weekend update

At 3:30 this morning, Calvin had his first seizure in three weeks. Since beginning the drug, Xcopri, in November of 2021, he has been enjoying "longer" stints, including one seizure-free span of forty-five days. We haven't seen any focal seizures for over a year. So, despite a trip to the emergency room last April when he broke his hip at school, then having to undergo surgery to install three metal screws to fix it, and despite another trip to the emergency room on New Year's Eve for an excruciating case of cholelithiasis (gallstones), plus gastroenteritis and aspiration pneumonia, Calvin looks to be heading for his best seizure control in years.

As far as the gallstones go, Calvin had an endoscopic retrograde cholangiopancreatography (ERCP) procedure at the hospital on March 1st. After waiting for three hours in a type of holding cell, he again went under general anesthesia. The procedure, which involves the insertion of a scope into his esophagus, went fine, though the physician did not find the gallstone that was allegedly stuck in his common bile duct. Instead, what the doc found was "sludge"—bits of stones and/or fat, perhaps—which he cleared out. He also widened the sphincter where Calvin's common bile duct enters the duodenum, so that future stones can pass more easily into the intestine and are less likely to block the pancreatic duct, which can result in serious, sometimes lethal, consequences.

So, I guess one could say that the ERCP was successful. Calvin is eating well again and thankfully has not exhibited the kind of pain we saw him experience in December and January.

So, that's the update, folks, except to add that hopefully Calvin's seizure this morning will turn out to be a one-off.

Thank you for your thoughtfulness and well wishes. As always, they mean the world.

Calvin waiting patiently to be prepped for the ERCP

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known several years, picked up the phone, my tears began to flow. I had called hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sophie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough to ground me. But I lost my mother to Alzheimer’s by degrees over ten or more years, then finally in early October of 2015. 

It seems, too, that I lost a dear friend, a single woman I'll call Stacy, who has no children and with whom I was very close. I had years ago called her in a similar moment of grief over Calvin, needing someone to listen, my mother having long become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

"Christy, ever since Calvin was born you’ve been so angry."

She went on to talk about acceptance, compelling me to ask her whether acceptance had to mean the denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find its balance. Hearing this widely-held and appealing theory offers me little consolation, the cosmos often feeling so much as if it tends toward chaos despite its astonishing beauty. After her mention of balance, we lost the phone connection mid-sentence. She rang me back, but I didn’t pick up because I felt more disheartened than before I had called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understood her meaning—knowing we all have our burdens to bear—she's never experienced anything close to what I have with Calvin. Still, I had tried my best to be open to what it was she had said on the phone, though I must admit I probably failed to hide my agitation. She ended her email with this:

my intent is unwavering which is simply to love and support you. 

I replied immediately:

i know. xoxoxo

I haven’t heard from her since; it has been nearly seven years. I wonder if she knows about my mother's death. I didn't contact friends when Mom died—didn't have it in me. But people soon learned from reading my blog.

Not long after that phone call, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sophie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. When I reached her I could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving her daughter, one that helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration, and anger, and about the parents who claim the graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for present and persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, complaints and pity parties. We agreed that being able to vent our frustrations, by writing, cursing and sometimes screaming, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth wrote to me, after I lamented not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we were next door neighbors. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better even though we hadn't really spoken.

Photo by Michael Kolster

put me in your pocket

like the satiny skin on the back of my hands, patience thins. so easily ruptured, like tissue, just with the faintest bit of pressure. after a tear, will it mend? will there remain a ghost of stress and frustration veiled over almost everything? like the close glove of humid air, it's suffocating. oppressive. i've felt and written this again and again. i wonder if things will ever change. or is there really no escaping?

my throat feels raw from screaming loud as i can. trying to drown out the maniac seated behind me to the right. hoping to release my tension. my son is a train wreck, today especially. he screeches and flails, moans and careens. he's out of his mind, and taking me along with him. he's hurtling toward a seizure. i can feel it. it sickens me. i give him an extra half dose of thca cannabis oil, hoping it will calm and fill the void—the one left by lowering his keppra again. we're hoping to get him off it like we did his other meds.

i'm pent up and seething. have loathesome feelings. i love him and i hate him, if only fleetingly. it's not his fault, i know. not anyone's, really. well, perhaps dr. Rx should take some blame. i'll gladly lay it on him. all those pills. drugs on top of drugs on top of drugs. benzos—for a toddler! no way to tell for sure which ones are hurting or helping. i try to trust my gut. mostly, it seems the drugs just inflame his fits and bad behaviors. but maybe it's just the seizures. i wonder how godawful he feels.

