breathless again

As my mother once told me she used to do, this morning I tried to drown my sorrows in the shower. Though my eyes stung and my throat began to feel swollen, only a few tears fell. I so wanted and needed to do some serious weeping—about my son's afflictions, the suffering of Ukrainian civilians being bombed by Russian troops, the miseries of this damn pandemic—but instead, all my body had to offer was a halting breathlessness under the stream of hot water.

A couple of hours earlier, not long after waking for the day, Calvin had a rare, conscious-onset grand mal seizure in his jonnny-jump-up. Michael had just stepped out for his early-morning run, so when Calvin began to seize, I ran to the door and yelled Michael's name into the sleepy street, hoping he was still within earshot. Moments later—knowing well what my calling-out meant—he rushed back in through the door.

Unable to pry Calvin's convulsing, vice-like body from the jumper, we managed to get him onto his side—which limits the risk of aspiration—by supporting Calvin's upper body on Michael's chest and his hips and legs on my lap as I sat in a chair pulled under his jumper. Once the seizure was over, we were able to slip Calvin out of the jumper and onto the floor where I placed a folded blanket underneath his head. After a few minutes of our son's own halting breathlessness, together Michael and I hoisted Calvin onto the green couch where he laid in a daze.

Regrettably, it has been only two days since our son's last grand mal. I had just been thinking about how extra homemade THCA cannabis oil often seems to prevent Calvin's seizures from clustering if given in the hours and days after each initial seizure. I wish I had given him extra cannabis oil yesterday afternoon and last night with the hope of preventing this morning's fit, especially considering the advancing full moon which also seems to tug his seizures into existence.

Thankfully, Calvin's conscious-onset grand mals have become a rare occurrence since I began giving him my homemade cannabis oil eight years ago. He used to have them regularly, and frequently in the bathtub. They virtually disappeared with the advent of the cannabis oil, which relegated his grand mals to the middle of the night when he's asleep and secure in his safety bed. Unfortunately, his daytime grand mals began to reappear in the last several years, albeit with little frequency; they still account for just a small handful of the sixty to seventy grand mals Calvin suffers in any given year.

So today, once again, I'm stuck indoors with an unwell kid who is going between resting on the green couch to fidgeting and walking in aimless circles; I doubt he's out of the woods yet. Thankfully, I was able to get outside for a short stroll with Smellie as the sun was rising over the pines that skirt the fields. Thankfully, I got to take a shower before Michael left. Thankfully, I was able to breathe peacefully as the morning sunshine lightly gilt the room (instead of hiding in a bunker without food or water, breathless, while being shelled by the enemy.)

And, like a gift, just as I was wrapping this up while Calvin rested next to me, I got an email from a friend and former Bowdoin College student, Marina Henke, who did graduate work in radio and podcast documentary studies at the Salt Institute last fall. She attached a link to the profile piece she did on me, which I'm now able to share widely. I invite you to have a listen; it's beautiful and telling, and only seven minutes. Hearing it again unleashed all sorts of feelings in me, as well as some much-needed, hard and cathartic weeping.

Calvin recovering on the couch after this morning's grand mal.

running for it

saturday:

it's half past ten. just trying to get some sleep. there's a dense lump of tension, like a fist, lodged in my solar plexus. it feels electric, like it's vibrating through my entire being. its source is a mix of exasperation, helplessness and dread. sadly, it's all about calvin, who is out of sorts in the wake of two epileptic fits. he keeps banging the wall behind his bed. all i want to do is make a run for it.

calvin has had eight grand mals in thirty days. that translates into about half the month spent sleeping on me and the couch. i wonder what else i can do about his epilepsy. so exhausting living with it. today i switched his cannabis oil from hybrid to indica, hoping it might offer him some respite. he's pretty spacey, but that's typical the day after a tonic-clonic. my next move is to reduce his keppra. my gut—and a calendar marked up with orange highlighter and black sharpie indicating seizures—tells me the keppra isn't helping.

this tension i feel is cumulative. seventeen-and-a-half years of it. i often wonder what havoc it might be wreaking inside me. it's why i sometimes feel the need to scream. have to let it out so it won't devour me. or seat itself as a cancer in my organs, bones or blood.

in a move to ease my angst (and get in better shape) i started running. got new shoes. ran three days last week. took a longish, back-roads bike ride. the accomplishments were nothing to speak of. pretty meager efforts, really. still, i'm hoping they will stick.

i wonder if running might serve as some escape—from a stressful life with a messed-up kid. from being pent up and stuck. from the gnawing sense of dread.

perhaps running makes me feel more alive—my limbs and lungs pumped up with blood and breath.

or could it be i'm chasing something? a different vista? an extended moment all to myself? the dream of better days to come? some serendipitous adventure? a challenge other than handling my son's severe and complex conditions?

after today's modest jog on the trails around the soggy fields, the fist inside my chest had dissolved. i plan to run again tomorrow. with a bit of luck, i'll see some sights, and chase away some troubles, angst and sorrows.

