commencement

This weekend we had a houseful of people, just as I sometimes like it. We haven't done so in many moons. Michael and I were honored to provide the venue for the graduation celebration of one of his Bowdoin College photography students, John-Paul, aka JP.

On Friday, JP and his mother Sheila, his best childhood friend Marcus, and his girlfriend Andrea showed up after having driven twelve hours from West Virginia with pretty much everything but the kitchen sink, and began making a feast for Saturday's fifteen-plus guests. All of us were fully vaccinated. It was delightful to have such pleasant and loving company bustling mask-free around the house while I cared for my sick kid. While listening to FIP French radio, I watched things unfold from my perch on the green couch with Calvin cradled in my lap.

The house filled with the savory aroma of chicken sautéed in garlic, cilantro and other herbs. Seemingly without effort, Sheila and her crew of sous-chefs produced an incredible spread: pollo Ezequiel (as far as I could tell, all-dark chicken pieces breaded and fried, then stewed with herbs and Kalamata olives), asparagus spears topped with chopped hard-boiled eggs and tomato under a honey-lemon drizzle, poached salmon with a sour cream dill dressing, and couscous with dried cherries.  

Throughout the day, Calvin gave hugs and sat contentedly in JP's and Andrea's laps. Although JP is only four or so years older than Calvin—both sporting a bit of facial hair—the difference between them is legion. JP, who is probably six feet three inches tall, lifted Calvin easily into his lap and held him sweetly, as if Calvin were an infant or toddler brother. I couldn't help but consider that at Calvin's age—seventeen—JP had likely been looking into colleges to attend. Life really doesn't pull any punches, does it?

Yesterday, after a frigid and rainy outdoor commencement—which included honorary degrees given to Bowdoin Alumnus and civil rights activist DeRay McKesson, infectious disease specialist, Dr. Anthony Fauci, NASA astronaut and Mainer, Jessica Meir, and a posthumous award to civil rights activist and Freedom Rider, William Harbour—JP's family, friends, and few of his favorite professors and a dean began arriving. JP's uncle Russell had caught a last-minute red-eye from California to be here; it was so good to see him and Sheila again. JP's first cousin once removed, Carleton—a man who, like Russell, was lovingly described by Sheila as one of JP's dads—made the long drive up from North Carolina. JP's godbrother, Addy, came up from NYU. It was a splendid gathering of folks sharing amazing food, drink and cake in celebration of a special someone most beloved.

Calvin did well amid Saturday's hubbub despite not feeling his best self; I think he, like me, enjoys a good party. He also gave some uber-long hugs to Russell, Carelton, Marcus and Tricia, who were the most willing to risk their necks in his embrace. I made a handful of new friends who I hope will come back and visit us in the future.

Today, the house has been quiet. The rain, which retreated after the graduation ceremony, has returned as a lingering drizzle. The sky is white, the leaves in the garden are wet and shiny, and the mulch is damp and dark, all of which make the rhododendron and azalea blossoms glow. I'm missing my new friends and thinking about our conversations and the fun we had together. Calvin is upstairs chilling out with his baby toys and playing with his bare toes. He has no worries about studies or college, commencement or the challenges of new beginnings or tomorrow. All he and we have are singular moments. And this weekend there have been some good ones.

Photo by Andrea Tyree

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.

heartbreak kid

awake since quarter of three. worrying about my kid and the bad spell(s) he's been having. four grand mals in two weeks. two within four days. impossible behavior between seizures. bleating all goddamn weekend. no respite from his bellowing, even on our drives. his shrieks are unhinging. i roll up the windows so as not to startle bikers and runners passing by. nothing we do seems to help soothe or fix his affliction. it's relentlessly heart-rending. impossible to imagine how he feels inside.

i can't fall back to sleep. i get up for a drink and to pee. i see the waxing moon in the window frame. i understand its gravity as satellite and omen. i try hard not to resent the orb slung low in the southwestern sky. after all, it has no interests or designs. just glows there gorgeously, stars seemingly nearby.

slipping back under the covers, i worry about my sleeping child. i feel the seizure coming. like a perfect storm, everything has aligned—the blustery weather, the dramatic change in temperature and barometric pressure, the full moon just days ahead. the lord works in mysterious ways, some people claim, but only when it's well-timed. i don't find religion helpful or convincing. i feel the world would be better off without its sanctimony and warring. that's partly why i left it behind. calvin is living proof we don't need religion to be decent, loving and kind.

at three-thirty, the seizure hits my kid. at four o'clock, from the comfort of calvin's bed i hear a cardinal's first chirps. sunup is imminent. i stroke my son's head. in the dark, i picture him—his creamy skin, auburn locks, huge blue eyes with dabs of amber, noble nose, full lips, straight white teeth, slender frame, broad shoulders, sturdy back, flat tummy, little muscley pecs. i let my imagination wander—if not for calvin's brain anomaly causing his limited vision, wordlessness, awkward manner, sounds and gait, relentless seizures and side effects, calvin might have been so many things. if events had been different, he might have been a talented athlete. he has it in him somewhere. if things were different, he might've been a good student, artist, helper, activist, advocate, friend. no doubt he would have been quite the looker in the way of ordinary kids. my calvin might've been a heartbreaker. right then i stop imagining and realize—he already is.

one such day a year ago

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.

war zones, torture, and safe havens

I've heard it said that sleep deprivation and the recordings of crying babies are used as torture on prisoners of war. Having survived both for seventeen years, I have every reason to believe that's true.

