imagine the unimaginable

I’d wager not a day goes by that I don’t worry about my son Calvin’s demise. Just yesterday, after giving him his cannabis oil, he had a coughing fit, at times not breathing for long spells. While he was choking, my mind raced down a time tunnel to images of calling the ambulance, speeding to the ER, and kissing my boy goodbye. It might sound mellow dramatic to some of you, but when you’ve got a kid with a brain malformation, low muscle tone, a tendency to choke, significant developmental delay and a chronic condition such as intractable epilepsy, it’s not a stretch to begin imagining the unimaginable.

At times I fear he’ll trip or fall and crack his head or perhaps he’ll gag on a goose down feather in the middle of the night, or die in his sleep from SUDEP, or suffer organ failure from years of taking antiepileptic medications, or succumb to a seizure that doesn’t stop.

The thought of losing my boy is scary and, though not entirely imaginable, if I let my mind drift, I can get there part way. That feeling of dread and despair which spates of seizures often conjure might be why my heart sinks so deep when I hear of other mothers losing their kids. It’s the miserable feeling I get when I hear of children dying from prolonged seizures while waiting for cannabis to become legal in their state. It's the feeling I get when I hear of innocents being shot by cops because of the color of their skin. It's the feeling I get when I hear of kids who shoot themselves because they were bullied, or children murdered by gunmen storming into their schools, or being accidentally shot by a sibling or a friend. It's the feeling I get when I hear of children in refugee camps who die a miserable death from disease or starvation, or drown on voyages to nations where they hope they'll be safe and free.

It's not just the children's pain that I find difficult to swallow, but their parents' anguish over the void where there once was a dear child. Life without Calvin, who I so dearly love, would be immeasurably painful and it's impossible to know if I would survive. It's a universal truth, not one reserved for white America; mothers and fathers the world over know this dread, and worse.

In my mind, I embrace these children whose lives end so needlessly because of the world's hate and neglect, a world in which wars are fought over drugs and gods and oil, where human suffering is questioned, where walls are built and lives are corraled within fences, bars and wires. A world of too much greed and too many lies, too many loaded guns nearby, where refugees are suspect, and poverty and starvation are ignored.

Make America great again! The flaxen-haired candidate booms, as if summoning a time when Blacks were mobbed and lynched, women couldn't vote, not everyone could marry who they love, when, before labor unions, the hardworking poor were legally exploited and child labor was the norm, when innocent Japanese American citizens were interned, and when women's bodies were worse fodder over which conservative male politicians passed perilous laws.

Make America hate again!

I swear that's the message Trump has been broadcasting under another guise. What I think he and his fans really mean is, make America white again. So many folks revel in his damning and insufferable messages it makes me ill. I grieve for the mothers of the three young Sudanese immigrants killed assassination style in Indiana last Friday. All were black. Two were Muslim. I've no doubt their sons' demise was incited by the kind of anti-Muslim rhetoric Trump peddles. I read about a recent poll which showed that seventy-four percent of Republican voters in South Carolina support a ban on Muslims, with twenty percent of Trump voters also saying they wish America had never freed African American slaves. Even crazier, I've no doubt most of those folks think of themselves as Christian.

I like Hillary's ambition to make our nation whole, emphasizing that we need more love and kindness in America. Yes we do.

But the hate and intolerance of the kind that Mr. Trump sells, and the fires fueled with loathsome tones, will only serve to ensure the demise of more innocent children, from things like guns and bombs and lack of medical care or food. Imagine, if you dare, their little faces blotted from this world, their cold bodies withered and ashen, limp and emaciated or riddled with bullet holes, their pristine souls gone up in smoke.

Imagine the unimaginable. Envision things far worse than they already are, and on our shores. That world you see with your eyes closed is what life could be like if someone as reckless and shameful as Donald Trump is in control.

Hulton Archive/Getty

garbage trump

When I walked our dog Nellie to the fields one morning last week it was minus one degree Fahrenheit with a windchill factor in the negative teens. When it’s cold like this, and without a nurse to help take care of Calvin, for the most part I’m stuck indoors traipsing around behind my kid whose care often epitomizes monotony; he's a non-verbal twelve-year-old boy who can’t grasp abstractions, can’t dress himself, use a spoon or play with games or kids or toys. So I’m stuck inside with just my thoughts, sometimes eking out a few lines on my laptop when Calvin spins in his jumper.