how long can a body and mind take this hell—his and mine, our family's? almost no time these days away from my messed-up kid. just short walks with the dog, evenings with michael and nights while asleep dreaming of people i love and who love me. even my writing is punctuated by my son's moaning, stomping and madness. he's a mini frankenstein. a jekyll and hyde kid. at times, i'm repulsed. i have to forgive him. forgive myself. we're all monsters once in awhile.

on days like these, driving along my beloved back roads offers no escape. i'm tethered to my little freak. and when i'm home, i can hardly do anything for all his insanity. it's insufferable. so, in fits and starts, i surf social media. live vicariously through other's photos—weathered docks and lakeside cottages, galapagos rocks and iguanas, western sunsets, cocktails, pasta, and crisp white tablecloths on city sidewalks. the images save me. give me a window of respite from shitty days like these.

put me in your pocket, please. from there, i can better imagine escaping. can view what lies beyond these walls. can see all that we are missing.

On one such day, photo by Michael Kolster

lonely road

When channeling my inner Joni Mitchell, and with the exception of a few lines which I've taken the creative license to omit below, I can imagine having written this bittersweet song—All I Want—about me and Calvin. When life mimics art, it can be a killer.

 

I am on a lonely road and I am traveling

Traveling, traveling, traveling

Looking for something, what can it be

Oh I hate you some, I hate you some, I love you some

Oh I love you when I forget about me

I want to be strong I want to laugh along

I want to belong to the living 

Alive, alive, I want to get up and jive

I want to wreck my stockings in some juke box dive

Do you want—do you want—do you want to dance with me baby

Well, come on

All I really really want our love to do

Is to bring out the best in me and in you too

I want to talk to you

I want to renew you again and again

Applause, applause—Life is our cause

When I think of your kisses my mind see-saws

Do you see—do you see—do you see how you hurt me baby

So I hurt you too

Then we both get so blue

I am on a lonely road and I am traveling

Looking for the key to set me free

Oh the jealousy, the greed is the unraveling

It's the unraveling

And it undoes all the joy that could be

I want to have fun, I want to shine like the sun

I want to be the one that you want to see

Want to write you a love letter

I want to make you feel better

I want to make you feel free

2017, photo by Michael Kolster

brokenness

so much brokenness.

my child's brain. myriad hopes and dreams. promises. hearts. this nation. too many american families, homes and livelihoods. the criminal justice system. the federal pandemic response. all of this comes to mind in the dim, quiet moments while holding my son as he seizes.

so much brokenness. 

Calvin's strident seizure-gasps, like that of a death rattle. white police officers suffocating another black man—hands cuffed, face pressed hard into asphalt pleading, "i can't breathe." what is wrong with people?

so much brokenness. 

black joggers being stalked and shot. white women calling the cops on black men and making up dangerous stories about threats and assault. black people getting arrested on their own front porch, harassed on their campuses, in their library or dorm, in the foyer of their own apartment, shot while watching television in their homes. white men then questioning whether these blatant acts are racist. white men and women condemning black folks who take a knee to peacefully protest their ongoing oppression and violence against them. what is wrong with people?

so much brokenness. 

folks contemptuous of the act of wearing masks meant to protect those most at risk of exposure to this dangerous virus, like calvin. scornful of masks which are worn because we are supposed to care about and for each other. menacing men armed with AR-15s protesting government protective measures. a president stoking that very dissent. states opening up regardless of the virus' trajectory. folks congregating without masks as if uninfected or immune.

so much brokenness.

greed. corruption. deceit. wickedness. inequity. bigotry. bullying. conceit. narcissism. self-dealing. defrauding. sloth. petulance. recklessness. all these from our so-called leader(s). what is wrong with this man, these people?

so much brokenness.

and yet, that which is broken can usually be fixed. with love. truth. charity. patience. righteousness. courage. unity. science. knowledge. wisdom. ingenuity. leadership. accountability. selflessness. humanity. hope. kindness. compassion. empathy. like holding a broken child, a glimmer of dawn seeping through the shades as he seizes.

Merrilyn Downs prays over a memorial for George Floyd
Photo, Zach Boyden-Holmes, The Des Moines Register - USA TODAY Network

so far not so good

Since Calvin got his first dose of Epidiolex—the plant-based pharmaceutical CBD oil—three-and-a-half weeks ago, he went eleven days between grand mals. But then he had four days in a row of seizures, a one-day break, followed by another grand mal this morning. In all, he's had five grand mals and, at the very least, three focal ones in that timespan. He seems to be under the weather, his foul breath indicative of some sort of illness which may have triggered the spell. Extra doses of my homemade THCA oil has worked well to keep any single seizure from clustering into more, and for that I am filled with gratitude.

