4.02.2020

lockdown

Our boy Matty just made a delivery to our kitchen window. Technically, I'm not sure he's supposed to since our governor, Janet Mills, just put us in lockdown today. However, I imagine beer delivery is an essential service, so I think we're good. Matty kept a safe distance as he put the brewskis through the window, and Michael grabbed them with kitchen towels before putting them in the refrigerator. When Matty said so long, he smiled at me from under his raincoat's hood, and I told him I love him and his family. Right then it became more real how hard it will be not to commune with our beloveds for who knows how long. My guess is September.

Everything coronavirus is intensely fascinating.

In the background we were listening to KEXP, which is broadcast from near my hometown in Seattle. They had just played a gorgeous cover of David Bowie's Young Americans by Durand Jones & The Indications, and were pausing for a top-of-the-hour break. Two DJs sitting in separate sound studios spoke of how they could perform dorky dances since no one was there to see them. They went on to notice how they were getting low on wipes to disinfect the equipment, adding that they'd play music until they ran out. That last comment made me begin to weep. Seeing me, Michael said something to the effect that music will save the world. He says that all the time.

As the one DJ was signing off, she said, "Be kind to each other." If I hadn't already been slayed by the previous comment, that one pretty much killed me. I thought of a recent conversation I had with a loved-one in which I might have been over-the-top and not as forgiving as I might have been in other times, even if a reaction was duly warranted.

As dusk is setting, a fire rolls in the wood stove. Michael is fixing salmon and sushi rice for dinner. Thankfully, a dear old friend who lives alone in a farmhouse on the edge of town, and whom I've been worried about, finally responded to me saying, among other things, that he is fine.

Love in the time of coronavirus is wild.

4.01.2020

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

3.28.2020

truth be told

don't diss me. don't dismiss me. don't chide me. don't deride me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry. those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

3.26.2020

strange world

It's a strange world when ice rinks are made into ad hoc morgues, when conference centers become makeshift hospitals. Strange to see movies depicting throngs of bodies packed together. Already, that seems so ancient and alien. Strange to feel alone in a place where so many good friends live within minutes. Strange to lie in bed and wonder if the virus will spare my kid.

These past few days I wonder if Calvin may be feeling the strangeness, the heavy-chested, desperate anxiety of it all. He's not going to school. His nurses aren't coming to work. Life is off-kilter. Maybe his craziness is "just" that a seizure is coming. But Jeezus, he's been off his rocker the past few days. 

A friend from my years in San Francisco wrote to me:

I just wanted to touch base with you, as I am growing a bit concerned. It may be my imagination, but my sense from your posts is that you are feeling increasingly desperate, depressed and isolated.

I wish I could be there to give you a hug—and a much deserved break.

I’m here if you want to talk :)


I wrote back telling her that she'd been sweet and not wrong, that I'd had a bad day yesterday but that today is better what with the sidewalks clear and the snow mostly melted. I said that it does feel more isolating to have lost the ability to do the few precious things we were able to do with Calvin. I added that our lives have not changed much compared with most people's, and that maybe our experiences are more similar now.

It's a strange world to know all your favorite cities and people are on lockdown. Strange to speak on the phone with a loved one in hospice while looking at him through his kitchen window. To avoid people on the sidewalk. To no longer gather with friends over dinner. To not want others to pet Smellie, to put her on the leash when someone is coming. To wonder who in our circle of friends might succumb to the virus.

It's a strange world when one mother's child or sibling or parent is worth more than another. Strange that the wallets of oligarchs seem to take precedence over the ability for some to put food on the table. Strange and lamentable that, in a pandemic, so-called leaders don't hold themselves accountable for past mistakes, for present missteps and neglect. Strange when others don't see through the charade. Strange when wars are fought in the name of gods. Strange when pious people worship the shockingly ungodly.

The hospital set up at a pavilion in Ifema, Spain convention and exhibition centre in Madrid. Photo: AFP

3.24.2020

snow day blues

When I take showers I turn on the baby monitor so I can hear Calvin in his room down the hall. He plays in his safety bed with a bunch of his favorite toys—Sesame Street cell phone, crocheted rabbit rattle, Oball football and other light-up, musical toys. Today, he is doing all sorts of vocalizing—screeching, grousing, cooing. When he coos he sounds like a big baby, which in ways, though he is sixteen, is just what he still is. When I hear his happy sounds, I imagine how awful it would be if he got sick. I feel my eyes sting and well up with tears wondering if we'll be able to fend off this flu.