On these long cold days I find myself thinking a lot about the presidential race, and not just about Hillary and Bernie, but about the field of conservative crackers, particularly the one with the spray tan and peroxide hair that defies every law of nature. I'll refer to him here as Mr. Dump.

In contrast to Mr. Dump, my son Calvin doesn't have a mean bone in his body. He truly is a pure spirit, his every cell bursting with unconditional love, incapable of hurting a fly, at least not on purpose. Calvin's soft light is a precious gift, a refuge amid a barrage of Dump's harsh bombast and the Rights' absurd fighting and yelling and railing.

I don't believe in heaven or hell or angels, or even that things happen for a reason, but I'm beginning to think that Mr. Dump is Satan's twin. He even has the backing of a former KKK grand wizard, who he lied about knowing, and a band of nasty white supremacists. Here are some examples of the baseless and vile garbage that comes out of Dump's mouth in public (I try not to imagine what he says and does behind closed doors):

About Muslims: “We have a problem in this country. It’s called Muslims.”

About Megyn Kelly: “She had blood coming out of her 'whatever'.”

About Mexicans: “they're bringing drugs, they’re bringing crime, they’re rapists."

About African Americans and Jews: “I have black guys counting my money ... I hate it. The only guys I want counting my money are short guys that wear yarmulkes all day.”
 

About African Americans: “Laziness is a trait in blacks. It really is, I believe that.”

About himself: “The beauty of me is that I’m very rich.”

About his daughter: “I've said if Ivanka weren't my daughter, perhaps I'd be dating her.”

Rising over his sickening rhetoric is the din of angry supporters who—though he openly and blatantly condescends to them—applaud his bigoted, misogynistic, bombastic, racist, fascist and xenophobic filth. He and they hold bitter contempt for any semblance of political correctness, which is really just another term to describe decency, kindness, consideration and respect. I think of Calvin who, if he could reason and speak, would never in a million years revel in offending others.

Dump, it appears, has become the champion for those who wallow in the kind of bile he spews, who want to put up walls to keep refugees out of a nation comprised of immigrants (mind you, they're not talking about Canadians), who want to round up people based on their religion (no, they're not talking about Christians), who have an appetite for torture, a perverse thrill for ridiculing women and mocking the disabled—or at the very least laughing when he does—and a penchant for angry rants. This arrogant narcissist has harnessed, even fueled, hatred toward people who are good. The vileness of his convictions is repulsive to me, perhaps boarders on dangerous. Can you imagine a man like this—who lacks even the guise of basic human decency, humility, consideration, restraint, introspection or remorse and who repeatedly balks when asked to explain his policy—having his finger on the Red Button? With conceit like his and a clear ignorance of the nuance in handling foreign affairs, he'd be liable—perhaps even thrilled—to ignite World War III.

It's cold as hell again today, a bitter wind cutting to the bone. While I'm waiting for Calvin to get off the bus and give me his usual smiles and hugs, I've been writing and wondering how it is we seem to have become a nation of so many fools who have insatiable appetites for garbage and shit.

Art by Meike van Schijndel

full moon rising

lu·na·cy
ˈlo͞onəsē/
noun
the state of being a lunatic; insanity (not in technical use).
origin
mid 16th century (originally referring to insanity of an intermittent kind attributed to changes of the moon).

Twice yesterday, the full moon rising, my boy briefly choked on bits of food. Once, he let out an odd shriek that I barely recognized as being his. He had one warm red ear, two warm hands, one space-out, and at times was rubbing his head madly and covering his ears. At one point he became intense as hell, or what I sometimes call bat shit crazy. These are just some of the omens I see on the brink of his seizures.

I wrote in his journal that morning, not himself, though I’ve really no idea who my son is completely because of the heavy veil of drugs and seizures that have plagued him the past ten years, and because of the difficult benzodiazepine wean no child should ever have to endure, much less the drug itself, except perhaps in the most dire cases.

Mid afternoon, Michael and I had a bit of a reprieve and were able to—for the second time ever—sit in a nice restaurant, drink beers and graze from a pile of fancy fries while Calvin sat between us banging the table and eating his diced up lunch. As we sat overlooking the river, we marveled at how far Calvin has come, being able to walk with us—on good days—as far as the fields and back, to grocery shop with us and to perch in a regular dining chair, safely and somewhat patiently, so that we can almost relax.

