points of light

There's some consolation to the fading and dropping of rhododendron blossoms which adorned the garden with magnificent splashes of color in May and June. Just when the landscape has reverted to a dark sea of emerald and jade, the fleshy faces of peonies and roses become points of light, especially on gray rainy days when the cloud cover makes everything glow.

Calvin is ending June having had only three grand mals, though sadly his number of partial seizures spiked to sixteen. I find myself conflicted, feeling gratitude for his relatively low number of grand mals these past two months, and worry over his increase in partials. To further complicate things, there is really no way of knowing if the increase in partial seizures is due to puberty, the reduction in his benzodiazepine or some other hidden mechanism. How to better control them is another dilemma; the intermittent addition of THC rescue med has seemed to help thwart his grand mals to some extent and keep large clusters from developing, though it is difficult to know for sure.

But like points of light in the otherwise dark landscape of living with a child who has chronic epilepsy, I remembered a conversation Michael and I had over four years ago. At that time, Calvin was having fewer seizures yet suffering incredibly bad behavioral and sleep problems due to the high doses of three anti epileptic pharmaceutical drugs. His bouts of mania—prolonged and occurring often—were so emotionally upsetting that I was in tears nearly every day wondering how I was going to make it through to the next without completely breaking down. In other words, Calvin's hysteria caused me far more angst than did his seizures. I hardly recognized my child.

In that conversation, Michael and I decided it might be better, perhaps even for Calvin, if he suffered as many as one seizure a day if it meant that he could be more calm and content and enjoy an improved quality of life; that's how bad he was. A few months later, Calvin was completely off of Banzel, then we started him on a homemade THCA oil. Soon after, we began weaning him from his absurdly high dose of benzodiazepine, clobazam, aka Onfi, which my gut and my research into the drug told me was causing his lunacy, restlessness and insomnia. The points of light I am referring to are the bright moments, amid a dark terrain of increased partial seizures, of a much quieter, calmer child. His shrieking is now more the exception instead of the rule. He rarely—as compared with before—flails, and almost never becomes the raving, grimacing, howling monster we used to know. His awareness of the world, and his interaction with it, seems to be improving. His countenance is like a peony, a flower I'd describe as staid and supple more so than jolly, but content to blossom in sun and rain and shade.

love letter #123

Love Letter #123, Drawing by Peter Bruun

bat shit crazy

For an hour and a half straddling midnight—Michael several hours north—my son sat up in his bed and banged his head on its padded side every few minutes. When he did, wearily and perturbed, I got myself up (perhaps as many as two dozen times) to lay him back down and cover him up. Each time I fell back in bed, Nellie came over so that I'd pat her on the head. Exasperated, I finally checked and changed Calvin's diaper, took his temp which was unusually low considering how warm his skin felt, then crawled in with him.

The past three days Calvin has been bat shit crazy much of the time—shrieking and hollering, flailing, manic in the bath, ridiculously restless, crying at times for no apparent reason. As I write this I understand that I, too, have been a lunatic of sorts—hollering and shrieking at times in response to his maddening behavior, his agitation, his immense stubbornness to do what or go where I want him to. His obstinance makes it difficult and sometimes impossible to pass a half-block radius when on foot. He has a mini tantrum every time I try to take him to the health food store or to the donut shop for a cruller and a cup a joe, even though he's been to these places several times before.

I wonder if, when he is free of his benzodiazepine, he'll evolve to a place of calm and compliancy. I wish I knew what impels him to drop down. Is he fatigued? Do his legs or knees or feet hurt? Is he dizzy? Weak? Confused? Anxious? I really have no idea.

Three years ago I wrote a post called dear dr. rx. In it I describe my frustration with neurologists' apparent cavalier way of prescribing benzodiazepines. Gradually, the more I read about adults' experience of the terrors of benzodiazepines and their withdrawal, the more I'm convinced of physicians' ignorance of their side effects, dangers, and proper withdrawal, and the more my frustration grows into outrage. We've been weaning Calvin's benzodiazepine clobazam, aka Onfi—which was prescribed, in part, to help him get off of another benzodiazepine, clonazepam, aka Klonopin—for over three years; we've got nine or more months to go until he's rid of it. I've little doubt benzos and their withdrawal are what have stunted Calvin's learning and cause his mood swings, his malaise and misery. I've no idea who my kid would be without having taken them for nine of his thirteen most formative years. Suffice to say I believe that very child has been stolen from me, and I'll never get to know him or see what he might have become.

Having said that, I have heard benzos work for some without causing habituation, and I am aware that they might be one of few options for some of the most serious epilepsy cases.

This morning, after having given Calvin a dose of THC around midnight when he was so restless, he woke to a grand mal at six. I've little doubt that if I'd repeated a dose of THC around two or three he may not have had the seizure at all. He's slowly getting back to baseline as the morning wanes. Michael is on his way home. Calvin has only 1.5 mgs of clobazam to rid himself of. The sun is shining. The peonies are fragrant and in full bloom. Friends are stopping in to bring me groceries, sit and sip coffee with me and walk the dog. The kid is calm and the bat shit crazies in the seizure's wake will hopefully take a hiatus for a while.

