reason and being, purpose and meaning

I watch as a boy of five or six falls off of his bicycle. Somewhat remarkably, he lands squarely on his hands; his feet quickly follow. Having escaped injury, he rises and claps triumphantly, then begins to do a goofy, self-styled boogie, which is perfectly annoying to me. The caption on the video reads, "This should be your reaction when life challenges you."

For starters, I'm not a fan of the word, "should." I try not to "should" anyone, including myself. The rest of my cynical response to the video was—like most things—informed by my profoundly disabled, nonverbal, seizure-prone son. Calvin had just come off of a very shitty few weeks which began with back-to-back grand mal seizures, followed by waves of excruciating pain of unknown origin, the likes of which reminded me of Hollywood torture scenes. Ultimately, Calvin landed in the emergency room on New Year's Eve with an agonizing case of viral gastroenteritis and/or a problematic gallstone, which—after reviewing X-rays, a CT scan, and several blood draws taken at ungodly hours—the doctor said had likely caused the aspiration pneumonia in Calvin's left lung. We were released from the ER the following morning, and though I was relieved to be out of there, I didn't feel like dancing a jig; I felt only grateful that it seemed we may have dodged the latest bullet in Calvin's lifelong barrage of them.

Calvin reminds me daily that not everyone is equipped or inclined to celebrate or give ourselves high fives after life's nasty pitfalls, even if we eventually land on our feet. Sometimes, some of us come away from challenge and hardship feeling confusion, guilt, insecurity, anger, angst, resentment, exasperation, despair. My first reaction to the dancing boy was to acknowledge that not everyone is sailing along in life in the first place, or lucky enough to avoid misfortune such as hunger, war, poverty, displacement, abuse, injustice, depression, the death of a child, or one born to a life of profound physical and cognitive limitations and miseries, like Calvin. Call me a Debbie Downer for criticizing what some might consider a harmless, light-hearted video. I mean, I get the gist, and I'm generally an upbeat optimist who sometimes even welcomes challenge, however, I look at certain subjects through a more serious lens than others.

The video also reminded me of the countless times people have told me that everything happens for a reason. Though the sentiment is meant to be comforting, I generally respond by disagreeing, then go on to explain my preference for the notion of gleaning great purpose and meaning from life's hardships (a practice which can also be elusive to some) as opposed to there being some mysterious reason baked into every awful thing that happens. If I probe, some folks claim that bad things happen to teach us lessons. I usually respond by telling them I am not worthy of my son's suffering. Others say we can't know the reasons for mishaps and tragedies, but that God has a plan. I'm always left wondering: if there is an omnipotent god with a plan for everything, why does it so often include godawful misery, and how is that not deeply disturbing if not unthinkable? Would an all-powerful god orchestrate every little scrape and bruise I get and/or the immense suffering my son endures? Does God stage and sanction starvation, war, genocide? What kind of god has a reason—and what in God's name could that reason be—for the torture of "his" beloved children at the hands of others, or from excruciating illnesses? And if God isn't responsible for orchestrating horrors such as mass shootings, catastrophic fires, floods and earthquakes, then why doesn't "he" rescue us from suffering? Even we puny humans will do virtually anything in our power to save our children from pain. Why doesn't God? And if there is a reason for everything, what does that say about the notion of free will? Lastly, some people say God is testing us, and my immediate response is to ask: for what purpose? To what end? Is God conducting some test of fidelity, and if so, what deep conceit does that reveal? And what would be the point of testing us, knowing we are impossibly fallible beings?

I've found myself ruminating over the bicycle-boy video and related conversations for weeks, and I'm taken back to my childhood. Despite being raised Catholic, I began doubting the existence of a merciful, omnipotent god when my best friend's two-year-old sister nearly drowned in their nearby swimming pool. I had been outside when I heard the dog barking and the mother discover her baby girl lifeless in the water. I had never heard a grieving human shriek and howl so animalistically. She fished her daughter out of the pool and resuscitated her. The child survived, but was in a coma for at least a week and emerged from it no longer a toddler, having lost every one of her acquired skills. Her recovery, while not utterly complete, took years. I'm surprised her mother survived the ordeal, and I wondered if she felt as if God were punishing her for some petty transgression. It didn't make sense to me that a merciful god would allow any of "his" flock to suffer and grieve so deeply. It all seems so utterly senseless.

