back in time

"Do you love me?" I ask from the far side of the butcher block, a question to which I know the answer, but which I ask periodically, just to be humored.

"Yes. More than anything in the world," he replies, as he looks at me with intent.

A bit incredulously, I follow with, "Even Calvin?"

"Yes," my husband answers, "but he's catching up."

The expression I give lets him know I wonder what he means.

"He's becoming more lovable," he says.

"Like when he was a baby," I add, "when he was feeling good ... he was all happy and lovable. It's the drugs that have fucked him up."

After a pause, I go on to say:

"Some doctors are assholes," thinking about the bad ones—the one who needlessly prescribed Calvin's first benzodiazepine and the ones who prescribed extremely high doses of too many drugs—sometimes several at once—that didn't work and that fucked him up, caused him to be and remain so impossibly restless.

Michael nods his head.

"I wish we could go back in time." I say, wishing I knew—and could have employed—then what I know now.

But I can only go there in my memories and dreams.

One-year-old Calvin, March, 2005

seize, grieve, repeat

The night's torrent had begun to wane. Its pummeling on our red metal roof had dissolved into a soft patter. The happy, excited voices of college partygoers passing by our house had trailed off just before two a.m. I had gotten up to use the bathroom and had checked on Calvin to make sure he was positioned well and covered. It seemed he hadn't moved for hours.

Not long after I closed my eyes again, my son's seizure scream cracked the silence. Despite the stormy weather, I hadn't really seen the seizure coming; it was day forty-five in a seizure-free stint, one of his longest in years.

After nearly two minutes, when the grand mal was over, I dripped two milliliters of my homemade THCA cannabis oil into the side of Calvin mouth in an effort to stave off a subsequent attack. Then I crawled into the small space next to my boy-man whose soft childlike cheeks are now regularly peppered with stubble. I held him close so I could monitor his breathing; SUDEP—Sudden Unexpected Death in Epilepsy—is a menace for young people like Calvin who have intractable epilepsy, and is thought to occur because of disruptions in cardiac and/or respiratory activity in the wake of grand mal seizures.

Regrettably, this morning Calvin suffered a repeat of yesterday's 2:00 a.m. seizure, but this time the extra cannabis oil I gave him did not thwart an ensuing one. I wish I had thought to give him an emergency dose of nasal Valium, but in my sleepy stupor it slipped my mind until the seizure was already over, when I was loathe to give it. But during his third grand mal in just over twenty-four hours, I gave him the nasal Valium to stop the cluster from evolving further.

Today, my sweet boy is a bit better than yesterday. I still don't know what caused the cluster after forty-five days of seizure freedom. Was it the storm and its low barometric pressure? Does he have an underlying illness? Was it the sucrulose (which I hadn't initially noticed) in the different brand of Greek yogurt I gave him? Is it that his body is habituating to the newest epilepsy medication, Xcopri? I will likely never know. I'll just sit here and hope, at least for now, that he doesn't have any more.

anniversary

Today marks the twelfth anniversary of my first blog post. In twelve years, and over 1,747,526 hits later (no doubt some of them from bots), scores of lovely people have joined in helping to fuel my journey, recharge my battery, and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of mothers, fathers, doctors, nurses, restaurateurs, therapists, ice cream scoopers, bloggers, children, ed-techs, in-laws, sales reps, grocery store clerks, photographers, chefs, brothers, teachers, flight attendants, runners, city councilors, dietitians, case managers, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, radio talk show hosts, chaplains, lawyers, actors, neuro-ophthalmologists, contractors, professors, nurse practitioners, marathoners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, writers,s founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all done something—whether unwittingly or not—to make our lives richer, more comfortable, happier, better, and for that I owe you each a debt of gratitude.

running like the wind

While walking Smellie in the sweltering heat of Saturday evening, I passed the home of some friends who were in their backyard barbecuing. I heard the happy chatter of the couple with at least one of their children and perhaps one or two friends. The banter was uplifting and made me smile despite more than a tinge of sadness realizing in real time that Michael and I never have, never do, and never will have that experience with our son since he can't talk or engage with others in any kind of "normal" fashion. In fact—without exaggerating—I can probably count on ten fingers how many times Calvin has eaten a meal with us at the table. Unless friends come over, Michael and I always dine by ourselves as if empty nesters which, despite sitting constant vigil beside the baby monitor, might seem like a major bonus but in the bigger picture is a colossal loss.