Yesterday morning, I'd reduced Calvin's benzodiazepine by 0.05 milliliters, which in a three milliliter syringe is equal to about one drop or 0.125 milligrams (he gets two doses a day). We've learned the hard way that it is better to be safe than sorry when weaning benzodiazepines, so we've slowed the wean down to such a rate that Calvin won't be off the last four milligrams until probably next February, though we've been weaning it for nearly two years already. But if we go any faster, Calvin suffers; he endures more seizures and these frightening episodes of pain that, because he can't communicate, we've no way of determining what hurts. He just cries and writhes and looks at us as if imploring us to make it stop. His cries have the excruciating quality of a baby's, and are gut-wrenching to endure, knowing not how we can help.

Back at home after lunch, the chokes and shrieks and space-outs put me on edge sensing a seizure taking shape, even though it was only day three since the last one. We went to bed early again, bone-tired and sleep-weary from the long winter "vacation" week.

At three-thirty a.m., the full moon lingering low in the sky, Calvin awoke disturbed, a bundle of nerves, and never went back to sleep. Still leery of an impending seizure, I gave him a little extra Keppra and, later, pushed his benzodiazepine an hour or so early hoping for the best. Despite my strategies, at dawn and shortly thereafter, a few brief partial seizures eked out between Calvin’s fits of utter lunacy. He became so manic I imagined the very worst, not just from him, but also from my sleep-deprived, persistently stressed, frazzled, haggard, deranged self. Good thing he’s cute, I repeated, then took another desperate gulp of caffeine with milk.

Between Calvin's seizures, I read from another mother, a dear friend, that she’d had a similar night and that she’d also held vigil beside her child, waiting on edge for the inevitable seizures that seem to come so often under the tug of a full moon. She mused on the image of we caregivers retreating to an underground bar to commune and drink whiskey and tell dark jokes. I'd love to join her there now. It's five o'clock somewhere, and the full moon puts me in the perfect mood.

Calvin at ten months

in the meantime

Stepping outside this morning, my breath froze in fifteen degrees. The street was quiet, the sidewalk patched with sand and slush, the front lawns still laced with snow. Even so, it felt a little like spring somehow. The sun beat my shoulders through a sweater and down coat and I could hear in the trees little birds flitting and chirping—the robins, the cardinals, the chickadees.

When Nellie and I reached the fields I let her off of the leash and she led me across the frosty tundra. We were alone, it seemed, but for the pileated woodpecker’s staccato echo coming from somewhere in the woods. I stood at the edge of the trees at the mouth of a snowy path, listening.

Lately, I’ve been bemoaning my inability to come and go as I please, what with Calvin on school break and no help from a nurse, in the face of some wildly windy days with subfreezing temps, sleepless nights, viruses and seizures. I see and hear reports of people’s travels to places far away—the Caribbean, Africa, Europe, Asia—and I wonder if I’ll ever be free to visit those places again. Standing at the forest’s edge I pause, grateful that at least I had the opportunity and gumption to travel extensively in my youth. Some people don't.

This sense of spring in the air gives me a hankering to work the earth, to prune and mulch and dig and plant. The feeling made me realize that I’ve got a lot to be thankful for right here in my little corner of the world. I’ve got an uber-cozy home, a stellar husband, extraordinary friends, a couple of decent hangouts, good food, good health and health care, a fantastic dog and a most loving turkey of a kid. I’ve even figured out, I think, how to reduce his seizures a bit.

I also have my writing. And putting my thoughts and feelings down on paper, and with the prospect of soon being able to get my hands into the dirt, I can forego exotic trips, at least for now.

In the meantime, I’ll hang out at home, traipse around after Calvin shielding him, with my body and flattened cardboard boxes, from staring at the sun, have friends over for coffee or wine, and watch Calvin explore them as if he were blind—oh, that’s right, he is legally blind! I’ll watch my movies and sip my bourbon and look outside at the plants as they bask in the sun and think about which ones I’m going to move and ponder a long overdue trip to San Francisco where things are blooming now, and maybe, someday, a trip to Jamaica with Michael and Calvin (cannabis is legal there). I’ll sit and watch the wind move through the pines. I’ll work my words. Watch students go by. I’ll meet new friends, bake cookies, light candles, hang out with Woody over shots of whiskey on ice and wait eagerly for my husband to come home from work.

Calvin with his buddy Uncle John

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)