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.

junior

This morning, I put my coulda-woulda-shoulda-high-school-senior, Calvin, (he's actually a junior because he repeated kindergarten) on the bus and got to work. I walked Smellie, did a load of laundry, folded some of it on the green couch for all passersby to see, transplanted a shrub, watered the entire thirsty garden, prettied up the withering day lilies, put clean dishes away, did my first legitimate grocery shopping (wearing my N95 mask) in a year and a half, read a bit of news, and wrote. A little more than halfway through the day, Calvin's teacher Paul, whom I adore, texted me to tell me that Calvin was doing well, and attached a photo of him walking down the stairs. No doubt The Kid is on the move.

On Facebook, oodles of friends sent me loving sentiments in response to expressing my angst about sending Calvin to school for such a long day after having spent most of his time chilling with me since the damn pandemic began. One person wrote, "he's gonna be FINE." I wish I could be so confident, but he had seven grand mals this month, and our boy has a habit of not being fine much of the time.

Because of Calvin's sheer number of grand mals, which have been ticking up for several years while his focal seizures have almost dissolved, I've been pondering adding a second pharmaceutical to his regimen. We've cut back pretty far on his Keppra to see if that makes a difference, though it's still too soon to tell. But when I read about all of the side effects of new and old drugs—some of them behavioral, others lethal—I get cold feet.

Epilepsy is a goddamn beast. There's no cure, and the drug side effects can debilitating and impossible to tolerate. Calvin's wordlessness complicates everything since we can never know what he is thinking or feeling. With at least one grand mal every week, a day or two of recovery, plus the drug side effects, I can't imagine he ever feels really good.

When it came time for the bus to show up, I sat in the dappled shade on the front porch with Smellie, my pink Chuck Taylors brightening me up. The bus was a bit late, allowing me to do what is exceedingly rare for me, which is NOTHING. When it finally arrived, seeing Calvin stand at the top of the stairs with his aide, Fern, keeping him safe, I was amazed at how much Calvin has grown since the spring.

The Kid gave me a hug, clawing my neck the way only Clawvin can do. While we stood in the driveway, our arms wrapped around each other, I tried hard not to imagine that—if things hadn't gone so wrong—he might be joining some of the seniors on the playing field, in the classroom, in the halls, and well on his way to college.

possibilities

just put calvin on the school van. got a strange mix of feelings. a tightness in my chest. a grumbling in my stomach. a quivering in my nerves. a lightness in my limbs. all at once i'm feeling sick, sad, proud, anxious, free, hopeful, grateful, elated.

calvin's new teacher, paul, whom i like very much, is riding with him to school today, making sure he keeps his mask and glasses on his face instead of chewing them. i sent in several bags including everything but the kitchen sink—two kinds of diapers, a packet of masks, a box of vinyl gloves, a package of wipes, two sets of clean clothes, a bottle of prune juice, a pair of backup eye glasses, a handful of kerchiefs, and a lunch made for the man-sized appetite of my eighty-five pound tyke.

calvin will return home from school just after noon. in the meantime, i plan to finish my coffee, walk smellie, pull some weeds, water a few new plantings, prune a bit, mow the lawn, relocate a rhododendron, take a shower, eat a bowl of oatmeal, write a little, and spend some time just wandering aimlessly around the yard i love so much while dreaming of the possibilities.

back to school

After spending all day every day of the past fourteen months taking care of my disabled son Calvin, he will be returning to school on Monday, barring any unforeseen circumstances or seizures.

I can't say how well my boy will make the abrupt transition from the literal and figurative softness that is our home—cozy rooms, rugs and sofas, beds and pillows, warm, loving bodies to lap-nap with and hug—to the the high school's hard-edged spaces and commotion, blaring announcements, rigid chairs and desks, industrial floors, and lots of people whom he hasn't met or spent time with in months.

As for me? Hahahaha! I'm feeling a bit anxious, like a mom sending her kid to preschool or kindergarten for the first time. I worry about his comfort and happiness, particularly since Calvin can't verbalize his troubles or wants, and I'm despairing at the thought he won't get hugs. Though in many ways Calvin is a tween-sized infant-toddler, chronologically he's seventeen, and last year the administration maintained that embracing him might look suspicious in a sexual way. On the one hand, I understand the logic in this age of predators. On the other, it's most regrettable that we live in a world where one of Calvin's most basic human needs is denied because of fear of litigation over appearances. I also fret about Calvin's ability to move freely between the school's classrooms, hallways and stairs, which his akathisia (drug-induced restlessness) demands his body do. But, until he is compliant at wearing a mask—though it's yet unclear what exactly that means or how it will be measured—moving through those spaces when others are present will likely be prohibited, despite the fact he's fully vaccinated. With that in mind, I've had Calvin practice wearing a mask, and I'm amazed and proud of how well he tolerates the bothersome cloth which, like so many things, he doesn't understand.

