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!

ridicule

When I attended elementary school in the late sixties and early seventies, children like my son Calvin were sequestered to a separate cinder block building across the parking lot. They rode the short bus. The rest of us kids rarely caught sight of them. Some students called them all the names you'd imagine. Today, my son spends most of his time in his high school's Life Skills (special ed) classroom at the end of the hall. He is seen in the corridors and cafeteria, though is understood by few. In part because he is nonverbal, most of his typical peers and their teachers cannot grasp how complex of a child he is. In this busy world, perhaps they haven't the time or inclination for true understanding. I wonder sometimes what disparaging remarks some students have made behind his back. Though I imagine most of his classmates are kind, no doubt there are a few who whisper insults and slurs, mocking his disability like a certain crude official who somehow got elected.

In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.

At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery. 

In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages. 

Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.

The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.

I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.

My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.

rhetorical questions

While I sleep Calvin seizes, both for real and in my dreams. After a grand mal at two o'clock this morning, I dreamt of him seizing and chewing the inside of his cheek until it was like a wad of ground beef. Ninety minutes later, I woke up to him seizing again. My angst around his suffering made me think of a recent conversation.

Earlier this week I met up with a woman, perhaps a new friend, who not long ago arrived on my porch sharing information about Jehovah's Witnesses. During that visit, I had let her in to meet Calvin. This time, we sat across from each other at a bakery, snowflakes beginning to fall outdoors.

Over coffee, and while I nibbled a blueberry muffin, we discussed religion, science, God, Adam and Eve, evolution, heaven, hell, mankind, sex education, eternal life. I spoke of Calvin, and of his rough beginning. I asked her, in all seriousness, how she thought Noah had managed to collect Arctic animals such as polar bears, plus every living species of insect and animal—indeed multiple millions—into a 500-foot-long vessel, and then handle the rapid and exponential procreation of vermin and others, the colossal amount of shit they'd produce during a forty-day deluge, not to mention how he'd feed them. Without dismissing the existence of Noah, his ark or a major flood, I characterized the account and others in the Bible as folklore—stories written by man to help explain the unexplainable and perhaps to invoke the notion of God's wrath to maintain societal order.

Our conversation proved fascinating and respectful. I told her that I wasn't looking for answers to or explanations for life's messy situations, explaining my belief that nature simply runs its course. Though I don't entirely rule out the possibility of some kind of a divine force or creator, I don't believe in hell or Satan or angels, nor that Jesus is our Lord and Savior, though he sounds like someone I could hang with. After referencing other stories in Genesis, she described the Book of Revelations, saying God would one day make Calvin whole, make him into the normal boy I pined for in my most recent post.

Later, while taking a shower, I wondered what justification might be given as to why God would be waiting to make kids like Calvin healthy and whole. Why prolong Earth's miseries? I mean, if a merciful God exists, what's the holdup? Release the aid! We're fighting all kinds of battles down here! What has this alleged God got to prove or gain from withholding relief? He's not up for re-election. Or is this all some sick experiment? And as I watched the water spiral down the drain, I remembered what another friend had written to me recently:

If you could have seen the Florida skies at daybreak this morning, it would have given you pause to think about a Creator ... a mackerel sky that the sun lit up bright orange against a cerulean blue background. “The heavens declare the glory of the Lord, the skies proclaim the work of His hands ...”  (Psalm 19) 

As an integral part of this immense universe, I've seen a thousand blazing skies which astound and move me deeply. As I toweled myself off, I wondered how the majesty of nature's beauty is often declared as evidence of a divine creator, but the horrors of the world—famine, war, genocide, disease, poverty—despite infinite prayers calling for mercy, are not convincing proof of God's neglect or lack of presence.

Every day the impeachment trial, which I've been listening to intently, begins with the Senate chaplain's opening prayer. Monday, the chaplain prayed that God would lead the senators to do His will. What does that even mean? Will any outcome be proof of God's will? Is it God's will that children like Calvin suffer? Does God take sides in war and basketball? What makes one religion righteous and another counterfeit?

But I'm not looking for answers to these questions. They are rhetorical. I know what I believe in my heart, brain, bones and, if I have one, my soul. The sun rises and sets in infinite, glorious colors. The earth is quaking, drowning, burning as we speak. Human beings of all races and religions are good people just trying to survive. Some folks for whatever reason turn out to be corrupt, deceitful and threatening. Oceans and night skies glimmer endlessly. Nature can be unforgiving. Children are virtuous. Hatred is learned. Life is hard. People suffer needlessly. Prayers go unanswered. While I sleep, Calvin seizes. I'm not worthy of his misery.

Photo by Michael Kolster, 2015

what grief looks like

Unless there's rain, dreary days can make me grieve. Gray skies end on end tend to put the glum on me. Damp air chills my bones. Any attempts to walk with spring and purpose are hobbled by icy sidewalks.

These mid-winter doldrums make it all too easy for me to feel deeply some transient despair. Stuck inside, The Turkey is up to his usual antics—manic outbursts, intense, erratic and aimless behavior. He can do a good job of driving me absolutely batty. Hard to concentrate. Impossible to relax. Difficult to get anything done. Despair about how he's turning out feels inescapable. Baseless guilt and gnawing worry shadow glimmers of what might be considered joy.

We take Calvin to the coffee shop and the grocery store when, in winter, there are few other places for him to walk, and roughly zero other activities that he can do—we can't play in the snow, we can't take him skiing or skating, we can't bring him to the movies or for walks in the woods. I watch him limp across the street with his father, his gangly legs stiff and crooked, his feet turning awkwardly inward, one arm circling above his head as if he were riding a bucking bronco. Someone once said my boy walks like an astronaut. It wasn't meant as a compliment. I ask myself, when did what was already wrong with him get worse (in this case, his walking)?

When, rarely, Calvin looks me in the eyes without his glasses, I can sometimes see glimpses of a normal boy—the one he might have been if not for any number of things which we can't make right. But when I pull back and away I see one eye turning in, I see him drool, see him shriek, stomp, bite, bang, careen, drop, flail, wander, perseverate, seize. I see a face and body so handsome, mild and familiar and yet so very foreign and bizarre to me. And, I see my own grief. I wish he could talk to me. Eat with a spoon. Dance. Run. Play with friends. Watch videos. Draw. Sing. Get along on his own.

On a beach walk last autumn I remember musing on what grief looks like. I decided then that grief looks like the curly sprig of a young widow's mane in the wind. Grief looks like a slate-blue day in winter. It looks like khaki pools of water filling footprints left in sand. Grief looks like a messed-up sonogram. A withered rhododendron. A face rendered unrecognizable by sleep deprivation, stress, disappointment and age. Grief looks like a loved one being gradually defeated by cancer. A gorgeous bird found dead on the sidewalk. A mother lost to dementia. A desolate street in an ice storm. A child in mid-seizure. A helpless parent. An empty seat at the table.

But grief also looks like a prison cell. A hungry child. A genocide. A war unending. Raging wildfires. Melting icecaps. Suicide. Poverty. Famine. Abuse. Oppression.

And as the sun briefly climbs out from behind the clouds and warms my thighs this morning, I think to myself, perhaps we have it easy.