Last night we got about a half foot of heavy snow. I wish Calvin and I could go outside and build snowmen and women and make snow angels. I wish we could go cross-country skiing at the fields and through the woods. I wish I could feel safe taking him to the grocery store, which is one of the two places he likes to go. The other is Cafe Creme, which is closed to indoor seating but, like many local establishments, is offering food and drinks to go.

Hopefully the town, which has been practically shuttered, will clear the sidewalks soon. Hopefully the snow will melt quickly; Calvin cannot walk well in deep snow or slush.

This coronavirus shit is getting real. The projected numbers are sobering at best. There is a massive shortage of ventilators and masks for sick people and health care workers. GOP senators are trying to funnel money to their rich constituents and corporate backers, twisting the truth to fit the absurd narrative their so-called leader tweeted so recklessly, "Democrats want the virus to win," when what Democrats are trying to do is to get a win for the average American worker. The Occupant is still lying to the American people, trying to save face, shifting blame, playing down the pandemic to secure his reelection and the solvency of his private businesses. Too many Americans put their faith in the Charlatan instead of in the scientists and experts who know and tell the truth.

I towel off and get dressed. Calvin is "singing" from his bed. Though he sounds happy for now, I feel sorry for him and for us, what with little to nothing to do. I imagine he is bored, but I guess that should be the least of my worries. We've got to take it one day at a time, even when it snows.

On my way to the fields

3.21.2020

sheltering in place

Sheltering in place. Stuck at home. Missing school. In our current circumstance, we can't go to the movies. Can't browse our favorite stores. Concerts and birthday parties and day camp and sleepovers aren't options. Can't go out for family dinners at our favorite restaurants. Can't do play dates. Can't go to the playground to swing or climb on the equipment. Can't go on vacations or spend the night away while someone else babysits. Not yet, anyway.

Stuck at home for what is and will be hours and days and weeks and months on end—for the foreseeable future considering the state of things. We can listen to music, turn on the news, call friends, read a few chapters, write a little. We can do house chores, take naps and long showers, enjoy films, go to bed early. We can watch our offspring play alone. We can cook and eat and drink. Weather permitting, we can take walks in the neighborhood. We can go on long car rides. We can stroll through the woods. Mostly, though, we're stuck at home.

Visiting friends for family dinners isn't an option. Going to the grocer is a challenge. They're frequently out of what we need, often when we need it most. When we do go, other shoppers regard us with suspicion. We have to steer clear of touching certain surfaces, especially since some of us so often touch our face and mouths.

Times are strange. Life is hard. Welcome to our world.

As the parents of a non-verbal, incontinent, impatient, unsteady, severely developmentally-delayed teenager with autism and frequent seizures who is often loud, can't sit still or play with others, touches and mouths everything including his fingers, and who sleeps in a special safety bed, we've lived the way I've just described—stuck at home, mostly, with little else to do—for sixteen years. Thankfully, in great part because of the love and support of others, I've survived and remain mostly sane.

That's why I'm convinced, in this strange and scary time of coronavirus, you can too.

Call me if you need a pep talk. I'll most likely be at home.

Photo  (screenshot) by Michael Kolster

3.18.2020

love in the time of cornavirus

nap in the sun on the green couch with my child. rest heads together. love his calm, weight and warmth. hold him in the wake of his seizure, arms around his waist under a comfortable cover. get extra sleep if possible. take in blueberries one by one, noting the tart ones from the sweet. facetime with friends at cocktail hour. build a fire in the wood stove. watch its blue and yellow flames as they roll. light a few candles. love them. drink a glass of wine slowly. take long walks with smellie in the woods. fascinate over the strange state of things. love those willing to help. remain calm, yet vigilant. hope and expect the same from others. know that some things are out of our control. care about neighbors. resist the impulse to hoard. try new recipes. focus on music. contribute to local establishments and hunger banks. study a familiar photograph and its beauty as if for the first time. regard the outdoors—watch limbs quiver, see leaves unfold in the sun, note the plumping-up of buds, look up and dream on blue sky and passing clouds. remember to forgive. love the morning frost glimmering on a landscape absent of snow. love the crunch of it underfoot. delight in spring coming. listen intently to a robin's chirp. find the zen of things—washing hands, wiping door knobs, washing apples, folding linens, mopping floors. study loved ones' faces. embrace their changes. hunker down when it's cold. smile at strangers. empathize with those most fragile and afraid. embrace loved ones as if there is no tomorrow.

