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

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 makes me stronger but doesn't kill me.

2017 same old same old

gratitude today (is hard)

The scent of hyacinth is so intense it seems to reach my gut, just below the place where the ache of want, angst, sadness, anger and resentment settle. I try my best to sooth these feelings using gratitude. It isn't always or wholly possible—or necessary; I need to taste the fullness of my sentiments lest they eat me up.

Gratitude today is hard. Calvin is in his sixth day confined to bed. He likely has a broken hip. It needs time and space to rest and mend. He injured it at school last week just trying to sit. He tumbled when he partly missed the seat. I'm not sure where his one-on-one was. His school hasn't told me yet. It appears, not on him, at least not close enough to block his fall. Thankfully, he's nothing if not resilient.

Gratitude today is hard. Hard because Calvin is itching to exit his bed. But we can't let him put weight on his left leg. We're getting better x-rays soon to clearly see his injury's extent. The only time he gets out of bed—so far—is when he's soiled or wet. Crouching down, I scoop him up, lift and set him on his changing table. It isn't easy. He's ninety-two pounds. But I'm strong, I lift correctly, and he holds tightly around my neck. When we wipe him up, we must take care not to move or jar his leg in ways that hurt, which makes the cleaning difficult. He can't use the potty for the foreseeable future. Instead, we have to deal with dirty diapers and "blowouts" again. One step forward, back two steps. The situation is disconcerting at best.

Gratitude today is hard. Calvin won't be able to walk for up to six weeks. I'm not sure he understands his restriction. I wonder if he'll suffer setbacks. I wonder how much his muscles will atrophy. I wonder how well he'll be able to walk when it's all said and done. I wonder if he'll suffer long-term pain, the kind which isn't obvious to others, but bothers nonetheless.

Gratitude today is hard. Calvin's movements are already seriously limited, more so during this pandemic. He can't just go wherever he wants whenever he wants, like other eighteen-year-olds. He has to go where I go, and I with him, except when he goes to school. Now his freedom is further restricted. I had been hoping, as the weather warms, that I could take him for mini walks on the back roads or for a yards-long stroll in the nearby woods. All that is now impossible. It's not even clear if I can manage lifting him into the car just to take a ride on back roads.

Gratitude today is hard. Our boy is defenseless, helpless, trusting, innocent. He relies on others for exactly everything. Expects us to be there for him. To help him navigate and to assist. To catch him when he falls and trips. Though he walks quite well on the straight and flat, I tell those at school to stay close, to keep their eyes on the ball—on him—at all times, especially near obstacles, on stairs and in crowded halls. His poor vision and bad coordination are mostly why he has a one-on-one. It isn't the first time he has suffered injury. Regrettably, humans are fallible. I for one should know.

Gratitude today is hard. Even so, I'll look for reasons to be thankful: a walk alone in the forests and on back roads; sunlight streaming through trees and windows; a cozy home; tons of dear and generous friends; an awesome dog; a supportive, interesting, creative, loving husband, the meals he makes and the way he is with me and his son; the rich fragrance from hyacinth sprigs picked just for me; most of all, my son Calvin, his sweetness, affection and awe-inspiring resilience. He's always there for me no matter what, even when I stumble in my mothering, graciously, he catches me when I fall.

matter of reflection

There's so much to be grateful for every day—running water, food, heat, electricity, the freedom to move, democracy. We've got infrastructure that pretty much works, and grocery stores regularly stocked with essentials for our homes. We've got restaurants in which to dine, and hospitals where we can (hopefully) heal if we're ill or hurt. We've got Amazon and Apple, Zappos and Google, Netflix and Zoom. We've got public servants: librarians, teachers, fire fighters, legislators, road workers, bus drivers, garbage collectors and cops. We've got farmers, truckers, builders, manufacturers, artists, musicians, chefs, servers, grocery store and retail clerks. We rely on all of them to supply what we need and want, and to get shit done. They're there for us despite some people's petty tendency to complain and protest. 

