day eight again

This time it gripped my boy at three o’clock. I’d seen it coming for at least thirty-six hours, though he’d had a good enough day for me to think he might make it to day nine. But at dinner last night, Calvin was oddly calm and his balance fell totally apart, telling me he was destined to seize before dawn.

When I heard him cry out—the spasms compressing his diaphragm—I instinctively called, “Seizure!” I rushed to his bed, unlatched its netting and lowered its safety panel, then tried my best to push him back from the wooden edge so he wouldn’t break a finger or toe. Behind me, Michael started the timer, I grabbed the vial of lavender and held it under Calvin’s nose while Michael stroked and kissed his head.

Whenever Calvin's seizures occur that early, they are bound to cluster, my boy sometimes suffering one or two more before daylight. So, though it was three hours before his usual morning dose of benzodiazepine, and because the drug has a very long half-life, I decided to give it to him anyway, to prevent a rash of fits and having to give him Diastat, rectal Valium.

After the seizure was over, I drew the sticky whitish liquid into a tiny syringe, gently braced Calvin's head between pillows and squirted the drug bit by bit inside his cheek, each time waiting for him to swallow. I chased the dose with water, given in the same manner. Clobazam reaches its peak blood serum level about an hour after dosing, which would have been right at the time when Calvin has been having his seizures recently: four o'clock a.m. To be safe, I also dropped a half tablet of Keppra on his tongue and washed it down with water.

Calvin suffered no more seizures.

The extra half tablets of Keppra we’ve been giving to Calvin on days when he has grand mal seizures have seemed to rid him of the partial ones that, several months ago, started to come in their wake. I often wonder, once Calvin is free and clear of the benzodiazepine, if Calvin's grand mal seizures will diminish or even disappear. I've read that cannabis can work better when it doesn't have to compete with pharmaceuticals, especially ones like clobazam which us the same liver enzyme to metabolize.

He's back in bed now having had a decent day considering how it started; I'm on my way there in a bit.

Photo by Michael Kolster

a winter day in the life of a healthy child

When I wake up I peek outside to see that everything is white instead of green. The house is cold, so I bundle my clothes and get dressed over the living room vent where warm air rushes at me from below. I can feel the chill coming off of a bank of windows from my feet to the ceiling, a row of which make up this end of the house.

In the kitchen, Mom has broiled a pan of sausage links and is busy making Swedish pancakes, coating the griddle with ladles of thin batter then cutting it, as it cooks, into squares. A table of toppings awaits us: butter, maple syrup, powdered sugar, a warmed jar of Dad’s strawberries, and chocolate sauce with whipping cream especially for my brother and me.

After breakfast, we gather our winter gear. My brothers and sister bring their hockey sticks and pucks, and after we untangle the laces of our skates, sorting out which belong to who, we dangle them from mittoned fists then pile into the truck. Dad drives slowly on snowy roads past Robinswood school to Lang’s Pond, which has frozen over this year. Besides a couple of friends from the old neighborhood, we’ve got the pond to ourselves. Dad sits on a rock overlooking the glen while Mom dons her skates at the base of the big willow tree, its roots encased in ice, its bare limbs sheathed in white, delicate and weeping. Mom’s weak knees and ankles bend like bows. She trips and skids out toward the center where she draws a crowd of boys who dart and zip around her as she squeals, and though the ice moans beneath her weight, jagged cracks fanning from her feet, it doesn’t give way.

The snow and the sunken sky quiet our frozen pocket in the hills, dulling the crack of smacking sticks, the whack of pucks that blacken the heels of once-white skates. Well away from the mob, I glide in unsure circles, my blades chipping pits and knifing white arcs into the ice. I sit and scrape a patch of frost from the face of the frozen pond, and peering into it all I can see is blackness. I wonder about the frogs and fish in the muddy depths under my feet. Dad says they’re asleep. Some months before, I’d crouched in the sun at the pond’s edge, skimming off slime with a stick, scanning its banks for polliwogs and catching frogs in my fists, their sticky skin so thin, their tiny hearts a-beat.

Except from a work in progress.