3.13.2020

dear students

The field behind our home belongs to Bowdoin College. On its eastern edge sits a small dorm which used to be a retirement home. In the center of the field is a picturesque, one-room schoolhouse painted all white and raised up on cinderblocks. It has been vacant for decades and now serves as a toolshed of sorts. Every year from August to May, we watch students come and go from classroom to dining hall, to dorm. In the spring they play frisbee in the back field, or lay on blankets in the sun and study. On weekend nights they walk in groups to and from parties. In the spring and autumn, I wave at them when I'm watering the garden as they stroll past. I learn to recognize and get to know some of them. I come to love others.

A couple of nights ago we got the news that the college students will not be returning to school after spring break because of the coronovirus. Their belongings will be put in storage or sent back to them at home, wherever that is. They'll spend the break with their families—at least those who have families—and some of them will come back to collect their things in a few weeks. Those who cannot return to their homes due to hot spots of coronovirus, like Italy, are allowed to stay on campus where they'll be mostly alone, though fed and supported. Classes will resume online somehow.

The absence of close to two-thousand students in this fairly small town is already palpable, and will be for some time to come. We won't see them at local establishments. We won't pass them walking to athletic practice, won't hear them laughing and cheering when the weather warms, may not enjoy seeing them in them dressed in their spring best and caps and gowns for graduation. Without them, ours will feel a bit like a ghost town. My heart already longs for them. Because of Calvin's disabilities, I grieve the fact that he'll never go to college. Instead, and though it's bittersweet, though mostly sweet, I imagine him in some of them.

At then end of every semester Michael invites his students over for dinner. It has been a tradition since he began teaching photography here twenty years ago. At those gatherings I look forward to communing with the students. Some of them I recognize from previous dinners here, their interest in photography as a means of looking at the world and themselves differently—as taught so masterfully by my husband—inspiring them to take advanced classes. Every semester there are a few who take the time to visit with me and to ask about Calvin. Some of them have made dinner for me and Michael at their apartments. Others invite themselves over here. Some have joined us for Thanksgiving. One dear has let me crash for a weekend at his family's home in Manhattan and has fed me at their restaurant. More than a handful follow my blog, for which I am most grateful. A few keep in touch after graduating by writing, calling and visiting. Some my heart has silently adopted. As if a child or brother of mine who lived with us for a stint or two, one former student's premature death I will mourn forever, just as memories of him I'll savor as life gifts. I don't remember all of their names, but some of my favorites come to mind—Arnd, Ivano, Nick, Emma, Hector, Katie, Ouda, James, Aspen, Moira, Micah, Raisa, Margot, Ahmad, Seth, Emily, Henry, Jude, Samantha, Hassan, Macy, Daniel, Victoria, Pawat, Ben, Meghan, Jean-Paul, Octavio, Drew, Blanche, Salam, Maina, Brennan, Theo, Garrett, Izzy, Darius, Trevor, J.P., Alice, Nevan, Preeti, Colin, Nate, Niles. We miss seeing all of them—all of you. I hope I didn't miss anyone.

Hopefully, sooner rather than later, we'll get on top of this coronovirus and limit its spread. The Occupant and his administration did not get off to a very good start, so its likely to get far worse before it gets better. Michael and I fear what it might mean for classes next September. I hurt for the students, especially those meant to graduate this May. But these Bowdoin College "kids" are remarkable and no doubt resilient. Others like them—so hopeful, curious, talented, generous, thoughtful, industrious—I rarely encounter.

Dear Students, call if you want. Stop by anytime, unannounced even. Try not to be strangers. We are here for you if you need. You are on our minds and in our hearts. Please know that we love and miss you.

May 2015

3.10.2020

the state of things

When I reached him his skin was gray as flagstone, his sweet face twisted and ghoulish. He was in his bed on his back and seizing. It had been ten days since the last ones and, like the full moon to which his fits often seem tethered, I had anticipated its arrival. I felt it in his hot skin, heard it in his agitated grousing, saw it in his eye-poking, his heroic attempts at sun-staring and restlessness at bedtime.

As Michael and I sat down to the first of his famous home-cooked meals since having spent over two weeks in Paris, I predicted Calvin would have a seizure within the hour. I wish I could say that I was wrong.

After Calvin's grand mal, I crawled into bed with him, noting the earliness of the seizure. Three hours later, just before midnight, he had a repeat. This time I gave him extra THCA oil. I had a hard time sleeping with him. The bed is getting too small for the two of us to share. Nevertheless, I kept vigil, and at five o'clock he woke to a focal seizure, the kind I haven't seen him have since November. It was on the long side of things, and I wondered if it might turn into a third grand mal, so I slowly syringed in his morning THCA oil which seemed to break the spell.