In continuing to ponder the theory that everything happens for a reason, I wondered if maybe that reason is merely that we exist. Perhaps it's as plain and simple as that: we exist, and therefore things happen to us. It seems reasonable that all things great and small, as in nature—rain, sunshine, hurricanes, earthquakes, moss growing on trees—just occur without any divine reason. In other words, as the saying goes, shit just happens. It makes sense to me—and frankly is far more comforting than the notion of a god with a secret plan sitting idly by while we are tormented—that our every move isn't governed, decided, judged and orchestrated by a god. And, too, maybe overcoming life's nasty challenges and curveballs isn't always reason for smug celebration, but rather, a time for reflection, gratitude and humility, especially considering so many of our fellow beings, through no fault of their own, live in a world of misery.

Photo by Michael Kolster, August 2021

riches

A train whistle awakened me, the rumbling of its wheels somehow comforting, yet simultaneously mournful in its reminder that I'll not soon be boarding one and taking it places. Like those wheels, my mind turned in circles with a touch of nighttime angst. What will the future bring? How long will I be confined to this place and this difficult task of being Calvin's mother, nurse, teacher, companion, aide? Will I ever again step across borders to explore great unknowns?

Earlier, at the edge of a bonfire, I stood, fists shoved into my pockets, fighting the cold. The fire at my feet warmed my thighs, Lauren's hot glögg, which I sipped from a glass mug, my gut. Friends and neighbors had gathered to celebrate the solstice. Breaths and words left their lips in frosty puffs. Dried onion skins, charred white, floated up from the fire like ghosts. Jupiter and Mars peered down on us.

Back at home, before the bonfire, my boy had been thrashing in bed, suffering some sort of discomfort. I decided to give him some extra THCA cannabis oil, some drops of herbal rescue remedy, plus acetaminophen. Then, I laid him back down again. The concoction worked to calm him, and he seemed to fall asleep as soon as his head hit the pillow. Worry followed me anyway.

Later that night, as I laid awake listening to the train cruise through a nearby neighborhood, I wondered if I'll have to take care of my son for the rest of my life—or for the rest of his. It's a thought I try as best I can to keep at bay, its consequences daunting—the thought of this traveler in an immovable life rooted in what has already been two decades spent in the same nation, same state, same town, rarely escaping in over eighteen years to California, New York, Seattle. The alternative is just as frightening.

And then came yesterday's new moon and raging storm, which brought high winds and sideways rain. In just hours, the temperature plunged from fifty-four to just fourteen degrees. The power went out in the afternoon. Luckily, last year we got a generator, so we had light, refrigeration and heat. Still, I was awake last night from midnight until after three o'clock a.m. worrying about the thousands of folks without power and heat for their homes. I padded downstairs to check my phone in case any neighbors had texted me looking for help to warm their bones. Thankfully, it seemed everyone was safe and sound.

When I crawled back into bed, I was reminded of the train I heard on the night of the solstice, and the anxiety and self-pity I had been feeling about our impossible situation with Calvin. I thought about the isolation and limitations that come from caring for Calvin, but as I thought further on it and considered our fortune to be warm and dry amid the crazy wildness outside, I began to see the riches that have come with having had Calvin. Had it not been for him, I might never have begun writing. Perhaps I'd never have begun quilting, or baking again, or running. No doubt, had we not moved to Maine where he survived—against nearly every odd—his premature, medically-complicated and fraught birth, I might have missed developing scores of deep and loving friendships with doctors, nurses, farmers, carpenters, teachers, ed techs, mothers, fathers, marathoners and other runners, professors, deans, students, artists, other writers, journalists, restauranteurs, film makers, builders, bakers, octogenarians, and dear, whiskey-swilling neighbors.

So, in the early morning hours of our secular Christmas Eve—a holiday to which Calvin is oblivious—as the storm still tossed around huge boughs of white pines—the same ones I rested my eyes upon in the first days of writing this blog twelve years ago—I realized how ridiculously rich my life really is, even in the confines of these four walls with my little ball and chain.