musings

a stink bug perches on the bristles of my toothbrush. i know more about ventilators than i should. this morning's coffee tastes luxuriously of earth. as i run through the forest, pileated woodpeckers hammer and cackle from above. nearly every surface in this house is covered in dust. some things never give up. i've got an ache in the ball of my foot. on the underside of smellie's ear there's a mat that feels exactly like felt. it's astounding what some people call leadership. one tablespoon of butter has as much saturated fat as half a cup of vanilla ice cream or a large bag of potato chips. the campus is silent. students' bicycles rest on flat tires. matching cuts on my middle fingers throb, but only when i focus on them. the full moon works its gravity on seizures. charlotte, a little girl a lot like calvin whom i never met but loved just died from probable complications of the coronavirus. her mother was my mentor and is my hero. the morning sun shines in sideways, its light refracting through glass like opals or rain or the way trees blur through windows of a speeding car. my wedding ring clinks like a wind chime against my mug. steel cut oats get stuck in my teeth. the chair i write from groans and squeaks. pride gets in the way of apology. i imagine the hand that painted each brushstroke of face and landscape. reflections are everywhere and everything.

Photo by Michael Kolster

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

gratitude and sorrow

At Niles' request, I had brought Calvin downstairs Saturday to greet Michael's documentary photography students who had gathered here for dinner—something Michael has been doing for eighteen years at the close of every college semester. Poor Calvin, having had a good day despite some seizure harbingers (sour breath, warm hands, rashy butt) had spiraled into his "ooh-oohing," seemingly oblivious to anything but his fingers mad-snapping mere inches from his face. The students watched our son in relative silence, seemingly not knowing how to respond to an uber-awkward child so remote and unresponsive.

Just before they arrived, I'd been upstairs changing that hour's third, foul, poopy diaper which Calvin had gotten his hands into and within minutes proceeded to spread shit onto his pants, sheet and the toys that he mouths. Multiple wipes and four applications of hand sanitizer did not remove the reek from his fingertips. Thankfully, shortly after Calvin met the students, he went to sleep without too much trouble, and I was able to join the crew.

The young men and women, students of all races and backgrounds, sat around the coffee table gabbing and eating pizza before doing a Yankee swap with their photos. I stood from the dining room, sipping wine, looking on, making jokes and commenting on their photos. I talked too briefly with Octavio, whose brother Daniel, a Fulbright scholar, had also been a student of Michael's. I spoke with Brennan about a photo book he is publishing, and we talked about his love—and my curiosity—of Russian literature. At the end of the evening one of the students—I think it was Nate—asked how Michael and I had first met. I blushed telling them that when I was unemployed, before I began my design career at Levi Strauss in San Francisco, I'd been one of his photography students in a community college adult education class when we were both thirty-four. They laughed when I told them that Michael gave me an A- in my intro class, prompting me to take a second class to get the A. It was at the very end of that second semester when he and I began hanging out.

As students of an advanced class, I'd met all of them previously when they had come over as beginning photography students. After the photo swap and some brownies and ice cream, the group lingered a while before all but five of them left. For the next couple of hours, I sat amongst the beloved stragglers—J.P., Niles, Cirque, Nate and Brennan—as we discussed religion, photography, English as a major, parents, Rumspringa, and college professors. Even at ten o'clock I was still alert, energized by the lively conversation and feeling comfortable—like I did as a child with four brothers—amongst a bunch of guys.

It was impossible for me to sit there on the floor of our living room and not wish that any of the boys—young men, really—were my son, all of them witty, talented, kind, college undergrads, the kind I once dreamt a son of mine might be.

Eventually, sleep deprivation got its grip on me and I had to say goodnight. I hugged them all, hoping I'd see them again sometime. I went to sleep feeling gratitude and sorrow—gratitude for our ability to know, laugh and engage with these bright, curious, open individuals, and sorrow because we'll never experience any of that with our own boy.

Then, at three-thirty on Mother's Day morning, my sweet, vulnerable child did what I thought he might do: he seized in his bed for ninety seconds. I dabbed lavender on his pillow, then crawled in next to him and held him like the baby he once was, and still is.

Me and Octavio

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reason, written by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.

Photo by Michael Kolster

more than we can handle

My last words to him were, "I love you." He had returned the favor. Though the expanse of the Atlantic separated us, I felt close to him. He said he'd be coming back to Maine in a few weeks as part of a workshop to learn how to turn wooden spoons, and that he'd like to stay with us for a few days. Several times in the past he'd stayed with us for weeks on end. That conversation, along with a second, shorter one, happened just three weeks ago.

He began by expressing some concern having just read one of my darker posts, patience thins. We spoke of my periodic despair over Calvin's troubles, of his own recurring loss of faith in the world and in himself. He gushed about what he saw as extraordinary grace and resiliency in the face of caring for a non-verbal, incontinent, legally blind, cognitively disabled, chronically ill child, saying that he didn't know anyone who could do what Michael and I do. I reassured him that humans are remarkably adaptable creatures, and that most parents would rise to the occassion, adding wryly, "Good thing Calvin's cute." Sensing his own aguish—the months of silence, the rare back-to-back phone calls, the abundant accolades regarding my ability to handle misfortune—I wondered, then asked, if he'd ever thought about taking his own life.