Photo by Michael Kolster

valentines

The past few Valentine's Days I've been remiss. Years ago, I used to make valentines for Calvin's classmates, sewing scraps of heart-shaped denim to paper then stitching each one with their names. Alas, Valentine's Day is not a holiday we celebrate in this household, so it sneaks up on me and, unless I get a reminder, I forget until a baggie of notes and charms and cards made by the students comes home in Calvin's backpack like they did yesterday. Here are some of the valentines written to my boy:

To: Calvin from: Cam  You are friendly and love to give hugs.

To: Calvin From: Jack  Dear Calvin when your Mom came and talked to us about you she told us that you don't have a mean bone in your body and I believe that.

To: Calvin  You are extremely kind to all and a great friend. From Kipp

Calvin — You are very sweet. I like that you are always smiling. — Elly

To Calvin, When ever I see you you just make me smile! I can't explain why but you do. Yours Truly, Morgan

Calvin, You are very sweet! I love How you are always smiling! Chelsea

Dear Calvin: I know you are really nice and that you don't have a bad bone in your body. — Ian

Calvin, You are a very nice kid. I like waving to you in the halls. you do a good job at almost everthing you do. (Unknown)

day six

Day six came too quick, too close on the heels of what was day five and on a day which, usually, is nearly mid-stretch.

My guess is that the most recent five-percent wean of benzodiazepine ten days ago is what caused these seizures to be so tightly knit, though, perhaps Calvin is ill again, or maybe puberty or growth spurts are to blame. Whatever the culprits, the scene is damn disheartening. But I try to console myself knowing that because of the extra cannabis at bedtime, my boy only suffered one seizure this morning and, since we’ve begun giving him extra Keppra on grand mal days, he hasn’t had any partial seizures in their wake.

Regardless, it never gets any easier to hear my sweet boy cry out in the darkness, to see him shudder and shake, to see and hear his wrists knocking on the bed sideboard, to hear his strident breathing and whimpering in the tempest’s aftermath, and to witness him rub his head and cry in pain.

Photo by Michael Kolster

twelfth turn around the sun

Twelve years ago today, in the middle of an ice storm six weeks before his due date, Calvin came into the world. Two weeks earlier he’d been diagnosed, using sonograms and a fetal MRI, with ventriculomegaly: enlarged lateral ventricles in his brain and a significant absence of its white matter.

After Calvin was born we weren’t sure he’d survive. He spent his first seven weeks in two hospitals stabilizing his vitals and learning how to nurse. It was a stressful time. Michael had to travel thirty-five miles each way between the first hospital, where Calvin spent time in the NICU, and his work, which didn't offer fathers parental leave at the time. The college even asked him to teach an extra class which, for Calvin's and my sake, he thankfully declined. We stayed as close as we could to Calvin, sleeping at the Ronald McDonald house for his first few precarious weeks of life, and then I roomed with Calvin for the remaining weeks at our local hospital before bringing him home. Michael came to hold vigil every day as soon as he could, bringing home-cooked meals, clean clothes and supplies, and on most nights he slept on a makeshift bed in our room. It would be, perhaps, the most trying time of our lives.

Calvin's neurologist told us he might never walk or talk or crawl. No one said that he might also be prone to epilepsy.

Twelve years later Calvin is a wonky walker, but at least he can walk ... and crawl. He can't speak, wears diapers, has poor vision and poor coordination, though he is improving his signs for hug and more and eat and all done. Sadly, though, his epilepsy has eclipsed his other deficits, in large part due to the debilitating drugs used to treat it, which have never worked to get his seizures completely under control despite causing heinous side effects which exacerbate the struggles Calvin already endures.

But we continue to work on improving his quality of life. Over the past two years we have been giving Calvin homemade cannabis oils—THCA and CBD—the first of which appears to have halted his daytime grand mals. The oils have also seemed to have helped him sleep, calmed his body and allowed us to eliminate over ninety percent of his addictive benzodiazepin, clobazam, cousin of Valium, which he's been taking for over five years.

