sweet spots (cbd and others)

For awhile, I've wondered why the all-time most-read post on my blog is one called day five hundred. To my surprise, folks continue to find it amid the 1,843 posts I've published since starting my blog over eight years ago. In pondering the question, I reread the post and came to the conclusion that readers, perhaps mislead by its title, were and are interested in knowing how my son, Calvin, went five-hundred days without a seizure. In actuality, when I wrote the post Calvin had been free only from conscious-onset daytime grand mals. In other words, he was not seizure-free because he was still having them at night.

In revisiting the two-year-old post, I thought it prudent to give readers an update. Calvin continues to be virtually free from daytime grand mal seizures. I say "virtually," because in November, he had some sort of event at school which the ed techs were unsure of. When asked, they described attributes of both grand mal and partial complex seizures, thus confounding me. Suffice to say, nearly all Calvin's grand mal seizures emerge at night, most often in the wee hours of sleep.

Of note now is the fact that Calvin is having the same or fewer seizures as compared with recent years despite, a) being in the thralls of puberty, b) having finally weaned the benzodiazepine (Onfi, aka clobazam) he was on for years, c) taking less Keppra, and d) taking half the amount of my homemade THCA cannabis oil that I began giving him five years ago. What's different is the addition of Palmetto Harmony CBD oil I began giving him last June. At sixty pounds, Calvin's daily intake of the oil is 75 milligrams roughly divided into two doses. At this dose we have not seen any negative side effects attributable to CBD. In fact, he is sleeping a bit better, seems less agitated, is having far fewer partial complex seizures and very slightly fewer grand mals. Of late, his days between seizures have been mostly calm and filled with smiles and moments sitting on our laps sopping up hugs and kisses. When I've given him extra CBD in the wake of partial seizures, he hasn't gone on to have more, so I can be fairly sure the Palmetto Harmony CBD oil is not a seizure trigger for him.

Compared with other children his weight, Calvin may be taking more CBD, but he has a history of requiring high doses of medications to achieve any semblance of efficacy. I keep in my mind—and heart—Charlotte Figi, who is Calvin's size and whose mother Paige told me takes nearly three times the amount of CBD Calvin is currently taking. I also consider the children who are taking way more CBD—as much as 1,300 mgs per day—in the form of the new plant-based pharmaceutical, Epidiolex.

My hope for the new year is that we will find a CBD sweet spot which limits or eliminates Calvin's seizures without any adverse side effects—in essence, I hope we find a silver CBD bullet in this golden potion. If we do, I'd love to try reducing Calvin's THCA and Keppra.

In-between seizure days, I am finding time to get out of the house to enjoy my own sweet spots—rivers, beaches, forests, seas—which keep me healthy and mostly sane. I've been afforded such luxury because, after a three-month hiatus, Calvin's kick-ass nurse, Rita, recently came back to work for us via a better and more ethical agency than the one she left. Rita job-shares her part-time gig with a second nurse, Sue, who is exhibiting similar kick-ass characteristics. In addition, we have Mary, Calvin's former ed tech, who also provides us respite, and who has been kicking major ass for years as Calvin's aide. All three women are a joy to have in the sweet spot we call home.

So, in 2019, I'll continue my search for sweet spots, and I'll let you know if and when I unearth them.

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

nostalgic christmas

Alone in the house with Calvin and Nellie while Michael spends a couple of hours at the studio. Silent Night is playing on the radio. For the first time in years I feel an emptiness, its source the absence of my mom and dad. I long ago lost my religion, but I sometimes still enjoy a few holiday traditions I did with them as a kid.

While feeding Calvin grapes I remember Christmases of my childhood, recall Dad goofing off in his new orange track suit, and making funny faces while carving the bird. Even the feeling of disappointment when certain gifts given to me weren't exactly how or what I'd hoped feels nostalgic. I wish Mom and Dad were still around. Wish they'd had a chance to know Calvin. Perhaps Dad would bounce him on his knees until he giggled uncontrollably. Maybe Mom would trap Calvin in her larger-than-life hugs, a flour-dusted apron tied around her ample waist. We'd sit around the table making jokes, passing dinner rolls and gravy. I've little doubt that Dad and Michael would've been famous friends, working in the kitchen, cleaning up the mess together. Michael's family eggnog would have been a big hit with Mom and Dad, though especially Dad who had a wicked love of sweets.