Earlier in the day, I had run the Beach to Beacon 10K with about 7,000 other runners. I carpooled to the event with a neighbors' daughter, Clare, who is sweet as can be and is a serious runner. She picked up my bib and event swag for me the night before, and helped me navigate the event, which was my first-ever bona fide road race. Though it was 75 degrees with 85% humidity when the race began at 8:00 a.m., it was fun! Just before the race began I was able to hug my dear friend, Olympic Marathon Gold Medalist Joanie Benoit Samuelson, the event's founder, and she cautioned us to "please stay safe" in the heat. My goal was to finish without walking and to average a pace between 9:30 and 9:45 per mile. I came in a hair over that, which was satisfying considering the heat and the fact I had trained in earnest for just over two months. It feels good to finally be in the initial stages of getting back to my former athletic self, the one I pretty much abandoned when Calvin was born. Clare, by the way, placed fourth in the field of non-professional women with a pace of 5:59 per mile! Smokin'!

While among the stream of runners, as I smiled at the blaring, running-themed front-yard music, waved at the folks in fold-out chairs cheering and ringing cow bells, high-fived and fist-bumped the little tykes standing at the edges of yards cheering us on, I thought about what some of my friends had said to me before my race.

Just weeks prior to the race, when I was worried I hadn't trained enough distance, Joanie reassured me in a text:

"The crowds and runners will carry you in much the same way that you have carried Calvin."

The day before the race she added:

"Run like the wind!"

Her words gave me tears and chills, and I took them to heart. Other accomplished runner friends, my husband, and sibling athletes gave me advice about not overdoing it in my training, not going out too fast (I knew this from distance swimming), taking smaller strides on the hills (thanks Clare!), what to wear and what to eat and drink pre-race.

During the race, I concentrated on keeping my head up. I noted the glorious feel of the sun and wind and shade, the scenery, the tempo of my breathing. I focused on not scuffing my feet on the pavement lest I impede my own progress. And then, halfway in, I did think about Calvin and about carrying him all these years. I looked around at the close crowd of runners buoying me as if I were floating down a river out to sea. I thought about the pain of the endeavor and realized it was nothing compared to what my son endures when he seizes or suffers miserable drug side effects, or the agony he faced when he broke his hip at school. Having put it all in perspective, I was able to then forget about my little ball and chain for the rest of the race, because though I wanted to honor Calvin by doing something he might have been good at, I want running to be mine. I want at least one aspect of myself to be, for all intents and purposes, independent of Calvin since most of my life is Calvin-centric in a way altogether different from parents of neurotypical children—which is to say that my infant-toddler-teen will never grow up. I may forever be on guard, changing diapers and spoon-feeding, to say the least. And though I know parenting "ordinary" children comes with its own serious challenges, I will always lament never being able to experience the joys of things like shooting the shit with Calvin and his friends at backyard barbecues.

As I come partway off of the runner's high that I got during and after Saturday's race, and as I sit here at the top of the stairs mere feet from where Calvin is splashing in the bathtub, I realize that running—the time and space when and where I can drift and dream—is mine. 

While editing this, I recalled a post I wrote over a year ago about a winning marathoner I passed often during my pandemic back-road drives with Calvin, and with whom I've since become casual friends. In the post, I wondered about his reasons for running, whether he had suffered losses, whether there was anything that grieved him, whether he might be running to escape a hardship. But as I type, I realize my ponderings were and are mere projections—a commentary on my own situation and hardships. I also realize that running for me isn't just about escaping all-things-Calvin. It's also an attempt to ground a self that is often sent emotionally reeling by the intense, frustrating and often sorrowful caring for my child and his chronic condition, and it's an effort to get reacquainted with my true, healthier, competitive and independent self.

And as I relive the Beach to Beacon 10K in my mind, the thing I remember most is not the pain, not the heat, not the hills, but the glorious feeling of running free like the wind.

Me and Clare

to love life

We sat in the closeness of the sticky mid-morning heat, our bare arms and thighs touching. The rickety bench Woody gave me, one that dropped another screw recently, held us even as it swayed under our weight. I wrapped my hand around hers and kissed her cheek. We drank little rivers—she a sparkling citrus-scented water from a can, and I tap water held in a heavy green glass. We listened to a goldfinch sing as the wind swept through the trees. It felt as if we were the only ones in the world, and tears of sorrow came to us both as we contemplated life's tragedies.

During our walk earlier, she and I talked of mosquito bites, politics, running races, friendships, gardens, daughters, sons. Something flew up the open leg of her shorts and stung her repeatedly. I peeked into the back of her waistband and a bee—or was it a wasp?—flew out. She bent and plucked flat leaves of plantain, put them in her mouth, chewed them into a mash and applied tiny wads to the stings as a medicinal salve meant to draw the poison out.