There's so much to grieve—war, illness, debt, death. So many things to love, to loathe, to lament. These are strange and harrowing times. The world is turning upside down and inside out. Millions are hurting while billionaires continue to enrich themselves by exploiting the labor of others; they pocket record profits by gouging the rest of us (blame them for stagnating wages and inflation) and by not paying their share of taxes. And there's another power grab: the unjustified, unprovoked war that Pootie is waging against Ukraine. It's all so sick and twisted.

I consider the Ukrainians, and others in war-torn nations, whose homes, livelihoods and families are being blown to smithereens. Because of Pootie's war, they have little to no access to their homes, their schools, their hospitals, their critical medications to treat chronic conditions. I imagine legions of them seizing, not just from epilepsy, but from traumatic brain injury, diabetes, dehydration. And what of expectant mothers, new mothers, infants and preemies? Pootie's troops are bombing children's hospitals and maternity wards. His lies and crimes against humanity are unfathomable. Someone has got to bring him to heel.

Here, I reflect on my fortune. I recline on a comfortable couch with a full belly, a small glass of red wine and a large one filled with clean water from a tap that never runs dry. My only palpable worry at the moment is whether my epileptic child might seize tonight. Even then, he's likely to make it through, unlike so many of war's refugees trying to flee besieged cities.

Wartime calls to mind a favorite rumination from, The Celestial Worlds Discover'd, Or, New Conjectures Concerning the Planetary Inhabitants and Productions. It goes:

How vast those Orbs must be, and how inconsiderable this Earth—the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted—is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, 1698

It is clearer now than ever how much Pootie and his stooges' evolution as human beings has been stunted. I wonder what tainted ingredients make such depraved megalomaniacs.

My thoughts return to little Calvin sleeping safely and soundly upstairs. I wonder what he dreams about. I wonder if one day he'll be orphaned. I wonder if one day soon war will return to these shores. Then, I recall images of the innocent Ukrainian people caught up in the Russian invasion: a mother and her children shelled while trying to escape bombardments; a man pushing his bicycle through ravaged streets strewn with debris; a father clutching his dead child riddled with shrapnel; bodies wrapped in black plastic being thrust into mass graves; mothers grieving over their dead boy soldiers; a pregnant woman dying on a stretcher. And I wonder again, like I do about Calvin's suffering, how much these good people can endure, and what more I can do to ease it.

Photograph: Evgeniy Maloletka/AP

the kids are all right

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

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

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

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

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

secular blessings—there are so many

the free feeling of traipsing down the middle of a deserted road. the sound of snow and ice crunching underfoot. standing in the the center of that field alone. the shine off its glossy surface. thinking of the pennellville meadow sheathed in ice, its grassy tufts like waves in a frozen ocean. the hollow knock of a woodpecker disturbing the quiet. the sting of frigid air in my nose. friends calling and knowing they can cry on my shoulder. long good talks with sisters and brothers. post-booster, post-fever, post-seizure child spending most of the day napping in my lap, keeping me warm. seeing in-laws in their silly glasses on zoom. making a killer coffee oreo cookie irish cream chocolate fudge brownie ice cream cake for after christmas dinner. getting lost in the rolling flames of a fire in the wood stove. the sweet richness of bourbon eggnog topped with sugar-laced whipped egg whites and nutmeg sprinkles. friends and neighbors dropping by with goodies galore. smiles, gifts, visits and messages from once-strangers. so many beloveds. dream of our dear Arnd alive and well and among us. hearing from his parents the next morning. woody's kin dropping off a holiday care package in his absence. writing at the butcher block table as my husband busies himself in the kitchen. rosemary rack of lamb about to go in the oven. the roundness of a french horn with the charm of a harp. looking forward to watching the 1951 version of dickens' a christmas carol. all dressed up, no place to go.

on pandemics, mindfulness and mother nature

too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.

today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.

for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.

i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.

a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:

Pied Beauty 

Glory be to God for dappled things— 

For skies of couple-colour as a brinded cow; 

For rose-moles all in stipple upon trout that swim; 

Fresh-firecoal chestnut-falls; finches’ wings; 

Landscape plotted and pieced—fold, fallow, and plough; 

And áll trádes, their gear and tackle and trim. 

