inevitable

While walking Smellie today I saw a pair of morning doves perched on a stump. These are not the kind of birds I see all winter. In a sunny patch near the house, crocuses are just coming up. And while there is still snow on the ground, I feel spring is inevitable. Days are getting longer. The weather is milder. The sun is higher. Soon, perhaps, I'll be sitting with Woody on his sunny front porch sipping a rare bourbon. Perhaps with the thaw will come the ever-so-slightly lessening of viruses. For now, however, outbreaks seem inevitable.

I've no doubt right now the birds are building nests in hidden places around us. Though the earth is still frozen, I've got plans to move a couple-few plants as soon as it softens. When I can, I'm taking longer walks, trying my best not to wipe out on the swaths of ice still coating large sections in the woods. I dream of early summer when buds will be open and smoke from the barbecue will fill my nostrils. I yearn to dine in the screen porch, and walk in the garden holding hands with Calvin. For now, all that is still impossible. He and I are still trapped indoors because of the elements. But getting outside is inevitable.

I wonder if Calvin pines for summer. He stares at the sun, but I wonder if he ever regards a blue sky with clouds passing over. I wonder if he too laments the cold weather. He can't revel in fresh snow or skate on ponds with the others. I wonder if he's ever seen a cardinal. I'm pretty sure he hasn't. In the thaw, the squirrels—which I also don't think he's ever seen though they are abundant—are digging holes unearthing a thousand buried treasures.

Today is day six since Calvin's last seizure. I feel one coming. They're all disagreeable, but slightly easier to take these days mostly because they're so predictable. I just wish they didn't come in spades—or at all—but for now they're inevitable.

I'm proud to have voted for Elizabeth Warren. The ending of her presidential race is regrettable. When will we forsake our biases and fears and elect a female president? I heard of so many women who hedged their bets when it came to casting their votes. We so need diverse and female leadership. The world is not doing so well under the oligarchic patriarchy. In fact, the earth, its flora and fauna are showing acute signs of sickening. I'm dreaming of ministries where at least half of all members are women. It may take time, but, like spring coming, I must hold onto the notion that it, too, is inevitable.

trees photo by michelle lisi

indifferent nature

I'm not one for praying, nor am I looking for answers as to why the world exists. I don't need evidence that there is life, intelligent or otherwise, on other planets. If I look to statistics and consider the magnitude of the universe, I already know the answer, which is yes. Though I lament life's miseries, I don't wonder why there is suffering in the world. Mankind can be cruel. Nature is indifferent. I only wonder, when reckless and despotic leaders war, oppress, starve and shell civilians, why others allow them to continue. But I guess I know the answer to that, too: power, money, conceit, control. I wonder why mutli-millionaires and billionaires aren't more charitable with the absurd profits they make on the backs of those who actually do the labor. Instead, they pocket those profits and too often pay starvation wages. These are the things I think about on days like this.

Last night at nine, Calvin had his third grand mal seizure in less than twenty-four hours. To stop the cluster I gave him Diastat—rectal Valium. It was the first time I had used it in months if not years. It has seemed to stop the seizures from advancing, but the real test will be whether he has more tonight. I don't know if Calvin is ill or if he is simply outgrowing his medication, or whether this worsening of clusters is an effect of eliminating his CBD oil recently. Like world torments, I don't question why my son suffers, at least not philosophically. As I said, nature is indifferent. But I would like to know the root of his weekly seizures, and I'll continue to search for ways to beat them into submission.

My thought this morning was to more seriously consider giving him the plant-based pharmaceutical CBD called Epidiolex. I've been following a Facebook page about the drug for months, noting its trends and side effects. It may be a last hope for Calvin considering he has failed ten anti-epileptic drugs. If we do decide to move forward with it, I'll likely put him on a fraction of the recommended starting dose. What I've noticed about CBD is that sometimes giving less is more effective and, like all drugs, too much can cause unwanted side effects including increased seizures.

Today my boy has been waking only for moments throughout the day, recovering from the assaults on his brain, and sleeping off the benzodiazepine. Though he is in a decent mood and seemingly content, I feel sorry for him. I've watched him seize thousands of times in his life. He sometimes turns gray-blue, bites his tongue and cheek till they bleed, may sometimes have vicious migraines and often appears woefully unsettled. Watching him suffer is punishing for me. Some folks believe that God punishes people who've sinned by doing things like "taking" their newborn babies, or rendering their children with afflictions, or causing natural disasters in liberal states, or allowing mass shootings in gay nightclubs. That is such bunk. The notion is so offensive, and I wonder how anyone could or would want to believe in a god that would behave that way.

