blind luck

The sound Calvin makes when he has a grand mal seizure is no sound a parent wants to hear coming from their child, nor anyone for that matter. It's blood-curdling. Sometimes it's strident, a bit like a barking dog or seal, and at others it sounds like someone being murdered. The screech that ripped me out of sleep Wednesday morning was doubly loud, long and alarming for some reason. To add insult to injury, it came on the heels of last Monday morning's grand mal.

It's a sinking feeling watching your child seize, especially when there's really not much to do save administering emergency medications, which have their own slew of troubling side effects, though luckily aren't usually necessary for Calvin since for years his seizures have stopped on their own. The clusters, however, are harder to control.

And so, to avoid subsequent seizures, when the seizure was over I incrementally syringed two milliliters of my homemade THCA cannabis oil into the pocket of Calvin's cheek and watched him drift back to sleep. Then, to monitor his breathing, I crawled in next to him—head to toe now that he's bigger—held his little foot in my hand, and my brain went to work on the days' events.

I thought about how last Tuesday authorities found the body of fourteen-year-old Theo Ferrara, the boy who went missing in the next town over nearly two weeks ago, and about whom I mentioned in my last post. His body was found in the waters of Maquoit Bay near Bunganuc Point not far from where I drive with frequency, and just downstream from where I took this photo.

Considering the lightweight clothing Theo had been wearing when he was last seen—a windbreaker, t-shirt, shorts and flip-flops—the chilly nights dipping into the forties had added to my worry. Since his disappearance, I'd been going to bed thinking of him and hoping he'd turn up safe and sound somewhere. The news is tragic, and authorities won't know the circumstances of his death for weeks.

To aggravate the tragedy of Theo's death, on social media earlier last week parents were posting pictures of their children in celebration of National Daughters and Sons days. While I love, am grateful for, and am proud of my sweet boy Calvin, the feelings the photographs evoked are bittersweet because too many of my friends' precious children—Lily, Rose, Rainier, Jennifer, Will, Tyler, August, Kelli, Martin, Mikki, Mike, Kevin, Ronan, Charlotte, Arnd, Michael, Elisif, Melissa, Matt, Cyndimae, Katie, Christina Taylor, Finnegan—left this earth far too soon. Still others may have tried to have had children but couldn't.

And so, as I lavish attention on my own child, and despite Calvin's challenges and afflictions which send me reeling and into dark places, I try not to forget our blind luck. I try to hold in my heart others who have suffered the greatest loss any parent could know. And, in moments when I complain and feel deeply the frustrations of raising my enigmatic, impossible child, I'll try my best to hold him a little more often, a little closer, and a little longer than when otherwise I might be apt to ignore.

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. 

universal beauty, unconditional love

If my nonverbal, incontinent, legally blind, unconditionally-loving son Calvin has (unwittingly) taught me anything, it is to be grateful. That might seem counterintuitive considering our sorry situation, but I've come to understand that mindfulness and gratitude are two practices that help get me through the bruising parenting of a cognitively and physically disabled child who has a chronic condition as relentless and unforgiving as epilepsy. Gratitude and mindfulness help keep me grounded while at the same time distract me from getting stuck on the troubling aspects of life concerning my son.

Last Saturday night was a rough one for us. After a day of snotty-nosed sneezing, Calvin developed a cough and a fever of 102.6 degrees. Several hours later, I was amazed that the stubborn fever hadn't managed to break his twenty-seven-day seizure-free streak. However, despite alternate doses of acetaminophen and ibuprofen, at 1:30 in the morning a grand mal finally broke through, and a second one regrettably followed a few hours later. The kid is still sick.

Nevertheless, on Sunday, as on most days, I found things to be grateful for: Calvin didn't have a third seizure; he felt well enough to be interested in a car ride; though he didn't eat, he took in fluids; I still managed to get outside by myself to run a few miles. Practicing gratitude, however, doesn't mean I don't also lament Calvin's and our impossibly difficult and relentless situation.

Throughout the weekend, I thought about a social media post I'd seen in which its author expressed her belief in a heaven for the followers of Jesus. The specificity of her remark made me bristle a bit, understanding well that many if not most Christians are convinced that nonbelievers—no matter how virtuous—will be tormented in Hell for eternity; I've had friends and acquaintances tell me that's where I'm headed simply because I'm not Christian. Mostly, I laugh off what I regard as an absurd, fantastical, primitive invention. I went on to consider Calvin's innocent obliviousness to Jesus. I thought, too, about my many salt-of-the-earth Atheist, Jewish and Muslim friends who, though they know who Jesus was, do not claim him as their lord and savior. If there is a god, is "He" so conceited and merciless as to banish decent people to eternal damnation for their so-called indiscretion? Are we/they not God's beloved children, too? Shouldn't virtue be valued over appeasement?

I went on to recall an interview I did with a student of journalism who produced an audio profile of me during the height of the pandemic. She made a gorgeous, seven-minute piece about my life with Calvin. Her depiction is rich, though doesn't include my recorded musings on religion, Christianity, specifically. I surprised even myself when I told her that many aspects of Christianity offend me. I had never thought of it in those stark of terms before, but as I described sweet Calvin's miseries and struggles—his malformed brain, inability to adequately express his wants and needs, his helplessness and vulnerability, his seizures, the heinous transient and permanent side effects of epilepsy drugs and their withdrawal—my position crystallized. I lamented to her the "everything happens for a reason" and "God doesn't give you more than you can handle" platitudes that come my way all too often from well-meaning Christians when they learn about Calvin. To the former, I usually respond by saying I don't believe it for a second; to the latter, I counter by asking why, then, do people kill themselves?