Photo by Michael Kolster

holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.

lost boys

I was going to write about why I haven't been writing much (instead, busy with running, some autumn gardening, taking care of a recently-sick Calvin, and doing online modules to complete my DSP (direct support provider) "training" so that I can begin being paid a little for taking care of Calvin. I was going to write about the fact that, on a moderate dose (100 mgs) of Calvin's newest drug, Xcopri (cenobamate), he's been going longer between seizures (thus having fewer), and that he didn't have a fever or a febrile seizure after last Friday's Covid booster. I was going to mention that he hasn't had any focal seizures since February, and that, overall, his behavior is better.

I was going to write about our near-perfect trip to the Cumberland County Fair yesterday where, under hazy, lavender-ish skies, Calvin did some amazing, albeit brief, stints walking by himself (too good to be true? we wondered aloud) down and back through a barn of draft horses and even a bit further. I was going to write about how straight and stable he sat at a red picnic table drinking from his sippy cup, that he enjoyed bites of warm, cinnamon-sugar donut, that all day long he signed "eat" very well, putting his finger to his mouth when he wanted more.

But, halfway through our time at the fair, when the crowds began to gather choking the pathways, and the midway rides ignited their noisy motors, and the hot sun began to filter through a bit too strong, Calvin's relative well-being seemed to go south. His intermittent walking deteriorated, so we put him back into his stroller. His skin felt hot. His face went pale. He began to perseverate, elbows crooked and waving, knitting his fingers. On the drive home, he batted and grabbed for me incessantly as if to be saved from something.

Then last night came the perfect storm—the new moon, a drop in the barometric pressure, perhaps a semi-latent affect from Friday's Covid booster, the sky opening up to unleash one of the hardest downpours I've heard since moving here—and at 2:45 this morning, Calvin had a grand mal seizure. It had been fifteen days since the last one. This time, when the fit was over, I gave Calvin twice as much of my homemade THCA cannabis oil as I usually do, hoping to prevent a second one from striking like they often do. Thankfully, it seemed to work.

As I laid in bed next to my boy in the pitch black of his room, I thought about the day's events and the looks Calvin got from strangers—some kind, others curious or suspicious, perhaps even put-off. I thought about the rides I would've liked to have taken him on, the animals I wish I knew if he saw and wish he could enjoy petting, the contests I wish he could've entered if he wanted to, the fact that, in ways, Michael and I wish we could've been at the fair without him.

As Calvin slept, at times arching, I thought about our ride home through parts of Freeport, Maine, where good neighbors and authorities were and are actively searching for a skinny fourteen-year-old boy named Theo who went missing four days ago wearing shorts and flip flops as nights dip into the forties and fifties. I wondered what happened to him. Was he snatched up by a nefarious actor? Did he fall into a hole or into frigid waters? Was he bullied into a state of anxiety, depression or some sort of submission? Did he end his own life? Was he trying to escape something or someone?

Then, I thought about the bluegrass concert given at my friends' gorgeous farm last Friday night in memory of their young and precious son, Finnegan, who died in a kayaking accident last November. So many amazing and loving people gathered together to make food, music, and memories in honor of a beautiful boy—at nearly 24, a young man, really—who was lost far too soon. I felt grateful to have been able to be there, at least long enough to give and get some hugs, to visit with beloveds a bit, and to remember my young friend, Finnegan, for the incredible human being he was.

In thinking about Theo and Finnegan, I considered the grief I feel over my own lost boy. I often wonder what would have become of Calvin—or what he would have become—if he hadn't been born missing most of the white matter in his brain. I mourn the loss of a boy who is flesh and blood sitting right in front of me—the loss of his artistic, athletic, academic, physical, philosophical, humanitarian potential. The loss of seeing him make friends and meet new people, and of us becoming their close friends, too. The loss of seeing him fall in love. The loss of the potential of having a growing relationship with our adult child. The loss of possibly having a grandchild or two to dote on.

