things i like and not so much

things i like:

my affectionate, soft, squishy kid. honesty. peanut butter and chocolate ice cream. clear blue autumn skies. compassion. kick-ass women. humility. the dappled light through trees. curiosity. strength in numbers. truth. shiny beetles. popcorn at movies. charity. chef husband. forthrightness. writing at my desk. transparency. sun-drenched windows. kindness. gray hair. seizure-free days. forgiveness. hours of pouring rain. empathy. the aroma of newly spread mulch. equality. friends. decency. frank zappa. mercy. new adventures. bodies of water. love. the innocence of children. courage. strong coffee. humor. justice. trees.

not so much:

condescension. flying squirrels nesting in the eaves. duplicity. achy joints. light pollution. greed. sleepless nights. blame. belligerence. my child's seizures. liars. television. winter coming. anxiousness about the safety of my son. bigotry. sloth. the loss of what I hoped parenthood would bring. misogyny. despair engendered by the notion of my son's bleak future. disingenuousness. defensiveness. dog shit stuck in my treads. phonies. unaccountability. bombast. headaches. green peppers. mansplaining. entitlement. cowards. threats. conceit.

Photo by Michael Kolster

kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young, vivacious manager, wearing a peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large bowls filled with rum and fruit juice.

As the night wore on, and a pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the chick can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has. 

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. And after alerting the nurse the neurologist changed the dose without apology or recognition of error.

My friend then listened to me describe the painful, bloody emergency intubation that my two-year-old Calvin had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin. It was carried out amidst Calvin's thrashing and terrified shrieks of pain. I told my friend about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which at the time I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who can’t really walk completely by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength. These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

Original version published 09.12.11

Calvin, 2006

rough patch

Throughout the film Tully, watching her I saw myself in a thick, frumpy Charlize Theron screaming at her unhinged kids from behind the wheel of a car. I saw a slice of my life in nearly every one of her scenes—moaning in pain from engorged breasts, wincing at cracked nipples, slouching hopeless in a robe with a frowning mouth and sleep-deprived eyes. I watched her chop food into bite-sized bits, neglect housework for days, advocate for her "quirky" child at an ill-equipped school, field scowls from disapproving strangers, surrender what had been an exciting life to be a devotee of family and home.

In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.

When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.

Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.

So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.

Photo by Michael Kolster

humanity of kinds

Humanity is black and brown and white and infinite, glorious other tones. It is preemie and teen, middle-aged and elderly. Humanity is supple, spare, furrowed, hideous, wiry, gorgeous and fat. It is long-legged and stout, walks hunched over and crawls on its knees. It limps with crippled arms drawn to its chest, and glides along exquisitely. It is sweet and reeking, chiseled and smooth, ratty and chic, and thankfully never perfect. Humanity bleeds.

Humanity is iron-clad abs and double chins, muffin tops, beer bellies, rotten teeth, gorgeous curves, saggy boobs, hard arms, unruly curls, waxed bald heads, botox lips and tattoos. It is blind and deaf, blond and brunette, ebony and ashen, gay and straight, female and male and everything in-between.

Humanity is artist, driver, janitor, billionaire, chef. It is designer, clerk, nanny, vagrant, vet. Humanity is bumbling fool and genius. Humanity is a spray-tanned, petulant, petty, small-minded, selfish, immoral wreck. It is an enigmatic child, speechless and seizing, careening through each fragile day.

Humanity is mother, father, brother, sister, child, criminal, saint. Humanity loves who it loves, shares its woes and hides inside. Humanity seizes and shits, suffers angst and despair. Humanity is ignorant and bigoted, embracing, progressive and wise. Humanity sticks a needle in its arm and a finger down the back of its throat. Its flesh and bones are riddled with disease. It is gluttonous and ravenous, skin sometimes stretched over starving bones. It wars, invades, rapes, beats, murders, imprisons and steals. It stumbles, bruises, breaks, grieves. It too often turns on itself.

Humanity—of another kind—is compassion. It is charity, love, empathy, openness, benevolence and gratitude. It is selfless, magnanimous, forgiving and generous. It shares freely of itself, expecting nothing in return. Humanity is not excess nor greed, nor is it oppressive. Humanity helps its brother and sister. It is not afraid of other. Its kindness and understanding have no borders. It reaches deep, crosses divides, walks in the shoes of others, empathizes with the little guy.

psychotic child

I stood in Woody's driveway and wept. As Woody hugged me and brushed away my tears, Calvin banged and bit the white vinyl siding of the garage where there is a permanent stain from him doing so for years.