"Yes, of course," he replied matter-of-factly and, after thanking me for my frank concern, noting that few others had ever broached the subject with him, went on to say, "but I'm not in that space right now." I urged him to please call us anytime, day or night, if those dark thoughts ever crept back again. That was the last time we spoke.

Tuesday morning we woke to learn that our dear and longtime friend had died by suicide. I've heard about life flashing before the eyes of those who are about to die. When Michael cried out after receiving the devastating news in an email, scenes of time spent with our friend flashed before my eyes.

I thought about the time when, in line for a matinee, he embraced me as I sobbed having gotten a call from the nurse announcing one of Calvin's grand mals. I remembered the mornings he'd arrive with large paper bags brimming with fancy pastries and breads—croissants, chocolate crinkle cookies, sticky buns, asiago fougasse, gingerbread, baguettes. I recalled the thin slate disc arranged with hunks and cakes of aged artisanal cheeses he hand-carried—just for us—on a flight from New York City. I remembered the Thanksgiving he spent here, when he tried his first taste of bourbon, and how on subsequent Thanksgivings he arranged, from afar, for a brown-bagged bottle of bourbon to be mysteriously delivered to our doorstep as if by a ghost. I realized we had watched him grow from a skinny, bespectacled seventeen-year-old—young enough to be our son—into a handsome, strapping man in his mid thirties. We watched him passionately delve into the making of art, wine, bread, coffee, custom bicycles and furniture. I became happily familiar with his taste in fine yet understated apparel. I admired the elegant, blue-black cursive-script tattoo—a quote or prose, which I regret forgetting—emblazoned across his broad chest. I got accustomed to his sensible shoes, his sharp wit, keen sense of humor, characteristic laugh, strong embrace, world curiosity, ingenuity, attentiveness and genius with notions, words, paint, wood, steel. And though—like so many others—he didn't seem confident in knowing how best to engage with Calvin, his compassion and love for us as a family was palpable.

Our friend had studied painting and photography. One of his paintings was a rough-hewn self-portrait, camera in hand. In large, broad-stroke red letters he included the words, I SUCK AT LIFE SO I WILL DO AS I'M TOLD. I marveled and applauded its irony and irreverence, had wanted to feature the painting inside my cubicle at the toxic employer I felt increasing contempt for. I wondered about the quote's basis; I wish I had asked him then.

In thinking of the tragic loss of our friend these past several days, I considered again the flabby platitude that folks have so thoughtlessly offered to me when they hear about Calvin's challenges—God doesn't give us more than we can handle. My response—calling bullshit—usually silences them: "Then why do people kill themselves?"

Eighteen months ago, Michael went to visit our friend at his home, a former Berlin hospital converted into spacious apartments. The two of them had a grand time exploring the city by day, wining and dining until the wee hours of the next morning eating from a buffet of various walnuts and fine cheese, drinking too much ridiculously delicious wine. No doubt they joked, laughed and reminisced, talked art and politics, and maybe even waxed philosophical. I had hoped to make the trip myself sometime soon.

We love you, man. You are and will be sorely missed. You're truly one in a billion-trillion. Next star I see has your name on it, brother. Rest in peace. No more anguish, no more pain.

Maine's Androscoggin River, photo by Michelle Lisi D'alauro

unfurling

Witnessing the evolution of a bud becoming a flower is astonishing to me. I ponder how each petal knows exactly when to unfurl and how, opening within days of others of its kind in the garden. Rarely do I see a flower which isn't all-together perfect, unless, of course, it has suffered from drought or some pest gnawing on its flesh. Nature simply seems to know just when and what to do. In my awe of these gorgeous events, I feel a bittersweet regret, knowing what seems true for simple flowers—and for most kids—is not true for my boy. His brain did not unfurl like it was supposed to. Instead, its delicate white matter never fully bloomed, leaving it thin and therefore incapable of transmitting his brain's messages to his body quickly and smoothly and, perhaps in some cases, at all.

Fourteen years later, I still wonder what went wrong.

Did I eat too little, too much? Was my egg decrepit? Did I eat bad cheese? Were my pants too tight? Was it a botched amniocentesis? Was it that sip of beer or that spot of wine or that lump of tuna or cheese? Was it the woman with the cough who we’d sat next to on the plane? Did I get her virus? Did I fly too late? Was I just too old? Was it something in the water? The chlorine? Did I swim too hard, too far?

