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.

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

weather report

Written yesterday, in the hours before Calvin suffered a grand mal:

Thanks to his Covid vaccinations, Monday was Calvin's first day back in school after more than a year. It was a good day for both of us. Calvin kept his mask on well enough to roam the high school's hallways with his aides. I spent the morning working in the sunny garden accomplishing most of what I had set out to do—which was a lot—on my first half day without my kid in tow. When Calvin got home at noon, we strolled around a bit before he led me to the car and patted its door, seemingly indicating that he wanted to go for a ride.

We visited our usual haunts—Pennellville, Simpson's Point, Rossmore, Wolfe's Neck, Mere Point, Bunganuc, Macquoit. Along the way, I stopped several times by the side of the road. I spotted a red fox, the sun in her eyes, squinting at us from a grassy slope. We greeted a couple of muddy clam diggers just after their back-breaking harvest. I chatted with two wildly friendly, hip, young, pierced, tattooed lawn care workers, and found myself wishing I could call them friends. I watched a woman unload perennials from the back of her car. We got caught in a fleeting squall.

This time of year is especially beautiful in Maine. The temperatures are mild and the air is dry. The trees haven't reached full foliage, so their branching is still apparent, unlike in summer when masses of green leaves limit one's sightline. The delicate yellows, greens, reds and ocher buds of spring trees are a softer, subtler version of autumn and are, in my opinion, more gorgeous, especially when sunlight illuminates their canopies after a rain.

Today, Calvin had an okay day at school, but something's bothering him. He's a bit unhinged, plagued by manic outbursts and eerie silent spells. A perfect storm is brewing what with the new moon's gravity, the low barometric pressure, and the fact that nine days have passed since his last seizure, which is a bit longer than of late. In other words, he's due. Hopefully, though, last week's increase in his bedtime dose of CBD oil will allow for longer stints between fits. In the past thirty days he has had "only" four grand mals, which is better than the six-plus grand mals which have been occurring in any given recent month, so maybe it is helping. Hope springs eternal.

Despite Calvin's outbursts, our drive was mostly relaxing and allowed me time to reflect and come to some realizations: having Calvin back in school isn't nearly as angst-provoking as I feared; car rides are nice any time of day, despite that I already miss seeing a few of my favorite, familiar, back-roads regulars; though sometimes windy and cool, late spring is an amazing time to be in Maine; getting vaccinated is an uber-liberating chance at life back in the real world; the CBD oil appears at a glance to be helping to quell some of Calvin's seizures. After nearly twenty years, Maine is growing on me by degrees.

little bits of good news

calvin received his second pfizer vaccine with michael, and will achieve peak immunity by tomorrow. i'll be good to go by saturday. calvin and michael had minimal side effects after their second shots. besides a sore arm, i had none whatsoever.

calvin's former ed-tech and bff, mary—who is also fully vaccinated and is the first person to step beyond the entry to our kitchen in over a year—took care of him monday for a few hours so i could finally get into the garden to rake and prune and weed and feed emerging peonies. calvin and i were extremely happy to see her and give her hugs.

as i had hoped, since restarting 20-milligram evening doses of harmony cbd cannabis oil three weeks ago, all three of calvin's seizures have been one-offs (one every seven days); prior to that, his grand mals were, for months, coming in clusters of two or more in as many days, and often within hours of each other.

calvin is calmer, steadier, and has been sleeping better since re-adding the cbd to his regimen.

his focal seizures have all but disappeared, and he hasn't had any pain/panic episodes—which are likely caused by latent benzodiazepine withdrawal—since early december; with time they're getting fewer and farther between.

the kid has been doing pretty well at practicing wearing a mask. our goal is for him to be compliant enough to ride the bus to school and without having to be confined to a classroom by himself (with an aide.)

Calvin hugging his buddy, Mary.

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.