lucky couples

Need I tell you, this runaway pandemic is taking its toll. Days are long(er) and monotonous. Calvin hasn't been in school since March; he won't keep a mask on his face and we can't risk him getting Covid and bringing it home. He can't even remotely access a remote non-academic education, mostly because he is incapable of attending to a screen, but also because it is yet unclear what simple abstractions—like interpreting a talking head on a small monitor—he can comprehend (not to mention he bites and chews and bangs the crap out of everything.) While other parents might wish their kids would get out from under their electronic devices, Michael and I pine for a day when ours could sit quietly just to watch a movie or video so we could get something done. Instead, and likely due to drug side effects both current and residual, Calvin is pretty much in constant motion. He just can't sit still.

So, my days are spent with my son in tow, traipsing around the house and yard and sidewalk as long as there is not too much ice or snow. I give him a bath, feed him, go for long car rides looping along back roads with a few essential glimpses of the water to keep me (mostly) lucid. Every morning before Michael heads to his studio, and on most evenings if he gets home early enough, I walk Smellie to the fields, ducking into the wooded trails along the perimeter.

On these outings, I see lots of bicyclists, walkers and runners. I watch duos strolling along winding roads. I see couples walking frisky new puppies and lumbering mutts with grizzled muzzles. I see twosomes in their bright running and biking regalia pumping up gradual rises and flying down hills. My first reaction when I see these folks is one of solidarity; I'm glad people are getting out and about in all kinds of weather. Strangers or not, it's good to see them. Then, as they disappear over my shoulder or in my rear view window, I realize—during the pandemic—how impossible it has been for Michael and me to catch a break together as a couple. I realize that our friends virtually never see us alone together. Sigh.

Because Calvin can't stay home by himself like other teens, there's no chance for Michael and me to head to the forest or beach for a morning stroll together, no chance to grab takeaway burritos and sit on a park bench, or plan a seaside picnic. And the difficulty in doing so is not just during the pandemic. Our kid will never grow up. He'll never spend a day with a friend. He'll never go on a sleepover. He'll never take a job. He'll never go off to college or travel abroad. He may never even move out of the house.

If this sounds like a pity party, it is. I allow myself to indulge once in a while, though I'm not looking for sympathy; everyone has their struggles. And to be fair, dear friends of ours have offered to take care of Calvin while Michael and I go off on our own but, pandemic or not, that is easier said than done by either party.

So for now, at least, the four of us (we take Smellie everywhere) will climb into the car for our weekend drives. We'll put Smellie on the leash and Calvin in the stroller whenever we can get some fair weather. We'll hang out in our robes until late into the morning, sometimes listening to music, drinking extra stovetop espresso, eating eggs and toast or bran or oatmeal, watching pre-recorded late night comedy. We'll continue putting Calvin to bed before six, hoping he goes to sleep without too much trouble so we can enjoy a quiet evening together. And I'll keep taking my daily drive, feeding Calvin finger food from the driver's seat while spying other lucky couples making their way home or down the road a spell for a glimpse of the water.

Simpson's Point, almost noon.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

counting april

only one grand mal. ten partial (focal) seizures. seven days of fits. one new thca oil using two ounces of a new cannabis strain called mandarin cookies. zero thc? countless early risings. a dozen or more eight o'clock bedtimes. more gray days than sunny ones. several inches of rainfall. weeks on end of feeling like it's november. lots of smiles from calvin. one growing, sixty-seven pound, fifty-four inch teenager (first percentile). two kick-ass nurses and one kick-ass mary helping me. another eeg scheduled, first one in i don't know how long. one additional daily thca dose, mornings. lots of fingers crossed. much hope of reducing keppra. seven days since the last grand mal. two weeks until i visit the big apple. five rhododendron buds open. countless others swelling. one semi-seeded lawn. three birdbaths quenching birds and squirrels. one sheared goldendoodle. too many bats roosting in the eaves. one loving husband cooking infinite delicious meals. one new friend. this tired mama.

out on the ice

The ice on the pond is still two to three feet thick. Pickup trucks park on it. Folks speed snowmobiles and ATVs across its expanse. Fishermen, like my husband, drill holes in it from which to fish.