Alas, I'll never know. Doctors assured me it was nothing I did while pregnant, that it was simply a blip in his brain's development. In my life's mourning, I hold fast to their assertions and to my boy, my sweet and lovely flower of another kind whom I can still hold in my hand and clutch to my heart while watching the slow-motion of his unfurling.

hopes, regrets and lamentations

hopes:

better times for my child without benzodiazepines on board. an end to his night terrors. more time outside and with friends. fewer seizures, fewer meds and better development for my boy. early spring. visits from faraway friends. more women and people of color in congress and in power. progress on my memoir. another visit to new york. more silver-gray hair. to see san francisco and seattle again. more time carved out to read good books. daylight dates with hubby. more love, forgiveness and gratefulness.

regrets:

harbored resentments. not enough naps. not enough exercise. not enough time with my homies. self-righteousness. not enough fish, vegetables and fruits. these six or seven pounds. grumpiness. not getting to the beach in months. exhaustion. impatience. pettiness. snark. spite. self pity. too much time spent inside by myself. not catching up with faraway friends.

lamentations:

the closing of bart's dvd rental store. the current president, his cabinet and other lackeys. conservatism. social media blues. patriarchy. white supremacy. oligarchy. deniers of white privilege. racism. bigotry. sexism. poverty. deceit. religious zealotry. greed. war. famine. misogyny. genocide. want. condescension. inequality. mass incarceration. pharmaceutical nightmares. bootstrap theories. police brutality. impunity. ignorance. neglect.

Photo by Michael Kolster

kids

Just as the season's first heavy snowfall was putting down its inches, a dozen or more of my husband's college photography students crowded into Calvin's room. They'd come over for dinner after their last gathering of the semester to eat shepherd's pies Michael had prepared earlier that afternoon. As they filed in, I introduced myself, trying my best to remember their names as I did. One of the kids (I call them kids though they are really young adults) asked if Calvin was still awake. I told him yes, and invited him and any others who might like to meet their professor's son to come upstairs before I gave Calvin his nighttime meds and tucked him in.

To my surprise, the entire group followed me up and into Calvin's room where my boy was laying on his back, safely secured under the netted canopy of his bed, chewing on a sock and playing with his toes. When I unhooked and threw back the netting, he sat up then knelt to help me lift him out and onto the changing table. I told him that some friends had come to greet him, then put on his glasses so he might better see them.

"Hi Calvin!" a few of them said. I took Calvin's hand and helped him wave back at them.

One of the students told me that they'd seen photographs of Calvin that Michael had taken, and that he had also read my blog. All of them were sweet to my boy and seemingly comfortable in the presence of our peculiar kid who, unless one is within arm's reach of him, will not acknowledge their existence.

When the gang retreated, I changed Calvin's diaper, tossed him into bed and kissed him goodnight. He went right to sleep and didn't make a peep all evening.

Downstairs, the kids filled their bellies with curried shepherd's pie for eighteen, salad, and brownies a la mode. They finished with a Yankee swap of their photos, which I thought were all quite good.

By evening's end I had learned all of their names—Niles, Nye, Vin, Amanda, Angela, Neoma, Devin, Enrique, Brie, Justin, Diego, Harry, Sarah, Jack, Clare, Evelyn and Grady.

Having the kids over, something Michael does with both of his classes at the end of every semester, is often bittersweet depending upon my mood. Last night, when they were setting out into the snowy cold, I was a bit misty eyed as a few of the young men and one young woman offered me hugs. As I bid them farewell, a pang of sorrow shot through me, knowing Calvin will never fill the void—the promise, or so I thought—that parenthood had once held: talking with my boy about the workings of the world, seeing him play games with friends, reading his written words, knowing some of his thoughts, meeting his sweethearts, helping him achieve his dreams, perhaps sending him off to college or traveling with him to distant places in the world.

This morning at four, when the snow had stopped and the air was cold and still, Calvin suffered his first partial complex seizure in thirty days, the longest stint between them in over a year. He made it nine days between grand mals, which isn't horrible considering he is taking almost zero benzodiazepine and far less CBD oil than he was a few months ago. As the day has worn on, though, the seizures keep coming. He's had five thus far; the THCA isn't keeping them at bay, perhaps because he has a low-grade fever, so I gave him a bit of THC rescue tincture to see what it can do.

For now, he is back in his bed and resting with the net pulled over. Michael is downstairs making another curried shepherd's pie for tonight's second class of students who are coming over. I'm sitting on Calvin's changing table trying not to despair about so many seizures within just one day ruining what had started off as a decent month in terms of numbers. And, I'm thinking of those nice kids who, if only for a moment, gave me a piece of what my heart is sorely missing.

alone in autumn

There's a melancholy about days like this, this time of day in autumn. The sun is low. The wind is chill. Pine needles sprinkle down in clouds of copper. A jet stream chalk mark fades in a clear blue sky between trees. I'm missing my dad. Missing my mom. Missing my brothers and sister and friends. Missing San Francisco and The West.

Most of all, I'm missing what I never really had at all: a healthy boy.

I'm missing seeing the ocean, feeling the sand between my toes, meeting new folks in vibrant places abroad and at home. Missing looking forward to doing something new.

The days are getting shorter, the shadows stretching in ways unhopeful, with edges so sharp they hurt my eyes. Rocks and shrubs and trees that basked in the sun at times are now relegated to lingering shade. So many birds have flown south. No more nectar for the bees. The streets feel empty. The forests harbor lonely, naked trees and falling leaves.