My son was experiencing a repeat of the previous day's deranged behavior, a harbinger of the next morning's grand mal seizure. Typically, a grand mal acts as a kind of reset for his lunacy, but this time his fidgeting and "ooh-oohing" and fingering lingered and worsened as the day went on until he was utterly psychotic and, as a result, perhaps so was I.

Later, as I sat on the edge of my bed watching Calvin stand facing out our bedroom window, his jaw clenched, arms up, fingers wildly snapping inches from his face, I wondered how I'd take it anymore. Seizures are easier than this, I thought. This psychotic child of ours is so unreachable—seemingly inhuman—in these agitated moments, which sometimes last for hours and have been reliably happening with frequency for years. Suddenly it occurred to me, as it has before, that perhaps Calvin was suffering from the effects of too much THC. He'd gotten a bit extra cannabis oil after the seizure to prevent subsequent ones, and it worked. But both of the cannabis oils Calvin takes—my homemade THCA oil (THCA is non-psychoactive) and the Palmetto Harmony CBD oil (also non-psychoactive)—have small, residual amounts of THC, which is psychoactive; It is impossible to make whole-plant oils that don't have traces of THC. I should note here that all pharmaceutical drugs are psychoactive.

My hunch about THC and my hopes for CBD led me to the decision to forgo Calvin's 3:00 p.m. dose of THCA, even though I credit the advent of that dose with virtually eliminating Calvin's early evening grand mals four years ago. At this juncture I feel it necessary to give a secular amen for THCA, which no doubt helped my son get off of his benzodiazepine, clobazam, aka Onfi.

When I was able to grab my computer, I looked up THC and its effect on children. One of the first articles I found was this one, which I scanned from top to bottom. What stood out to me was the use of the words, excessive and purposeless motor activity of the extremities (hyperkinesis) to describe one of the side effects of THC toxicity in children. Though psychomotor hyperactivity is also a side effect of benzodiazepine use and their withdrawal, I wondered if Calvin might be exhibiting this behavior because of the extra THC. Having read the article twice, then used Woody, Michael and my friend Lauren as sounding boards, I decided to also eliminate Calvin's morning dose of THCA, replacing it with an equal amount of CBD in milligrams (the CBD oil has about half as much THC as my THCA oil).

The next day Calvin was cool as a cucumber and fell asleep as soon as his head hit the pillow. Today he is slightly agitated, though I'm fairly certain it's because he is constipated. I'll spare you the details, but suffice to say, we're working on that.

Eventually, I'd like to eliminate the THCA if we are lucky enough to see the Palmetto Harmony CBD do a decent job of decreasing his seizures; so far so good. Already, I feel totally liberated not having to give Calvin his afternoon dose, having to remember to draw it up and schedule activities around its administration. If we can eliminate it, I won't have to carve out two hours to to drive and get the herb, won't have to get a liquor license to order the organic cane alcohol I use to extract the cannabinoids, won't have to pay $125 for one gallon of the alcohol to be shipped from Oregon, won't have to spend a week making the oil, won't have to dose it, won't have to think about it. Best of all, if we can get Calvin off of the THCA I'll feel more confident taking Calvin on a plane with just his CBD, which is less of a risk, legally speaking. Perhaps we can travel again; it's been a part of forever since we flew anywhere as a family.

So cross your fingers and knock on wood ... again. And though praying is not my thing, if it's yours, then feel free to pray we can escape this intolerable psychotic cycle we've been stuck in for years.

Antiepileptic drug agitation, 2011.

changeling

There goes my kid again—manic, shrieking, flailing, tossing his head back and forth, dropping down, drooling, rashy, agitated, spacey, fingering like mad, unrecognizable to me in so many ways. In my darkest, rawest moments of cumulative sleep deprivation, frustration, despair and fatigue—and when Calvin behaves like this—I sometimes think about what a freak he can be, especially under the cloud of a looming seizure.