Thirty-five degrees and no wind to speak of, yesterday was mild. A glorious sun came out from behind the clouds at times. Calvin's kick-ass nurse, Rita, watched Calvin for several hours so I could get out of the house. Michael and I drove twenty miles, then trudged through deep snow to meet our friend Macauley who had set up shop in the middle of Pleasant Pond, which would be considered a lake where I come from. Almost immediately, we began catching fish from eight-inch holes: yellow perch, white perch, crappie, pumpkinseed. Michael caught a hog: an eighteen-inch small mouth bass. It flopped on the ice for awhile—its gaping mouth seeming to indicate its suffocation—until we realized it was too big and small to keep. Michael dropped it back into the hole, watched it float sideways, tail up, before it caught its breath in the frigid water then swam into the shadows.

A few hundred yards from us, a rowdy group had set up a tent and were manning several ice holes. The young men were roughhousing with the giggling kids, picking them up, shoving them and tossing them around. Their happy banter skipped across the snow. Though I was glad to have been unshackled from Calvin for an afternoon, I lamented his absence and all the reasons that made it so—his fragility, his chronic illness, his inability to walk in snow boots, to play and keep warm, his incessant staring at the sun, his incapability to understand what might really be going on.

After nearly three hours on the lake, my feet started getting cold, so we said so long to Macauley, who would spend the next several hours there catching more fish, watching the sun set, and then taking a long walk out on the icy lake after dark. I told him how luxurious that sounded, then I imagined myself—in another life—doing so.

birthday blues

Fifteen years ago today, as I laid on a stainless steel operating table being prepped for my emergency C-section, the busy doctor and nurses patted my legs and feet as they walked past. Their gestures, meant to calm and reassure me, worked. Then, within minutes, I fell under the spell of general anesthesia. Sometime later in a different room, I awoke in a haze, Michael beside me holding my hand. I felt a dull throb in my lower back and the ache of fresh incisions and sutures in my belly. As I looked around at the blurry world, my newborn was nowhere to be seen. Slurring my words, I alerted Michael of my pain. Instinctively, he launched into our hypnobirthing script, which worked to dull the pain and lulled me back to sleep again.

Later the next morning, I emerged from a morphine fog, eager to meet our son. Gradually, I sat up, careful not to pop the staples and stitches in my gut. I placed my feet on the waxed linoleum floor and gingerly lowered myself into the wheelchair Michael had fetched. He wheeled me down wide corridors and into an elevator which took us downstairs to the neonatal intensive care unit (NICU). Somewhere in the florescent-lit room, Calvin was sleeping in a clear plastic box called an isolette, the intubation apparatus that had assisted his frail lungs having recently been removed. We scrubbed our hands and forearms with soap and warm water, then donned paper masks before entering the room.

As we neared our son's station—unsettling bells and alarms ringing and buzzing periodically—we passed by several other isolettes, each housing its own tiny baby, some no bigger than my hand and weighing little more than a pound or two. All of the preemies wore adhesive leads to monitor their heartbeat, respiration and oxygen saturation, and most were hooked up with cumbersome breathing tubes. When we reached Calvin's isolette, I recognized him instantly. His moon-shaped face had red marks where tubes had been taped, and a tiny little furrowed brow told me he'd been stressed. His right hand and wrist were taped with a splint meant to keep his IV in place. I scooted up as close to his box as I could and peered in, marveling at my beautiful boy whose nose I thought looked familiar.

"Hi Calvin," I said softly, and my baby boy opened his eyes for the first time; he was twenty-one hours old.

This morning at four-thirty, on his fifteenth birthday, Calvin awoke to a grand mal seizure. He convulsed for over a minute. He bit his cheek and it bled. His breathing was labored and strident. Afterward, I crawled into his bed. There, I cupped his shoulder with one palm and laid the other on his hip; he rested one hand over my eyes and put his other around my neck. He slept.

While walking Nellie a few hours later, a friend drove past then pulled up curbside. She got out and we strolled a bit. We exchanged stories of life's struggles and of raising pubescent kids. As we embraced, I thought of Mary Oliver's gorgeous poem, Wild Geese. In it she says:

Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.

After we parted, she called to me before driving away:

"Happy Birthing Day, Super Mama!"

With a smile on my face and cleated rubber boots on my feet, I trudged home in the slush and sleet left from a mini ice storm that rolled through last evening. It reminded me of the morning Calvin was brought into world.

In honor of Calvin's milestone, please consider a contribution to CURE epilepsy by clicking here.

fallout

The night my water broke, an ice storm blew through Maine. Ice caked windows and froze shut doors. It sheathed leaves and needles and burdened branches. It glazed streets and sidewalks, treacherously.