Monday was gorgeous. Blue skies and plenty of sun. No breeze to speak of. Trees leafing out in apricots and greens. And yet melancholia had its grip on me as it does when things begin to feel hopeless, which a string of not-so-good days for my son can do to me.

Calvin's behavior has been an ongoing test of my emotional stamina. I guess that's nothing new. I suppose it's the cumulative years of hearing him moan and shriek and cackle madly that makes life with him at times so hard to bear. I'm no veteran of actual war, but I wonder what being Calvin's mother has done to me—the war zone of sleepless nights, the shell shock of repeated seizures, the dread of the next attack, the enduring din of his misery, the relative inability to quell his unrest, the fear of him succumbing to the enemy. Since Calvin's epilepsy diagnosis when he was two, I've become slightly jumpy. I'm tighter than I used to be. I'm sometimes prone to the rapid-firing of expletives. I have nightmares about him seizing. I both love and resent my little captor. I imagine escaping this imprisonment. I wonder how he endures his own.

And other things trouble me. Like the moment when I turn my back and Calvin crams half an over-ripe banana and some of its softened skin entirely into his mouth. Like so many other items—twigs, grass, rocks, the rubber stopper and metal catch in the bath—my heart pounding, I fished it out. Like a foot soldier, I'm forever at a heightened state of awareness, can never let my guard down in case of an ambush.

And there are times like today when Calvin won't stop carping like some wounded thing caught in a trap. Nothing I do helps. I'm sure it's because a seizure is on its way. Nevertheless, to hear him is torturous, and so too is feeling this mix of pity, self-pity, despair and contempt. It's times like these that feel so dark and bleak inside, even when the sun is out.

So Monday, after putting Calvin on the school van, I went for a drive by myself. I drove west on some back roads which I hardly travel along. At the top of one rise I was able to see for miles—a rarity in this landscape. It made me recall the steep, high hills and myriad vistas of my beloved San Francisco—so many chances to see distant horizons, whereas from my current vantage point there seem so few. I let the winding roads rock me. I turned on the radio to listen to some tunes. I switched between stations until I found songs that moved me; I so want to be moved.

Back at home, before Calvin returned from school, I spent some time in the garden working the earth, meticulously shaping nature—mowing, planting, weeding, pruning. Gardening is a natural elixir for the helplessness I feel from having so little control over my son's condition. By noontime, my melancholy was gone, having been evaporated on the roads and dissolved into the garden—two safe havens from the torture of my kid's war-torn condition.

secular blessings

another day spent inside these four walls. on a day meant for being outdoors. warm weather. summery skies. puffy white clouds drifting by. songbirds singing. breezes rattling our rickety windows. sun streaming in from the south. but the kid is sick and seizure-ish. he is in and out of it. sometimes in a trance. at others, clammy and panicked. i wish i could sleep standing up. good thing for windows and shades that pull down. good thing we're safe and sound. i think about gaza. good thing we aren't being bombed.

the garden is exploding in greens and pinks, ivories and whites. the viburnum's scent is splendid. i finally spied a hummingbird. there's beauty everywhere i look. trees in each window. they're alive with the wind. i wish i could join them in it.

i watch robins hunt for worms in the earth. cocking their black heads left and right. going in for the kill. sometimes the prey escapes. i follow calvin in circles as he crawls around the house between napping on me or the couch. he isn't eating or drinking. he's listless, but alive. we're trapped, but not imprisoned. there's a difference. we have room to move. nothing much to dread or fear. at least not of any imminent consequence. that's privilege. unlike too many in this nation. unlike the rest of the world. i count my secular blessings.

last night we had two guests inside the house. second time in over a year. it felt odd and amazing to say, come on in! embraces were made. tears were shed. laughs were had. glasses were raised. later, we watched a film about vampires called, only lovers left alive. again, i think of gaza. about the hatred of neighbors. the shedding of other's blood. the conceit of creeds. the lust for power. the grabbing of land on a planet we all call home. dogma is not god. that one is unforgiving. so much suffering and killing in the name of religion. ignorance and conspiracy theories abound. cowards become deceivers and demons. how hard is it to love others different from ourselves?

outside now the skies darken. dots appear on the asphalt. it's sprinkling. our roof is good. our house is solid. we're warm and dry and fed. i hear only my dog snoring, my son breathing, cars passing, small aircraft high in the clouds. there are no mortars or rockets. the streets are not bloody. the skies are not teeming. i enjoy so many secular blessings—hope, joy, luck, love, health, safety, forgiveness. with my boy in my arms, i find i can sleep while sitting.

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.