Though raised Catholic, and despite the fact I'm fond of the presumed teachings of Jesus, I lost my religion ages ago, having first begun to doubt it with the tragic swimming pool accident of a best friend's two-year-old sister when I was fourteen. As the years have passed, I've become more awake to Christianity's patriarchy, sanctimony, power-lust, enrichment, racist and bigoted history, and the hypocrisy of some of its most ardent leaders and disciples, which doesn't negate the fact that, like all people, most Christians are good.

But, there is something else that troubles me: religion's depiction of the creator (assuming there is one) of our mind-blowingly vast and expanding universe as anthropomorphized, obstinate, immutable, callous, conceited, judgemental and unforgiving—a being, I'd argue, that seems made in man's image rather than the other way around. What exactly would be the motive for an allegedly omnipotent, merciful god to let "His" children suffer, to test them so harshly, setting up some of them—like Calvin and others who through no fault of their own are isolated and ignorant of Jesus—for certain failure? And if we puny humans are capable of forgiving each other's mistakes, shortcomings and most heinous offenses, why isn't God? What is the point of a fealty experiment, anyway? Shouldn't virtue be enough?

Knowing with the utmost conviction the answers to my own questions, I return to musing on gratitude—for the green canopy of trees, for a healthy body able to run free for miles by myself, for an adorable, affectionate child, a husband, friends and family who love me, for kind strangers and shearling slippers and smoked-chicken enchiladas and black-eyed susans and Nan's dahlias and lemon bars and Smellie dogs and cozy homes and blue ocean vistas and moody skies and screen porches and chilly mornings and warm breezes in the afternoon. Finally, I land again on imagining that wherever, whatever or whomever these gifts come from must unquestionably be free of judgement, an expansive and evolving universal beauty. And if perhaps it's a celestial energy or being, I imagine it to be no less than my pure son Calvin—a force of genuine and infinite acceptance and unconditional love.

stronger?

It has been awhile since I've felt as bad—cranky, depressed, hopeless—as I did on Friday. Maybe it was because I didn't run that morning. Perhaps it was the new moon and/or the storm that was approaching. Most likely, it was the fitful sleep I'd had adding to years of sleep deprivation, the stress of this damn prolonged pandemic, managing my child's chronic condition. Definitely, it was days of taking care of Calvin with no help since last Monday while Michael was/is hard at work. No doubt it was day after day of waking at five, giving meds, changing wet diapers and onsies and bed pads and comforters, my hyperactive and restless child so insistent on me, wiping up the various liquids he drools onto every surface, changing his clothes, putting on and taking off his socks and shoes, clipping his fingernails and toenails, cleaning his ears, brushing his teeth, washing his hair, hoisting him out of the tub, drying him off, leading him to his room, helping him up onto the changing table, giving him countless suppositories, sitting him on the toilet on and off sometimes for over an hour waiting for him to empty his bowels, wiping his butt, walking him around the house and yard, catching him if he starts to fall, watching him seize, getting poked in the eye by errant fists and fingers, being on duty twenty-four-seven, chopping up his food, feeding him all day long in fits and starts, burping him on my knee like a baby, listening to him grouse, repositioning him and covering him umpteen times a night. As I often think and as someone said to me yesterday, our situation with Calvin is impossible. I'm surprised I don't lose my shit more often. I owe that in part to my years of hardcore, painful swimming which nearly broke me at times, but never did. As one of my favorite funny memes says, I'm tired of shit not killing me and only making me stronger.

But when I break down and sob, often my husband is there to receive me and tell me how hard what I do is—the day in and day out of it with little to no help, especially these last years during the pandemic. And then, as I am wont to do, I turn to gratitude to soothe and console me, to help me look up. I ponder the multitude of fortunes I'm graced with, and then I put them down in words so I don't forget:

twilight. screen porch eating. strings of tiny orangey lights. crickets in the grass and bats flying circles in the backyard sky. crickets and birds playing in the background of a song playing loud on a kick-ass stereo. besties and other visitors, impromptu or otherwise. evening strolls through the organic garden out back, drinks in hand. celebrations. togetherness. loving and relating to other people's extraordinary, funny, smart, adorable children. laughter. clowning around. smoke from a waning fire wafting into the house. lovely people who love me without a doubt. cool-to-the-touch leather sofa on a hot, humid night. smellie, lying prone at the opening of the french doors. piano. vocals. guitar. violin. ear-to-ear smiles. feeling myself. being myself. hugs that are like mini massages. realness. dissolving anxiety. pizza in a box. calvin when he's happy, content and calm.

and:

frosty mornings. back road travels. long winding roads with ocean vistas. dense forests and winding trails. windows rolled down letting in the sweet aromas of fresh-cut hay, clover, wild aster. vast fields of corn. bales of hay dotting the hillsides like gnomes. panoramic landscapes of nearly any kind. canada geese. blue herons. goldfinches. catbirds. gnarly trees adorned with peaches and apples. meadows wild as i'd like to be, if only. echinacea. phlox. butterflies and dragonflies and hummingbird moths. the act of cutting the lawn.

and:

making and baking. ice cream cakes. lemon bars. chocolate chip cookies. caramel chocolate oat bars. carrot cake. people who love my gifted sweets. sharp-witted friends and neighbors who get me and with whom i can shoot the shit. beloveds who can cry on my shoulder. others whom i can tell anything for keeps.

and:

running easy. running medium. running with everything i've got for a spell. feeling young(er) and strong. acting like my kid self. dancing in the middle of the kitchen. signing out loud.

And then things feel better, at least for awhile. At least until the next morning at five when I wake to my Calvin and all the impossibilities that he has in store for me, which people not in situations like mine like to say only makes me stronger.

2017 same old same old

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.