I was only thirty-four weeks along in my pregnancy. A fortnight earlier, a bombshell had been dropped by a doctor who had shocked us with the news that my fetus had a brain malformation. Specialists in Boston, worried that a vaginal birth would stress our unborn child further, had arranged for a scheduled C-section to be performed at week thirty-five. Though I didn't feel any contractions, I quickly grabbed a few essentials and donned my down parka, zipping it up tightly over my basketball-sized belly. Michael kicked open the mudroom door which was encased in frozen rain, and we made our way, driving on desolate roads to our local hospital wondering how, in my condition, we'd get to Boston.

When the on-call obstetrician arrived at the hospital, we explained our predicament—our fetus' enlarged ventricles, his possible brain bleeds, the scheduled 35-week cesarean in Boston aside a team of pediatric neurologists and neurosurgeons, plus donor platelets readied if our newborn needed them. Unable to accommodate our serious case, she made arrangements for me to be transferred by ambulance to Maine Medical center in Portland. The ice storm had made it impossible for us to get to Boston; Medivac helicopters had been grounded.

Once at Maine Med, we explained our situation to another doctor, and a game plan was made. Without blood bank donor platelets in the case our fetus—who we had already named Calvin—suffered another brain bleed, I'd have to undergo a pheresis. In other words, I would be the platelet donor for my son if need be. Actively contracting, albeit subtly, I had to sit upright and motionless on a hospital bed for nearly an hour while my blood was syphoned, put through a centrifuge to extract its platelets, then pumped back into me. The pheresis left me with too few clotting platelets to safely undergo an anesthetic epidural without risking a spinal column bleed. Instead, I had to go under general anesthesia to endure the cesarean. As a result, despite my pleading, the obstetrician would not allow Michael in the operating room, which meant neither of us could witness the birth of our fragile son.

Sorrow and worry wrenched my heart. Everything Michael and I had hoped for, wished for and expected of our child's birth had vanished in a blink. Michael wouldn't hold my hand and offer reassuring words. We wouldn't hear our baby's first cries, wouldn't marvel at the sight of our beloved newborn. I would not clutch my babe to my breast, nor would Michael kiss my forehead as I looked into the loving eyes of a new father.

Instead, my body would become void of all senses. Neither of us would be participant, witness nor advocate. No photos, no videos, no memories would exist of the moment our son was born. I'd be left instead with the memory of kissing Michael goodbye and holding his hand as long as I could until we were finally broken apart. Of seeing him standing alone in an antiseptic room as a white-clad mob wheeled me under a tunnel of lights. Of the fear that I might never emerge from the anesthesia to see Michael's face again. Of perhaps never seeing my wee child alive and breathing.

Photo by Michael Kolster

too good to be true

"Godammit!" I cried, whipping the covers off and scrambling to our seizing child. It was the first of two grand mals Calvin suffered on either side of midnight last night.

I had been expecting a seizure for a couple of days, having seen many harbingers on Sunday, and more on Monday—my child's warm skin, his hyperactivity, mania, rashy butt, insane fingering, agitation, eye poking, jaw jutting, bumpy face. But yesterday after school Calvin was a dream. He walked well and waited patiently at the grocery store, ate a good dinner, sat happily in my lap giggling as I tickled him, played with his toys for a bit, went to sleep fairly easily with a huge smile on his face.

Calvin's good behavior was an inadvertent gift for Michael's birthday, a day my husband has never liked much. He prefers, in most ways, for his birthday to be a day like any other—no pomp, no fuss, no gifts, no attention. Instead, he made one of his favorite meals—stovetop spareribs braised in onions, white wine and serrano pepper aside creamy mashed potatoes and impossibly thin asparagus. After we ate, I brought out the mint chocolate Oreo ice cream cake I had made while Calvin was at school. Although we are both tired and overextended, it was turning out to be one of his better birthdays.

Regrettably, however, epilepsy has a way of ruining things—sleep, meals, celebrations, plans, hopes, dreams. Considering Calvin's good nature yesterday, the first seizure was somewhat of a shock; the second one, though half-expected because of the earliness of the first, a complete letdown. I told Michael that I had had a fleeting thought earlier that Calvin's good day might be too good to be true. I was right.

The three of us have been mostly awake since 1:30 this morning dealing with a wired child who doesn't appear to be out of the woods. After the second seizure, and for reasons I can never be sure of, Calvin spent several restless hours alternating between lying down and hugging me and sitting up with a rapid and pounding heart, clammy hands, trembling feet, and arms so crooked and fingers working so madly against each other you'd think he could spark a flame. Now he is in the jumper stomping, eye poking, fingering, clenching his teeth, and covering his ears, foamy drool bubbling down his chin.