Then, I think about my blog and memoir in progress and how I'd never have started writing them if not for my boy. Perhaps I wouldn't be quite so charmed by gardening if I didn't feel the need to shape nature since I can't control my son's regrettable disabilities and miserable afflictions. Maybe I'd never have started running (again) if not for need of an escape from a hard and restricted life of mothering an impossible infant-toddler-teen. Maybe I'd never have embarked on my pandemic back roads travels, which have bore new friendships, sparked a love for taking copious panoramic photographs, caused me to reflect so deeply on life and the mundane. These amazing endeavors I'd likely never have chanced upon if not for Calvin.

And though it's no consolation, my lost boy and what he has brought to me and to others is so worthwhile, and worth pondering. 

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?

 

like no other

Like wax off of a candle, the days drip, drip, drip. In profound ways, each one is nearly identical to the last and will be very much like the one after. Events beyond the mundane rarely happen. This trend has lasted for nearly two decades and will likely continue for at least as long. I'm not completely sure how I've been able to or will deal with the monotony of it all.

The only real change is that my boy is older and bigger. And yet, at eighteen, every day I still have to spoon food into his mouth. Change his diapers. Give him his medicines. Bathe him. Dress him. Walk him around. Get him to poop. Wipe him up. Put him to bed. Listen for him in the night. I must watch him knit his fingers, poke his eye, stare at the sun, suffer miserable side effects and seize. I have to listen to him moan and grouse and screech and feel him grab and scratch at me. Now and then my patience thins, and when Calvin stretches it to its limits, I become ugly both inside and out. Perhaps you know what I'm talking about.

Monday was one of those days. Though the weather was stellar for riding bikes, boating, fishing, hiking, swimming or going to a park, I was stuck with an out-of-sorts son making circles inside the house, in the yard, in the car. Despite the Independence Day holiday, Michael was off taking pictures, because what is there to do that is any fun for us as a family? It seems we've tried it all before and have met mostly with dismay and frustration. With Calvin in tow, beaches, restaurants, cafes and strolls are all virtually impossible. Adventures of any kind are a major undertaking and often end in disappointment since our son is incapable of sitting still or attending to any activity or subject. I wish that were hyperbole.

And so, again, I sat at home feeling sorry for myself. Perturbed, I pined for an escape—San Francisco, Seattle, New York, Paris, Lisbon, Rome. Places in which I used to live and those I've visited and roamed.

Monday morning, Calvin and I went on our daily drive—a kind of respite for me even though I'm not alone. He bitched the entire time like he used to all too often. On our way home, we drove past a friend's house. She and another gal were outside soaking in the gorgeousness of her perennial garden, lounging in the shade draped in a couple of butterfly chairs. Their sun hats seemed to float over the day lilies beginning to bloom. I felt a pang of jealousy. In waking hours, Michael and I can't take our eyes off of Calvin. We must take turns watching him, staying within arm's reach so he doesn't fall. Can't leave him unattended for a second unless he is secured in his safety bed, and even then we have to listen for him over the baby monitor. There's no escaping him. Can't find real relaxation and solitude. Can't send him anywhere on his own. In that way, we don't have much freedom unless he's with his pal Mary or at school.

In the late afternoon when Michael got home, we all drove to Pennellville to pick up our friends' farm share since they're out of town. Afterward, we drove out to nearby Simpson's Point which is a regular stop on my morning drives with Calvin. We pulled into the turn-around, parked and watched the bathers from the car. Michael spotted a friend and went to say hello. I got out of the car to take a few nearby photos while Calvin sat in the back seat gnawing his toys. Our friend's wife emerged from the waters and came to visit with me. So that I could keep an eye on Calvin, we stood next to the car catching up about our boys, our gardens, our various goings-on. Eventually, I openly lamented the monotony of my days with Calvin. Then, in what I believe was a loving and concerned attempt to level the playing field, she told me that the sameness of days is something everyone experiences, that it was that way for her at work, too. I told her, with gratitude, that I hadn't exactly thought of it in those terms before.