"Everything we need is here for us," she said, meaning that nature is the original balm, then adding that we've just forgotten how to use it. I thought of Calvin's cannabis oil and how well it seems to help quell at least some of his seizures.

On our walk home, we stopped to cut—with permission—bunches of nodding sunflowers from our friends' backyard. Some of the smaller ones, which were still closed tightly like little fists as if reluctant to open to today's world, reminded me of my newly-born, four-pound, six-week preemie's apple-sized head and cinched brow. What a difficult yet extraordinary road it has been since then.

Later, when early evening came around and as I washed up dishes listening to my Calvin moan and rustle in his bed upstairs, I was again on the verge of weeping. My son is so often out of sorts or miserable, suffering from one thing or another inevitably brought on by seizures and/or their drug treatment. Though it had only been five days since his last grand mal, I could sense one coming by his bad balance, stubbornness, intensity, neediness, sour breath, eye poking, fingers in his mouth and mine, the new moon on the rise. I thought again about my earlier conversation with my friend. While strolling along a wooded path we had discussed abortion and the recent Supreme Court's abysmal decision to reverse Roe. I told her that, had I known for certain early on in my pregnancy that Calvin would be born missing most of the white matter in his brain which would cause him to be legally blind, uncoordinated, nonverbal, incontinent, cognitively impaired and—worst of all—be pummeled by thousands of uncontrollable seizures, I might have chosen to end the pregnancy to spare his suffering. To say that life for him is limited and presents major daily challenges, pain and miseries would be a gross understatement. Lamentably, there is so very little that Calvin seems to enjoy, mostly because he's been ruined by the drugs which cause him, at the very least, to be impossibly restless, making it harder, too, for me to live the life I want to live.

Just before my husband arrived home for the evening, I sat near the open French doors which look out onto the garden. There, while I reflected on my day and wrote this post, I came across this poem by Ellen Bass:

The Thing Is

to love life, to love it even

when you have no stomach for it

and everything you’ve held dear

crumbles like burnt paper in your hands,

your throat filled with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you down like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.

    It struck me that I'd come across a poem so fitting for me, for my life with Calvin, and for the day I had just lived. 

    

    Just as Michael and I were sitting down for another sublime dinner in the screen porch, I heard Calvin make a strange noise. In that instant, I thought again about grief—ours, his, my friend's, everyone's—as I bounded up the stairs to find my sweet, pure, innocent beloved son—the boy who rocks my world in the most terrible, lovely, heavy (an obesity of grief) and amazing ways—as he was seizing again. I stroked his thigh and Michael embraced him and kissed his face. We've done the same perhaps thousands of times before and will very likely do the same a thousand times more, because Calvin is our precious son, and because it is our life, and in most ways we love it, and what else is there?

 

little enigma

I know it's been awhile since I've written. Calvin has had a bit of a hard time lately due to who knows exactly what since he can't tell us—it is always a mystery—but probably some combination of an increase in his newest epilepsy drug, Xcopri, and a recent decrease in his older epilepsy drug, Keppra. My guess is he is experiencing some withdrawal seizures and symptoms, and my bet is that the Xcopri and my homemade THCA cannabis oil is helping to quell some of them.

Suffice to say, I haven't had the wherewithal or the headspace to write. Instead, I've been training for a 10K running race called Beach to Beacon, which happens two weeks from today (I've never done a road race) and I've been taking loads of photographs of trees and flowers and water and my little enigma this past year, which I'll leave here for you to consider. Click on any of them to enlarge.

I hope, dear Reader, that your summer is going well as can be and that you're getting out and about. As for me, I'm enjoying my car rides with Calvin, and my runs and walks on the back roads and trails with or without Smellie, plus a bit of gardening, small and infrequent gatherings with friends, good movies, eating Michael's delicious meals in the screen porch, and this sanctuary of ours. And of course, I continue to live vicariously through others, perhaps even through you.

helpless

I was going to write about loss and grief. I was going to write about goldfinches nibbling thistle, and robins tugging at stubborn worms, and cardinals flashing by windows, and woodpeckers warbling in the forest. I was going to express my astonishment at trees and shrubs doing what they're supposed to do when they're supposed to do it and in perfect unison with others of their same making. I was going to mention how all seems right in this little corner of the world despite ever-present loss and grief, while at the same time everything is so messed up here at home and abroad, and how I feel so helpless to change the things that seem to matter most.