Days like these nearly break me into little pieces. But there are things that save me from completely falling apart—writing, trying to focus on the knowledge that this too will end, gazing outside at the trees and shrubs turning orange, rose and yellow in the autumn sun, and listening to music hoping my son isn't winding up into another one. And gratitude. Gratitude for other things nearly too good to be true—a warm house, a fine, handsome, creative, talented, thoughtful, smart, prolific and loving husband, wine on the table, food in our bellies, electricity, hot water, indoor plumbing, art on the walls, dry basements, light-filled spaces, cozy fires, dear friends and family, enough clothes, enough money, decent health care and schools, reliable cars, leftover ribs, and mint chocolate Oreo ice cream cake in the freezer.

twelfth turn around the sun

Twelve years ago today, in the middle of an ice storm six weeks before his due date, Calvin came into the world. Two weeks earlier he’d been diagnosed, using sonograms and a fetal MRI, with ventriculomegaly: enlarged lateral ventricles in his brain and a significant absence of its white matter.

After Calvin was born we weren’t sure he’d survive. He spent his first seven weeks in two hospitals stabilizing his vitals and learning how to nurse. It was a stressful time. Michael had to travel thirty-five miles each way between the first hospital, where Calvin spent time in the NICU, and his work, which didn't offer fathers parental leave at the time. The college even asked him to teach an extra class which, for Calvin's and my sake, he thankfully declined. We stayed as close as we could to Calvin, sleeping at the Ronald McDonald house for his first few precarious weeks of life, and then I roomed with Calvin for the remaining weeks at our local hospital before bringing him home. Michael came to hold vigil every day as soon as he could, bringing home-cooked meals, clean clothes and supplies, and on most nights he slept on a makeshift bed in our room. It would be, perhaps, the most trying time of our lives.

Calvin's neurologist told us he might never walk or talk or crawl. No one said that he might also be prone to epilepsy.

Twelve years later Calvin is a wonky walker, but at least he can walk ... and crawl. He can't speak, wears diapers, has poor vision and poor coordination, though he is improving his signs for hug and more and eat and all done. Sadly, though, his epilepsy has eclipsed his other deficits, in large part due to the debilitating drugs used to treat it, which have never worked to get his seizures completely under control despite causing heinous side effects which exacerbate the struggles Calvin already endures.

But we continue to work on improving his quality of life. Over the past two years we have been giving Calvin homemade cannabis oils—THCA and CBD—the first of which appears to have halted his daytime grand mals. The oils have also seemed to have helped him sleep, calmed his body and allowed us to eliminate over ninety percent of his addictive benzodiazepin, clobazam, cousin of Valium, which he's been taking for over five years.

These days Calvin is a pretty happy kid who gets on the bus by himself, goes to school full time, likes to take baths, eats well, sops up our hugs and kisses and has an endless supply of his own. And even though he's a turkey sometimes, we're honored to be his parents and we know, without doubt, he helps make this crazy world go round.

remarkable kids

Some are remarkable kids. I call them kids because I’m easily old enough to be their mother. These kids are uber-smart, kind, funny, creative, compassionate. They've run the gamut from punk rock skateboarders to nerdy white boys with horn-rimmed glasses and Afros, to bookish gals with ebony hair, shy clean-cut hipsters and boyish girls in skinny jeans and sneakers. They’re from places like New York's boroughs, Vermont, East Palo Alto, Wyoming, Texas and Europe. These kids, any of whom I’d happily adopt, have taken photography classes from my husband, Michael, at the small liberal arts college a stone’s throw from our home.

It never occurred to me I might one day live in a small college town like this. Having lived and loved a decade in San Francisco and having enjoyed traveling for work to amazing places like Manhattan, London, Los Angeles and Hong Kong, I kinda pegged myself for a city gal. But this sleepy town has gotten under my skin a bit these past fourteen-plus years, and though it may mostly be due to resilience, I think, in part, it’s also because of these kids.

Every year around this time, greeting cards arrive, some coming from Michael's former students, like the one who wrote of his recent engagement, then went on to say:

It seems like a long time ago to me, yet I remember being in your class and finally feeling inspired at Bowdoin ... I think differently, see better, and observe more critically because of your teachings—thank you.

I wept with pride and a kind of joy when I read his words, though my throat thickened with a lump of sorrow knowing Michael will never have the opportunity to stir our own child, to talk with him philosophically or explore perceptions of the larger world and the one within ourselves. It's a theme I return to often, especially given I see these kids on a daily basis when the college is in session. I watch their movements, overhear bits of their conversations, meet their kind gazes squarely and with a smile, and then I think of Calvin and a more somber mood takes charge.