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.

musing on trees

spring rains make the garden look and feel amazing. stuff is budding now in crazy ways. when calvin is feeling up to it (he's been mostly horizontal the last three days) it's nice to get outside with him among the birds and shrubs and trees. he enjoys feeling them (and sometimes tries to eat them.)

i've been musing for awhile on trees. since i was probably two or three. hiding in and among them. making forts at their feet, boats from their bark, hats with their leaves. i've always felt as if they're my friends, even naming them when i was a kid. they're often on my mind. here in maine—especially during this pandemic—they're mostly what i see. every window of this house is a frame for trees.

like us, they're strange and amazing—the way they nurture and speak with each other. survive. thrive. suffer. die. the fact they come from seeds. like us, they worship the sun, reach to the sky, look out over the sea. grace is in their twists and turns and branching fractals, not unlike our nerves, arteries, veins, capillaries. grace is in the way they age, and in their autumn brilliance and diaphanous masses of rose and chartreuse green. in their fragrant flowers of spring. in the way light moves through their transparency.

whether growing solo or in thickets at the edge of cliffs or fields, wading in marshes, or washing up naked on beaches, their magnificence is at once revealed. gorgeous, even amid decay and disease, in their falling, scorching and rotting. caked with moss and lichen, their boughs splintered and snapped off into stumps, they appear no less majestic.

burning trees become satin-black carbon. white-hot, blue and amber flames curl and crest across their bark and meat. red embers glow and pop from inside their hollows. not unlike my father's, their powdery-gray cinders feel gritty between my fingers and taste like earth. like us, trees scar and swell and break and crack and bleed. their stresses are apparent. i can relate.

gorgeous canopies shelter, cool and shade. calm our anxieties. help us to breathe. trunks and limbs rubbing against each other squeal and groan as if mortal. trees whisper as winds rush through their needles and leaves. drop your gadgets and listen. they've been sage and sanctuary for millennia, for insects, birds and mammals, and to kids who climb, like me.

pine. maple. oak. cherry. pear. magnolia. spruce. chestnut. ash. beech. dogwood. fir. apple. redbud. birch. willow.

without trees, i'm not certain who or how or where i'd be.

certain miseries

I meant to post something about trees—gorgeous, majestic, budding ones. Instead, I'm writing about certain (particular and reliable) miseries.

At eight-thirty p.m., while watching a film, we hear our son's seizure scream, the one that begins every one of his grand mals. It's a shriek worthy of horror flicks and, like so many things about my son, unnerving. I had seen the fit coming in his day's mania and refusal to eat, his hot skin and flushed cheeks, his near inability to poop and pee. After it ends, I slip into bed with him. Michael pulls the blanket over us. With my arm around Calvin's waist, in the dark I begin to think and dream.

While lying there, I lament our miseries: my son's brain anomaly; his inability to speak; his difficulty seeing; his unbridled staring at the sun; his akathisia; by far and away, his seizing; our inability to travel freely. I dream of being able to leave—this reality, this house, this town, this country. I wish I were out on Pennellville or Rossmore roads right now (or a similar road in, say, Italy.) I wonder what it's like there at night, the half moon rising from behind a bank of trees, the inky sky sparkling with stars in a way unlike the well-lit skies in town. Perhaps I'd see mackerel clouds passing by. I imagine myself standing in the dark at a rise in the road overlooking the familiar rolling hills, my eyes adjusted to see all, my ears keen to every sound. Perhaps there'd be a ghostly mist blanketing the fields. Alone there, might I be afraid or consoled? Who might I see at such a time on these lonely roads? Childfree folks? Other wandering fathers or mothers? No one at all? I'll likely never know.

I think of the movie we'd been watching called Rage, with its actors' vivid renditions and their vibrant backdrops. Calvin's might be indigo or orange. What color would mine be? Electric pink? Burgundy? Denim blue? Acid green? Which one best matches my emotions? I tear through all of them—rage, desire, anxiety, fear, dread, discontent, hope, despair, shame, love, gratitude, joy, contempt. I feel them deeply. Perhaps more so because of Calvin, but what do I know?

At ten-thirty p.m., I give Calvin a prophylactic half syringe of CBD. At two a.m., again he seizes. I don't think the CBD caused the fit, but it surely didn't prevent it. Afterwards, he becomes agitated, incessantly rubbing his fingers together and patting surfaces in his bed. He throws an elbow into my throat. Picks up and pounces on my chest. Drops his full weight into my quad with his knee; I think of George Floyd, immediately regretting any self-pity.

At three-forty-five, I give Calvin his morning THCA and leave him alone to toss and turn so I can get some much-needed sleep. I close my eyes and dream of people loving me.

This morning, Calvin's breath smells foul. I wonder if it's blood from biting his tongue or cheek. With him in my lap on the faded green couch, I look outside to a white sky. I wonder where the clouds are headed. For now we're housebound. Calvin spends hours getting on and off the couch, patting its edges, reaching for me. He's not drinking, not eating, not seizing. He's going nowhere but in miserable circles. The metaphor is not lost on me.