Photo by Michael Kolster

good fortune

Though I'm known to kvetch about this and that, I try to be mindful of my fortunes: dear friends, an amazing community, a loving husband, cook and provider, a cozy home, a sweet kid, and the ability to celebrate often without having to worry about where I'm going to sleep at night or where my next meal will come from. Aside from Calvin's poor health and disabilities, his seizures, the treatments and their side effects, and his active benzodiazepine withdrawal, one could characterize my other concerns as first-world problems.

So, perhaps the passing of the summer solstice, which I spent at my friend Lauren's house wearing a shared garland, drinking mojitos and eating popcorn aside a crackling fire, seeing old friends and meeting new ones, can be for me a kind of reboot. Perhaps I can emerge from a place of slight guardedness and cynicism to one more welcoming of my changing surroundings, which is not to say that I'll surrender my passions, political or otherwise.

And, as I remind myself to be grateful, I'm cognizant that Calvin has had only two grand mals thus far in June, which is notable considering he had as few in May—a record low since before starting cannabis and weaning his benzodiazepine over three years ago. In return for that gift of sorts, I knock on wood, clasp my hands and bow my head in recognition of my good fortune.

pure serenity

Again, four-thirty came too early on Sunday, especially having not fallen into bed until midnight. I had only half expected Calvin's grand mal, and though I was disappointed it came just eight days after the last, I was grateful that it waited until nearly dawn. As he seized, Michael and I lifted the netting covering his bed, unlatched and lowered its safety panel then protected his head from banging on the wooden lip of the bed. I grabbed the vial of lavender oil and rubbed it on the bottoms of Calvin's feet, then held it under his nose so that he could get a good whiff of linalool, a terpene thought to be effective in thwarting seizures. When it was over, I gave him his morning dose of benzodiazepine early, then crawled in with him as he drifted in and out of sleep for the next hour.

Lying in bed next to him, our windows open to the cool, humid air, I listened to the birds awakening. This time I think I heard a thrush, a catbird and a pileated woodpecker. Other than the birds, and Calvin's shallow breathing, my world was silent. The birdsongs have a strange way of echoing (or is it dampening?) in the morning fog, which I imagined lurking across the meadow that abuts our back yard. Similar to early evening, dawn is a gloriously serene time of day in the garden. Sometimes it is so quiet, especially in the wake of a heavy rain, that I can hear the river rushing over the falls a mile or more away. In the silence, I like to imagine the wing-flutter of butterflies, bees and dragonflies, or the sound of moist earth giving way to spears and sprouts and churning worms in the organic garden in the field behind our home.

The regrettable situation we find ourselves in—the seizures Calvin has, the worry over impending ones, clusters of them and trips to the ER, the shrieking he does in the days leading up to a grand mal, the relentless years of sleepless nights, the grief over losing what we thought parenthood might promise, the despair harbored knowing we will never be grandparents, the tension felt over every injury or close call, the resentment of folks who don't seem to or can't understand, the feeling of being imprisoned in time, space and circumstance—causes me, among other things, sometimes to unwittingly clench my teeth at night. I wake these days with an aching jaw, having pressed so hard as if unable to let go, like a hound dog with a bloody bone.

Later, like on most mornings before the neighborhood is awake and passersby in the back field begin to linger, come and go, I slipped into my green rubber boots and took my coffee outside. I strolled around the garden in the same pattern that I make with Calvin, over dewy grass and moss and stone, observing every shrub, bud and blossom, smelling fragrant ones, pulling weeds and errant clover. I gazed beyond our yard to the idyllic field which the college now owns, with its quaint antique schoolhouse, feeling immense gratitude for its openness and pure serenity. I hope with all my heart that promises are kept and that it can remain that way; it is so beautiful and calm in its simplicity. Sometimes it feels as though my secret garden is the only quiet space I know, the only place where my mind can be at ease, my body relaxed, my heart calm.

love letter #112

Love Letter #112 — Christy to Scott, Drawing by Peter Bruun

love letter #109

Love Letter #109 — Christy to Calvin, Drawing by Peter Bruun

seven days running

I hope having partial seizures every morning is not going to be Calvin's—our—new normal. Seven days running now. I can't recall that ever happening since Calvin was first diagnosed with epilepsy when he was two years old. Somehow, though, the kid takes a licking and keeps on ticking. Extraordinary child.

Calvin two years ago looking much the same as he has this past week.

birdie

In this part of the country as we near the summer solstice, it starts getting light as early as four in the morning. With the windows open and my eyes closed, I can hear the birds begin their glorious racket. At times they sound far off, a distant echo, and at others I can almost guess in which nearby tree they're perched.