But they're both gone, Dad for some twenty-two years and Mom for a handful. Instead, I've got memories of them seared into my head—the smell of hot apple cider and of breakfast sausages and French toast wafting through the old brick ranch house. Holiday music coming from the radio atop the fridge. The huge tree all lit up and tinseled. The warmth of Mom's smile and embrace. The relentless razzing Dad gave each of us. How nice to see him when he wasn't working, though Mom, who was a homemaker for eight, never really seemed to quit.

Yes, these carols so familiar spark in me a visceral poignancy, and I'm overcome with a loneliness I know isn't uncommon during the holidays. But Michael will soon be home. Then friends will be arriving after sundown. Eggnog with bourbon and rum will be drunk. Savory meats will be carved and eaten. Wine will flow. Cake will be served with ice cream. Mom and Dad won't be at the table, but my own family will be, and the house will be full of love and laughter. And Calvin, whose days are virtual carbon copies of each other, won't know he's missing anything.

Mom and Dad, Harriette and Don

a week in photos: saturday

a week in photos: friday

a week in photos: thursday

a week in photos: wednesday

a week in photos: tuesday

a week in photos: monday

in the sparkling stars

When thirty-five degrees feels balmy, it's a sign one might live in the northern hinterlands, where at five o'clock a long-set sun lights up a mackerel horizon.

On our way to the fields, Nellie and I stop by Woody's just to see if he's all right. I ring the bell and through the window see his cat Norton scamper by. Once inside, I give Woody a hug and on its heels my usual grilling: What's for dinner? Any news to report? Are you out of dessert? Does your rib still hurt? A few weeks ago Woody, who turned eighty-six last July, stood up too fast, became dizzy, fell into a desk and fractured a rib. He's doing okay now. I thank the stars for Woody.

After a short visit, Nellie and I continue to the fields where most of the snow has melted. Off leash, she races around nose to the ground, smelling scraps of student-athletes' food now thawed and rotting in the spongy sod. There's a hint of pine in the air, plus wafts of smoke from neighbors' chimneys settling over us like fog. Strings of colored lights have begun popping up on neighbors' trees and shrubs. I stand in the center of the field looking up. Above us, only a smattering of stars peek out between sparse clouds. As they twinkle, I think of Lily and Ronan and Cyndimae and Gordon and Arnd and so many others who have left this world far too young. Now, I see them in the sparkling stars. On our saunter home, I glimpse another octogenarian friend, Nan, through a gap in the fence around her house. Her face is aglow from what I think is a laptop, and I wonder if she feels lonely without her husband Bob there to take care of; he now lives in a nursing home. I miss greeting him in his driveway on nights like this, smelling his sweet pipe smoke as I approached. He'd always say, "Nan doesn't let me smoke inside anymore," then he'd chuckle as he took a puff.

Almost home, a crescent moon appears tangled in the canopy of a scraggly oak. I'm thankful the moon isn't full, since those seem to trigger seizures in my son. The thought of seizures brings to mind Jakelin Caal Maqin, the seven-year-old Guatemalan refugee who recently died in US custody. She had suffered seizures before she passed, having made the arduous journey with her father to our so-called Promised Land. I wonder if these refugees who walk at night navigate by stars. I wonder what led to her demise. I read of border patrol agents sabotaging humanitarian water stashes left in the desert to aid desperate, parched refugees. What kind of people do such things to fellow human beings? Cowards. Monsters. Fools.

I call Michael from my new dumb phone to tell him that I love him. I hear Calvin squealing in his arms. It's almost bedtime for our boy. Soon, we'll change his diaper and put him in flannel pajama pants and two clean long-sleeve shirts. We'll give him Keppra, cannabis oil and water. We'll brush his teeth, lift him into bed, tuck him in under a goose down cover and thick fleece throw. We'll stroke his hair and kiss him. He'll be warm and safe, dry and hydrated. No hiding under desert sagebrush in the wilds. No risk of thirst and hunger. No sleeping on concrete floors in cages. No sitting in filth with scores of others. No abuse, neglect or trickery from foreign strangers speaking English.

Where has our compassion as a nation gone? Our embrace of others? No doubt to dirty dogs.