All things counter, original, spare, strange; 

Whatever is fickle, freckled (who knows how?) 

With swift, slow; sweet, sour; adazzle, dim; 

He fathers-forth whose beauty is past change: 

Praise him.

—Gerard Manley Hopkins

thanksgivings (in no particular order)

lovable son. stovetop espresso with warm milk. time by myself. a wonderful husband who totally gets me. jammy eggs on weekends. good nights' sleep. seizure-free days. mild weather. justice. white birch overlooking a green lagoon. cooking with fire. smellie, our most beloved dog, and the levity she brings us. maine, for the most part. the ability, time and place to run. feeling ever-so-slightly lighter. walking the college trails. laughing uncontrollably (sometimes at my own jokes.) steely dan. blonde redhead. david byrne. school days. teachers, ed techs, bus drivers. gifted administrators. sunlit leaves yellow as daffodils. cozy old home despite cracking plaster and creaky floors. wood fires in the stove. ambient light, mood light, candlelight and dimmers. homemade pizza. cut flowers in glass vases. hand-me-downs. quiet drives on back roads. taking in the landscape through senses and lens. making ice cream cakes with cookie crusts in a dozen tasty flavors (come try some.) friends made from strangers. walks on pennellville road. clean sheets. long hot showers. tangerine sunsets. moving films and funny movies. crusty frost on a grassy field. ghostly mists hanging out. bourbon on the rocks (within reason.) michael's mashers. bear hugs. dry firewood. witticisms. this particular community. being able to write and draw. peanut butter and raspberry jam sandwiches. the smell of sautéed onions and garlic in olive oil. ten-buck chuck taylors in assorted colors. deep conversations. buttermilk-brined spatchcocked turkey. honey-glazed, sherry carrots. relative health. meeting michael's students. thanksgiving gatherings. pumpkin and pecan pie. finnegan and his family. friends who check in with me through the grieving. talking long distance. covid rapid tests and vaccines. côtes du rhône. sunlight glinting off of wavy windows. a gifted jar of homespun applesauce and a bag of fresh mussels delivered to our door. seussian-looking trees. kind strangers. trusted friendships. relatives. devoted readers. love. music. blue jeans. 

river sky

For the first time ever, I traveled the familiar back roads on foot. It was an all-together different experience than driving the same route. More intimate. More wide open. More wild. More of everything I desire. I wanted to lose myself, my angst and grief in it. Dissolve into the big blue sky.

Although I wasn't solo, the walk reminded me of backpacking for seven months through Europe when I was only twenty-three—back when my world first opened up—often hiking lonely country roads from bus stops and train stations to hostels and inns. Having been swept back in time, I closed my eyes for a bit and lifted my chin to better feel the sun on my face and to smell the salty breeze. I noted the new black asphalt under my ratty white sneakers. Wind softly combed the pines as if to whisper as I stopped briefly to regard clumps of wildflowers gone to seed. Puffy white clouds settled on a horizon made of vast banks of trees. In that moment, it was quiet and gorgeous. Under the big sky, I felt my own insignificance, while also hoping I offered the world something in return for its generosity. And, I thought of Finnegan.

Going slow motion in what has become one of my favorite spots in the world offered me a much-needed release—from relentless angst over my disabled, seizure-prone son Calvin, certain nagging questions, petty grievances, and intense sorrow after the accidental death of my close friend's child, Finnegan, who, despite not seeing him often, was also dear to me.

My back roads companion was someone I befriended this fall. While driving around with Calvin during the first year of the pandemic, I had frequently passed Lynn and her husband as they walked from their house near the point down a long wooded road. As she and I roamed the roads together, we talked about friendship rifts, parenthood, love, loss, grief, romance. It felt good to be in the presence of someone fun and new who buoys me and seems to get this person who sometimes feels misunderstood.