But late that night, after I had gotten out of bed for the third time to lay my restless boy back down, cover him up and to wrestle his bed pad which had gotten untucked and buckled under him, I had a thought: the monotony of my days is wholly different than what my friend was talking about. This was an eighty-plus degree holiday weekend, a day made for barbecues and picnics, watching parades and fireworks or taking a dip in the cove. Michael, Calvin and I were there in our street clothes. We had simply been on an errand and had taken a detour. We were not sunbathers, swimmers or waders. Our teenager was not frolicking in the water with his buddies. We were not there reclined in fold-out chairs reading our favorite novels or sipping iced drinks from a thermos. We were not resting under wide-brim hats in the shade. Those are things we never do, don't have the luxury of doing with Calvin because he can't sit still. We were doing what we always do when he's around, which is practically nothing beyond driving the back roads. And yet, we were grateful for our astoundingly serendipitous "adventure," and to get a slice or scent or taste of what others were able to immerse themselves in, some of them perhaps for hours.

After a short visit (we had to get home for Calvin's evening seizure medicines and early bedtime, otherwise we would have lingered) we said our so-longs to our friends. But before we drove off, I decided I should at least test the waters. I padded down to the boat launch past folks in bikinis and tanks, trunks and sunglasses. Before we had embarked, by a streak of luck I had slipped into my flip-flops for the first time this summer and had rolled my jeans up. I stood at the water's edge and let the gentle waves lap over my feet and ankles. It felt refreshingly cool, though not too cold for a swim. There on the point, I closed my eyes for a moment as if no one were around. Tipping my head back, I felt the sun and the salty wind kiss my face and neck as if a lover. For a split second, I let the elements take me somewhere far away and exotic.

And as I finish writing this, I realize Monday had turned out to be a day like no other.

Simpson's Point

choices

Awhile ago, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With today's news about the Supreme Court reversing Roe vs. Wade, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the fetal tissue or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to agree, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over eighteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned the possibility of blindness or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, happiness, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused and neglected by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see the terror in his eyes and malaise on his face, be a veritable guinea pig enduring the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after eighteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings and seizures. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Years ago, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:

I’ll be honest. This week’s news cycle has been exhausting and painful. 

This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul-wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 

Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of mostly men in suits and ties and robes meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding nuance and empathy are required, not hyperbolic, false propaganda, and disingenuous political posturing by men in positions of power who'll never be pregnant, nor their female counterparts who shove their religious, dogmatic agendas down others' throats. We need to listen to women's stories and trust them to make the best, well-informed choices they can when their lives turn upside down by an unplanned pregnancy or one that took a turn for the worse.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With access to safe, legal abortion having just become harder in some states and impossible now in others, our mothers, daughters, sisters, wives and partners, especially the poor and people of color, are facing similar peril—forced pregnancy no matter the circumstance, unsafe, back alley abortions, suspicion and punishment in cases of miscarriage—when what they need most is love, understanding, support, and the ability to make their own choices for themselves.

graduation day

Calvin would be graduating from high school today with so many of his proud, talented, smiling peers if things hadn't gone so terribly wrong from the start. For reasons we will probably never know, life with Calvin didn't turn out like we had hoped. What I thought of as the promises of parenthood did not deliver. 

While in the garden today, throwing mulch down, pruning, mowing the lawn—controlling that over which I have some semblance of control—I thought about all the ways in which the three of us have been cheated. You've probably heard it all before. We have been deprived of: seeing our child in school concerts and plays; cheering him on at athletic events while making friends with the parents of other athletes; joining family potlucks and picnics and pizza parties and movie nights; seeing our boy bring a sweetheart to prom. These are but a smattering of what we have had to forego because of Calvin's conditions, and thinking of them makes me sad second-guessing our decision not to have another child, albeit a healthy one, so we could cash in on some of parenthood's most precious experiences.

Michael and I have missed the chance for dinner conversation with our child, the chance to hang out with him at the beach, the mountains, the swimming hole, the movies, at restaurants and other venues. We have missed sharing our love of camping with him and have had to give up on that venture all together. We have missed the chance to leave him home alone so we can walk the dog or go for an impromptu anything together as a couple. We have been cheated out of seeing our boy excel in whatever he might have enjoyed, and perhaps gracefully endure defeat and failure. We have been robbed of watching him become a man. We've been cheated out of seeing him travel, study, have friends, fall in love. We'll never know the joy of having grandchildren.