Calvin has had seizures five days in a row, though no more than one or two a day and only one grand mal. As a result I've been awake at least two nights for hours before the dawn. The fact that his seizures were provoked by a virus and a low-grade fever (and, perhaps, the full moon as it hovered overhead just as he had his grand mal) is some consolation to me, as opposed to being purely spontaneous. It seems as though the homemade THC rescue med is working well to stop his partial seizures while thwarting them for the remainder of the day. Sadly, it hasn't always prevented his grand mals.

Today, it is nearly ninety degrees outside, just slightly cooler than yesterday, so we are both sick indoors trying to stay cool and get well. I sit on Calvin's changing table as he rests and naps, bites his toes and plays with his toys in his nest of a bed. From an upstairs window I see what I think is a baby finch splashing in one of our birdbaths, flapping its wings and ruffling its feathers. I think of how much Calvin reminds me of a little bird: his small frame and quick heartbeat, the way he opens his mouth for me to feed him and, if he is very hungry, the way he bangs the table or claps his hands for more. The birdlike chirps and coos he often makes when he's most content remind me of some sort of feathered friend, as well as how he splashes in the bath, just like that finch.

And, like a baby birdie does with its mother, when I crawl into bed with him, he curls up under my wing into a ball smaller than you might imagine. As he rests his head on my chest, I can feel his little heart a-flutter.

snafu

The acronym stands for situation normal: all fucked up, and it is an apt way to describe life with Calvin, my thirteen-year-old severely disabled, legally blind, non-verbal, incontinent, autistic boy who can't do much of anything by himself and who suffers from medically refractory epilepsy, which is to say that despite pumping him with loads of pharmaceutical drugs, he still endures seizures of various kinds at various times and with varying intensity. Oh, and he is also coping with a ridiculously protracted and brutal benzodiazepine withdrawal and its heinous side effects, which compounds any misery he already bears.

Thankfully, however, cannabis—three kinds of which we use to thwart those seizures—has seemed to help: a homemade THCA oil, a CBD oil, plus a homemade THC rescue tincture.

Today is day ten since Calvin's last grand mal seizure, which began as a partial complex seizure and evolved into a full-on convulsive tonic-clonic. Yesterday and today he has suffered similar complex partial seizures lasting upwards of three or four minutes during which he breathes so shallowly it appears as if he has stopped breathing altogether, which is common though still unsettling. But both seizures stopped within about thirty seconds of giving him a squirt of THC tincture inside his bottom lip and rubbing it into his gums.

This is a good time to mention that I'm ever grateful for Calvin's teacher and ed techs who know Calvin well enough to contact me when he doesn't seem well. They've made some very good calls and have saved Calvin from having any serious seizures while at school. So, too, are we lucky to have a nurse who rarely, if ever, misses work, who loves Calvin and with whom I can leave him when I must go out to do errands or walk the dog or when I want to garden or look in on Woody.

And I would be very remiss to neglect mentioning what an awesome husband I have who is easy on the eyes and does the grocery shopping on days like today and who cooks dinner every night—literally—and who affords me the ability to stay at home, because I'd never be able to hold down a job or a career out of the home even if I wanted to, what with a son who has missed at least seven weeks of school this year.

But even for all of the wonderful things we have at our fingertips including our cozy abode, our kind, loving and generous friends, Michael's steady and absurdly amazing job in this beautiful state of Maine, our situation—our normal—is still seriously fucked up.

broken flowers

This weekend, I spent time with a friend while she grieved the small and the not-so-small of life—the personal, the political, the theoretical dreads and disappointments we all face as human beings. While weeping, she apologized, describing how she thought her despair was somehow unbecoming. I told her, no, that mourning is one of life's beautiful expressions. Perhaps it was because of the time I'd spent with flowers that morning—the vibrant pinkish rhododendron blossoms fading to antique white with spoiling ruffled golden edges, the tulips held in a glass vase, their stems arching and bowing, their petals relaxed and splayed revealing delicate stamen before surrendering them to the earth, withered and crepey—that made me think that our response to life's tragedies, like a flower's gorgeous death, can be beautiful, too.

Often, I surrender to my deepest sorrow at times unexpected, like when I closed and latched the French doors this afternoon before I realized Calvin's pinkie finger was caught in the hinge. He was silent at first, in his excruciation, then wailed and writhed in so much pain I could not console him. When he finally calmed, I wept, sorry for having hurt him, sorry for all the pain he must suffer on a daily basis—brain, guts, bones—which we can't control, sorry for the gorgeous mess that is our life together. We are like broken flowers, exquisite, flawed, weeping.

As I finished this up, Michael and I heard a tremendous crack and felt the ground shake with a thump. We peered out trying to identify the source. Next door, a gigantic limb from a one-hundred-year-old maple had fallen, taking down power lines with it, having missed grazing our house by twenty feet, and now leaning into a neighboring spruce. The sound of splitting bark and flesh is like no other. The sensation of thousands of pounds of bough pounding earth felt in my heart like the bass at a rave. It is beautiful; it is awful. It is all the glorious stuff of life.