As I step into the house, warm light and air pour over me. Once more I glimpse the sky before I close the door. I see Jakelin there among the sparkling stars.

a week in photos: sunday

silent and indifferent

Slowly, she walks by my side under a tar-black sky, her blond paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. As I look up into the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about weary immigrants risking their lives on perilous journeys to escape murder, war and genocide, or see the countess homeless folks shuddering alone in the cold, or hear about the innocents riddled with bullets in churches and theaters, cafes and other public spaces in the name of hate or some so-called supreme race, false ideology or distorted god. I know because today I am reminded of the Sandy Hook elementary school first graders gunned down by a disturbed young man who was once a child himself. I know because of the millions of abused, exploited, interned, starving, neglected, diseased, disabled, chronically ill children in this world—even children like Calvin who are racked with seizures, some so severely that they don’t survive. Still, there are those who salt others' wounds swearing it’s all part of God's design.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's rim. I want to venture to its center where by day the college athletes lope in ways Calvin will never do, out away from the glare of spotlights and the hum of engines. But harsh light grazes me no matter how far I go. From beyond the field's edges I can hear the traffic drone, but then I hear the night train whistling its orchestra of perfectly arranged notes, and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful for so many things: for my husband, for my son, for my place in this spinning blue world.

Still, I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them knowing, though not fully grasping, their infiniteness, I feel insignificant, and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth, and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, abandoned, slaughtered, and I loathe the thought because it’s clear to me that the universe, though long ago set in sublime motion, remains silent and indifferent to our pleas. The only elixir is to think of each star as one of those little children, to think of the shining moon as their vessel of love pouring over us as if to say, please, end your hateful ways.

originally published 12.14.15

photo by http://favim.com

wild

My child is a rabid animal—a brute, a beast, a demon—lunging, flailing, writhing, wailing. He screams and growls like a taunted bobcat, possessed by some dreadful tormentor. At times his mouth purses into a sickening grimace as if he's bitten something foul or rotten. In the seconds-long brevity of calm between his countless bouts of pain or madness, I recall Regan in The Exorcist, and wonder how and when my child will be released.

Our struggle lasts for over an hour. With him, in his bed to keep him safe, my wild child tears at my hair, shoves fists into my throat, throws elbows in my face, butts my head, grabs my neck, kicks me with his restless legs. My attempts at soft restraint yield us no respite. His savage fits repeat every few seconds in a viscous loop of unknown misery. Are these Cramps? Night terrors? Migraines?

I manage to give him some CBD. When it doesn't ease his distress, I give him extra, rectally. Within ten minutes the frequency of his surges ebbs, their intensity lessens. Half an hour later his rage has waned, and in my arms he begins to settle.

In the dark I lie awake for a bit, his hands clasping the back of my neck, his head pressed into mine the way he likes to sleep. Just outside his window, I think I hear a captured squirrel gnawing on its metal cage. A wild thing trapped and desperate can become insane. Are my child and I like that? Wild animals held captive? Deranged? Each by our own bleak state? I imagine straight jackets and padded cells, lobotomies and opioid pills. I wonder if these wretched episodes will ever end.

Finally tamed, my wild son and I sleep. We are safe. Still, we're living in a virtual cage.

knocking on wood

Again, I find myself crossing fingers and knocking on wood, holding onto hope that the Palmetto Harmony CBD cannabis oil we started giving Calvin last June will begin to better thwart Calvin's fits if we can just find the right dose.

After first starting the Palmetto Harmony in June after a different CBD oil had failed, Calvin went forty days without any grand mals, though did suffer a handful or more of complex partial ones. After a breakthrough grand mal, however, he never regained the same seizure freedom. We tried a CBD reboot—something some parents swear by—but had no luck. In part because of the feeling in my gut, I've continued to slowly titrate Calvin's dose upward.

The forty-day stint was evidence to me that the Palmetto Harmony held promise. We had only once before seen Calvin go that long without a grand mal, and that was when he was taking high doses of three antiepileptic drugs which wreaked havoc on his behavior. But I wanted to get a sense of what a therapeutic dose of CBD might look like, since there is really no consensus. So, I made some queries on social media, and I wrote to Charlotte Figi's mom (of Charlotte's Web fame), hoping to find out. What I learned astonished me: some children Calvin's size (sixty pounds) are seizure free on as little as fifteen milligrams of CBD oil while others take several hundred each day. The wide range might be due to the method of extraction, the kind of cannabis strains used in the oils, the type of epilepsy being treated, and the pharmaceuticals on board. In any case, I felt validated to increase Calvin's CBD oil beyond twenty daily milligrams considering he has always needed high doses of pharmaceuticals for them to be at all effective.