While rereading this, I feel like a major whiner. So many people have it so much worse than we do, deprived of their basic freedoms, of food, shelter, water and modern conveniences, of seeing their loved ones. From where I'm sitting outside, I gaze out over a glorious garden of my making, the early-evening sun shimmering through the maples while I hear Calvin upstairs, with Michael, patting on the windowsill of our bedroom. The bell of the college chapel strikes half past four. A soft, warm wind blows a couple of wind chimes. I'm so goddamn lucky, I think to myself.

And so when I see the families of graduates tonight—some of them my friends' sons and daughters—stepping out of their cars parked in front of our house, I'll be both happy and excited, living vicariously through them as I do of other's travels. I'll also be silently heartbroken, and may shed a tear when I look into my husband's eyes tonight over a glass of wine and a lamb burger. But I'll also be full of gratitude looking out over a garden which I have shaped and sheared into a sanctuary I can appreciate as much for its beauty as for all the promises it reliably brings to me each year. Most of all, I'be be grateful for a son who, though he's not destined for college or travel or rocket science or journalism or art or marriage, still gives me what I wager every parent wants most from their child.

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

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

while alive

delight in the mundane. step outside—of doors, shoes, boxes, habits, expectations, comfort zones. dance like a maniac whenever compelled. sing until it hurts. scream until it swells and burns. let go more than once in awhile. marvel at the day-to-day. honor every emotion—bliss, anger, grief, sorrow. trust science and trust your gut. stand up for yourself and others. pursue truth. read books voraciously. explore new genres. try unfamiliar foods. keep your friends' secrets untold. jump pantless off low bridges into warm waters. eat cake for breakfast. hug others often as possible. damn all forms of bigotry. say i love you often. let go of petty obligations. question organized religion and its patriarchal architecture. embrace nature. befriend those who are wildly different from yourself. live simply. give to others. turn to music and film. breathe deep. love misfits and weirdos. forgive yourself and others. release regret and resentments. abandon fear and angst whenever possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. travel the world if you can, and if you do, get to know the locals, their language, their food. expect success. fail miserably—at anything. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. get lost. take risks while taking care not to hurt others. founder, but move forward with as much grace as can be mustered. listen well and live awhile in others' shoes.

looking into a chunk of ice i found on the side of the road.

dear finnegan

i wish i knew you better. though perhaps i did without really knowing it, until now, maybe. until having been compelled to think of you more deeply since your passing last month, which was far too soon. i wish i had carved out more time to be with you. in the same way i wish i could with my own son, i wish i knew your innermost feelings, hopes and dreams. in each case, that will never be. still, i miss you, and the world misses you, too, finnegan.

i think i knew you mostly through knowing your people. like your kin, you had a special kind of pull. like gravity on tides. a vessel's longing for water. a river to open ocean. waves yearning for the shore. and, like your family, you were a poem.

like your mother, my dear friend lucretia, you were generous. blushing. earnest. nurturing. hard-working. beautiful. welcoming. creative. down to earth. maverick.

your father, michael, was in you too. you were gifted. adventuresome. athletic. artistic. handsome. industrious. clever. funny. loyal.

like your siblings, seamus, maeve and daire, you were an old soul from the beginning—wise beyond your years. genuine. kind. humble. pure. accepting. thoughtful. intelligent. insightful. tender. caring. exceptional.

and, yes, you were exacting too.

yesterday, at your memorial, hot apple cider was served in paper cups under a peaked white tent atop a slope. school buses parked aside the field having just shuttled scores of mourners eager to celebrate and remember you. men in woolen shirts and boots gently poured watery rings around the modest bonfires they'd built, the crackling timber turning satin-black and ashy white. smoke and its consoling aroma lingered before dissolving into the chill. as the ceremony got underway, hundreds of folks began streaming downhill toward the podium. from the center of the crowd, i waded crosscurrent hoping to reach the edge, slowly weaving between people as best i could to avoid disturbing the flow.