Before dawn, my hand resting on his pounding heart, my little imp drifts back to sleep after his fit. My mind wanders. I think about our dear friend who took his life late last month; I wonder what misery plagued him. I remember the videos of Calvin in which he was calm and smiling, sitting quietly paging through his favorite board book, walking with his arms at his sides instead of circling wildly above his head. I revisit Michael's essay about changelings—children who, in medieval lore, were considered freaks having been born with mysterious diseases, cognitive or physical defects. The changelings' curious and abhorrent afflictions were blamed on being the offspring of faeries or trolls who were switched for healthy children at birth. Many of these changelings, too burdensome for their families to care for, perished in rivers.

Our boy Calvin, like the changeling, is certainly an enigma. We'll never know who or what or how he might have been had he been born with a healthy brain, had he never developed epilepsy, had he never taken ten antiepileptic medications, plus drugs for constipation, drugs for reflux, drugs for sleep, drugs for his gut. All I know is that he, a pubescent teen, is in many ways stuck somewhere between infancy and toddlerhood. I see his peers ride past on their bikes; it won't be long before they'll be driving. They play in bands, compete in sports, act in plays, learn foreign languages, read novels, write papers, consider politics and explore the stars. If they haven't already, they will hold hands and kiss sweethearts. In just a few years, they will be awarded their diplomas, will go off to college, perhaps travel the world, take care of themselves. Our changeling will remain here with us doing the same infantile, rote things he's been doing since he was two ... and likely seizing. And though it's painful every time I try to picture Calvin doing amazing yet ordinary things—even having a simple conversation or walking in the woods with me—I can't stop myself from imagining.

As Calvin recovered from this morning's grand mal, Michael shared with me a presentation he'll be giving today at the college. One of the first slides includes a quote from Diane Arbus who was photographing changelings in the mid 1960s before she took her own life:

There's a quality of legend about freaks. Like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they'll have a traumatic experience. Freaks were born with their trauma. They've already passed their test in life. They're aristocrats.

As I mused on her words and studied her photos of children and adults with serious afflictions, I saw in them—in their remarkable faces, expressions and peculiar postures—their utter humanity. I regard my boy and see the same thing in him. He's my little changeling, and somewhere inside his shell of tension, anguish and pain, is a boy who emerges as the best of any of us—warm, sweet, unassuming, loving, uncritical, faultless, pure and unmistakably human.

Photos by Michael Kolster

a good day at the fair

Sunday was a very good day. Though Michael carried him some, Calvin did not use the stroller while at the fair. He was happy, smiling, hugging a lot and very compliant walking. Best of all, though I found his excellent behavior somewhat suspect, he did not have a seizure that night or the next morning.

Trying my best to appreciate and savor Calvin's good days rather than focusing on the bad ones; it takes some practice.

click any photo to enlarge.

stunted by drugs

On Calvin's first day of eighth grade, his new teacher asked me what short-term and long-term goals I have for Calvin. I rattled off a list from the top of my head:

learn to eat with a spoon (he had begun to when he was two). be (somewhat) potty trained. learn to nod his head for "no" and make a sound and/or pat his thigh for "yes." stand and wait (something Calvin had nearly mastered when his ed tech Mary was his main aide.) sit and watch a video. walk with his arms down at his sides instead of circling them around above his head and in front of his face. stop putting his fingers in his and other people's mouths.

With what I believe were good intentions, his teacher underscored how much kids like Calvin, once they are old enough, can benefit from working a job. I explained to him how, for eight years, I have helped Calvin practice—almost daily—pushing the doorbell at our neighbor Woody's house. The button itself is textured and ivory, its mount is black; it's easy to see. In nearly a decade, Calvin has been able to manage the task little more than a dozen times without my help, most of those times in the past year.

"Calvin is not going to be able to hold a job," I told his teacher, trying to conceal my despair at the notion. I realized then, with the greatest clarity, that the boy we have now is the boy he was twelve years ago and the boy he will likely always be—one whose development, hindered by the lack of white matter in his brain, was further stunted with the advent of seizures and the initiation of anti epileptic drugs at the age of two.

This morning I came across a video I'd posted on You Tube years ago. A kind stranger had commented, "He is adorable." The video, taken in 2010 just before Calvin's sixth birthday and which is in ways excruciating, shows him getting into a stand from a crawling position. Partway through, I mention how he is, "almost as good as he was two years ago," when he was not quite four years old. I also mention his fatigue from having just taken his morning dose of benzodiazepine, clobazam, which years later we spent four years weaning, eventually coming off of it last February.