As Lynn and I padded along, my mind kept drifting to my friend's son, Finnegan. He died last week in a kayaking accident on a raging river. He was young, talented and vital. Full of love and promise. I remember his smooth, tawny summer skin and blushing cheeks. I liked his spiffy hairstyles. I recall him playing the fiddle for me and a restless Calvin in his family's kitchen, the music seeming to come to and from him so effortlessly. I remember his smile and warm embraces whenever I'd stop in to visit, which wasn't nearly often enough. Like his younger siblings, he was an old soul with a generous spirit whose humility might've been mistaken for bashfulness. And, like the rest of his kin, he was magnetic, but in a soft, warm, gentle sort of way. I've adored the moments spent with him and his family. Unlike so many others, they're memorable because the family is so welcoming, loving and real. Regrettably, I didn't—often couldn't because of Calvin—carve out enough time to be in his presence. And, just at the age when the larger world begins opening itself to young adventurers, nature's wildness took him. He was about to turn twenty-three.

On our car ride yesterday along the same backroads, Calvin spent most of it going berserk. As usual, I couldn't know the source of his misery. Regrettably, sleep deprivation had drained my patience for his mania, and I barked and cussed through his shrieking and flailing. As we drove past the farm where a few close friends were gathering around a bonfire to grieve the loss of our friend's son, Calvin continued to melt down. Just then, I glanced at the sky above the field. It was magnificent—moody in places, placid in others with large swathes of leaden darkness amid frothy patches of lavender-gray and blinding whiteness. It's a river sky, I thought, which made me focus on Finn and forget about Calvin's grousing. In that moment, rather than being self-absorbed and wretched, I was moved to be grateful—for my son and husband, my friendships new and old, for Finnegan and his family and their many friends, for those beautiful, rambling back roads and the big sky which, whether cloud-strewn and stormy, starlit or clear and blue, is forever breathtakingly beautiful.

gratitude again

already, i sense another seizure coming on. my son is restless, dropping down, agitated, putting his fingers in his mouth, staring at the sun. and so, to get my mind off the dread, i turn to gratitude. it helps me forget the worry, at least for a moment or two. i think about all that i'm thankful for ... 

long walks with smellie the dog. a body that works well and is healthy. stovetop espresso with warm milk on a cold morning. well-seasoned cast iron skillets. weekend eggs fried in olive oil to jammy perfection. sunny days with winds which almost feel warm. blue jeans and hoodies. new neighbors who give my boy their first hug. the smell of homemade cheese bread fresh from a hot oven. the sweet and powerful voice of kate bush. catching up with an old friend on the telephone. clear view to the backyard shrubs, having cut down the perennials. my husband, who cooks ridiculously delicious food. blue skies so crisp it's as if they've been starched, stretching to forever and back again. quotes by albert einstein on the meaning of life. deep conversations with a new friend. understanding that being a martyr is not attractive. converse ten-buck chuck taylor all-stars in two new colors, which somehow brighten my mood. clean windows looking out on a green garden. fresh coat of gray-green paint on the house trim. watching leaves and limbs shiver and sway in the wind. big fat blue jay in the bird bath bathing. sunlight streaming through the brunswick window, and the way it lights up a face, a wall, a room. cannabis as medicine for epilepsy. michael's margaritas sporting a kosher salt rim. smoked-chicken enchiladas. funny movies and tragedies. my adorable son.

in my path

"Why did you help me?" she asked. 

"You were in my path," he replied.

Those were the words uttered by the main characters in a movie I recently watched called, Land. More than anything else in the film, that snippet of conversation struck me, triggered me into thinking about everyone who has helped me survive and thrive in this life, particularly since Calvin's arrival. 

Countless people whose paths I've crossed came to mind—everyone from my husband and extended family to my childhood and college friends, teammates, and the swimmers I coached way back when. I thought of former boyfriends, colleagues, roomies and besties from Seattle, San Francisco and Maine. I considered my husband's colleagues and former students, Calvin's doctors and nurses, our lovely neighbors, and the clerks at the grocery store. As I write this I think of the friendly strangers I've encountered by way of this ten-year-old blog, and while driving the back roads during the pandemic. Every single one has helped me get through this difficult life of raising a disabled child with an impossible, chronic condition.

