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

back at home and on the road

Last week at school, Calvin came in close contact to three individuals infected with Covid-19. A close contact is considered direct physical contact or a total of fifteen minutes in any 24-hour period within six feet of someone who has tested positive for Covid-19. The day after Calvin tested negative following his first close contact, which was the Monday before last, we learned of the two additional exposures last Thursday and Friday.

Today, I made the decision to keep Calvin home from school until after the holiday break. The decision was not an easy one; Calvin will miss out on riding the bus and spending time with his teacher, aides, therapists and classmates. Instead, he will be mostly cooped up at home playing with his baby toys, spinning in his swing, taking baths and car rides, and walking aimlessly around the house and yard with me, as long as there's no snow on the ground. No doubt it will be an inconvenience for me, too, in that I'll have far less time to myself for things like writing and taking showers, and I'll have to deal with Calvin—his needs and behaviors—around the clock again, after having done so for more than a year at the start of this damn pandemic. Thankfully, Michael helps out when he can, and does all of the cooking, which is amazingly tasty. And, I feel fortunate to be in the position to take that decision, in that I no longer have a job or career to worry about.

The decision was mainly taken to prevent the risk of any additional close contacts at school. Keeping Calvin free from additional close contacts will allow him to get his booster shot sooner than later, since boosters can't be given until two weeks after a close contact. What with Covid cases surging, and in light of the recent emergence of the more contagious Omicron variant, I want Calvin to have maximum immunity around the time he goes back to school on January third. A booster before Christmas will do that.

So, for the next two-and-a-half weeks, life for us is going to look pretty much like it did last winter: back at home and on the road for long car rides, taking in the scenery, waving at friends and strangers, and listening to music. We survived more than an entire year that way, so I'm sure we can manage to do it again without too much trouble.

In other news, we have slowly increased Calvin's new antiepileptic drug, Xcopri, from 6.25 mgs to 18.75 mgs per day (I'm splitting pills into halves and quarters) without seeing any noticeable side effects. Most adults take doses between 100 to 400 mgs a day. My goal is to increase Calvin's dose only when he has a breakthrough seizure. The titration schedule suggests increasing the dose every two weeks regardless. That makes no sense to me. In my mind, less is always better if it can work. My hope is that he doesn't have to take more than 25 to 50 mgs when all is said and done. I want to avoid taking him to extreme doses in an all-out effort to achieve seizure freedom. I want him to have a decent quality of life above all else, which might mean trading a few seizures to avoid heinous side effects, if you know what I mean.

So far, Calvin has gone eleven days without any seizures, and has had only one seizure—a grand mal—in the month of December. Knock on wood. Cross your fingers. See you on the roads.

dear finnegan

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

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

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

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

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

and, yes, you were exacting too.

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

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

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

close contact

It's not an email any parent wants to receive: its bold, underscored letters and bright yellow highlights; its list of symptoms; its advice to call 911 in case of any serious signs such as confusion, pressure or pain in the chest, blue-gray-tinged skin, lips and nail beds, inability to wake or stay awake.

Yesterday's message came from my son's high school, notifying me that Calvin was identified as a close contact to a Covid-19 case the day before. I don't know if the infected person was a classmate, a therapist, or an aide in his classroom or someone on the bus. Due to privacy concerns, the school nurse can't tell me. What I hope is that the infected person wasn't responsible for feeding Calvin or being with him for the entire day.

I forwarded the email to Michael with a one-word intro—fuck. I'm a bit worried, because while Calvin is fully vaccinated, he hasn't gotten his booster shot yet because, despite his list of comorbidities, especially epilepsy, he isn't old enough and won't be eighteen until February. His second shot was last April, so his immunity has very likely waned. I've kept questioning why he can't—shouldn't?—get a booster yet. Word remains he has to wait.

When I called my friend to cancel our long-overdue plans to bring her and her husband dinner tonight, my voice began to stammer. I was able to hold it together during our conversation, but it was hard to keep my imagination from drifting to little Charlotte Figi, my friend's daughter who was in many ways like Calvin, most notably her relentless and stubborn seizures. Her entire family got Covid-19 in the early months of the pandemic. Everyone recovered except for Charlotte. She was just a teen, a twin, so sweet, mild, innocent and beloved.

I gathered my thoughts, then began writing messages—to Calvin's teacher, to his former aide, Mary, who was going to take care of Calvin while we went to our buddies' house with dinner, to some out-of-town friends—distant relatives, really—who were going to drop in for supper on Friday after not having seen them for years, to four of our favorites who were staging a home invasion for this Sunday, complete with all the dinner fixings save the coffee-Oreo-chocolate-fudge-brownie ice cream cake I was going to make. In each case, and for Calvin's, each other's, and the larger community's sake, we were all going to do Covid-19 rapid tests before gathering. But now that Calvin has been exposed to someone with Covid, the much-needed merrymaking is off the table for at least the next week.