Until I jump to any conclusions about the efficacy of the Epidiolex, I should mention that, prior to starting the drug late last month, Calvin had one pain episode of unknown source, plus four days in a row of seizures, most of them bad focal ones. I should also note that, with the neurologist's blessing of my stewardship, we began Calvin on a fraction of Epidiolex's recommended starting dose; Calvin started on 20 milligrams per day instead of 170 milligrams. Since then, we've increased his dose twice, and now he is taking 50 milligrams per day. So far, besides too many seizures, we have not seen any bad side effects—no insomnia, no diarrhea, no agitation, and definitely no loss of appetite—you'd never know it by looking at him, but The Kid can eat! And besides being sick and napping a lot, he's been pretty content, if not happy.

So, even though so far Calvin isn't doing so good seizure-wise, I hesitate to say it's because of the Epidiolex. It's really too soon to tell. Instead, I'll recross my fingers and knock on wood. Join me, will you?

not easy

Life's not easy, especially of recent. The coronavirus pandemic is wreaking havoc with our world. We're all facing hardship and uncertainty of one kind or another. Will we or our loved ones get sick? Will we have enough food? How will we pay our bills? When will physical distancing ease up? Will life go back to normal? When will we be able to have dinner parties?

Meanwhile, in India, millions of migrant workers are trekking outrageous distances—some 500 miles or more while wearing flip flops—to return to their villages after losing their jobs in the cities. Some have died along the way from starvation and exhaustion. In this nation as in others, refugees crammed in camps have no protection from the coronavirus. Some Americans are still not heeding physical distancing. Too many so-called leaders have been, and continue to be, slow to react to the crisis. Domestic violence is on the rise. Some nations are still in the thralls of civil war.

Because of these worries and stresses, at times I find myself more on edge taking care of Calvin while he is out of school and without his nurses here to help me. Thankfully, Michael is doing all of the grocery shopping and cooking, and taking care of Calvin so I can walk Smellie or do a little writing. Life for us, though historically protracted because our disabled child expands time in ways which are sometimes vexing and at others a blessing, has slowed even further now that we are on lockdown. Days feel longer and more monotonous, especially if we're trapped inside because of the weather. But I'm quickly getting back into the groove of taking care of him for hours and days on end, and I can see its benefits in the gift of having to practice mindfulness and the bringing into sharper focus what is both trivial and important. And, it helps that it has been nineteen days since Calvin's last grand mal, thanks, at least in part, to THCA.

This change in routine has prompted me to reflect on my own parents. I long for them—Dad who died twenty-four years ago, and Mom back in 2015. I wonder how my mother survived being at home alone all day when resources were thin, friends were scarce, and my father was away at work—one stint for months—leaving her with a six-year-old, a four-year-old, a three-year-old, a two-year-old and a newborn. How did she shop and clean and cook and wash and feed them and deal with poopy diapers all by herself? Then, four years later, I was born. Raising so many children must have been hell for her, and yet rarely did I ever see her lose her shit.

The gravity of this pandemic and the strict measures to contain it will no doubt heighten passions. Those emotions, like any, are real and valid, though perhaps now more fragile. I try hard to be patient and understanding with Calvin when he begins to chap my nerves. When he is screeching, my selfish instinct is to tell him to hush up, to say that he doesn't need to behave in the manic way he does. But what do I know about the way he feels? Not much. How could I? I can't get inside his head or his body to know how he is feeling physically or emotionally. What do I know? And so, now that I'm with him all day long, I've been trying to slow down, to meet his eruptions with love and affection, with as much understanding and sensitivity as I can muster. But when I fail, which I do often, I'll ask him for forgiveness and, in his own way, he'll give it to me willingly. He always does. We should do that for ourselves and for each other.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

when grace goes out the window

Partway through reading my friend Chris Gabbard's recent memoir, A Life Beyond Reason, I came across the word grace, and was emotionally stunned. Chris uses it to describe a commitment he made to raise his son August with as much poise and kindness as he could muster. August, like Calvin, had cerebral palsy and was legally blind, non-verbal and incontinent. Unlike Calvin, his condition was the result of injuries he suffered during a medically negligent and reckless childbirth. Reading the word grace, I felt a deep sense of shame and regret, since too often when caring for Calvin, any semblance of grace I might be able to muster, inevitably goes out the window. And though I can blame any number of reasons for my graceless behavior—sleep deprivation, agitation, resentment, monotony, grief, impatience, anger, frustration—I still feel remorseful of my inability to be wholly graceful when caring for such a pure, affectionate, faultless little kid. 

