on embracing

After Calvin's grand mal seizure yesterday morning (I guess I didn't cross my fingers hard enough) I spent most of the day in his embrace. All he wanted to do was to stay in bed with his arms around my neck. He must have had some sort of stomach bug because ... well, I'll spare you the gory details. Thankfully, though, he was able to keep his seizure medications down, something that when he is sick is always of grave concern to me.

The day had me thinking of how many hours I've spent simply embracing Calvin, as if I am still a lifeline for him as much as he is one for me. I spend a tremendous amount of time tethered to him since he doesn't walk well, doesn't follow instructions well and needs great assistance doing everything. I hesitate to think about the void Calvin would create if he were to disappear, and I wonder, if that were to ever happen, if I'd simply wither away without the life spring of his embrace.

Photos by Michael Kolster and Christy Shake

cross your fingers and knock on wood

After what feels like weeks, even months, we are finally getting a good soaking. It rained all night, softly drumming the roof in a way that would normally woo me to sleep if not for my restless child. I've been up since three-thirty changing wet diapers and wet pajamas, taking Calvin's temperature, wondering why he woke crying, giving him an acetaminophen suppository, crawling into bed with him, his arms clasped tightly around my neck. I'm not sure what was vexing him. My first guess was that he was primed for a seizure, today being day ten since his last grand mal.

But Calvin did not have that seizure, the one I've been expecting for the past three mornings. Perhaps he won't have it tomorrow, either; maybe he'll make it until day twelve which would be the longest grand mal-free stint he'll have had since mid March. If he goes that long I'll be willing to bet it's due to the recent dose increase in my homemade THCA cannabis oil. A week ago I increased it by twenty percent on account of the flurry of partial seizures he's been having most months and because I haven't increased it to accommodate for his weight gain in nearly a year.

Cross your fingers and knock on wood.

We continue our slow-as-cold-molasses wean of his benzodiazepine clobazam, aka Onfi. He is down to three milligrams a day from a ridiculous high of thirty-five three years ago when he was a much smaller child. With any luck Calvin will be completely off of it come this time next year. It is a scary process. I see his seizures tick up slightly in some months and I wonder if they'll continue in a worrisome trajectory. I read about new pharmaceutical drugs and wonder if we'll have to resort to them some day. I remember the crazy doses of powerful, mind-altering pharmacueticals that failed Calvin and yet impeded his development and affected his sleep, his appetite, his behavior. I recall clearly the one time Calvin said Mama, when he was eighteen months old, just before the seizures began, and I wonder, were it not for the drugs, maybe he'd have developed some language by now.

Soon, Michael will pick up the next batch of cannabis flower from our indispensable dispensary, Remedy, and sometime next week I'll begin making Calvin's next batch of THCA oil. Today, the leaden sky, though it darkens the world, sets the fall colors aglow. I'll be going up for a nap, now, and I'll fall asleep to the drumming of the rain as it comes down in sheets and squalls.

stuck inside on a rainy day

watermelon in easter hay

As we cruised down the highway at seventy-two—drivers beside us texting and eating and smoking cigarettes—a tinge of anxiety buzzed through my bones at the thought of getting into an accident. I wondered: what would happen to Calvin if Michael and I died in a crash? Unlike most other kids, his life might hang by the thinnest of strands in the fragile hours and days after our demise. Regrettably, I let my imagination get the best of me.

who would care for him? would he get his next dose of antiepileptic medication on time? what about the ones after that? what would happen if he didn’t get his cannabis oil? who would make the oil once he ran out? what tragedy would befall him if he didn’t get the right medications in the correct doses at the right times? and who would truly love our boy in our stead?

We were on our way to see Dweezil Zappa play his father’s music. The band members were happy and animated. The audience reacted generously with several standing ovations as early as the first few songs. Partway through, Dweezil explained that a couple of his siblings are suing him for the use of his own last name on tours. The crowd booed at the notion and one man to my right shouted, “Siblings are overrated!” During the last of his father’s songs, Watermelon in Easter Hay, Dweezil wept as he played one of my all-time favorite guitar solos. And though I don't know the meaning of the song, as Dweezil sniffed and dabbed his eyes, I imagined him remembering time as a child spent with his dad, perhaps lamenting his father's untimely death at barely fifty-three—the same age as Michael and I.