Perhaps it was you who held my elbow or hand while I laughed, wept or wailed. You might have silently listened to me grieve. You may have offered to do my shopping, cooked us meals or left goodies on the doorstep. Perhaps you've brought me flowers, written me kind and loving sentiments in a hand- or type-written letter, email, message or text. You might have hugged the breath out of me just when I needed it most. You may have unwittingly buoyed me in the fleeting moment you ran, skated, strolled, drove or biked past.

And then, of course, there is Calvin, my peculiar little boy who has helped me—bettered me (mostly)—in myriad and indescribable ways.

In return, I certainly hope I've helped you, friends, loved ones and readers, in some small ways, if only by a few written words or by something as simple as a photo of a field full of dandelions dipping into the bay.

saturday gratitude

a rare, decent night's sleep. stovetop espresso with warm milk, as always, ready and waiting. a well-seasoned cast iron pan. jammy eggs with sea salt fried in olive oil (my rendition.) gifted loaf of ta's homemade bread for buttered toast.

early-morning backyard stroll across freshly-cut grass, mug in hand. fothergilla and other flowering shrubs going absolutely nuts. the mesmerizing scent of double-white russian hybrid lilacs. amazing azaleas in at least five blush and blazing colors. stalks of purple alliums exploding like fireworks in the perennial gardens.

walking wooded trails with smellie. running some of it, even in jeans. shedding winter layers. feeling lighter these days. bits of grey hair coming in wavy.

driving on quiet, winding back roads. picking up speed up and down hills. spectacular vistas over my shoulders. snowy owl perched on a chimney. smiles and waves from friendly strangers. blasting david byrne's talking heads over calvin's shrieking one. curious cows and calves grazing silently in a roadside pasture. (some) maskless people frolicking at a nearby farm. exchanging enormous smiles with a gal riding her fatbike down a dirt road.

covid-vaccine freedom-windows. calvin's school, bus driver, aides and teacher. getting to know newish neighbors. apple blossoms. dandelion fields. flowering chestnut trees. compelling books and films. forgiving son and husband. gatherings again! seeing friends' lovely faces close-up. loving buddies who understand me. bear hugs from some of my besties.

laughs. tears. dirty jokes. expletives—all among friends.

red wine and blonde redhead. finger-licking seared lamb chops and baby asparagus. michael's creamy garlic mashers. gingersnap ice cream in a waxed paper cup. my little wild turkey in jeans and a t-shirt, even though he sends me reeling.

embraces

just before three a.m. on sunday. embracing my son in the wake of his grand mal. his skin is warm and soft. his breathing is shallow. his limbs, lanky and long. in the dark, i reflect on our saturday, just before drifting off:

smelling sweet magnolia blossoms on my morning walk. making our first trip to the garden store since the pandemic's start. resisting calvin's desire to drop. proud of his half-successful efforts at keeping a mask on. taking a short backroads drive with a kid who is "off." exchanging smiles with the runner and the carhart man with his dogs. the sickly one is missing. i wonder if something is wrong. 

relishing strolls in the sunny backyard. paper-white, pink and purplish rhododendrons opening up. lamenting calvin's poor balance and grousing. delighting in a surprise visit from friends driving by. giving thanks for in-town living. the sun and warm breeze kissing my skin. calvin crosslegged in the grass trying to eat sticks.

sitting maskless in the garden with barbara and jens. little gabriel playing with barbecue tongs. sipping the chilled bubbly jens delivered last sunday. nibbling crispy sea salt and chocolate chip cookies just out of the oven. raising a glass to toast our covid vaccinations. barbara smiling in her pretty spring dress. her hair twisted up at the back of her head. the four of us chatting and laughing. feeding my boy blueberries one by one. blocking his efforts to stare at the sun. in-between bites, receiving his needy embraces. jens noting calvin's grieving and discontent. explaining to them that he's due for a fit.