In the heat and humidity of early evening while strolling alone in the garden yesterday, Michael having gone to Boston for the night, I heard, via the baby monitor slung around my head, Calvin banging the wall behind his bed. I made my way up to his room and was greeted by the stinky news that he had pooped. After unfastening the safety netting and side panel of his bed, I first sniffed his fingers. Yep. He had put his hand down his diaper and into the shit ... again. Exasperated, I grit my teeth. I wiped him up, gave him a new diaper, and spread copious amounts of sanitizer on his hands. All the while, I bitterly and openly lamented the fact that, despite how often this happens and no matter how many ways I try to explain to him why he shouldn't do it, it never seems to sink in. I rubbed his palms and fingers down, cleaning underneath each fingernail with half a dozen baby wipes. I changed his pants and shirt, which were both wet, then put him back into bed. When laying him down, I noticed a brown splotch on his clean sheet and another on the wall above his head. I tried hard to contain my vexation, tried to emulate my friend Chris, and to act with grace. But in my state of cumulative and acute sleep deprivation, plus a certain kind of traumatic stress disorder from fifteen years of rearing a boy with chronic epilepsy who it still a lot like an infant, I lost my head.

"GODDAMMIT!" 

I screamed at the sheet, at the walls, at the bed, at myself, at my son. Luckily, Calvin remained visibly unfazed. No doubt, however, with all the windows open, any passersby or neighbors could have heard my ugly distress. The grace I tried to hold in my body's vessel, in my brain and spirit, went right out the window instead.

I apologized to Calvin and to Nellie. I should apologize to the neighbors just in case. I forgave myself for the eruption which came on the heels of a buildup of worry, frustration, pressure and tension. But when I woke up this morning, I was uniquely aware that I hadn't spent the night clenching my teeth.

questions (some rhetorical, others not)

will these early-morning seizures ever stop? will calvin eventually succumb to them? am i slowly going crazy? is my son already insane? when will so much of white america finally confront their ugly racism and bigotry? do i have traumatic stress disorder? has being a helicopter mama ruined me? will my patience ever give way? how can i stand my angry self? will life with calvin ever get better? why did that guy sitting on his porch look away from us when i caught his gaze? will folks ever stop gawking at calvin and me? will my son ever learn how to feed himself? will he ever be potty trained? will he ever be seizure free? when might i get a full night's sleep? am i being selfish? how do i manage living with my son's chronic illness and disability? when will police ever stop mounting violence against black and brown people? will contempt for the poor ever fade? will the occupant of the oval office ever be dead to america? when will women be treated equally? what will happen to the children of refugees? how can so-called leaders seem so unmoved by their caging of humanity? why are some folks so ignorant, cowardly and afraid of change? will calvin live beyond our years? will he die next week? next month? next year? how can i keep caring for him? could i really let someone else be his caregiver? will others prey on him? have they already? why do i feel such love and the next minute such contempt? will i ever get my life back? is this my life? what would life be like without him? will i ever return to rome? paris? madrid? will we ever leave maine? why do some folks believe in a merciful god amid such vast injustice and misery?

Photo by Michael Kolster

curses

For the past two days I've been channelling my inner Joan Rivers, my best Samuel L. Jackson, my George Carlin, cursing worse, even, than Andrew Dice Clay. With paper-thin patience, I've been struggling to not let my kid drive me crazy with his constant grousing. Needless to say, I'm failing. To make matters worse, Michael has been out of town for three days at his solo photo show at the Telfair Museum in Savannah, thankfully to return any minute, so I've been flying solo since Thursday evening.

I haven't been counting, but I'm certain I've spat—at least once—most of the words on George Carlin's list of things you can't say on TV (think of the worst swear words possible) plus a peppering of other foul curses. I'm exasperated, sleep deprived and irked. Calvin has been intense the past two days, at times devolving into sudden manic tantrums, the source of which, since he can't tell me, I can only guess are either gas pains or a side effect of his Keppra, namely emotional lability.

I'm so fed up with listening to him shriek and whine and grouse all day for two days, and I'm sick of listening to myself at times respond with such ugliness. The scowl on my face feels etched in so deeply I wonder if it will ever fade.

Photo by Michael Kolster

misery

In bed with my son again as he thrashes and screams. He lunges at me, grabbing what would be fists of hair if I still had that much on my head. He flails for hours, the acetaminophen and THCA cannabis oils doing nothing to assuage his pain. Huddled in the corner of his bed, I guard my eyes, teeth, groin, and breasts from being inadvertently kicked or punched, while protecting Calvin from hitting his head or falling out of bed.

His screams are haunting, as if he is having his fingernails or teeth yanked out one by one—they are strident, deafening, tormented, deranged. He suffers these hours-long bouts of misery every couple of months and I still don't know their source or nature, wonder if they're migraines, kidney stones, gas cramps, impaction, muscle spasms, benzo withdrawals, night terrors.