Two nights later I dreamt that Calvin died. In the dream I was alone in New York at some swank hotel. My street-level corner room was all windows, and I carefully closed each partial crimson drape to obscure onlookers' view and to hide my mourning. Friends and strangers flocked to my side to offer their condolences for this grieving mother. I was in a state of shock, wandering the streets and avenues like a zombie without my Calvin in tow.

“I feel relieved,” I told someone, blithely expressing my newfound freedom to move about without the burden of my severely disabled son. But then, having seen the flaw in the sentiment, I waned to bury myself in a hole.

A telegram arrived for me, and when I rummaged through my wallet looking for bills to tip the messenger, a couple of Calvin’s soiled bibs fell out and onto the floor. The realization hit me hard: I’ll never again see or touch my boy.

The thought yanked me out of my dream, or was it Calvin’s wakeful humming that did it? I stepped into his room, reached into his bed, rubbed his curved back, kissed his supple skin. With his legs tucked up underneath him nearly in fetal position, and with his head in his hands, he looked like a little watermelon there in his green tee, amid a fluffy comforter nest. And I thought of Zappa's song. And I wanted to cry. And I’m glad Calvin is alive. And I'm not ready to die.

bedfellows

It was a first. Yesterday, Calvin walked down the street three doors to Woody's house without holding my hand—the entire way. I've never let him do it unassisted before since the uneven, frost-heaved pavement proves a rough terrain for my wonky kid whose bones are so thin and weak I fear a break if he trips and falls. I told Woody how impressed I was with Calvin's balance, then added that it probably meant he'd have a seizure in the morning.

Regrettably, it seems I'm batting a thousand these days.

At five a.m. the seizure came, sweeping us up into its panic, shaking our sleepy heads awake with its tremors, chokes and quakes. I rubbed frankincense into Calvin's wrists and feet and dabbed some on his pillow because I've heard its sultry essence can stop seizures. When the seizure was over, I gave Calvin his clobazam early, squirted it into his mouth in tiny bits followed with drops of water from a syringe. He shivered and twitched in my arms for forty-five minutes after the fit, his hands clammy and cold.

It rained today, a gift for the parched earth to drink, and a good day to be stranded indoors. I kept my boy home from school—again—following him around as he walked in circles, singing to him and reading him books on my lap as he accidentally pulled my hair. I managed to make a batch of cookies while he spun in the jumper; we delivered a few to Woody once Calvin seemed well enough to go outside. I held Calvin's hand this time and watched his face for signs of partial seizures as we strolled.

With some extra Keppra and two extra doses of THCA cannabis oil, we managed to dodge further seizures today. But the night brings uncertainty and risk since sleep and seizures, for whatever reason, are bedfellows.

It's already dark outside, though I can still see a steel sky beyond the limbs of pines. Somehow the sound of cars passing by on wet asphalt is reassuring to me, perhaps because of my time growing up in the suburbs of Seattle. Soon, Michael and I will put Calvin to bed. Hopefully, he'll smile at the chance to rest, as the drugs seep into his brain, as the cannabis soothes his soul. Hopefully, his only bedfellows tonight will be sweet dreams of kisses and hugs, rain and clouds and pillows.

homebodies

From Wednesday:

Yesterday afternoon after dropping Calvin off at school, I was left with just enough time put tulip bulbs into the ground and walk Nellie before my boy came home on the bus. This morning before dawn, as I laid next to him after his grand mal seizure, I was thinking about those precious tulip bulbs—their smooth, almond flesh cupped in thin skins nestled carefully into Mother Earth dark and moist as coffee grounds.

Sadly, today we were homebodies again. Going nowhere.