gabriel cozying right up to michael. like petals, his dollface is slightly blushed. feeling his tiny hand in my palm. leading me to the compost pile. inspecting its rotting items with wonder and surprise. wishing i had such a child. grateful to call this cute, curious being my friend. missing his big brother nate. he's away for the weekend. such adorable people i can hardly stand it.

approaching five o'clock. time to say so long. deciding to hug barbara a week before my peak resistance (she got her first shot and recently tested negative.) amazed feeling her embrace. i linger in her arms not wanting to let go. my eyes begin to well and sting. after a bit, jens takes her place. we hug like some siblings. he kisses my head. i cry like a baby, as if we've never embraced. my yearlong hunger for this kind of connection finally, though not wholly, sated. basking in the healing power of dear friends' lovely embraces.

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.

food for the soul

a big bunch of thick-stemmed sunflowers standing in a tall jar of water, and a quart of hot-off-the-stove chunky lentil soup delivered in person, masked-up, delightfully unannounced, on the steps of our side deck.

a large zip-lock bag chock full of homemade chicken, pork and shrimp wontons, a smaller zip-lock stuffed with fresh spinach, and a quart of savory ginger and green onion broth for steeping; four large home-baked crinkled molasses and spice cookies on a square of parchment in a white bakery box with a clear-cellophane window; a baggie of handcrafted pork skin dog treats for smellie; homemade squash, nutmeg, percorino romano and parmesan cheese tortellini with a jar of tomato basil pasta sauce; a freshly-baked pull-apart loaf of newfoundland white bread—all these carefully nestled into a shallow cardboard box and unexpectedly hand delivered, masked up, at our mudroom door.

kitchen-crafted caramel sea salt, walnut and bittersweet chocolate tart in a foil-covered aluminum pan left on our side deck bench. most regrettably, a critter got to it before we did—dammit!

a carton of pastel teal and tan farm-fresh eggs hung lovingly on our doorknob in a beige plastic bag.

a big box stuffed with styrofoam peanuts cradling a small box of artisanal walla walla chocolates, a zip-lock laden with thick squares of homemade shortbread, and two bubble-wrapped bottles of regional red wine mailed to us from southeast washington state.

a massive wedge of white birthday cake iced with buttercream frosting and white chocolate shavings set on our side deck after dark in a clear plastic container with a happy red lid.

thank you maura, seth, ann and kevin, collin, stacy, and jens, barbara, nate and gabriel. you nourish our bodies and souls just when it seems we need it most.

gratitude and happiness

Snow turns to rain turns to slush turns to ice. Walks at the college fields can be treacherous in February. Even the sidewalks that get me there can be risky. More than once I've fallen, though not since I got cleats for my boots. Glacial terrain is often rough and sometimes insurmountable. Again, I think of Mars. But the skies that draw me to the fields, with their breadth and magnificence, never disappoint. Gazing at them makes me feel so present, insignificant and humbled—just the way I feel I should. For Calvin, there's nowhere safe to trod outside until things melt. I wager we'll get outside together soon enough.

So many things save me from drowning in this molasses pandemic: writing and reading; listening to music; eating my husband's delicious meals by firelight and candle; watching good movies; receiving Calvin's frequent hugs; friends stopping by with champagne and flowers and homemade food; folks who check in from nearby and far; kind comments about my blog; daily car rides taking in spectacular and familiar vistas; the smiles, waves and nods from strangers who are out and about doing the things I'd like to do right now but can't.

As the sun shines through the upstairs window while Calvin takes a bath, I perch on the toilet seat in the warmth to write this blog. My son splashes and coos and sometimes goes nuts. He sounds like a monster, monkey or goat. Sometimes he's cute; at others, not so much. Sometimes he reminds me of a little Frahnkenshteen, teetering side to side with arms outstretched trying his best to capture his maker. Like Mary Shelley's prose, at times I feel we're both so misunderstood. As I type, I regard the the backs of my hands, the blue-green veins branching under the crinkly skin of age or dry winter, the simple platinum bands wearing ruts into two long, slender fingers. With time, these hands become less and more familiar. Still, they get done the work I need them to do, and for that I am most grateful.