But partway through writing this post, I got a call from the nurse at Calvin's high school. He'd suffered a fall, was hurting and not able to put weight on his left leg. The nurse somberly relayed to me that, while trying to sit in his chair, Calvin "got one cheek on and one cheek off," and he went down hard on his elbow and hip as if the chair he was expecting to be there wasn't, and the ed tech had heard something in Calvin crack. I said, "fuck,"—one of my worst nightmares having seemed to come true—then dropped everything and went to fetch my poor little helpless boy.

So, Tuesday, instead of writing or gardening or taking a much-needed, long-overdue nap, I drove Calvin to our local hospital's emergency department where his beloved teacher, who had loaded him into the car and followed us there, had then lifted a miserable Calvin out of the car and into a wheelchair, waited with us until we got a room.

During the seven hours we spent in the hospital, Calvin underwent three painful hip X-rays and one CT-scan of his pelvis, hip and femur. In between, I sobbed in his arms, feeling completely helpless. As he wailed and moaned, trembled and sweat in waves of intense pain, I wanted to disappear, my motherly anguish becoming worse recalling the horrific hospital episodes of the past: Calvin's fraught birth; his painful, poorly-placed nasogastric tube; his excruciating, unnecessary, bloody intubation; his stubborn, forty-five minute seizure during which Michael and I sat by helplessly, thinking we were kissing him goodbye.

Regrettably, the CT-scan revealed some fat and blood in Calvin's hip socket indicating an occult (hidden) fracture in his hip socket or the femoral head. We'll know for sure a week from Friday when he goes in for more X-rays. We're hoping he won't need surgery. In any event, Calvin will have to keep weight off of his leg for as long as six weeks. Yesterday, I did some heavy lifting, calling doctors and medical supply companies (for a hospital bed and a wheelchair), cleaning up vomit, changing all of Calvin's clothes and bedding twice, doing laundry, trying to get him to eat and drink, changing several dirty diapers—something we've rarely had to do anymore since he's been going on the potty, and a colossal effort with such a big kid whose hip kills him, and who is inclined to put his hand in his poop—and keeping him comfortable and content in bed where he's regrettably sequestered without really understanding why. I can't quite wrap my head around managing Calvin, my hyperactive infant-toddler-teen who suffers seizures and akathesia and is incapable of attending to a screen or reading or playing with most toys, for such an extended time while confined to a wheelchair and bed. Most of all, I feel sorry for Calvin being restricted from the things he loves to do and needs most, which is his jumper—his most favorite place in the world for allowing him to move without expending energy—going to school, traipsing around the house and yard, using the potty and taking a bath (jeezus, I just realized: how in hell are we going to bathe him?!) Once his pain subsides, which I hope is soon, I wonder if I'll be able to manage getting him into the car for rides on the back roads. Suffice to say, we're stuck at home again for the foreseeable future, and helpless to do anything else.

Thankfully, this home is a damn cozy one. Thankfully, our community is astoundingly supportive: a neighbor has offered to walk Smellie anytime; his teacher came by yesterday with the assistant superintendant of special education and they helped while Calvin retched; his teacher went to the store to buy us Pedialyte and Milk of Magnesia; a friend just brought by flowers and many others have offered their help; I have a ridiculously hard-working and supportive husband. In essence, I have so much to be grateful for!

Even so, as I sit here in Calvin's room tapping on my laptop while listening to some quiet music, I worry, with fresh anger and resentment, about my child and his unfortunate mishap, wondering if he'll fully recover and without chronic pain. I consider what a hard and bittersweet spring this is going to be seeing Calvin's peers graduate from high school and go on to bigger and better things. I think about their parents, envious of some of them who will soon be empty nesters enjoying newfound liberties. I meditate on the innocent people in Ukraine who are suffering dire and dreadful atrocities.

But I also think about the podcast I heard the other day in which a woman describes immense grief and loss as not necessarily lessening over time, but instead feeling as though they diminish with each new, rich life experience that expands around them. And though there are spikes and waves of grief and loss, especially during incidents like these, I can attest to feeling as if those emotions have dwindled, if slightly, since grief nearly took me down when I learned about Calvin's malformed brain, then hammered me again when he began suffering seizures and side effects from the drugs meant to stop them.

As with all my blog posts, I write this one not knowing where it will ultimately take me until I've "penned" the final words. Now, it having fully unfolded, I reflect on what I've written about the sorry state of Calvin's fractured hip and what it will mean for us. And I wonder if this might be one of those expansive experiences, and though it mightn't be true for Calvin, I realize I'm not really helpless at all. Rather, in my community, friends and family, I've got all the help in the world.

movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin's worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə, -ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.