Today, Calvin's buddy Mary came to watch him for a couple of hours in Michael's absence, so I was able to get outside with Smellie. The warmth of the sun offered respite amid a bitter thirty degrees. Some of the snow is melted and buds are beginning to swell on certain trees. I baked some chewy-crispy chocolate chip cookies for my friend who is now receiving Hospice care, though doing pretty well considering. In the garden, the greens of the Alberta spruce and the reds and purples of the small-leaf rhododendrons are gems right now. I wonder if we'll have an early spring. I'm hoping so. But you won't find me praying for it, because nature is indifferent. That's just the way She rolls.

visible differences

When I got up last night to check on Calvin around eleven, I looked out the window and saw Orion low in the sky, his toe touching the tops of the trees in my friend Woody's yard. I used to toy with envisioning Orion, a mythological Greek hunter with a shield and sword, as a protector of children like Calvin. But those kinds of imaginations are inventions with no agency. Now I see Orion for what it is: a beautiful and familiar constellation in a vast, enigmatic, indifferent yet magnificent universe.

Shortly after I fell back to sleep I heard Calvin shriek. I got to him quickly as I could and held him as he seized. When it was over, I gave him some extra homemade THCA cannabis oil, syringing it bit by bit into the inside pocket of his cheek so he wouldn't choke. Then, I crawled into bed with him. His heart was pounding so hard it felt like it was bulging between his ribs. Thankfully, within twenty minutes it had calmed, and he slept peacefully.

I laid awake for awhile, feeling him breathing. I thought about all that has changed in the past year or so. Calvin doesn't rouse in a panic in the wake of his grand mals anymore. He used to regularly spring up about thirty minutes after his fits and spend the next several hours perseverating—hyperventilating, finger snapping, humming, pressing his eyes and incessantly patting his bed—all the while his heart racing. Now, he rarely, if ever, does any of it.

And there are other visible differences in my kid. He hasn't had a focal seizure since the end of November, but he's had more back-to-back grand mals of late. His behavior—on less Keppra, and two-plus years having passed since his last dose of benzodiazepine—is way better. He's calmer, more focused, cuddlier, more compliant. He goes to bed a bit faster on most nights and sleeps better, generally. He can get into the car nearly by himself now. He's staying at the table more patiently when fed. More often, he sits in our laps longer, and sometimes lets us read to him.

After awhile, I got back into my own bed and fell asleep again. A few hours later, however, and despite the extra THCA oil that I'd given him, Calvin had a second grand mal. Again, I held him as he seized and slept with him when it was over. At four o'clock he arose, sat up and wouldn't settle. Non-verbal, my kid is as enigmatic as the universe. So as an experiment, I asked him if he had a wet diaper. He was silent, but rubbed the side of his head. I asked him a second time and waited for a response. Again, he rubbed his head. Then I asked him if his head hurt, and he went, "Unn," so I gave him an ibuprofen and a few gulps of water from his sippy-cup, plus his morning Keppra, with the hope of preventing a third seizure. From then on he slept.

I used the bathroom one more time before retiring to my bed. When I looked out the window the sky was visibly different. Orion appeared much smaller and had sunk halfway into the horizon. In its place was another constellation, unfamiliar to me, though bright and bold and beautiful, and just as magnificent and indifferent.

Photo by P-M Heden

things

it's been too long. time to check in. calvin went nine days between seizures. then he had grand mals the past two days, each at four o'clock in the morning. thankfully, we haven't seen any focal seizures in two-plus months. he's almost off of cbd oil. once we eliminate it we'll hold steady for a few weeks. might reintroduce it, try a new drug or not change anything at all for a while. behaviorally, he seems to do so much better on less pharmaceuticals. i'm still making his thca cannabis oil. everyone's sleep has been better lately, too, except for getting up in the middle of the night to tend to him when he is seizing, five or six times every month, or so.

zero degrees this morning, though the sun feels good on my back and in my bones. thirty-nine degrees tomorrow. eating ice cream lately as if it were summer. blood pressure is good. feeling healthy. spring is coming. days are getting longer and the quality of light in late afternoon is promising. unfortunately there is still snow and ice on the ground. smellie is still a little gimpy, though the anti-inflammatory seems to be helping. my friend is in hospice now.

leaning hard for warren. russians are still meddling in our elections despite what the occupant says, and the false narrative he tries to spread. know your source and that it has integrity. don't believe everything you hear. look out for bots and trolls. count your blessings. children in venezuela and syria are starving and are targets of gangs and wars.