And though he isn't even in the first percentile—barely four foot five inches and just under sixty pounds, he's half the size of an average boy his age—he is getting bigger and stronger yet.

Exasperated, I lift my wailing boy out of bed and lay him on the changing table. There, I undo his diaper and squirt 0.25 mls—5 milligrams—Palmetto Harmony CBD oil from a syringe into his rectum. Within seconds he calms. Within minutes he is asleep. He has been thrashing and shrieking for hours. It's 11:30 p.m.

When I wake up my arm is asleep. Stealthily, so as not to rouse my sleeping imp, I crawl out of his bed, raise and lock its safety panel, secure its netting, then return to my bed, hoping he'll be okay, hoping this never happens again.

Still frame, from the film Melancholia

real boy

For years I have dreamt of taking Calvin to the movies, but our son won't watch television or videos. They don't hold his attention and he can't sit still very long anyway. There have been countless dreary days with nothing to do when I'd have given my left eye to take him to a movie. But Calvin can be loud as hell and quite distracting. So when my friend told me of a special children's performance of Pinocchio, lasting only one hour, I called up the Maine State Music Theater box office. After explaining our circumstance, we were gifted the tickets.

The house was packed. Little kids with their parents and grandparents filed into the auditorium. I must admit I was nervous and, regrettably, my anxiety seeped out in the impatient way I treated a couple of ushers when navigating the way to our seats, which were at the back of the main floor in a special row reserved for wheelchairs.

When the lights went down Calvin turned his attention to the neon exit sign, but then seemed to settle on the stage. The audience's cheering and clapping didn't seem to faze him at all. To keep him otherwise occupied, throughout the performance I fed him blueberries, grapes and pieces of chicken sausage. At times he shook his head back and forth manically, flailing his arms, then he began to vocalize. Thankfully, his intermittent grunts and howls were not loud enough to warrant removing ourselves from the show.

To my surprise, Calvin made it to the finale. I considered it a major feat for us both—my crazy kid and I venturing so far out of our comfort zones.

As the crowd dispersed, two women sitting next to us remarked on how well he did. One of them, Linda, told me that at times during the show Calvin patted her shoulder. As we waited to make our way down the aisle to the exit, the other woman, Marcia, asked me if I thought Calvin understood the play. I told her, no, going on to explain that though he does seem to understand some language, he probably doesn't comprehend conversation.

"He doesn't seem to grasp abstract things, like birthdays," I told them.

I went on to mention how surprised I was, shocked really, to have been so emotionally affected by a fable I've known since childhood. As the parent of a disabled, chronically ill son, the notion of a floppy puppet—one who can't walk or talk, and who has wooden legs resembling my Calvin's spindly ones—becoming a real boy proved painful for me.

"I want that for Calvin," I told the women, tears welling up in my eyes.

Marcia opened her arms widely and pulled me in. Linda offered the same gesture. I felt the warmth of their hearts in the long embraces they gave me. I told them I had had a similar shock when I had gone to see the theater's production of Young Frankenstien years ago, when The Wretch breathed life, then sat up from the slab, groaned and took his first awkward steps. In Frankenstein's Monster, as in Pinocchio, I saw my little boy.

patience thins

Patience thins as my boy has more mild, short, insidious seizures—four yesterday and at least one this morning. One eye is red—mine; there is something in it I can't seem to get. Did I forget my child hit it? My fine hair has been ripped off and out by my boy's clammy grip.

It's oppressively hot and humid outside. Inside, the air is close. I sweat. Surfaces are sticky. My son is home from school again as I await his next fit. I hope the cannabis quells them into submission.

He pokes his eye and shrieks at times. He shakes his head back and forth crazily—drool flying—flailing his arms in a spastic frenzy. In my exasperation, I've a rare primal urge to slap him upside the head. I take a big breath instead. Earlier, I threw his shoe into the far corner of his bed. Pulled a muscle as I flung it. Felt no satisfaction as it punched the softness of his quilt. Pent-up yesterday, I mused on hurling opaline bowls into cement to mimic my heartshatter from the days' and weeks' and years' events.

Now my son swings and spins in his jumper. His jaw juts and clenches in the repulsive way that makes the "seizure dimple" I detest. His arms crimp, elbows up, claws inches from his face, fingers madly snapping. He's my son, but I don't recognize him, or perhaps I don't want to when he looks and acts like this.

It's not his fault, and yet.

life-radius

Lately I've been stir crazy, perhaps a case of cabin fever having spent most of this summer plus the last decade plodding along behind my son in a life-radius too small to serve most anyone well.