Photo by Michael Kolster

march by numbers

too many fitful nights and risings before 3:30 a.m. one tired mama. four grand mals. zero focal seizures. three ice cream cakes assembled for friends. two cool, glow-in-the-dark nike running shoes from joanie. a bunch of 5Ks and a few four-milers equals one tender iliac crest. several weeks overcompensating. one foolish kid-lift. one wrecked, spasmy back on the mend. twenty-eight days abstaining from running (insert several sad emojis.) one book on healing back pain due to tension caused by the stress of anxiety and resentment; an excerpt reads:

her life remains as hectic as ever, she is perpetually tired and harassed, and she never feels as though she has done as well as she should.

it is pointed out to her that she will never cease being a perfectionist, that she will always have too much to do, but that the secret of getting over TMS (tension myositis syndrome) is not changing oneself but simply recognizing that the combination of the realities of her life and personality cause her to generate an enormous amount of anxiety and anger.

yes, anger too. she has probably never acknowledged the fact that although she adores her three little girls, she is simultaneously angry at them for what they require of her. the idea that she could be subconsciously angry at her children is outside of her experience. when she grasps the idea that the cure is in the acknowledgment of such unacceptable subconscious feelings, the pain will cease.

. . . one deep grateful breath for the validation of what i already consciously acknowledge but hadn't applied to injury. two stinging, weeping eyes for the suggestion. three major turkeys: one five-foot-one, ninety-two-pound boy giving me a run for my money; one ridiculous dog; one hard-working (seven days a week) husband. countless hugs from my son. a bunch of tasty perishables hand-delivered from friends. several good movies. four ounces of crushed cannabis bud being made into thca oil for calvin. one faded bouquet of tiny white daffodils with peachy centers given to me in exchange for a slice of ice cream cake. a dozen edited manuscript chapters. too many frigid days for this fair-weather, west-coast "kid." countless magnificent skies, clear and cloudy. nine- and ten-day stints between most of calvin's seizures. four fingers crossed that his seizures lessen. scores of crocuses smiling up at me. zero nights out on the town. zero family visits. zero vacations to exotic and amazing places. three family excursions in the confines of our car. one good cry. two social security supplemental income applications to complete for calvin. one pile of smellie's vomit scraped and rubbed off the rug. one cracked iphone. several tears shed. four covid tests for two long-overdue dinner parties. infinite thanks for friends who love and hug and kiss this zany chick. three bird baths quenching thirsty cardinals, jays, robins, chickadees and squirrels. scads of delicious dinners cooked by one loving and talented husband. a few quarrels. several long car rides. fifty-five, or so, nice walks on the trails and back roads. handful of friendly and much-appreciated encounters with strangers and friends. infinite satisfying panoramas. abundant gratitude.

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.

other people's troubles

Despite my dreams—of falling in love and of others falling in love with me, of soaring high above the trees and of breathing underwater—I clench my teeth in sleep. I know why. Years of anxiety over my son and his condition have gotten the best of me. The angst is worse when I lie awake at night and even manifests when I snooze.

My son had three days of fever triggering two grand mals followed by a rash on his face, neck and torso that got worrisomely worse before getting better. Today, he seems remarkably okay, though who really knows. In any case, he seemed good enough to send him to school, which meant I was finally able to walk the back roads, write, relax and make an ice cream cake for a friend.

These days, my worries and burdens feel petty compared with other people's troubles. I can't imagine what folks in war-torn nations must go through. In Ukraine, for instance, what might it be like to see satellite images of a forty-mile-long military convoy on its way to destroy you? To hear that Pootie plans on starving your people into submission and maybe even into oblivion? To scour empty grocery store shelves looking for morsels of sustenance for your children? To use your unarmed body to block Russian tanks and trucks from overrunning your home? For mothers, wives and children to have to leave their sons, brothers, husbands and fathers behind fighting a merciless aggressor? To go without shelter, food, water and medicine amid the bitterness of winter warfare? To wonder if your god will forsake you like in so many wars before?

That kind of hardship, angst, worry, fear and heartache is impossible for me to fully imagine. But I can try to get there in an effort to bear witness to their struggle; it's the very least I can do.

Yes, I worry about Calvin's wellness daily, if not more. But he has amazing doctors he can fairly easily access, and we get his medicine with little trouble. I don't get enough shut-eye, am up several times most nights, and can pretty much never sleep in past five or six, all because of Calvin. Yet, nightly, I sink into a cushy mattress, rest my head on soft pillows and pull warm covers up over my shoulders. Though Calvin misses too much school, mostly because of his seizures, at least he has a school to attend. We have heat for our home, electricity, too. We can purchase virtually anything our tastebuds and tummies might desire from the grocery store just down the road. We get all sorts of essentials delivered to our door.