These days Calvin is a pretty happy kid who gets on the bus by himself, goes to school full time, likes to take baths, eats well, sops up our hugs and kisses and has an endless supply of his own. And even though he's a turkey sometimes, we're honored to be his parents and we know, without doubt, he helps make this crazy world go round.

at the bar with lamar

We saddled up to the bar, my girlfriend Lucretia and I, and talked about Hillary and Bernie and their possible running mates and about how we wish we had a crystal ball. I touched her wavy hair, noticing how silvery it had become since I’d last seen her, and told her how beautiful it looked. Her eyes were bright and smiling and I draped my arm around her for a spell, happy to be out with my dear friend again.

We dined on Asian slaw with peanuts and hot Kung Pao chicken dumplings. Lucretia sipped on a Manhattan, a house-cured maraschino cherry nestled in the bottom of the glass, and I on a Pinot Noir. I’d gotten a jump start on her, having had two fingers of bourbon at Woody’s house before she arrived to pick me up, so I was giddy and happy to be out on the town.

Partway through our meal I leaned over and nosily asked the man in the seat to my left what he had just been served. He said the dish was scallops and potatoes. The three of us got to talking, first about the food—was it scalloped potatoes or scallops and potatoes? We told stories of where we all grew up, and I remarked on his sharp plaid button-down shirt and smart jeans, which got me to talking about my time at Levi’s, which segued into discussing his new job in human resources. We wondered where he’d traveled from, and if he was going to live nearby. I asked him his name and as he put out a strong hand to shake ours he told us, “Lamar.”

It was Lamar’s first night in town, having traveled from Detroit to work a week out of every month at a plant just up the road. He asked Lucretia and I how we spend our days, so Lucretia described the time on her farm and I shared about my writing and my boy. When I mentioned Calvin’s epilepsy, Lamar told us his thirty-year-old brother has epilepsy, and he asked how long Calvin has been having seizures. I said, “Since he was two.” I openly lamented knowing that Lamar had probably grown up taking care of his little brother. He nodded his head and bowed so I touched his leg lightly in accord.

For well over an hour Lucretia and I visited with Lamar, who is handsome and young, tall and lean, with a closely shaved head and nice brown skin. He told us of a recent break up and, in solidarity with our new friend, we agreed it was probably the right thing. We laughed and joked about this and that and vowed to gather again the next time he’s in town. As we parted we all gave each other hugs as if we'd been old friends, then Lamar said joyfully of our meeting, “This happened for a reason!” I replied that I didn’t believe in that notion and said I’d explain sometime.

When Lucretia dropped me off we embraced. Inside, Michael and his friend Matt were sitting in front of a rolling fire, Nellie at their side. We chatted for a bit before I kissed Michael, hugged Matt and said goodnight.

Sleep was sound until four o'clock when Calvin started into a grand mal, just five days since the last. In the seizure's wake I syringed in his benzodiazepine, hoping to thwart any more.

Lying there next to my boy while he shivered and shook, I felt a little headache coming on and then remembered why. But, knowing that earlier I'd met a new friend named Lamar, made me feel a little better somehow.

Photo http://poco-cocoa.com

if i had a daughter

I grew up a tomboy with four older brothers and a sister, all children of a strict, working father and a stay-at-home mom. Dad and Mom raised us all to be self-sufficient. There was no division of labor between boys and girls. We all ironed clothes, washed dishes and mowed the lawn. Dad spent hours under the hood of our cars showing us how to tend to an engine, change the oil, lube the bushings and change a tire. Dad taught me how to defend myself against would-be attackers, because he knew that women are targets. I wasn’t afraid of boys, and I held my own in playful brawls with my brother—my small size, speed and agility were to my advantage.

In junior high I was one of two or three girls in my science and shop classes, and I earned a varsity letter in swimming. In high school I managed the boy’s swim team, was a lifeguard and played on a co-ed water polo team as one of the faster swimmers. I became the head coach of a summer league swim team, taking it from the bottom of the league all the way to second place in the champs. The job paid well enough to enable me to put myself through college. After college I backpacked solo through Europe for seven months on a shoestring budget. I grew up feeling as though I could accomplish anything if I simply desired it enough and was willing to put in the hard work.