Is this how it feels to be the only one alive in the world? Cars go by but where are the people? Sun beats down but holds no warmth. Where are the birds that chirp?

I see old photos. Me as a child in a striped sweater, smiling with eyes closed. Me as a giddy bride holding my groom. Me as a new wife with Calvin inside. They're all dusty and faded, looking grey against a shady green outside, a lawn that I've worn a path into doing countless laps with my son. A boy with whom I often feel alone.

missing pieces

With Nellie on the leash I looked over my shoulder to see a dark sky rolling in from the north. Being from Seattle I know when rain is coming and can usually smell it. We walked along at a good clip, my rubber boots whapping my shins with each step.

At the fields I let Nellie off leash where she ran and dove and rolled in a lawn beginning to wither from too many days of hot weather. The leaves of trees flanking the field turned their silvery backs to the wind. I closed my eyes to better hear the rush of it and to feel its fingers caressing my skin. Finally, I kicked off my boots to stroll barefoot in the grass, something a foot doctor once told my twelve-year-old self I'd never be able to do.

From an open door I heard the voices of children singing songs from the seventies. A couple-hundred kids were seated in bleachers following along with a small band playing covers of Proud Mary and other pieces by artists including Helen Reddy and The Beatles. I walked over to the field house and peered in. Several young camp counselors in neon green tees were monitoring the children and cheering them on. I asked one of them how the kids knew the words in the absence of any booklets or projected lyrics. She explained that the lyrics had been simply taught by the band and then practiced daily.

"Amazing brains," I said of the kids' astounding capacity to learn and memorize so quickly. Then I thought about Calvin's frail brain and its missing pieces.

Suddenly, the girl cautioned me just as a throng of seven and eight year olds made a mad dash for the door. I had to shoo Nellie from the stampede and away from the table of snacks the kids were headed for. Above us a menacing sky opened up and a rush of emotion rained over me seeing the children gleefully wield popsicles and bananas, watching them laugh and skip and jump and run. I wept openly, grieving Calvin and all that he is missing, albeit obliviously, in and of the world.

Photo by Michael Kolster

broken flowers

This weekend, I spent time with a friend while she grieved the small and the not-so-small of life—the personal, the political, the theoretical dreads and disappointments we all face as human beings. While weeping, she apologized, describing how she thought her despair was somehow unbecoming. I told her, no, that mourning is one of life's beautiful expressions. Perhaps it was because of the time I'd spent with flowers that morning—the vibrant pinkish rhododendron blossoms fading to antique white with spoiling ruffled golden edges, the tulips held in a glass vase, their stems arching and bowing, their petals relaxed and splayed revealing delicate stamen before surrendering them to the earth, withered and crepey—that made me think that our response to life's tragedies, like a flower's gorgeous death, can be beautiful, too.

Often, I surrender to my deepest sorrow at times unexpected, like when I closed and latched the French doors this afternoon before I realized Calvin's pinkie finger was caught in the hinge. He was silent at first, in his excruciation, then wailed and writhed in so much pain I could not console him. When he finally calmed, I wept, sorry for having hurt him, sorry for all the pain he must suffer on a daily basis—brain, guts, bones—which we can't control, sorry for the gorgeous mess that is our life together. We are like broken flowers, exquisite, flawed, weeping.

As I finished this up, Michael and I heard a tremendous crack and felt the ground shake with a thump. We peered out trying to identify the source. Next door, a gigantic limb from a one-hundred-year-old maple had fallen, taking down power lines with it, having missed grazing our house by twenty feet, and now leaning into a neighboring spruce. The sound of splitting bark and flesh is like no other. The sensation of thousands of pounds of bough pounding earth felt in my heart like the bass at a rave. It is beautiful; it is awful. It is all the glorious stuff of life.

suffer the little children

While spoon feeding my thirteen-year-old son his lunch on a day he stayed home from school due to seizures, I watched a new documentary called Newtown. I wept through most of it, listening to the harrowing 911 calls from terrified victims hiding in offices and closets during what must have felt like an eternity of bullets spraying the halls. I remember the December day the Sandy Hook elementary school massacre happened a few years ago, remember thinking of those little bodies the size of my own son being shredded by bullets shot from an assault rifle in the hands of a disturbed young man of twenty. 

Had he shot one child for every year he languished on this earth?

Yesterday, I saw more haunting video of dead Syrian children, victims of an Assad chemical weapon attack on his own people. One man lost twenty-five family members, including his wife and infant twins, whom he held in his arms. Rows of lifeless children filled the back of a pickup, their eyes open and blank, their skin ashen, their chests bare from being hosed down in a vain attempt to save them. They didn't stand a chance.

And though I know the saying doesn’t mean what it sounds like, I still think to myself, suffer the little children. And then I wonder, why?