I think about the Ukrainian refugees—all of them. I especially consider the families with diabetic, epileptic, cancer-stricken kids and those with other serious afflictions. How will they fare? How do they get medical care and life-sustaining medications? What happens to people who are bed-ridden or too feeble to flee? It's hard for me to comprehend that kind of anguish and suffering.

And so, when I'm apt to feel like crumbling under my burdens, I remind myself that I have so very much to be grateful for. Compared with other people's troubles, I really haven't much to complain about at all.

can't help myself

Tuesday night at seven, while Michael and I were eating dinner, I heard Calvin yelp. He was seizing. Michael and I ran upstairs, unlatched Calvin's safety netting and bed panel and scooted him toward us so his feet wouldn't strike the bed's wooden edge. When it was over, we dimmed the lights and ate the rest of our dinner, plates in our laps, while sitting vigil as Calvin tried to catch his breath before drifting back to sleep. It had been ten days since his last couple of fits.

I'm not one to shy away from a challenge, but if I knew how hard this mothering thing could be, I'm not sure I'd have signed up. While raising Calvin, I've experienced joy, pride, and immeasurable love, but too often it really sucks. Parenting him has meant sacrificing—almost entirely—opportunity, dreams, travel, leisure, freedom, a good night's sleep. Many parents might share these sentiments. But what I thought of as the promises and joys of parenthood (you know what they are, and I've written about them ad nauseam) have been replaced by a lot of grief and anguish. Since Calvin's birth, I've watched him endure more suffering than any little brain and body should—an excruciating and unnecessary intubation, painful IVs, blood draws and surgeries, digestive distress, relentless seizures including a horrifying one that lasted forty-five minutes, vicious drug side effects, agonizing withdrawal. I've seen days upon weeks upon months upon years of what I think might be nausea, migraines, tinnitis, cramps, akatheisa (acute and chronic restlessness), panic, and perhaps even psychosis. Nearly every day—whether for moments or hours—he doesn't seem to feel very good.

While many of us, including me, learn to live with the hardships of life, in some ways adjusting, I'm not sure that is true for Calvin; it appears, judging by his frequent moaning, shrieking, head-rubbing, eye-poking and howling, that his miseries persist. It's hard to imagine feeling bad so often. What kind of life is that for any child to live? Witnessing it nearly kills me (and doesn't make me stronger.)

In mothering my legally blind, nonverbal, uncoordinated, incontinent, autistic, seizure-riddled son, I've become a hypervigilant helicopter mama, and I haven't managed to find any way around it. My son's afflictions require I be on guard at all times to limit his risk for trips and falls and broken bones, choking, drowning in the bath, epileptic fits. I'm laser-focused on trying to lessen his misery—from headaches, tummy aches, toothaches, anxiety, hunger, thirst, restlessness, constipation, discomfort, and cold. It's my job. If you think that's an impossible feat with a kid who can't express in words, signs or gestures what is troubling him, you're right. I can only do my best to constantly anticipate, observe and analyze. I must rely on logic, common sense, and instinct. How else can one care for a kid who is such an enigma? My brain is working on treatments, preventions and solutions for any given situation pretty much around the clock. I even dream about this shit, both literally and figuratively.

Reasonably, or so I believe, I ask and expect similar vigilance in others who take care of my son. Regrettably, however, my hypervigilance seems to lead me to micromanage. Though I don't mean to, I can come off as critical, which is sometimes met with defensiveness. I get it. Though my intentions are good and I try to be kind, I'm perhaps not the best messenger for my own messages, in part maybe due to my assertiveness and candor which—for whatever reason(s)—are often not appreciated, valued or understood. To make matters worse, in my hypervigilance I often vacillate, communicate too much information or not enough, causing others to second-guess for fear of making a mistake. They tell me they don't know what I want. Self-deprecatingly, I tell them no one does. Half the time I'm not even sure if what I recommend for Calvin is right; I often question myself. Just as the book What To Expect When You're Expecting proved utterly useless to me during and just after my pregnancy, there's no handbook for taking care of a kid like mine.

But one thing is for certain. There is a method to my madness: to keep my son as happy and feeling good as possible despite his circumstance. And in that way, perhaps it's a blessing and not a curse that I just can't help myself.

Photo by Michael Kolster

the kids are all right

It was the first rough night in awhile. Calvin was restless for hours before waking up around 1:00 a.m., then never went back to sleep. Michael tried sleeping with him. I gave him extra THCA cannabis oil, a few sips of water and a couple of ibuprofen. Michael changed a diaper. But our efforts proved futile, so—exhausted—we finally left Calvin alone in his safety bed with his toys, lights and music while we tried to get some shut-eye despite his banging and howling in the attached room. My guess is he is ramping up to a seizure, probably tonight.