Over the years, students have expressed their fondness and appreciation by calling, or mysteriously delivering bottles of bourbon wrapped in brown paper to our door on Thanksgiving, or by sending gifts from abroad or donating to CURE epilepsy on Calvin’s behalf. Mostly, though, it's their words that are so meaningful and memorable. Some have corresponded for years, slept in our spare room, crashed on our couch, or driven miles just to join us for dinner. They always arrive bearing gifts and love, healthy appetites, laughter, good conversation and, most of all, the kind of curiosity, compassion and openness that will no doubt take them far.

Relationships with these young men and women come with some complex emotions. I relate to them with a deepness they may not fully grasp, in that I see in them what I might have seen in my own child had something not gone so terribly wrong. I relish our conversations together, on one level because of my fondness for, and understanding of, youth, and on another because I’m desperate to engage in a way I’ll never be able to with my own son. So these young adults—other people’s kids—hold special meaning to me.

I often wonder if Calvin, had he been born healthy, might've grown up to travel the world, become an artist or writer, learn to speak different languages, study abroad or perhaps would've been an athlete, entrepreneur or teacher.

When I imagine Calvin with a healthy brain and a body that works, I think he'd have been a remarkable kid. And then I remember, he is.

Bowdoin photo I, Spring 2015. Photo by Michael Kolster

just a little person

Loving this song and thinking of my boys.

  

Just a Little Person written by Jon Brion and performed by Deanna Storey. Video by Diogo Correia

down-home georgetown

We were welcomed into our hosts' home with bourbons on ice, beer and raw oysters drizzled with Luke's tasty vinegar and red onion salsa. On the scenic drive to Georgetown, Michael and I had gotten caught in a sudden downpour, the fringes of which never reached our destination, where we found no evidence of rain or wind and, due to an unusually cool, dry spring, no bugs. Around us, huge rhododendrons splotched the edges of granite shelves with white and pink blossoms and guarded a gnarled tree bearing a tire swing for their boy, Jacob.

When it was Jacob's bedtime, I made a salad while Sarah cut russets and sweet potatoes into wedges for fries. Nellie was discovered in Jacob's bedroom hovering over their orange tabby cat, Body, in a state of trance. Sarah remarked on what a good dog Nellie was not to have barked, so I told her I'd been training her to be nice to Woody's cat, Trixie, adding that it was a good thing for Body that he hadn't bolted because Nellie would've probably gone hunting.

As the evening wore on, Sarah and I chatted a bit about our boys—two peas in the veritable pod of disability—and about the immense difficulties of caring for non-verbal, unstable, incontinent, fragile boys who regularly wake before dawn and whose moods are volatile. We lamented about the added stress of finding consistent, reliable, compassionate help so that we don't lose our minds, our careers, our nest eggs, our marriages, our physical and emotional well-being, because I'm loathe to imagine what might happen to these vulnerable boys and our husbands if something were to happen to us. Needless to say it would be nothing short of ruinous. I went on to reminisce about the time we first met at the Witch's Tit ice cream shack several summers ago, and how, upon seeing Jacob who reminded me so much of Calvin, I was compelled to introduce myself. Little did I know what famous friends we'd become, nor what a match the couple would be, though fourteen years our junior, for our twisted sense of humor, unsparing candor, love of good food and drink and Michael and Luke's bromance with each other and with occasional nicotine and fire.

While Luke grilled the teriyaki salmon kabobs he'd skewered alongside cherry tomatoes, mushrooms and red onions, Sarah and I brought our drinks out onto the back deck to enjoy a sun setting into a bank of diaphanous clouds. I'd forgotten my camera, as did Michael, so Sarah tutored me on how to use her iphone. As I practiced my panoramic skills, she hammed for the camera, the shot below being our best result.

Few warm evenings are complete without Michael's homemade ice cream. He made basil flavored this time, with chocolate ganache. The earthy, green scent and taste of the ice cream reminded me of cannabis, the two herbs sharing fragrant terpenes likely responsible for some of the anticonvulsant effects used to treat epilepsy and, no doubt in my mind, having contributed to getting Calvin off of over 75% of his wicked benzodiazepine.

Just before the sun slipped behind the foothills, it shone bright and golden, then in its absence a blanket of mist formed and laid itself atop the water like a sleeping beauty. Calvin and Jacob were both asleep by then, and as I gazed out over the valley, grateful for all that I have, I wondered what our boys might be dreaming.

where i might rather be just now

photo by Michael Kolster