As dawn came, I laid next to my boy and I heard the morning doves coo. All the birds—the chickadees and jays and cardinals and catbirds and sparrows and crows—are beginning to go crazy now that the snow has almost melted and the purple spears of crocuses are beginning to shoot through. Lying there, I wondered whether, if the world’s leaders were replaced with women—no more an absurd idea than a world led by mostly men—there would be so much warring and genocide and rape and guns and bombs and atrocities between neighbors, tribes and nations. I wondered if female leaders would care more about Mother Earth. I wondered if, under female stewardship, the world’s children, rather than be made into child warriors and brides, would be fed and clothed and housed and educated and empowered and cared for. I wondered if, under female rule, we’d be fearing nuclear war and rising sea levels and air and water pollution like we do. I wondered if our children would be deprived life-saving medicines and a chance to live up to their potential in the world. 

Suffer the little children; they’ll be the ones who must live in this crumbling, power-hungry, greedy, misogynistic, patriarchal, intolerant world.

A man carries the body of a dead child, after what rescue workers described as a suspected gas attack in the town of Khan Sheikhoun in rebel-held Idlib, Syria. Reuters/Ammar Abdullah

the promise of spring and lindsey's peas

Though a foot of snow still covered the ground, it was mild when I put Calvin on the bus yesterday morning and, being the vernal equinox, I hoped I'd soon see early signs of spring. I alerted the driver and the aide that Calvin was a little “off,” likely because he’d had two brief partial seizures on Sunday requiring some extra meds. He’d been restless Sunday night, then woke early, trembling and humming repetitively. While I made his school lunch he spun in his jumper, snapping his fingers wildly and covering his ears at times as if to block a phantom noise.

After school when the bus dropped him off, his aide mentioned how well he had walked and what a good afternoon he’d had. Hearing that raised my suspicion, knowing that unusually good walking is often a harbinger of seizures to come. Once inside the house, I noted other omens: a persistent and severe rash on his buttocks, mottled legs, restlessness, foamy drool, warm hands and red ears. However, he was relatively quiet and, considering it was only day five since his last grand mal, I figured he might be out of the woods.

Around six, Lauren stopped by with homemade lasagna for dinner. Just as I was putting Calvin to bed, Maura popped in impromptu on her way home to join us for a drink. The tulips she had brought me last week were in full splendor. Though he was slightly restless again, Calvin drifted off to sleep just after seven. My soul sisters and I gathered in the kitchen and talked about the Trump administration's unconscionable ties to Russia. We expressed our disdain for republican swamp monsters who aim to tear apart our beloved institutions, sacred freedoms and protections. We lamented our weariness of the poser in chief, regretting that Hillary isn’t seated in the Oval Office surrounded by experienced people, making fair policies to protect all Americans, especially marginalized ones, and partnering with important world allies like Angela Merkel. We thought about our daughters and our friends' daughters and pined for female leadership in this lamentably patriarchal world. We toasted to the coming of spring.

As we sipped our drinks, Maura noticed a picture postcard propped on the windowsill featuring Lindsey, a sweet, bespeckled little girl with a loose thick braid, a girl not too dissimilar from Calvin. Next to the card sits the packet of dry peas sent by her mother, as in past years, in honor of her daughter's birthday. I noticed that the card and seeds had arrived on the first day of spring and what would have been Lindsey's ninth birthday had she not died in her sleep a fortnight ago. I promised myself to plant the peas in a pot at the base of the bird feeder once warmer weather comes.

At ten last night, Michael not yet home, Calvin suffered the looming grand mal. After giving him a tiny squirt of THC rescue tincture, and in its wake an extra dose of THCA oil, I wrapped him in my arms and could hear his heart beating through my pillow. I thought of sweet Lindsey who I had cradled in my lap a time or two, grieved for her loving mother and my dear friend, her uncle, and held them in my own heart for a spell. Calvin slept soundly enough for me to think he was out of the woods. Nevertheless, at four o’clock he had a second grand mal, so I had to use the rectal Valium I loathe to give, or risk him having more.

March, long notorious for bringing ear infections, viruses and extra seizures, came in like a lion; Calvin has already surpassed, by one, his monthly average of four grand mals. Today is grey. The snow is slowly melting. The crocuses are no doubt eager to push their way through the earth into the outside world. In a month or two Lindsey's pea shoots will wind their way, like her curly hair, up a makeshift trellis. There will be birds to feed, lawn to be mowed and flowers to be cut and brought indoors.

hopes, regrets and lamentations

hopes:

Fewer seizures in two-thousand-seventeen. To get Calvin safely off of his benzodiazepine. Time in warmer climes. To hear Calvin speak a word. More time outside. For the world to be at peace. Continued health. More time to write. To see more of my peeps. Forgiveness. To become a better human being. For the liberty of those who live under tyranny. The understanding of others. Love and humanity. An end to war and starvation. Leaders who are deserving of respect and admiration. More time to read and sleep. Freedom and equality.

regrets:

Self pity. Cranky mama. Selfishness. Missed opportunities. Falling-out. Staying put. Loss of contact. Too few walks through the woods. Not getting to San Francisco, Seattle or New York. Not drinking enough water. Impatience. Resentment.

lamentations:

Too many seizures. Too many missed days. Ugly Americans here and abroad. Racism. Bigotry. Misogyny. The regrettable exit of President Obama and his family. Monotony. Frustration. Dread. The election of an infantile, boorish, ignorant, dishonest, narcissist fiend. Greed. Corruption. Dying children. Torture. War. An incoming loser with a facile and grossly limited world view. Hate. Despots. Oligarchies. Fascism. Cowards. Fools.