went to bed at seven-fifteen one night a week ago. finished there, there by tommy orange. now i'm reading jane eyre. i love the classics—fitzgerald, hemmingway, capote, shelley, steinbeck, nabokov, stowe. should carve out more day time for reading. been writing on my memoir again. wish calvin could read and write and draw.

while in bed next to him after his last seizure, a few times he stopped breathing for several seconds. i nudged him and whispered his name and he resumed. i've often thought it wouldn't be a bad way for him to go, but boy does it scare me when i can't hear his breathing and don't feel his chest rise and fall. i mean, how many seizures can a heart and mind take? i wonder what the hell we would do without this sweetheart of a boy. i wonder, despite all the good people in the world, how certain men in power can be so ruthless, deceitful, selfish and evil. perhaps as kids they were neglected or abused or had disgraceful, racist, greedy parents. and what becomes of their children, if they have any at all?

it has been wonderful having michael around a tiny bit more. he's been on leave from his college teaching, advising and committees this year. he still works his ass off in the studio and in the field taking pictures. more often he comes home a bit early to hang out with us before calvin goes to bed. he's super cute with our boy. all kissy-faced, cuddly and playful. did i mention what an amazing chef he is? we miss him when he's not at home.

resentment

To be honest, and thought it's an ugly emotion, there are times when I feel resentful—resentful of my disabled child, his neediness, his fleeting intensity, the way he disrupts my sleep and chaps my nerves. Though I'm mostly grateful, I'm sometimes resentful of my husband's freedom and frequent travel to faraway and exotic places which I long to revisit and explore. I'm resentful of this nation's so-called leader, his reckless policies and spineless lackeys. On days like this I resent the snow and the fact that the district called off school. I resent Maine winters, icy sidewalks, bad drivers, priggish individuals, ignorant fools. My weariness gets the best of me on days like these. No doubt you can tell.

Last night, Calvin went to sleep as soon as his head hit the pillow. Thankfully, Michael and I were able to finish our dinner while watching the first half of the film, Roma, basking in its gorgeousness. But just as we called it a night and crawled into bed, just as I was about to drift off, Calvin sat up and banged his head against the side of his bed and pounded his mattress repeatedly. In the space of half an hour, I laid him down for the one-billionth and one-billion-and-first, second and third time. I was so sleep deprived and vexed I could not contain the rounds of expletives rapid-firing from my mouth. These are the kinds of times when my resentments feel steroidal.

I have little doubt that the politics of the hour exacerbate my feelings of despair, frustration, and resentment. Certain circumstances bring irony into sharp relief, triggering some indignation, like when staunch opponents of Medicare For All must end up relying on fundraisers to cover their medical expenses, or when those with disabled children vote Red, going against their self-interests, or when people make the absurd and dangerous claim that Democrats want to destroy America, or when folks admonish decorated career diplomats who bravely and selflessly defend democracy.

Yes, when I'm exhausted I'm prone to feeling most resentful. I guess my guard is down. I resent the looks I get from strangers who don't understand the first thing about Calvin or what it's like taking care of his kind of child. I resent professionals of all ilks who think they know my son better than I do. I resent parents of typical children who show contempt for Special Education funding. I resent that there are really no local programs for kids like my boy. I resent the fact that some people malign me or play me for a fool. In the big picture, however, none of that really matters much to me. I know who I am, I know my tribulations, I'm okay with how I've learned to roll.

Today my eyes ache while feeling simultaneously swollen and hollow. My son is up to his manic screeching and antics. We're stuck indoors. The news out of Washington keeps getting worse. With little doubt things have not hit bottom considering the sycophantic actions of those emboldening the autocrat in the Oval Office.

Despite resentments, however, there is some welcoming news. Calvin is improving in myriad ways regarding his calmness, understanding, focus, expression, compliance, and overall sleep. He is having fewer seizures—virtually no focal ones—on far less medication. He has begun pooping on the potty after we give him a suppository, which translates into fewer dirty diapers. Though spring is still months away, we are headed in the right direction. Then, there's the excitement and hope of a sea change come November, after getting behind one of the wise, respectful, experienced, decent, Blue presidential candidates who have righteous policy agendas to help the middle class, students, the environment and the most vulnerable in out nation. The image of all these truths dissolves my bitter resentments in an instant, like the snow melting on a salted street in winter.

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

sweet sixteen

happy birthday, baby!