For some people, epilepsy drugs have a way of stealing one's life. The loss of hard-earned skills as the result of mind-numbing drugs is painful. The list of failed pharmaceutical medications is endless. The heinous side effects from drugs that don't completely control—and sometimes exacerbate—seizures is harrowing. We end up with children we don't recognize and aren't sure we can ever know, with children who might have turned out completely different if not for the relentless brain- and body-pummeling of seizures and drugs.

Having said that, our son is no less adorable or affectionate. It comes as some solace that Calvin doesn't know what he is missing in the world. I cannot imagine he wants for anything but car rides (he didn't used to) and hugs and kisses, breakfast sausage and blueberries, spinning in his jumper and banging the shutters, biting plastic and wood and cloth, getting tickles from me and his dad, and walking down the sidewalk to ring Woody's doorbell, only to sit in Woody's kitchen rocker briefly enough to eat a piece of chocolate before getting up to leave.

             

the silver backs of leaves

gales reveal the silver backs of leaves. blue plastic squares are nailed to trees. i don't always follow. moss grows in banks and crooks of crossed roots resembling bones and tendons. others arise as tiny pine forests. behind a swaying canopy, the noontime sky is full of chalk and hidden stars. underfoot, the ground is soft and brown, sheathed in twigs and needles. lichen smothers trunks and rocks. tucked into a sunlit dell, a large stump resembles someone. my heart jumps.

i think of him every time i wake. wonder what tormented him into ending it. my own son seizes before dawn's break. i kiss him in his fit. cradle him as he shivers and quakes. he is alive, but reeling. i wonder what it's going to take.

drought makes everything thirsty. green leaves curl up copper. bark hardens. dust flies in our face, stinging whites and irises, blurring perfect vision. parched skin tents and wrinkles. grass crisps into straw. supple petals wilt and leather. puddles become mud. moist lips resemble deserts. limbs brittle. souls wither.

august update

We've had a pretty shitty week. A dear friend took his life. Calvin's kick-ass nurse gave her notice due to stresses with the agency. Because of Calvin's grand mal, yesterday we had to cancel a rare mini-vacation (it has been years and years since we've spent a night away from home) to join visiting friends at a lakeside cabin in Blue Hill. Calvin has had seizures—all but one of them partial complex seizures—on six of the past eight days, including three this morning.

So as I sit on Calvin's changing table as he rests in his bed, rather than romping in the garden with the sun on my shoulders and the wind in my hair, I'll give you a seizure update, and at least I can say I've been productive.

Between July and August, Calvin went forty days without any grand mal seizures after having begun giving him Palmetto Harmony CBD oil in late June. This month, Calvin went thirteen days between grand mals, and while not forty, it is still a good run considering a few months ago he had been having grand mals every couple to several days and, on two separate occasions, three in fifteen hours.

Otherwise notable is his recent increase in monthly complex partial seizures. We had seen them diminish, going from the low teens down to two or three soon after discontinuing the benzodiazepine Onfi in late February, and also after stopping a previously-used CBD oil.

On the face of things, it appears we may have traded grand mals for partial complex seizures: in June, Calvin had six grand mals and three partial complex seizures; in July he had three grand mals and four partials; in August he had two grand mals and twelve partials. What has remained the same since February is the number of days in any given month that he has seizures: six to eight.

The recent uptick in complex partial seizures leaves me in a quandary. I am wondering if Calvin is having more of them because he is taking too much CBD (granted, he is only taking 30 mgs/day which is not that much for a boy who weighs less than sixty pounds) or if it is because we reduced his morning and bedtime THCA oil. In making simultaneous changes, I muddied the waters, and as a result it isn't clear what I should do next.

While admitting that I hate his complex partial seizures nearly as much as his grand mals because of their stealthiness and their propensity to come in clusters sometimes leading to grand mals, I was somewhat comforted when reading recently that it is the frequency of grand mals that is the primary risk factor of succumbing to SUDEP: Sudden Unexpected Death in Epilepsy. A new study finds SUDEP occurring in about one in every 1000 people with epilepsy.

Since I don't know what is causing the recent uptick in partial seizures, I think it best to sit tight for a few days or more, keeping Calvin's current doses where they are. Though challenging, I'll try not to act too hastily, try listening to my gut. Maybe I'll try musing on the birds outside my window, the trees swaying in the breeze, the sun on my back if I can get outside, the butterflies, the stars.

Photo by Michael Kolster