Today, Calvin is taking sixty milligrams of CBD oil divided into two doses—one milligram per pound of his weight. Charlotte Figi, who weighs the same, is taking nearly three times that amount and is close to being seizure free. So far, at the slightly higher doses, Calvin has enjoyed over three weeks with only one, brief, subtle event that may or may not have been a complex partial seizure, plus two grand mals, which is slightly fewer grand mals than his average for this length of time. As we have increased his CBD dose, he has seemed generally calmer, steadier, more compliant, and might be sleeping better. The most evident benefit I have noticed, however, is the speed in which he recovers from grand mals. He bounces back within hours, has been able to go to school the same day, and hasn't had any partial complex seizures in the ensuing hours and days like he usually does.

For this I am grateful, but I'll continue crossing fingers and knocking on wood, because I know how epilepsy rolls.

still here

i'm still here. just life getting in the way of blogging. enjoy the pics. i'll post again soon. thanks for checking in. xoxo

Photos by Christy Shake and Michael Kolster

finding balance

Every week I spend several hours at my computer and on the phone helping parents navigate the world of epilepsy, its ups and downs, its medications, their side effects, their withdrawals, its alternative therapies, namely medicinal cannabis oils. When I sat down at my desk this morning, I read a question a mother had posted on a Facebook group page called CBD 4 Children With Epilepsy. She wrote:  

As care givers, how do you keep balance in your life to be your best?

I knew what she meant. Before responding, I scrolled through each of the comments that mostly mothers had written, clutching my fist to my heart as I read:

I wish I knew.

I honestly don't know.

I feel lost.

I don’t know how yet.

Trying to figure that out.

There's no balance.

Take it one day at a time. There is no balance or normalcy anymore.

Balance??? the only thing I attempt to balance is the wine glass in the cup holder on the elliptical.

Fake it til you make it!

Yoga. Lots of yoga.

No balance. You do your best. Those in your life who get it will become priceless and those who don’t will eventually drop off.  Any suggestions are easier said then done. Do what works for you in the moment.

This is a really good post. Just reading that I’m not alone makes me feel less like crap.

be grateful for all the good that is in life. Again I thinks it’s healthy to cry every once in a while, you have to let it out.

Sadly, there is no balance. You just scrape by each day at a time. Hang in there.

I’d die for some relief on the regular because I do feel all consumed by it. Depression and anxiety get so much worse over time. Not myself anymore. But day by day we roll along.

No balance here...

each day is hour. By hour. I find when I get a chance to leave the house I worry. Or if I’m here I worry but at least I’m here to help. I don’t know how I will do this long term but for now I take CBD and drink coffee.

one father replied:

There is no balance—I take every minute as it comes. Prepare for the worst and hope for the best. Every time I feel like giving up she smiles at me and it makes every minute of pain worth it. Best advice I can give you—ignore doctors, ignore people’s opinions and follow your gut—the day I turned my back on doctors, family and so-called friends was the day my daughter started to get better. Cannabis is helping her (and me!) along nicely.

Having felt much despair recently from—among other things—sleep deprivation, no nursing help for months, the early-onset of winter and feeling hemmed in, too many seizures and missed days of school this fall, the cumulative stress of being the primary caregiver of a child like calvin, I responded to the post with the best advice I could give at the time:

simplify. spend time with friends. read a good book. delight in the small things. spend time in nature. one day at a time. practice the art of mindfulness. forgive yourself.

Later, as I walked Nellie through the slushy trails, I pondered the mother's question further. How do I do it? I thought to myself. How do I take care of an infant-toddler in a growing teenage body, year after year after year? How do I go on chopping his food, clipping his nails, washing his hair, wiping his ass, changing his diapers, his shirt, his pants, his socks, his bandanas, his bibs, his shoes? How do I go on researching new drugs, their efficacy, their side effects, their metabolization, their half-life, their therapeutic range, their withdrawal protocol? How do I go on researching cannabis and all of its cannabinoids, terpenes, extraction methods, effective therapeutic ranges? How do I go on logging Calvin's daily behaviors in my journal, logging the frequency, size and consistency of his stool, his sleep patterns, his drug changes, his seizures, their frequency, type and duration? How do I go on watching him seize? How do I go on keeping track of his doctor's appointments and blood draws, hire his nurses, train them, manage them, then see them go?

The burden of raising a child like mine is dizzying if looked at under a microscope or from afar, though both are necessary evils. The safest, healthiest distance to keep to achieve any semblance of balance in life—though not always practical or possible—is a day, an hour, a moment.