Photo by Michael Kolster

drowning

dumbstruck by prose on drowning. my face awash with tears—my son’s and mine. rain batters a red metal roof. an unbelievable green turns neon amid an electric sky. electric sky. perhaps sparking my son’s fits. five of them. one grand mal. like clockwork the morning of day nine. the clock stops. the fits march on. i drown my son with potions of various kinds. cannabidiol. benzodiazepine. extra keppra. tetrahydrocannabinolic acid. more benzodiazepine.

he clasps his hands around my neck. beats his head into mine and cries. mama will make it better, i vow. my head pressed into his i glimpse my fist. in it a syringe awaiting to touch his lips. i wonder what is hurting him. i think of mothers and fathers who have taken away the pain. i read of others who bring it on. who've drowned their most beloved ones.

the sky glows. the rain slows. the catbird has been calling since two a.m. i shouldn’t, but i know.

precious boy in so much pain. migraine? sweet boy on the mend will feel this way again. i can take none of it away. i kiss and rub his neck. palm on his chest. no beating. what to do? wait. it's merely calm. not thumping too, too strong.

in my youth i used to catch frogs. see their beady eyes floating in the mire. feel their hearts through cellophane skin. yesterday I waded ankle deep into a pond. looked inside. spied no frogs. heard them yawn and croak and call. thought of the tot who slipped on a rock a lifetime ago. the crown of her head barely cleared the drink. her blond curls drifting like milfoil whorls. she didn't move. i stood and froze.

my boy emerges from the deep. still weeping. times like these he takes me down. the both of us drown by degrees. sorrow is mine. his is hurt. we wade, we slip, we work like hell to breathe in waters that may never recede.

Photo by Michael Kolster

bright star

Sudden. She played today. She colored today. She died today. Unexplained. The switch just went off. Death. Final. Epilepsy. Caused by her 3rd vaccination set. She wasn't seizing, just sleeping on daddy's chest in the light of day on her couch, her favorite place in the world. SUDEP kills.

This, the second message my friend Susan posted yesterday on Facebook, is about her precious teenage daughter, Cyndimae. Susan's first message earlier yesterday morning read:

My angel Cyndimae died SUDEP in her daddy's arms after 3 short no meds seizures.

I told Susan in a message that I was sending her love and would soon be in touch. All night long I thought about the girl—every time I woke to reposition my semi-restless, yet slumbering boy. At midnight I peered out a window to see a bright star shrouded in mist. I named it after sweet Mae.

I first met Susan and Cyndimae in early February of 2014, just before making my first batch of homemade THCA cannabis oil to treat Calvin's seizures. While Cyndimae sat on the couch with a coloring book, crayons and a blanket in her lap, Susan showed me a few tricks to making the oil. She'd already made at least one batch for her daughter, who was suffering from Dravet syndrome, one of the catastrophic forms of epilepsy which is infamously resistant to traditional medication. In quest of the right kind of cannabis to treat Cyndimae's epilepsy, the two of them had splintered their family by moving to Maine from Connecticut, sadly leaving Cyndimae's father and sisters behind.

With the help of cannabis oils, Mae, as she was often called, eventually came off of her pharmaceutical meds, which included the powerful sedative phenobarbitol. Her seizures were fairly well controlled with a daily mix of cannabis: THCA and THC, perhaps a little CBD, though I can't be sure, and a rescue med of highly concentrated THC. Mae continued to suffer transient seizures, particularly when she was sick, but overall became much brighter and more capable in the absence of the pharmaceutical monsters.

Though I've known of children who've died from Sudden Unexplained Death in Epilepsy (SUDEP), I never really thought it would take Cyndimae. But it seems the ravaging that years of seizures and powerful antiepileptic drugs may have been too much for her little heart to bear, and it makes me wonder how much more of that same stress Calvin can endure.

Throughout the day I thought of Mae and of the palpable adoration between her and her mother. After hearing of Cyndimae's death, everything Calvin did took on a new quality and meaning; my frustration with his antics was tempered and my patience lengthened because Mae's death hit so close to home. I tried harder than ever to live in the moment because, really, that's all we've got.

Yesterday, in Michael's absence, a string of friends showed up to keep me company and help out. Sarah stopped by with her son Jacob, Anne came to chat and stroll with me and Calvin, Lauren swung by to return my movie, Heather took Nellie for a run in the fields, then Matt and Connie showed up with their kids, plus chips and pita and a bowl of hummus. The stream of friends appearing throughout the day felt like a kind of celebration, and I was consciously aware that Susan and her family were being embraced by friends, family, and even relative strangers in the pediatric epilepsy community and the medicinal cannabis world. The outpouring of support for them has been tremendous, but no more so than the love and concern they've shown toward others all these years. Like a spark, it started with them.