I trust Calvin's teacher and ed-techs to do their best to keep him happy and allow him to be active or restful, depending upon his needs. I hope they don't push him too hard; I imagine his stamina has waned while being indoors through the icy Maine winter and frigid spring. I also hope they don't leave him sitting at a desk staring at a toy he doesn't care about. I hope they speak to him, engage with him, read him books and sing him songs. I really am fretting his return.

I've heard it said that absence makes the heart grow fonder, but I'm not convinced. Though caring for Calvin full-time has been a major test to my patience and morale, the past fourteen months has brought me closer to my son. For the most part, I've enjoyed hanging out with him. It has also been rewarding to see his progress: pooping and peeing on the toilet (mostly); improved balance; better responsiveness to our verbal cues; a tiny bit of headway eating thick yogurt with a non-adaptive spoon; getting in and out of his bed with less help; taking bites from sandwiches and bananas (which we hold), his sheer growth—he's five feet tall (though only eighty-five pounds.)

And while I'll be happy to be freed up to do mostly as I please between 7:30 a.m. and noonish on weekdays, with the exception of Wednesdays, I'll miss my kid. I'll miss our frequent cuddles on the faded green couch, miss tickling him, giving him lots of hugs and kisses, strolling with him around the yard. I'll miss our relaxing morning drives, holding his hand and feeding him finger foods from the driver's seat, and watching him in the backseat sometimes moving as if he's dancing to the music. I'll miss taking in my favorite magnificent vistas, and seeing the smiling, waving, now-familiar faces of people who have unwittingly brightened my days through this long and lonely pandemic. And though I relish the thought of having the house to myself for a few hours, plus time in the garden alone, I already feel sad at the thought of losing our pandemic routine. Thankfully, though, there are still weekends, Wednesdays and dreams.

the gravity of it all

The gravity of the sun and moon makes tides ebb and rise, makes spells befall my son. At least it seems so. Twice he seized this weekend, on the brink of a new moon. The arrival of both fits was stealthy, no major ramp ups, no mania, no marked malaise, just his usual restlessness on what has become—because of coronavirus—an ever-shorter tether.

In the wake of last night's grand mal, Michael and I sat in the dark with Calvin, I on a step stool next to his bed, Michael in a chair he brought in from another room. Plates in our laps, we ate dinner in silence as our boy drifted back to sleep. Occasionally, I put my face next to Calvin's, or licked a finger and held it under his nose to make sure he was still breathing; it's the twenty minutes, or so, after a grand mal when the risk is highest of succumbing to SUDEP (sudden unexpected death in epilepsy) particularly for someone like our son.

Just before midnight, I woke myself crying out in a dream about my late father, though not the one in which he is whisked helplessly into space by a roped bundle of helium balloons caught around his ankle. As I came to, gale force winds were hammering the house and rocking the pines in their foundations. Rain and debris from nearby trees pelted the windows. Along with the new moon, I wondered if the approaching torrent had weakened Calvin's fragile seizure threshold. I padded into his room and slipped him a little extra THCA cannabis oil hoping to prevent another seizure from gathering momentum.

For over three hours I laid awake listening to the storm. I tossed and turned: worrying about my loved ones who got Covid and wondering if they'll fully recover; exhausted from nine months of caring for Calvin six to eight hours most days by myself; grumbling about another of Calvin's IEP meetings in which his one-on-one therapies continue to be whittled away despite the absence of any in-person or remote schooling since March. Just after I heard the clock chime three, I finally fell asleep.

Today, Calvin has been cat-napping on the green couch. He sleeps for minutes at a time, wakes, gets off the couch—or me—then on again and rests some more. We will likely spend the entire day this way as he recovers from the grand mals.

As I sit here considering options for a title of this post—gravity, new moon, life storms—I search my blog to ensure I haven't used any before. I type in the word gravity and find this one. I read and mull over each word, nodding my head slightly as I go. Then I watch the attached video, which gives me the chills. At the end my eyes and nose are stinging, my face crumpling up as I begin to weep. It's so hard, this life with Calvin, made worse because of coronavirus and the absence of school or nurses to help ease the load. If not for my husband, the weight of it would be colossal—the seizures, the sleep deprivation, the angst, grief, loss, frustration, anger, inertia—the immense gravity of it all.