i stopped alongside a low wire fence flanking a field of windswept grasses. the crowd stood silent on three sides of me, a sea of winter jackets, and hats with fluffy pompoms. there were people of all ages. many of them dear to me, though most of them unknown. as a dozen or so of your closest friends shared stories of knowing and loving you, finnegan, i listened while sometimes gazing out over the pasture. i imagined you running its length as a child. perhaps doing cartwheels and somersaults on days like these. at that moment, the meadow—which just three weeks earlier had been shrouded by a river sky—resembled a vast channel. its tufts of windblown straw appeared as gently rippling rapids, though golden, each wave cresting in the same direction—downstream. thirty minutes on, i glanced back over the field to see the half-moon rising in the southeast. a tiny cloud or two drifted amid the liquid blue sky, the sun nearly kissing the earth as if mother and child. thinking of you, finnegan, i was moved. bowing my head, tears dropped onto soggy reeds beneath my feet as i imagined standing in a river next to you.

at your gathering, a wise, gentle woman said that grief's element is water. i don't know if that's true. but it makes sense to me, finnegan. grief and loss, like water, can knock us down like a breaker in the sea. i know. it can move us and move through us, like a drink. i know. and as tides and rivers are wont to do, grief can bring us somewhere new. i know well that truth; my own river—its headwaters born with calvin—continues. but if anyone had the ability to move others in life and in passing, clearly, finnegan, it was you.

lonely road

When channeling my inner Joni Mitchell, and with the exception of a few lines which I've taken the creative license to omit below, I can imagine having written this bittersweet song—All I Want—about me and Calvin. When life mimics art, it can be a killer.

 

I am on a lonely road and I am traveling

Traveling, traveling, traveling

Looking for something, what can it be

Oh I hate you some, I hate you some, I love you some

Oh I love you when I forget about me

I want to be strong I want to laugh along

I want to belong to the living 

Alive, alive, I want to get up and jive

I want to wreck my stockings in some juke box dive

Do you want—do you want—do you want to dance with me baby

Well, come on

All I really really want our love to do

Is to bring out the best in me and in you too

I want to talk to you

I want to renew you again and again

Applause, applause—Life is our cause

When I think of your kisses my mind see-saws

Do you see—do you see—do you see how you hurt me baby

So I hurt you too

Then we both get so blue

I am on a lonely road and I am traveling

Looking for the key to set me free

Oh the jealousy, the greed is the unraveling

It's the unraveling

And it undoes all the joy that could be

I want to have fun, I want to shine like the sun

I want to be the one that you want to see

Want to write you a love letter

I want to make you feel better

I want to make you feel free

2017, photo by Michael Kolster

success

To laugh often and love much;

To win the respect of intelligent persons 

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty;

To find the best in others;

To give of one's self;

To leave the world a bit better,

whether by a healthy child,

a garden patch or a redeemed social condition;

To have played and laughed with enthusiasm

and sung with exultation;

To know even one life has breathed easier

because you have lived.

This is to have succeeded.

 

—Bessie Anderson Stanley 

blasts from the past in the not-too-distant future (fully vaxed!)

real celebrations. byobs. potlucks. barbecues. standing elbow to elbow. face to face. cheek to cheek. long and frequent embraces. diminishing situational diameters. gatherings longer than an hour and with more than four people. seeing maskless faces. indoor time with my peeps. eating in the screen porch. visiting with neighbors on the same side of the street. making new friends. getting help to take care of calvin. visions of sending him back to school. working in the garden without having to mind calvin. a house full of people. a house to myself. visiting friends' homes. sharing the sidewalk. sitting in close circles around the fire pit, dining table or wood stove. roaming the fields. biking or running the roads. maybe one day going to movies and restaurants. maybe bellying up to the bar with my chickies. sound sleep. deep dreams. carefree thoughts. easy breathing.

From eleven years ago, but you get the idea. photo by Timothy Diehl

the still waters of yesterday

today, i twice drove out to simpson's point to unwind. the still waters of yesterday had been replaced by endless tiny whitecaps lapping the shore. i cut the engine. with the window down and my kid in the backseat chewing his shoe, i simply sat with the sun in my lap and listened to the world.

to be honest, this yearlong stint taking care of calvin all day every day is taking its toll on me. at times, he's the sweetest child that exists. at others, he totally grates on my nerves. it doesn't help that i don't always know what ails him. time spent with him is at once fulfilling and taxing. stressful and relaxing. unnerving and mundane in impossibly beautiful and tragic ways.