Having said that, Calvin has had only three grand mals and one focal seizure in the past thirty-one days. That's the fewest number of monthly seizures in over a year, and the fewest number of days with seizures in a month's time. And though Calvin could easily have three or four seizures in the next day or two, I'll take it over having seven to nine grand mals plus a smattering of focal seizures in a month's time (though if he does have a bunch of seizures this weekend, you can be sure I'll be grieving.)

But if he enjoys another longish stint between seizures—say, nine-plus days—I'll begin to think the new drug, Xcopri, might indeed be working to lessen his fits. Let's hope so. We kids need a break.

In the meantime, when Calvin is in school or at home with Michael, I'm managing to get out a bit for long walks in the mist, sun and wind, and on slushy, icy fields and trails. I'm having fun capturing some magnificent landscapes and skies on my cell phone and Panasonic, plus taking shots of Smellie and the ever-changing, sometimes dramatic evening skies at the fields. Layers are coming off in the milder weather, and songbirds are singing from tops of trees. Tons of smiles and waves have been coming my way, as well as visits with chatty strangers (must be the springlike weather). I'm slowly editing and adding to my memoir manuscript, which at this point is over fifty-six-thousand words despite having been largely neglected during the first two years of this damn pandemic. I'm having fun hanging out with my husband in the evenings listening to and watching Led Zeppelin and The Beatles, dancing like a fool in front of the fire, making us both laugh, watching some nice films and reading some good books.

So, yeah, in the scheme of things and for the most part, I'd say the kids are all right. 

eighteen

Eighteen years ago today—six weeks before his due date, two weeks after a sonogram revealed an alarming absence of white matter in his brain, and a week before a scheduled cesarean at Boston's Children's Hospital—tiny Calvin came into the world during an emergency cesarean at Portland's Maine Medical Center—in the middle of an ice storm. I guess that's how he rolls.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children were provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three-and-a-half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after eighteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for eighteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I think about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mushy mess of motherly love. I guess, in that sense, we're no different than anyone else.

Happy birthday, Calvin. You're the best! We love you so much.

Photo by Michael Kolster

longer stretches

Hours before dawn, I curled up next to my son for the second morning in a row as he shivered and shook in my arms. After the last increase in Calvin's new medication, Xcopri, he went two weeks without any seizures at all, which is a decent stretch of recent. It seems, however, that he has a pattern of going for "longish" seizure-free stretches, followed by one seizure, then going for another longish stretch, only to have a cluster of two or more seizures. In effect, he doesn't really seem to get ahead in terms of fewer overall seizures, which, of course, is the goal.

Witnessing Calvin seize is always distressing. Each grand mal—the kind he most often has—starts with a blood-curdling shriek or howl, which sounds as if he has seen something absolutely terrifying or is being murdered. I can't describe it any other way, but it's a horrifying sound to come from anyone, especially one's own child. As it happens, Michael and I jump from our bed (the seizures almost always happen in the middle of the night) unhook and unlatch Calvin's safety net and bed panel, then kneel down next to him. Michael gently holds Calvin' hands and offers him reassuring words as he convulses like, good job Calvin! in an attempt to help slow it, while I make sure Calvin doesn't break his toes kicking the wooden lip of his bed. About ninety seconds later, when it is over, we watch the color come back into his dusky fingers, toes and lips. It takes Calvin several more minutes to totally catch his breath owing to fluids and/or soft tissues that seem to periodically obstruct his airway. Then, when that trouble has passed, I syringe a milliliter of my homemade THCA cannabis oil into the pocket of his cheek in tiny bits; this seems to prevent a second seizure from occurring after he falls back to sleep.

I'm sitting here now wondering if last night's storm and low barometric pressure had anything to do with triggering his fit; it does seem like they are sometimes weather-related. In any case, he's not really well or strong enough to get into the car for a ride. He's also restless, on and off the couch, and not eating much to speak of. But, he is doing better than after yesterday morning's seizure, which is encouraging, though I wouldn't say he's out of the woods yet.

We increased Calvin's new medication again last night, but it will take a week or two until it reaches what's called a steady state, that being a higher constant level in his blood. I hope he doesn't begin to suffer badly the side effects the drug is mostly known for, which is dizziness, major fatigue and lack of appetite. It is hard enough keeping weight on this kid.