There was a time when both Calvin and I were relatively calm: me before becoming a mother, Calvin when he was a tot. Though for years he cried from colic, there were long stretches of time when he lay quietly next to us in bed, on the couch or on a blanket or towel spread out on the grass. On hot days, he'd recline in a baby bathtub outdoors, cross one foot over his other knee, fold his hands behind his head and just chill. He was tranquil. His body could stay still. And even though our life-radius was limited, there were placid moments within it.

All of that changed after he began taking the drugs meant to combat his seizures, including benzodiazepines, the first of which, Klonopin, was prescribed by Dr. Rx when Calvin was just three years old. The drugs took a toll on our boy. I lament having learned too late that the Klonopin was unnecessary—ostensibly prescribed as a bridge drug while he titrated up on Lamictal. Zonegran, which had been simultaneously prescribed at a therapeutic level, could and should have served the same purpose. Instead, one drug became three.

For years it appeared to me Calvin might be on the verge of walking by himself, but when he began the ketogenic diet at the age of four, what little balance, coordination and strength he had fell to pieces. Subsequent blood work revealed an increase in his antiepileptic drug levels; the diet must have been causing his body to metabolize the drugs differently. To improve his balance and muscle tone, we were counciled by Calvin's new neurologist to take him off of the Klonopin—the once-temporary bridge drug having remained in place for well over a year despite my previous pleas to discontinue it. Within days of initiating what I understand now was a swift elimination, Calvin's seizures doubled, and we were advised to add a fourth antiepileptic drug while he completed the benzo wean. Not knowing what we know now, we added another benzodiazepine, clobazam, aka Onfi. We were told it was thought to be less addictive and less of a muscle relaxant than the Klonopin, and that it might help ease his Klonopin withdrawal. It did, but because of habituation, which is a hallmark of benzodiazepines, Calvin eventually advanced to a very high dose of the addictive drug, and soon he was no longer capable of sitting still, sitting on our laps to read his favorite book, lying next to us in bed. His body became a mass of flailing nerves.

This past Februray, Calvin had his last dose of clobazam (insert secular amen here); the wean took us nearly four years. But his restlessness, though improved, for the most part has remained. He has a hard time sitting in a chair without being strapped in. He sits on our laps for mere seconds, minutes at best. He snaps and rubs his fingers incessantly. He doesn't attend to toys for more than a few moments. He paces around the house, constantly on the move from table to chair to jumper to shutters to stairs to couch to door and back again. I wonder if he will ever calm enough to learn to feed himself with a spoon.

But on a good note, it has been thirteen days since Calvin's last grand mal, nearly twice as long as his average span between convulsive fits of late. In that time we have witnessed only two partial complex seizures—one this morning—and he is, for the most part, sleeping very well. I'm tempted to owe the long span between grand mals to the new CBD oil from the good folks at Palmetto Harmony, but we need to give it more time before we can feel more certain. In the meantime I'll remain in my tiny life-radius, antsy and anxious to find an elixir that works to rid my boy of his fits, hoping for some newfound calm.

Michael and Calvin, July 2006 before his first apparent seizure, before the drugs.

cautiously optimistic

Lately I am feeling cautiously optimistic about the promise of Palmetto Harmony, the new CBD cannabis oil we started giving to Calvin a few weeks ago. We had discontinued a different CBD oil several months ago thinking it might have been exacerbating Calvin's complex partial seizures. But in a slight a panic over more frequent grand mals of late, I remembered hearing years ago that finding the right strain of cannabis can sometimes take a bit of trial and error.

Since Calvin's first dose of Palmetto Harmony, Calvin has consistently slept more soundly and had an easier time of falling asleep. He has also been calmer and is smiling more. The most profound effect I've witnessed was a couple of days ago when he exhibited almost every one of his seizure harbingers—eye poking, extreme agitation, mania, restlessness, dreadful butt rash, completely amped up behavior, repetitive humming, pacing, mad finger-stimming, dropping down, shrieking, warm skin. Suspecting an impeding seizure, I increased his CBD oil, which we give him only at bedtime. Calvin was asleep within half an hour; the seizure never transpired. The next day Calvin was back to baseline and has been a pleasure to be with since.

So, though it is still too soon to tell, I am cautiously optimistic that this new CBD oil is working to calm Calvin's brain and body. Hopefully it will help to reduce his seizures, but if nothing else, at least I can delight in a few days of a compliant, fairly calm, happy child.

With his Gpa last year ... Calvin's looking more like this of late.

full moon fit

Last night, when the full moon was at its peak in the sky, I watched my son while his father held him as he seized. It was an unusual time for Calvin to have a grand mal, and had Michael and I not stopped giggling in bed, we might not have heard it at all. At first I thought the sound was Nellie licking herself, but when we quieted I recognized the rhythmic smacking of Calvin's lips.