after seventeen years, still i sit with my grief. though mostly upbeat, i'm reminded of my loss on a daily basis. today, i saw a mother in a front yard making a chain of big, iridescent bubbles for her toddler to chase. i watched two boys on the sidewalk bouncing a basketball between them. i saw college students rolling by on boards and four-wheeled skates—all things calvin will never be able to undertake.

i'm mostly home still raising a seventeen-year-old baby—spoon-feeding, changing diapers, cradling. the grief, however, isn't nearly as debilitating as it used to be. i no longer double over on the street. i no longer buckle—sobbing—between friends holding me up as i drag my feet. i no longer weep while swimming, tasting tears, sweat, soda ash and chlorine. but the loss of not having had a healthy child stays with me. like rings inside a tree. or crystals inside a geode. it's enduring. it's in the silent hours of a child who can't speak. it's in the way he sometimes moans and growls, shrieks and seizes. it's in the endless days' emptiness. the broken promises of parenthood. the conspicuous lack of a child's questions—about math, life, the moon and stars, love and justice. the loss persists in the inability of knowing his hopes, dreads and dreams. it's in the absence of his friendships, sweethearts, heartbreaks, epiphanies, all of which would be full of meaning and feeling, and not just for him.

sometimes, i find myself pining for the still waters of yesterday. of the time when i was childfree. perhaps back when i was single. of the days when i was still climbing trees. but then, as i watch the waves' unceasing action against the rocky shore, i realize how life now—with my messed-up kid—is ridiculously rich with roller coaster loops and dives and turns, breathtaking and rare perspectives, and spectacular, transformative waves, the likes of which still waters might be envious. 

The still waters of yesterday

back in the world again

seven a.m. clear skies. twenty-one degrees. seventeen-mile-an-hour north winds. feels like six degrees. i take smellie for her morning walk. got my fists balled up in my pockets, a long puffy coat over quilted pants over sweat pants tucked into my boots. got my scarf wrapped around my head and tied under my chin. double masks help fight the wind. between masks and hat, a mere slit exists for my eyes to peek out. so ready to get rid of winter. today, even smellie seems done.

lonely roads on our car ride this morning. just too damn cold. i see one runner—a tiny thing—her pony tail bobbing, her own fists clad in thick mittens. then, on one stretch of road i see the carhart three-dog walker brave the frigid winds on his bicycle pulling a cart miles into town. i worry about his freezing hands. winter in maine can be unforgiving.

back at home, i resume my campaign for answers to ambiguous vaccine policy. in maine, kids like Calvin are falling through the cracks; they're not adults but are old enough to get the pfizer vaccine. i've bitched about it to the governor, the head of the cdc, health and human services, my state senator. people want to help but i keep getting the same non-answer. it's frustrating. still, i try to drive home the message.

on a second car ride in late afternoon i think about the past pandemic year. of keeping my head down. staying focused. treading water while spending eight to ten hours a day alone with a kid who can do nothing by himself. i think about going nowhere save a couple of friends' driveways and a weekend stay at a rangely cabin last october where and when calvin seized. still, i feel privileged: for one thing, i'm not sick.

at a curve in the road near a pond a news break comes on between songs. there's been a change in maine's vaccine rollout. next week people over fifty can get vaccinated. better yet, starting mid april, people sixteen and up can get a vaccine! i finish listening then switch stations to hear more music. there's a moody acoustic song playing. the lyrics i hear get me: 

every day when i open my eyes now

it feels like a saturday

taking down from the shelf

all the parts of myself

that i packed away

all i know is

i'm back in the world again

like the lift of a curse

got a whole different person

inside my head

no more trudging around

stony eyed through the town

like the living dead no

i'm back in the world again

it's the only way to be

i cry like a baby. tears flow down my cheeks. i leave them there to breathe while the rest of me exhales a year of held breaths. it's been such a long time of just trying to keep it together. of not being with people. of being stuck inside these four walls. of doing everything for calvin. i think about all the hugs i'll be able to give. the faces i'll be able to pinch. just then, the runner drives by and waves at me, snapping me out of my trance. i suddenly feel lighter. it's gonna be okay, maybe even better. i turn around and head back home. the wind has waned. it's nearly forty degrees. it feels like spring.