So for now, we will hunker down at home listening to music and to the snow plows and blowers outside. I'll get outside with Smellie for another walk in the woods when Michael gets home from working in his studio. I'll sit on the couch in the sun writing, and I'll dream of springtime and flowers and of longer seizure-free stretches for my kid.

In the wake of a seizure, April 2020

a good day for musing

it's a good day for musing: on crystalline skies and arctic climes; on bundling up and trudging down open roads; on icy patterns fanning across salt-blanched tarmac and pristine white ponds; on a twenty-something runner with thick-braided pigtails jogging past me, smiling and breathing in time with her rock star companion, steven tyler; on a place so calm the music still found my ears from half a mile down the road.

it's a good day for musing: on the beauty of a frozen tidal cove; on its greenish gash resembling a clownish mouth, white pancake makeup and all; on its vast flatness; on the footprints of those who dared walk across as it invisibly ebbed and flowed; on the marvel of ever-changing landscapes; on two huge birds perched atop a gnarly oak; on their wide wings and undersides white as snow; on a skinny dog who runs to my side from the middle of the road whenever i call; on the musky scent of weed wafting from an open window of a passing truck; on having—only minutes before—filtered some alcohol-soaked bud in the making of calvin's cannabis oil, filling the house with its rich aroma.

it's a good day for musing: on freezing cold fingers sheathed in polypropylene gloves; on unknown yet friendly ones which wave to me from behind windshields; on the satisfying click of my panasonic's shutter when i push its shiny metal button; on finding someone's running shoes which had been buried in the blizzard then unearthed by a passing plow; on who might be missing them: perhaps a pigtailed runner?

it's a good day for musing: on juniors and seniors; on having known them and watched them grow; on infants and toddlers who turn into runners, skiers, skaters; on grade schoolers who morph into gawky tweens and smart, creative, athletic teens; on ellis, a sweet, curious and extraverted girl—calvin's first grade classmate, his first and only play date; on her mother, who stops by sometimes with flowers, jars of homespun applesauce or tins filled with herbal salve; on the bit of my childhood self who i see reflected in ellis—her effervescence, wit, energy, and unabashedness; on ellis' friend fiona, with whom i used to read books at school as calvin flailed, who now—all of a sudden—seems so grown up.

it's a good day for musing: on finnegan and his mother; on bringing the world to her in loving words and photographs; on our picnic and long walk one evening last summer; on reliving the feeling of jumping with her in the dark from a nearby bridge into brackish waters while wearing almost nothing; on the freeing feeling of trusting others; on laughter and weeping; on the sensuality of maine's extreme weather—heavy and sweltering at times, at others, clear and light with cold that cuts to the bone—all worth feeling.

it's a good day for musing: on my enigmatic child who never grows up; on the toys he's loved and chewed for years; on his wordlessness and seizures; on his peculiarity and fleeting moments of normalcy; on his steadfast and loving behavior; on having just had one of his best months, seizure-wise, in two years; on beauty in all its forms, understanding, forgiveness, gratitude and hope.

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known several years, picked up the phone, my tears began to flow. I had called hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sophie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough to ground me. But I lost my mother to Alzheimer’s by degrees over ten or more years, then finally in early October of 2015. 

It seems, too, that I lost a dear friend, a single woman I'll call Stacy, who has no children and with whom I was very close. I had years ago called her in a similar moment of grief over Calvin, needing someone to listen, my mother having long become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

"Christy, ever since Calvin was born you’ve been so angry."

She went on to talk about acceptance, compelling me to ask her whether acceptance had to mean the denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find its balance. Hearing this widely-held and appealing theory offers me little consolation, the cosmos often feeling so much as if it tends toward chaos despite its astonishing beauty. After her mention of balance, we lost the phone connection mid-sentence. She rang me back, but I didn’t pick up because I felt more disheartened than before I had called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understood her meaning—knowing we all have our burdens to bear—she's never experienced anything close to what I have with Calvin. Still, I had tried my best to be open to what it was she had said on the phone, though I must admit I probably failed to hide my agitation. She ended her email with this:

my intent is unwavering which is simply to love and support you. 

I replied immediately:

i know. xoxoxo

I haven’t heard from her since; it has been nearly seven years. I wonder if she knows about my mother's death. I didn't contact friends when Mom died—didn't have it in me. But people soon learned from reading my blog.

Not long after that phone call, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sophie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. When I reached her I could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving her daughter, one that helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration, and anger, and about the parents who claim the graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for present and persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, complaints and pity parties. We agreed that being able to vent our frustrations, by writing, cursing and sometimes screaming, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth wrote to me, after I lamented not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we were next door neighbors. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better even though we hadn't really spoken.

Photo by Michael Kolster