Yes, it's all about gratitude—for the simple things, for each fleeting moment, for that which comes to us by sheer luck and not because we deserve it, for finding purpose in life's twists and turns and hardships. I heard gratitude breeds happiness, can make surmountable an impossible glacier, a darling out of a monster, riches out of misery. I've no doubt that's the honest truth.

riches out of misery

a reader asked me recently, how do you do it? how do i care for a significantly disabled child with all the burdens, including a chronic condition? in response, i cited the brutal years of extreme competitive swimming and how it steeled me. i cited my strict father's wicked work ethic which i inherited. i told her how much i adore my impossible son. i considered how much i love a challenge. i thought about my supportive spouse. then I reflected on mindfulness as both meditation and distraction. like focusing on the way this morning's layers of sleet felt as if i were trudging through coarse kosher salt or sand at the beach. how the sleet sounded and felt when it hit my jacket and cheeks. how the birds in the trees seem to be announcing spring. how being the only human in the trails and on the road can feel both liberating and lonesome. how the trees have a tinge of silver as ice clings to their limbs and needles. how their branches sag under the weight of it all as if in solidarity with me. how still pools of water reflect the surrounding world, sometimes with heightened clarity. how luxurious it feels to have my son linger in my lap peacefully, even though he's ailing. how all these seemingly insignificant things, plus gratitude—for family, friends, kindly strangers, good fortune as well as struggle, the ability to write for myself and for avid, compassionate readers—can make riches out of misery.

a christmas carol

Yesterday morning, just before four o'clock, Calvin suffered his first seizure in twenty-two days—a recent record I owe to a slight increase in his THCA cannabis oil. When the fit was over, I crawled into bed with him to monitor his well-being.

For ninety minutes, while feeling Calvin's heartbeat and the rise and fall of his chest as he slept, I laid awake. I thought about having seen Jupiter and Saturn low in the sky, though not aligned. I lamented the coronavirus surge devastating our nation. I wondered about my death row pen pal who delighted in a pencil portrait I drew of him. Then, my mind settled on the film Michael and I had just watched, the 1938 production of Charles Dickens' classic A Christmas Carol—a version I don't remember having seen before. The holiday classic, which I'll soon be reading, is one I've long loved for its focus on gratitude, charity, brotherhood, community, and the secular traditions of the holiday—gathering with loved ones to share special food and drink.

Whenever I see any version of this film I think about Calvin—my own Tiny Tim—who is as sweet and pure as any child could be. What a remarkable boy he might have been (in the way of ordinary, healthy boys) if things hadn't gone wrong. I often wonder what the future holds for him. At times throughout the film I became weepy. Though I know the story well, one of the last scenes surprised me. After having been haunted by the three Spirits of Christmas, Ebenezer Scrooge makes an unannounced visit to the home of Bob Cratchit, the clerk he recently sacked. Upon the curmudgeon's arrival, Cratchit's wife hides in the closet. When she hears her children begin to shriek, fearing their ill-treatment by Scrooge, she rushes to save them. Bursting into the room, she finds her kids squealing with joy over the gifts Scrooge has bestowed upon them. Tears spilled from my eyes at the sight and sound of the ecstatic children; oh, how I wish Calvin could experience such things.

Alas, as of yet, there is no cure for my boy's seizures. No cure for his cerebral palsy. No cure for the enlarged lateral ventricles in his brain. No cure for his autism. No cure for his cerebral visual impairment. And so, unlike Tiny Tim, Calvin will never joyously slip-slide on a slope of ice with friends, stare wide-eyed at a roasted goose emerging from the oven, recognize and respond to his father's pride and despair, shriek with joy when opening a special gift. And though in this house we don't celebrate the birth of the baby Jesus, and despite Calvin's limitations and the pandemic, we can gather with friends at a safe distance outdoors and raise glasses of spirits. We can hunker down and sip homemade bourbon eggnog beside a rolling fire. The three of us will eat a roasted bird with all the fixings, plus pumpkin pie for dessert. We are secularly blessed and deeply grateful for each other, our friends and our fortunes, and the ability to share our blessings and fortunes with others.