and over. He loves me unconditionally.

I couldn't imagine raising Calvin with anyone else but Michael.

sunday nap

On Sunday, Calvin was having such a good day, but by naptime it became clear it was too good to be true. Michael put him down and brought me the baby monitor. Tied to a thin warn ribbon, I slung it around the crown of my head, dangling just beside my ear so I can hear subtle changes in Calvin’s breathing and movement.

I am always on alert during the first twenty minutes of Calvin's nap, and if I suspect an ensuing seizure I sit upstairs with him until I know he’s out of the woods. He was doing so well I stayed downstairs to make us some lunch. But ten minutes after Calvin went to sleep I heard him move ever so slightly—that’s all I needed to know that something was amiss. I scaled the stairs by twos and pulled the duvet from his face. He turned to look up in a disoriented semi-conscious daze, his patchy red cheeks and blue lips giving it away—another frigging seizure. And this one just three days after increasing one of his antiepileptic drugs and having increased his other medicine several times since January. More seizures. More drugs. More seizures. More drugs. It sickens me.

Every seizure crashes into my heart and bores a gaping black hole nothing can fill. Outside, what began as a glorious day, the sunshine glinting off of nightfall’s raindrops, became bleak and oppressive, dark clouds hanging heavy in the sky, bright colors subdued in a cloak of utter drabness. The chilling wind quivered leaves so much like Calvin’s tremors. I wonder if things will brighten, lighten. Will there ever be an end to all of this miserable sunless heartache?

But then I looked out the window, thinking it had begun to rain seeing sprinkles in the street puddle, but it was a blue jay bathing, dipping its head and flapping its wings gloriously in the cool water. Its mate appeared and I could see them perched high in our tree, silhouetted against a brilliant white sky. And as I leaned forward to see the pair, the sharp crimson of a cardinal peeked from the shadow of green rhododendron leaves. The day had brightened, though only a little.

Today, Monday, he had a bizarre day. I suspected another naptime seizure. It didn't come. It decided to come ten minutes after he went to sleep for the night, which almost never happens. It kills me.

The clouds are back, the sun is down and it's raining ... again.

Please, please share Calvin's story. We desperately need a cure for epilepsy.

photo by Michael Kolster

school days

When I was a kid my parents never allowed us to cuss or say “shut up” or “hate” or “spastic” or “retard”. Even as a youngster these rules seemed like good ones, though one of my brothers relished using them on me anyway. Not to worry. I could take it.

Up until third grade my mom drove me and my brother to school in our squeaky 1960s sky blue and white Chevy Impala Bel Air. She’d drop us at the curb and I’d run to class, my salt and pepper plaid pleated skirt, white blouse and carmine wool sweater vanishing into a sea of scampering clones. Matching boys and girls were greeted by nuns, some with thin silvering hair pulled back tightly into buns accentuating sharp noses, their manner and facade equally austere.

In fourth grade I started attending public school, freeing my mom of her early morning drive. At the top of our gravel road I’d wait under the cover of a small shack until boarding a yellow bus elbow to elbow with my best friend Monica. We’d bounce happily in our seats, steaming up windows chit-chatting away. When the bus pulled into the Robinswood Elementary School parking lot, twenty rowdy kids tumbled out onto the pavement and scattered like so many leaves.

On the far side of the parking lot sat a lone one-story building boasting the same cinder block design as the main school. But inside it was different. Inside dwelled the Special Ed kids. We really never saw them up close, just got fleeting glimpses from afar. The kids were in wheelchairs and walkers, limping, drooling, yawning, recoiling. The mean students called them retards, spazzes. None of them were my friend, I didn’t know their names or recognize their faces. They were nobodies to me, sequestered to a special building, a special short bus, a special life hidden and unknown to me. My memories of those students are so vague, having had little to no exposure to them. Sometimes I wonder if they really existed.

Now days it’s different—disabled children, Autistic Children, children with cerebral palsy often mainstreamed with the “typical” kids, the “normal” kids, the ordinary kids. Calvin participates in a class like this for part of his school day. The other kindergartners love to be near him, to read to him, to somehow befriend him.

One day I brought Calvin to school after a doctor’s appointment. He was in my arms as I was saying goodbye and a string of his fellow kindergartners marched on past. When they saw Calvin each of them waved and, like a gaggle of geese, chirped “hiiiii Caaaaaaalvin!” My nostrils stung and I started to cry. My boy finally had some friends, some other kids who truly showed an interest and fondness for him. I'm glad he's not shunned or hidden or shamed like in the days when I was a kid growing up, back when my brother called me a retard.

guilt

No matter what people say, when your child is born with some kind of serious disability, syndrome, birth defect—or perhaps doesn’t survive at all—there comes guilt. Serious guilt. No, I haven’t spoken with all of the women in the world who have suffered this kind of hardship. I’m just making an educated guess.

Two weeks before Calvin was born my husband Michael and I learned, during a sonogram, that he had significant neurological complications. He was missing a lot of his white matter—a lot. White matter is the brain’s superhighway, as it’s been explained to me, the way the brain communicates with its various parts and with the body. We need it ... bad.

Before Calvin was born the doctors initially thought they saw evidence of hemorrhaging that might have caused further trauma to his brain. After Calvin was born that theory was debunked, though I always wondered if the doctors were just playing nice to make me feel better, you know, assuage my guilt over somehow causing a hemorrhage.

Since then I’ve racked my own brain for what might have gone so terribly wrong. Did I swim too hard too fast too long? Did I rest enough eat enough drink enough sleep enough walk enough?

Maybe I shouldn’t have dived into that pool drank that bit of wine ate that cheese pet that dog taken that flight worn those pants gotten that cold had that sex slept on my back gotten pregnant so late had that amniocentesis.

My friend had a son with some very serious complications. I'm not sure the doctors ever completely figured it out and therefore were never able to fully relieve his intermittent misery. Having never met my friend in person—only commiserating over the phone or in emails—she told me she thought, at one point, perhaps her son was afflicted as the result of her poor posture, being a woman of tall stature. While assuring her that couldn't possibly be the case I also validated her concern, which I knew came to her naturally. There’s no getting around it. Guilt. It’s just what we do.

photo by Michael Kolster