Unlike most nights, I hadn't fully expected this one; I was sure Calvin would make it to day ten without any seizures in between. He'd shown only a few of the harbingers that ring them in.

Still, nine days without any kind of seizure isn't a bad stint compared with at least half of Calvin's last eight months. But it isn't long enough to be sure that the new CBD oil we switched him to, the one with slightly more THC than the last one, is doing any further good. What I am interested in seeing is whether this new oil from Haleigh's Hope might help limit the partial complex seizures Calvin is prone to having in the hours and days after most of his grand mals.

What does seem somewhat clear is that the new concentrated THCA tincture I made a few weeks back does appear to thwart his grand mals to some extent. Typically, when Calvin has a grand mal before midnight, he almost always wakes later to a second one. This time, having given him doses of the tincture just after the seizure, then at 1:30 a.m. and again at 4:00 a.m., he did not have any more.

My boy is still not back to baseline, and the last time he had an evening grand mal he suffered two more the next morning. So we'll sit tight here at home today, giving him a tiny bit extra THCA, thankful that the moon has entered its waning stage.

Photo by Unknown

conundrum

Two weeks have passed since we discovered Calvin's toxic blood level of vitamin B6 and eliminated it from his regimen. I felt its removal was warranted, though I wonder if perhaps its abrupt withdrawal has messed with Calvin's benzodiazepine and/or cannabis levels seeing that they all use the liver's cytochrome P450 to metabolize.

In the removal's wake, Calvin has been more lethargic than usual. Perhaps, as his white blood cell count indicated, he was/is suffering from some sort of virus. He has improved slightly with each passing day, and I haven't seen a seizure in a week, but his stubbornness, as manifested in his refusal to walk where we want him to, and his tendency to want to drop down in those moments—often in the middle of a crosswalk—has made taking care of him exasperating; there are few places we can take him where he is willing to walk more than a couple of yards, though he is fully capable of doing so (we know this because he likely walks virtual miles while at school).

We stay at home more than usual, it seems, and even getting Calvin to stroll in the garden with me lately—a daily routine—has proved challenging. I feel our already small world closing in on us, and the places we can take him are limited to the grocery store, the health food store, the donut shop, the coffee shop and Woody's house three doors down. Often, he won't walk for more than a few steps before attempting to drop down, and I have to yank him along like a mule since he is getting too big to carry for any distance, in addition to my refusal to enable this behavior or play into his pranks.

Complicating an appropriate response to his behavior is that I never really know if his stubbornness is like that of a toddler exhibiting his will, or if it is because his bones or muscles in his hips or thighs or knees or shins or ankles or feet hurt or are numb, or if he is feeling dizzy or headachy or sickly, or is experiencing the effects of benzodiazepine withdrawal, or if a seizure is coming. And so I find myself swinging from patience to intense aggravation, and I feel the scowl carving lines into my brow.

In passing, friends ask us the customary question about our plans for summer.

"We can't really go anywhere with Calvin," I say, mostly not bothering to explain how we'd have no safe place for Calvin to sleep and great difficulty doing any activity with a non-compliant, non-verbal, incontinent, agitated, thirteen-year-old boy save strapping him into a thirty-five pound adaptive stroller which has major limitations and aggravations of its own.

And so, we find ourselves in a decade-long conundrum: spending most of our time at home moving about the house from bed to jumper to bathroom shutters and back again. I try, though not hard enough, to get us both out of our safe yet monotonous and psychologically ruinous comfort zone, which is the only way we'll both continue to grow.

in the meantime

Stepping outside this morning, my breath froze in fifteen degrees. The street was quiet, the sidewalk patched with sand and slush, the front lawns still laced with snow. Even so, it felt a little like spring somehow. The sun beat my shoulders through a sweater and down coat and I could hear in the trees little birds flitting and chirping—the robins, the cardinals, the chickadees.

When Nellie and I reached the fields I let her off of the leash and she led me across the frosty tundra. We were alone, it seemed, but for the pileated woodpecker’s staccato echo coming from somewhere in the woods. I stood at the edge of the trees at the mouth of a snowy path, listening.

Lately, I’ve been bemoaning my inability to come and go as I please, what with Calvin on school break and no help from a nurse, in the face of some wildly windy days with subfreezing temps, sleepless nights, viruses and seizures. I see and hear reports of people’s travels to places far away—the Caribbean, Africa, Europe, Asia—and I wonder if I’ll ever be free to visit those places again. Standing at the forest’s edge I pause, grateful that at least I had the opportunity and gumption to travel extensively in my youth. Some people don't.