After I walked Nellie and had done some errands I went to the college's indoor track and ran two-plus miles. It's the second time this week—and one of only a handful of times in the past couple of years—that I have jogged. It felt good. I saw a couple of friends making their way around the red, rubberized track. When I finished my warm-down lap, a handsome, fit, slightly-older man came over to visit, and when I told him I was just trying to get some much-needed cardio, he asked me what other aerobic exercise I do. I told him I don't do any besides walk the dog, lift my disabled son and shadow him around the house. The man seemed impressed, but maybe I'm imagining things.

Walking home in the cold, endorphins coursing through my soon-to-be-fit body, and feeling a slight glow from being noticed, I thought of a few things to add to my list of advice for the parents of kids with epilepsy looking for balance:

exercise. nap. cuss. get out of the house, day and/or night. talk to strangers. know you're not alone. be grateful. 

Photo by Michael Kolster

imagine

Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people living for today

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people living life in peace

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people sharing all the world

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

—John Lennon and Yoko Ono

grateful for

my crazy kid. clean air to breathe, clean water to drink. a roof over our heads. heat, especially when i wake up and it's five degrees. imagination. powerful women. rhododendrons encrusted with buds. eyeballs. sweet, soft, goofy, smart, loyal doodle. long shadows. turkey. brothers. soft-boiled eggs. any sleep i can get. our local grocery store staff. pie—all kinds. dylan. zappa. wonder. stovetop espresso with warm milk. toothpicks. boots. cooking with gas. the accident of birth in a first-world nation. sisters. california. the right to vote. the usps. red wine. my little family. wind. starlit skies. forests. thoughtful men. the sun. homemade gravy. jeans and sneakers. to be alive. good thinkers. friends, new and old and ones i've never met. mother earth. humor. besties. soft boiled eggs with sea salt and butter. embraces. maine. dinner parties. gifford's vanilla ice cream. free speech and the ability to move. warmhearted bartenders and local shop owners. cake for breakfast. community. npr. mary. kate bush's divine voice. alberta spruce. milk. technology and the capacity to disregard it. dishwashers. hot showers. the ability to give. silence. the look of snowfall. college students. sunset in a mackerel sky. healthy bodies. immigrants. handsome, funny, loving husbands. healthcare. curiosity. good books. intelligent discourse. bawdy jokes. embracing strangers. in-laws. cannabis as medicine. decent leaders, of which we now have more. music. art. film. dance. democracy. putting words down. clouds. time. bodies of water. rain. trees.

Photo by Michelle Lisi D'alauro

relentless

Epilepsy is relentless. I tell you, it's some effed-up shit.

After a terrible October, November had been shaping up to be decent for Calvin, who had only two grand mal seizures and zero partial complex ones as of the thirteenth of the month. But then Wednesday's grand mal was followed by some sort of event yesterday morning at school (not sure what kind, but probably a grand mal) plus a half-dozen or more complex partial seizures all afternoon and evening culminating into another grand mal at 8:15 p.m. Though we gave Calvin rectal Valium during last night's grand mal to stop the cluster, and though he slept fairly well afterward, he's gone on to have three complex partial seizures today so far.

In summary, Calvin has had at least fifteen seizures in just over two-days' time, so November is on track to be worse than last month was. 

When these spates happen, which is all too often, I try hard not to despair. Michael makes attempts to console me by suggesting I not focus on the number of seizures. And while employing that strategy gains me some temporary relief, it's nearly impossible for me to maintain for more than a few minutes.

For families like ours, epilepsy—far more so than Calvin's gross visual impairments, autism, incontinence, cerebral palsy, physical and intellectual disabilities combined—seriously limits our ability to do literally everything. We're held captive by our son's disorder. Epilepsy is also frightening, harrowing, miserable, frustrating, taxing and dreadful. Folks routinely underestimate and misunderstand it. Living with a child who has intractable epilepsy requires hyper-vigilance, grit, focus, stamina, smarts, patience and strength. I don't doubt some folks probably think I'm overbearing and hypercritical, but it's what the job requires. Luckily, as David Bowie might say, I've become immune to their consultations; I'm quite aware of what we're going through. Besides, Calvin is the one who matters most.