While I understand there's a remote chance Calvin might have been exposed to a vaccinated person with a breakthrough infection, it remains hard not to be frustrated with the maskless and unvaccinated who are inundating our emergency rooms, hospitals and staff; patients are sleeping in the hallways of our local hospital's emergency department due to lack of beds from an influx of mainly-unvaccinated Covid patients. It's hard not to be angry at the reams of Covid mis- and disinformation circulating on social media and enriching bad actors. It's hard not to be aggravated at the conspiracy theorists and anti-vaxxers helping to exacerbate and prolong this public health crisis which has killed over 792,000 Americans and orphaned tens of thousands of children. It's hard to swallow arguments about so-called natural immunity in the face of a novel coronavirus, hard to stomach casual attitudes about getting infected and pretzel logic about achieving herd immunity by means of rampant contagion—both notions which neglect to consider the grave risks posed to the community at large, our healthcare infrastructure, our economy, and the most vulnerable of us. It's hard to tolerate the unwillingness to concede that variants of the virus such as Delta and Omicron—or worse—are more likely to emerge in unvaccinated populations, and that the unvaccinated are more prone to be vectors because they tend to stay sick longer and have worse symptoms than folks who are vaccinated.

With all this vexingly top of mind, I am grateful, if not amazed, that Calvin is so dutiful at wearing a mask despite the fact that he has no concept of why he should. Despite the fact that it gets covered in drool which makes it uncomfortable to wear and extra hard to breathe. Despite the fact it rubs his little chin raw. And nearly two years into this pandemic, it's mighty worrisome and maddening that, as the virus continues to mutate and surge, there are those who still act cavalierly, only thinking of themselves and seemingly unaware that, despite perhaps feeling healthy, the unmasked and/or unvaccinated can still harbor and spread the virus to others without knowing it. It's a twisted notion of freedom when that very freedom comes at the grave expense of others. No one is infallible. We don't live in a bubble. Wear a mask. Get vaccinated. Do it for your family, your neighbors and your nation.

Photo by Paul Barron

psychotic

The kid is often psychotic. Batshit crazy. Bonkers. Virtually impossible. The other night was a terrible one. Calvin woke before midnight and never went back to sleep again. He spent hours tossing and turning, head-banging, wall-slapping and making all sorts of other annoying and anxiety-provoking sounds. He got tangled in his bed pad and covers. He got cold from his wet, drooly thermal. He soaked two diapers. But he wasn't seizing. He didn't appear to be in great pain. And he didn't seem all together panicky—no racing heart or clammy hands. But still, he was amped up and likely feeling miserable.

His head-shaking, grousing, and head-rubbing made me wonder if he might be experiencing side effects from the new seizure medication, Xcopri. But when I researched the drug again, there is virtually no mention of psychiatric effects beyond a low incidence of irritability. So then, I wondered if his mania might be due to the extra cannabis I'd given him, but I quickly dismissed that, having not really seen that effect before. I wondered if he might have a headache (headaches hurt, but often aren't bad enough to make one cry) so I gave him acetaminophen and, later, ibuprofen. Lastly, I wondered about the Keppra, which is notorious for its behavioral side effects. I got a sick feeling in my stomach thinking about all the what ifs. What if things hadn't gone so wrong to begin with? What if Calvin had never developed epilepsy? What if he had never been given benzodiazepines? What if he had never taken any anti-seizure drugs? What if he had never been born? Our poor boy suffers so senselessly; there's no reason for it.

Keppra's list of behavioral and neurological side effects is long: aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability (mood swings), hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder, for starters. I often describe my son as "unreachable." Not infrequently, he has abrupt outbursts of laughing and shrieking. He can never sit still. To complicate matters further, like benzodiazepines, apparently Keppra's side effects can be caused by its use, its dose reduction or its discontinuation. Calvin has been on Keppra for years and, until more recently, on a very high dose. I say to myself, we're fucked, wondering—if he's lucky enough to come off of the drug—if the side effects will be permanent, meaning he'll never, ever be a calm and happy child who feels good. Can you imagine being that person or the parent of a child who feels like that? It's called hell on earth.

I think back to when Calvin was first prescribed Keppra. He was only two and had been newly diagnosed with epilepsy. I remember how amped up he was then, often hyperventilating as if extremely excited. Years later, after ten failed anti-seizure medications and dwindling options for a new one that might work (when the first drug fails to control seizures, the chance a subsequent one will work shrinks to less than five percent and decreases with each successive failed drug) we decided to try Keppra again (a friend's daughter had retried it, and the second time around it worked for her, albeit with the help of two others.) I try to recall if that is when Calvin's agitation and mania began, his mood swings and restlessness. I had always blamed the benzodiazepines. Maybe I've been blaming the wrong drugs all along. Or maybe (probably) they're all culprits. In any case, they've made my kid psychotic, and I fear he'll never be the same again, fear his brain has been forever changed, fear he will be plagued by this miserable restlessness in perpetuity.

Inside this two-and-a-half bedroom home on this small patch of land, there's so much suffering—seizures, sleep deprivation, headaches, anxiety, anger, resentment, tedium, frustration, despair, envy, fatigue, panic, psychosis. Still, I try to hold on to hope. Keep my head above water. Thankfully, I've become deft at that. Rather than sink, I watch from my writing desk as diaphanous clouds drift amid a cornflower blue sky. I see and hear the wind finger through the pines outside my window, see the tops of trees swaying in the breeze. I think of my good ole friends and the ones I've made more recently. I listen to orchestral music which often moves me to tears. I'm grateful for warmth, beauty, comfort, love, light, space, nourishment, seasons, family, friends, strangers, forgiveness and walks in the woods and on back roads. I'm even grateful for my sweet, adorable, affectionate, impossible psychotic child. After all, it's not his fault.

On one such day two years ago.