This sense of spring in the air gives me a hankering to work the earth, to prune and mulch and dig and plant. The feeling made me realize that I’ve got a lot to be thankful for right here in my little corner of the world. I’ve got an uber-cozy home, a stellar husband, extraordinary friends, a couple of decent hangouts, good food, good health and health care, a fantastic dog and a most loving turkey of a kid. I’ve even figured out, I think, how to reduce his seizures a bit.

I also have my writing. And putting my thoughts and feelings down on paper, and with the prospect of soon being able to get my hands into the dirt, I can forego exotic trips, at least for now.

In the meantime, I’ll hang out at home, traipse around after Calvin shielding him, with my body and flattened cardboard boxes, from staring at the sun, have friends over for coffee or wine, and watch Calvin explore them as if he were blind—oh, that’s right, he is legally blind! I’ll watch my movies and sip my bourbon and look outside at the plants as they bask in the sun and think about which ones I’m going to move and ponder a long overdue trip to San Francisco where things are blooming now, and maybe, someday, a trip to Jamaica with Michael and Calvin (cannabis is legal there). I’ll sit and watch the wind move through the pines. I’ll work my words. Watch students go by. I’ll meet new friends, bake cookies, light candles, hang out with Woody over shots of whiskey on ice and wait eagerly for my husband to come home from work.

Calvin with his buddy Uncle John

different ships

“We may have all come on different ships, but we're in the same boat now.”   

― Martin Luther King, Jr.

I know what it feels like to be marginalized, to live, in some small ways, on the fringe of society because of my son’s disability. I know what it feels like when my child doesn’t get invited to birthday parties and can’t participate in play dates or sports, concerts or plays. I know what it feels like to be in a group of mothers exchanging stories about their children’s accomplishments while I sit silently trying to smile through the conversation until it moves along to something new. I know how it feels to be gawked at by strangers as if my kid and I came from another planet, and what it's like to wonder if others think I'm culpable for making my child the way he is.

Perhaps I was born with my hunger to know other. As long as I can remember, I’ve been drawn to those unlike me. The town I grew up in was mostly white, but I had a childhood crush on a cute Chinese American boy and was friends with an African American girl who lived nearby. I befriended introverts, Jewish kids and gay kids who were still in the closet. In my sophomore year at college, my best friend was African American. After college, I kissed a Muslim in Montparnasse, fell in love with a black man—we were together five years—befriended Japanese women, Filipino and Chinese co-workers, gay men and women, octogenarians and loners. It feeds my soul to visit with homeless folks and our town’s intellectually disabled, to acknowledge that they exist and matter when so many people simply turn away. I understand that intimately knowing people who are different from us can enrich our lives, communities and nation in meaningful ways.

I suppose my predilections might be why I was so offended by the words of two local school board members responding to a request by our town’s Jewish community to include three Jewish holidays on the school calendar, mostly to serve as a gesture. Two board members, both middle-aged white women, had this to say:

“I don’t know how jazzed I am about having outside groups put their information on our, um, school calendar.”

And this:

“Those Muslims, um, some of the other unusual, or, not the mainstream religions, I guess, have holidays and ... long periods of time ... and, I don’t know ... I mean, we’d stop having school pretty soon.”

The women’s ignorant rhetoric, particularly the use of the words outside groups and those Muslims, to describe good people within our community, incensed me. Regrettably, the first person who came to mind after hearing their statements was Donald Trump. I sat and wondered how folks like these can populate our public institutions in this fairly diverse nation of ours. I mused a while longer on Trump, describing him in my mind ...

boorish. cocky. misogynistic. racist. bigoted. caustic. jingoistic. inflammatory. pompous. vulgar. thoughtless. hot-headed. bully. fascist.

... and then I imagined the words that likely spew from his mouth to describe his fellow Americans. I started typing them here, but then erased the long and vile list of contemptuous slurs I reckon he uses to refer to women, blacks, rural whites, gays, Muslims, Hispanics, poor, homeless, disabled and addicted people. Suffice to say I have little doubt he'd call my son Calvin a retard.

... and then I wondered why anyone would toy with the notion of having someone like Trump lead our nation when, clearly, he loathes most of us. I'm having a hard time getting my head around support for such an offensive person for president, a man with seemingly zero humanity, a man who likely detests the very folks who say they'll vote for him. How is his behavior and manner of thinking worthy of our praise, of receiving our nation's highest honor?

In my mind, the best leaders show restraint, patience, thoughtfulness, kindness, compassion, empathy, mindfulness, composure, intellect, courage, tenacity, respect—people like our current POTUS and Martin Luther King, Jr. They are champions for society's underdogs, apostles of justice, crusaders for us all, even the little guy, like my boy Calvin, and of people who practice different religions and who came on different ships.

Yep, we're all in the same boat now. Give me a skipper who won't throw me overboard simply because he doesn't respect my religion or like the way I look.