One consolation during these seizure-filled spates that have peppered nearly every month for over a dozen years—though ironic in it's grim significance—is knowing I am not alone.

other's struggles

Back at the grocer. We go nearly every day. Curious kids with their indifferent mothers idly ogle my son. Heedless of my seeing. Clueless of his blindness. Ignorant of his seizing. Unwittingly oblivious to the missing white matter in his brain. Elderly, disabled and homeless folks display their keen insight and compassion. My son hugs them. They make my day a better one.

Between cellophane-bagged grapes and neatly stacked waxed apples, we meet a woman. She says her name is Jane. She's drawn to my son. Calvin knits his fingers madly. Gawks at suspended fluorescents. She's unfazed. He can hear their buzzing. Still, her greeting seems to fall on deaf ears. I tell her he cannot speak. I tell her he seems due for a seizure. Her apple blossom smile withers.

She and I stand and chat. I keep my son in hand so he won't wander. She tells me of her love of kids and of two ectopic pregnancies. No babies of her own to cuddle, no sons or daughters to raise. Instead, she spent time in children's hospitals giving love and gifts to sick ones. Knowing the struggles kids like mine and their families face, people's petty complaints bother her. I feel her pain.

Aside the grocer's bakery, I envision raging fires scorching acres of my beloved golden state. See burned-out cars abandoned roadside, bleeding aluminum. Regal oaks still stand, though now as blackened skeletons. Charred bodies wrapped in cobalt tarps. Entire neighborhoods, homes, lives, reduced to charcoal, cinder and smoke. I consider immigrants working in the fields not far away. Tireless. Sweating. Picking lettuce, apples, grapes. Backs breaking for little pay so the rest of us can buy fruit and vegetables cheaply. I tell Jane there's no comparing when it comes to others' strife and struggle. Everyone has their burdens others can't always see. People with hidden scars and weights sometimes complain. It's okay.

I muse on humans. We are the same the world over. Love our children. Do what it takes. Hope for better futures. Flee dangers. Seek out food, shelter, water, safety, equality. Desperate and fearful, we migrate for our loved ones' sake. Americans would be no different if faced with famine, war, despots, gangs, murder, rape. Like from burning buildings, we'd escape. Complacency and dispassion lead some to pass judgement. Others follow fearmongers blindly and willingly into thoughts and acts of hate.

I think of prayerful people, certain that their god will save them. So sure of answers to their pleas. Staid in their faithfulness. Good and loving folks whom nature haphazardly and grievously incinerates. Fires can scale the walls that even prayful people make. In god's name, pious war over territory on our precious Earth that has birthed us all. Whose land is whose anyway? If there is a god—I think to myself between plastic-wrapped fish and meat—there is one for all of us.

My child and I stand in line and wait to pay. He licks the glass beverage case. I wipe and kiss his drooly chin. Pat his head. Run my fingers through his hair. The woman in the other lane glares then averts her gaze. The man behind me smiles and winks, says goodbye and waves. My kid is seemingly oblivious. I'm sure he hears everything. Perhaps he can sense the burning embers others feel, their need to douse or hide their pain.

Camp fire, John Locher, AP

gut and gumption

It has been over three weeks since Calvin had a complex partial seizure. He has suffered two grand mals this month, the last one being eight days ago. Though October was horrible and chock full of seizures, I'm glad I've followed my gut, which keeps telling me to have faith in his Palmetto Harmony CBD oil. When we first started him on the CBD oil last June, adding it to his Keppra and my homemade THCA oil, it seemed to help Calvin go forty days without a grand mal—about five times longer than his average stint. Shortly thereafter, though, Calvin lost that seizure control, compelling me to take to social media for answers. Some parents advised me to do what is called a CBD reboot, to eliminate the CBD for a couple-few days before reintroducing it at the starting dose. The logic stems from the notion that the body's cells become saturated with CBD, thus rendering it ineffective. Against my better judgment, I tried a mini-reboot back in July, which produced no positive results; August yielded twice as many seizures as July.

In my hyper analysis of all-things-Calvin, I recalled that he has always needed high doses of most of the drugs he has taken—Keppra, Depakote, Onfi, Zonegran, Lamictal, Banzel, anesthesia—for them to be effective. I asked myself, why would cannabidiol be any different?