In his post-ictal phase, Calvin shivered, his teeth chattered and his palms sweat. I ache for him. I wonder if he feels pain, fear or anxiety before, during or after these attacks. I can't know for certain, but by the look on his face sometimes, and by his behavior and the sounds he makes, it is safe to assume that he does.

But he slept a little, while I remained mostly alert next to him taking in the sounds of a waking town, of birds chirping, cars passing, of Michael shuffling around downstairs putting on the coffee.

It's impossible for me not to think about the election these days, especially in a darkened room while stone cold awake. Perhaps it's partly what has exhausted me, besides Calvin being a handful of late. I closed my eyes and recalled the humorous and apt Trevor Noah video explaining the outrage over Trump's offensive words and implicit crimes against women which were caught on tape. I recounted a recent exchange I had about said offense. I wondered how it would be if this narcissist of a man—one so utterly lacking in good character and humilty—were to lead our nation, a man who regularly and publicly denigrates women and minorities, name-calls, incites violence, stiffs his contractors and employees, endorses torture and war crimes, threatens adversaries, cheats, lies, and brags about sexually assaulting women.

From here, it doesn't look as though he's going to make it to the Oval Office; It seems as though all of the people who were silent for so long while he threatened to deny refugees entry because of their religion, called Mexicans rapists, mocked a disabled reporter and threatened to sue others, initiated and, until recently, perpetuated the racist birther movement, and who refuses to renounce white supremacists, are finally disavowing him over his behavior towards women. This disavowal is ostensibly on behalf of their mothers, daughters, sisters and wives; I guess these same folks must not know—or care about—any Muslims, Mexicans, Blacks or disabled people.

As I embrace my son, the light beginning to peak from behind the blind, I think of the boys I see riding bikes down the street. I think of the young college students who pass by and smile on their way to class or practice. I think of the children who will one day run this country. And though—most regrettably—none of them will be my son Calvin, I hope it will be those who are kind to strangers, who welcome progress, who love, understand and value people who are different from themselves, who want our world to be inclusive, open and benevolent, rather than exclusive, shuttered and suspicious. I hope our future leaders will be folks who understand the importance and pride in helping others less fortunate, and who truly embody our most cherished notion: that all of us are created equal, even homebodies going nowhere, like me and my little pip, Calvin.

Photo by Michael Kolster

stuck indoors

After spending the long weekend alone with a sick boy, and having dodged the Big One, yesterday a stream of smaller, partial complex seizures plagued my son. In an effort to stop the spate, I gave him extra THCA cannabis oil, extra clobazam and extra Keppra. He didn't have any more after his second extra dose of THCA, and he slept okay, but I'm still not convinced he's out of the woods.

As for me, the woods are what I want to get into. I feel like a caged animal, pacing back and forth between rooms, watching passersby with an eye on pouncing on the great outdoors. An inordinate amount of time is spent this way for the mothers of kids like Calvin, who are also their caregivers, nurses, doctors, friends. It's at once very tedious and frightening, really. I never know when the next seizure is going to strike, or when the Big One might come, or if one of the seizures might take Calvin's life.

This morning, I kept him home from school an hour or two just to keep an eye on him in case he had more partial seizures. Despite a runny nose he seemed okay, so I dropped him off at school and kissed him goodbye. In the event he stays there all day, I'll have a few hours to myself to play in the garden and romp with Nellie in the crimson, gold and pumpkin colored woods.

the kid is all right

He proved me wrong. After suspecting he'd have a seizure this morning and the morning before, the kid is all right. He's snotty nosed, but other than that he's as good as we could expect. And daddy's finally home from a week in Verona, Italy overseeing the printing of his forthcoming book, Take Me To The River. We're getting a good soaking rain, the first in what feels like months. So all is well, at least for now, in this neck of the woods.

seizure's coming

fall is showing. leaves are turning. grass is dying. 

seizure's coming.

dusk is falling. nights are cooling. moon is waxing.

seizure's coming.

nose is running. meds are waning. boy's been dropping.

seizure's coming.

exhale, and quick.