Thank you, Susan, for being the indefatigable warrior mom you are. Thank you, Cyndimae, for being the bright star that you were and still are. You'll forever shine in our hearts and minds and remind us how to be our very best selves.

Cyndimae Meehan and her super mom, Susan

home invasions and innervisions

We managed to suffer another home invasion Saturday night. The culprits came to our door armed with coq au vin, Caesar salad with homemade dressing and croutons, and melt-in-your-mouth lemon curd cheesecake. You see, we’ve been nurse-challenged more of late and therefore unable to get out much, so some of our favorite lovelies, known for home invasions whenever we’re housebound, brought the dinner party to us again.

It had been a long day for me, feeling a bit queasy from, I figure, too little sleep in general and perhaps one-too-many bourbons the night before, which is rare for me. Irritating my circumstance was an agitated son who shrieked and coughed much of the day, seemingly in prelude to a seizure.

By day’s end, I was feeling frail and found myself in tears an hour or so before the invasion just listening to Stevie Wonder’s Innervisions, specifically, Living for the City, about a young black man from Mississippi who heads to New York in search of work. The vinyl recording includes an excerpt of the man being falsely accused of dealing drugs, being arrested and put in prison for ten years, plus extra verses of his life after prison. Whenever I listen to the song I visualize the young man and his family: good, kind, honest, hardworking people who are poor, though well-kept, well-raised and strong. Then I imagined the millions like him who’ve been snagged in our nation’s racial caste system, swept up in an epidemic mass incarceration of black men. I stood there watching Calvin crawl on the floor and wept for the disruption of so many black lives, the loss and abuse of these precious sons and daughters, brothers and sisters, and the ignorant notion that they are to blame for everything White that is thrust upon them. Then I thought of San Francisco and, after that, my mom, and cried that much harder having missed them both for so long, and having just lost Mom to Alzheimer’s in autumn.

Thankfully, the home invasion lifted my spirits, simply sitting around a table with my smart, humorous, progressive friends. We mused about some of the conservative candidates running for president, their hateful rhetoric and blatant attacks on women, Muslims, Mexicans, Syrian refugees and the disabled. We talked about our deplorable governor and his brazenly racist comments about black men and poor white women, including his lame defense, and the equally bigoted backing from a statehouse rep. We went on to lament the wacko, jingoistic vigilantes claiming native lands as their own. And just so we didn’t let the bastards get us down, we laughed a lot and touched on photography and writing and sons in college before the conversation digressed to swapping the letters of our first and last names, which made us laugh even harder. Our friends asked about Calvin and I gave them the update on his cannabis oil treatment. I told them Calvin has had only one daytime grand mal seizure in nearly 500 days despite being in active benzodiazepine withdrawal and taking a fraction of the antiepileptic pharmaceuticals compared to two years ago. Knowing that I suspected an imminent seizure, one friend looked sad, perhaps even worried, when I got up to check on Calvin because I heard him whimper in his sleep.

Still feeling fatigued, and knowing that our friends understood, I said my goodbyes early and went upstairs to bed. As I laid there, gazing out the window to a slate-gray sky, I heard the murmur of happy voices in the room below, and I smiled. But before I dozed off, I worried about Calvin some more, thought of Stevie's profound innervisions, and fell asleep wishing there were less fear, hate, oppression and greed in the world.

If you cannot view the video below you can watch it here on You Tube. You can read the full lyrics, plus annotations here.

hold fast

In memory of nine-year-old Christina Taylor Green, Gabrielle Giffords, and six others murdered five years ago today by a gunman shooting into a crowd. Christina Taylor Green was my close friend's goddaughter, and her mother, Roxanna, had been a bridesmaid with me. Christina's parents, having become avid gun control advocates since their daughter's murder, attended President Obama's recent gun control announcement. Today, my thoughts are with them, and the thousands of parents in this country who have lost their children to gun violence.

Snow was falling silently when the grim news came.
Woman shot, six others dead—
one child.
Tears of sorrow filled our eyes.
 
Hold fast.
 
She, younger than I, is lost in a coma.
Lost to her children, lost to her husband,
suspended in some cold inner space
we can never know.

 They try to embrace but cannot reach her, not now.
She is somewhere else.
 
Hold fast.
 
What about the girl?
Her happy presence replaced by emptiness–
silent and desolate.
A hollowness in her mother and
father’s palms—in the core of their beings.
Memories endure of stroking her

 chestnut hair, of her smile,
of tenderly cupping her face in their hands.
Echoes of her sweet voice remain.
 
Hold fast.
 
I have my spouse and I have my child,
all touching in our own warm bed,
my arms wrapped around my boy,
his around my neck, our hearts beating together.
His sweet breath brushes my face,
his supple legs curl up as
little feet knead my belly.
 
I Hold fast.

Christina Taylor Green, September 11, 2001 - January 8, 2011