And so since the mini-reboot, I've continued to slowly increase Calvin's CBD oil every couple of weeks while keeping his Keppra and my homemade THCA oil at steady doses. Calvin is now taking forty-five milligrams of CBD oil per day divided into two doses. Some kids Calvin's weight (sixty pounds) take as little as fifteen milligrams while others take several hundred milligrams daily. The range is impossibly large, making it difficult to know what amount of oil is too little or too much. At Calvin's current dose, I have seen his behavior improve. He is more compliant and, on average, is sleeping better. And though it is yet a small time frame, he has seized less as I increase the dose beyond its previous high in August. I'm hoping this tinkering will lead me to the sweet spot, that silver CBD bullet my husband doubts exists, but one I know exists for other children. Why not mine?

So, I'll keep trusting my gut, using it to guide me. It has been right before. Besides, what else is there? There's no crystal ball, traditional pharmaceuticals haven't worked, we've been told brain surgery is not an option, I don't have faith in the VNS, the ketogenic diet was a stressful, horrible wash, neurologists don't have much to offer beyond increasing drug doses or piling on new ones, there are few solid studies about cannabis and none that I know of on its dosing, and all kids respond differently.

When it comes to my non-verbal son, his epilepsy and its treatment, gut and gumption are really all I've got.

glowing

This morning, feeling mostly rested from last night's soaking rain, I woke to see the sun's rays reflecting off of a yellow maple onto a wet cedar deck. Everything nearby—the driveway matted with leaves, the lichen-encrusted fence, the garage, the dawn sky—glowed golden. When I got Calvin downstairs I was greeted with the good news that so many women had won their hard-fought races in yesterday's election—White women, Black women, Latina women, Native American women, Muslim women, gay women, republican and democratic women—and that democrats had taken the House. I felt myself glowing.

After a cold, wet, four-day weekend spent indoors with a sick and seizing child, I stepped outside with Nellie welcoming warm wind and sun. Under a sky nearly as clear and blue as the ones in the West, I mused further on the outcome of the election, on a congress finally beginning to reflect more people like me—women—as well as one beginning to mirror the rest of America's growing diversity. I felt hopeful.

Later, when I sat down at my laptop, I came across a photo my sister-in-law had taken of her eighteen-year-old son, Ben, who had just voted in his first election. In the photo he was providing his family with up-to-the-minute election-night results, the light from his phone illuminating the American flag emblazoned on his chest. And although Ben, who lives in Florida, may not be happy with most of the state's results, I see in this photo the afterglow of what was in so many ways a promising election. I was proud to see his civic engagement at such a young age, while lamenting too many so-called grownups who chose not to vote.

It seems in great part that Americans voted for much of what I had hoped for in my last blog post: love, truth, honesty, decency, justice, equality, brotherhood, sisterhood, unity, wisdom, humility, empathy, charity, diversity. Now, I hope those elected can make policy so that not one American goes without affordable healthcare, not one person is denied their human and civil rights, not one person is disenfranchised.

I was also heartened to see that another state, Missouri, voted to allow the use of medicinal cannabis. Perhaps our new congress will legalize cannabis so we can board a plane with Calvin again. Speaking of which, though Calvin had a horrible October full of seizures, and a poor start to November, I'm still hopeful that the Palmetto Harmony CBD oil will help quell them when we find the right dose.

In the afternoon, I took Nellie out for another walk before Calvin came home from school. At the fields I saw a college student—tall, handsome, thick dark curly hair, light brown skin—taking a photograph with a good old-fashioned 35 mm camera. I waved him over knowing he was probably one of my husband's photography students. I introduced myself by name and as Michael's wife. Shaking my hand, he told me his name—Nate—then went on to explain that he was redoing the first assignment, noting that Michael's class is his favorite at Bowdoin, so he wants to put in extra time. When I asked what the assignment was he said, "light," motioning with an extended arm to the sky at my back. I turned to see that cumulus clouds had moved in above us and at the horizon, their puffy edges skirted in blinding white—silver linings—from the sun passing behind them. Along with everything else today, the sky was glowing, which I took to be a good and welcome omen.

Photo by Lisa Kolster

on voting

vote for love. vote for truth. vote for honesty and decency. vote for justice, equality, brotherhood, sisterhood, unity. vote for strength in diversity. vote for equal rights, opportunity and protection for all human beings. vote for wisdom and sanity. vote for humility. vote for empathy and charity. vote for democracy.

vote against hate. vote against deceit. vote against greed. vote against racism, misogyny, bigotry. vote against fearmongering. vote against divisiveness. vote against conceit. vote against ignorance, disenfranchisement, oppression, intimidation. vote against corruption, nationalism, oligarchy and autocracy.

godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

             

A typical grand mal for Calvin, 2011.