Sometimes I think that the kid is going to drive me to jump off of a cliff. I can't say he is going to drive me to drink, because I already do that pretty much every night, though rarely, if ever, to excess. I'm not sure what is going on lately, but ever since he began school his stubbornness has taken a turn for the worse and he is dropping down—like a petulant two-year-old in the grocery store—whenever he doesn't want to go or do where or what we want him to. Someone said to me recently, "Well, I guess that is progress," which is correct, but it is sad to think that my twelve-year-old is just entering the terrible twos.

Sigh.

Add that frustration to the somewhat new emergence of what I think are tantrums and to the slight uptick in grand mal seizures (albeit there has been recent and unexplainable disappearance of obvious partial seizures) and you could peel me off of the ceiling on some days.

Just now, after Calvin went bat shit crazy in the tub after pooping a little bit in it, I was looking for something to throw against the wall besides my fist. I wanted to break something or scream my bloody head off, but instead, I just put it in my hands and kept a lid on it, which I'm not completely convinced is at all healthy.

Instead, I'll take Nellie out for a run. And maybe a shower would do me good. And I've got a drink and a bite with my lovely Sarah Diego planned for later tonight.

What I really should do for the moment, though, is exhale, and quick.

Photo by Michael Kolster

remembering mom

Dear mother. Home maker. Flack taker. Cookie baker. Great hugger. Home-ec flunker. Kindhearted. World traveler. Spanish speaker. Good natured. Perseverer. Sweet grandmother. Empathetic creature.
Patient, funny, loving mother.

I do so miss our time together.

Harriette May Shake, November 6, 1929 - October 3, 2015

unfair world

As I syringe the milky medicine into my son’s mouth, he shivers like a fledgling being fed. But these are tremors, remnants of the grand mal seizure that ripped me out of bed just before six a.m. At once, I understand why he had such a hard day yesterday—shrieking, finger snapping, grinding his teeth, banging his head, then waking at midnight crying, wanting me close, his knees tucked into his little bird chest, his arms around my neck.

In bed next to him, my mind wanders from one thing to another. My hand draped across Calvin’s lap, an image comes to me of little six-year-old Jacob Hall lying in his hospital bed, his face discolored and puffy after suffering a bullet in his thigh which drained too much blood from his head. In the photograph, his father, who from behind reminds me a little of Calvin's dad, leans in to kiss him one last time, his mother curls up next to him as her son breathes his final breath.

And then, in the darkness of Calvin's room, his legs propped on mine, my mind begins to reel.

I think of the children of Aleppo. I see them scavenge daily for scraps of food, scamper to find water, wither without their meds. I see them in photos—stone-dust covered—having perished in their mothers’ arms, innocent victims of the ceaseless shelling not far from southern Turkey where a lifetime ago I once happily tread. Then I imagine my own mother who raised six kids. She must have felt as trapped as I sometimes, having traveled solo to another continent for months when she was barely twenty. And yet, her children were perhaps her most cherished accomplishment or gift. Then I remember the brick ranch home I grew up in, the room in which my mother slept, the slouchy bed on which I sat and brushed her hair and in which I sometimes slept, my little aching legs slung over her ample hips. Through the purple japanese maple and cloud of cherry blossoms I can still imagine Seattle glinting in the sunset. I wonder how my mother felt, stuck in a kitchen, wrapped in an apron, unable to meet that gleaming horizon of possibility she once had. She lost two of her sons in any event, not to war or sickness, not even death, but perhaps to some kind of neglect. And then I think again of little Jacob Hall and his parents, of the senselessness of pain and hurt in this world of greedy man-wars over land, over money, over bodies, over oil, over gods, over medicine.

I turn to Calvin, my lips and breath brushing his forehead, and whisper something I’ve denied saying for years.

“Life is unfair,” this mother finally said.

Photo by Michael Kolster

crazy kid

crazy kid

howling mouth

not sure what is wrong

when days like this

go so far south

Photo by Michael Kolster