Then I entered the work force and, though I was eventually promoted from every starting position, I began to see inequity between the sexes. It was the first time I’d heard the sorry news that women made about seventy cents for every dollar a man took home. I worked in the garment business, and though it is an industry largely made up of women, most at the top are men. At one of my jobs I was privy to the company salary information, and I saw for myself the discrepancy in pay between my male and female colleagues, even though the company was owned and run by a woman.

I always dreamed that if I had a daughter, I’d raise her to be confident, assertive and strong and to defy the gender roles imposed on her by a patriarchal society. I’d show her how to stare down and boldly greet a row of lunching construction workers to best diffuse their hawkish glare and tendency to jeer. I’d encourage her to speak up for justice and not to act subordinate because of her gender. I’d tell her she is as capable as her brothers in most any situation and, likely, better in many. I’d teach her to be proud of her body and to call out those who would subjugate her because of her gender or the clothes she chooses to wear. I’d teach her the history of women’s suffrage and stress her right and her duty to vote. I'd tell her not to limit herself and to never give up on her dreams.

And if I had a son who could understand, I’d teach him all the same things. Alas, Calvin is incapable of such abstractions, but if he were, I’d like to think he’d be a feminist. Some of feminism’s best are progressive men.

I say all this because I think I did have a daughter for eight weeks or so until I miscarried, and if she had survived I’d be telling her why I hope a woman will be our next president.

Don’t get me wrong. I, too, feel the Bern, as Sander’s supporters like to say. He’s got a lot of bold notions and he's coming from the right place, it seems. But I can’t shake the feeling—not that I want to—that it’s time we finally have a woman leading our nation, as the face of the USA. Like I said, Bernie is fine and good, and the two have a lot of the same ideas and would likely accomplish similar things, but at this place and time when folks on the right want to take us backwards and rewrite history in so many ways—men trying to legislate women's bodies and limit our access to healthcare, for instance—I feel the need for us to crush that glass ceiling to smithereens. I mean, it’s 2016. C'mon people! Now is the time. Besides, we've clearly had our share of male presidents, some who've gotten things done, others not so much. Goddammit, for once lets show the world what a woman can do!

I've little doubt, coming from experience having been a girl and a woman all my life, that much of the hype, scandal and contempt against Hillary can be explained away as gross examples of misogyny, by men who fear and scorn her brilliance and power and by women who, perhaps, envy it. If you aren't sure, just watch an hour or two of the Benghazi hearings where lawmakers hazed the former Secretary of State for eleven hours, trying their best to wear her down and burn her at the stake. You will witness her formidable mind and resolve, her stamina, confidence and calm. In her you will see the makings of an amazing Commander in Chief.

In what some call a man's world, I'm tired of hearing assertive women described as bitches, sick of people like Donald Trump describing women's bodily functions as "disgusting" and other conservative politicians coining cruel terms like "legitimate rape." What the hell is that supposed to mean? I'm sickened by stories of women being abused in their homes, assaulted at work and attacked on the street, maligned by the sick likes of Rush Limbaugh, neglected by the work force, criticized for their attire, and of female geniuses lauded for their cooking rather than for their brains. I'm disgusted by male conservative politicians chipping away at women's access to birth control, cancer screening, family planning services and legal abortion when really, if men could get pregnant, it would be a completely different story. I'm so over the white male dominated film industry and the lack of important roles for women—and people of color, for that matter. I want the world to come into some sort of balance, and I begin to think it is possible when I hear people like Gloria Steinem speak. She says things like:

The more polarized the gender roles, the more violent the society.

And I see the gross level of violence in this country, and I ponder all the good that is possible simply by having a smart, amazingly qualified, determined woman at the helm.

As much as I like Bernie Sanders' idealism and passion, and for all that he may or may not be able to get done in Washington, he is yet another white male (not that there's anything innately wrong with that.) Consider, however, Ms. Clinton's wealth of experience with foreign policy and world advocacy for women and girls. All other things being equal, I believe Hillary will be able to accomplish as much, if not more, than Bernie, while at the same time being a beacon of what is possible for our daughters. She is strong, capable, brilliant and experienced.

If I had a daughter, she'd be about thirteen, and perhaps in a year she'd be looking at the President of the United States, seeing a face familiar in ways, and knowing—for real—that dream could one day be hers.

Hillary Rodham (Clinton)