Lying awake next to him, as usual I thought about the state of things in the world. I lamented the coronavirus and its subpar handling in this nation. I love, yet wondered about, the mild early spring we're having. I'm eager to know who is going to win the Democratic election, wishing the two old White guys would drop out and endorse Elizabeth Warren. I considered Calvin's aides at school who have the difficult task of taking care of someone so enigmatic. I wonder if they resent my efforts, advice and cautious criticism meant to make caring for him easier and safer for everyone.

My boy is home from school today. Not eating or drinking much of anything. Very quiet and mostly still. He's having too many grand mals of late—eight in January, seven in February, eight in the past thirty days or so. I asked his neurologist to finally prescribe Epidiolex, the plant-based pharmaceutical cannabidiol (CBD) oil. I told the doctor I would start Calvin on a tenth of the recommended starting dose, i.e. 0.5 mgs/kg instead of 5 mgs/kg of his weight. With CBD, I believe less is sometimes better. Insurance has approved it. We should be getting it this week. I'm hoping it works because I've pretty much run out of reasonably-promising back-pocket options for Calvin's therapy.

As I write, I go back to thinking about the troubles this world is facing: climate change, viruses, stock-market plunges, hunger, hoarding, reckless presidents, gross inequity, trolls, bots, election meddling. But then I remember the photographs of Paris parks Michael brought back to show me. I go to his website and look at more. I dive into them readily, forgetting the regrettable and inevitable, clinging to hope, hoping for change. Then I remember, spring is coming.

St Cloud, 2017 Photo by Michael Kolster

3.06.2020

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

3.01.2020

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.

2.29.2020

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

2.21.2020

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.

2.13.2020

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.

2.11.2020

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.

2.06.2020

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.


1.30.2020

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

1.27.2020

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.

1.23.2020

the kid

The kid is getting big. I remember a time when he was little(r) and I worried and wondered if he'd get super big and whether—not knowing his own strength—he might snap my neck just hugging me, like Lennie did to that gal in Of Mice and Men. Though he's only 4'9" and 73 pounds, he can still (innocently) pack a punch with his flailing arms, and fists.

He's also nearly outgrown his johnny-jump-up, and I'm not quite sure what to do. I might be able to stitch a few extra inches onto the nylon straps supporting the padded seat, but I'm not sure they'll hold. Readers, any ideas for me?

1.18.2020

weekend update

At noon, it's fourteen degrees out. Last night it got down to two. We're sick as dogs inside this lonely house. Sidewalks are icy. While walking Smellie yesterday the windchill factor was well below zero. I feared my jeans would freeze to my kneecaps. The dog has become a little bit gimpy and we don't know exactly where in her leg it hurts, or why. We think it's arthritis as the result of Lyme. Can't get outside today to walk her since I don't have a nurse to watch Calvin.

Michael is on his way home from being gone for nearly twelve days. I hope he brings Hawaii's sun and warmth along. The other night a friend asked if I resented my husband's travel. I told her only sometimes. It's his work, and it makes him happy and he misses home and wishes I were with him, with or without our boy. Alas, because of Calvin, it can't be so.

While Michael has been gone, his parents have been regularly checking in on me by phone. Several friends have walked Smellie when I can't, braving the wind and cold. A dear friend and his daughter shoveled my snowy driveway. One lovely dropped by some homemade spaghetti and cookies. Another brought me tulips, English muffin bread, tea, honey, Meyer lemons and Honeybell oranges. Still another showed up with a warm loaf of lemon poppyseed cake. I'm so lucky to be taken care of by friends in this small town.

Last night Calvin had a grand mal seizure. Strangely, I didn't see it coming. It was early enough in the night that I feared he'd have a second one like he did the past two times. So, I gave him a little extra homemade THCA oil and spooned with him. He didn't have another one.

I hope to get some sleep tonight. I feel wrecked, with achy eyes and a voice which is nearly gone. Thankfully, Calvin is in a mellow mood, thus has been pretty easy to take care of. Of late, I've seen his behavior trending toward more calm. From his room next door I hear him yawn. Time to try a nap of my own while Smellie is out walking with friends. Soon she'll be on her way home.

From the field behind our home.

1.11.2020

double whammy

Blame last night's double whammy on the arc of the full moon. Blame it on a low-grade fever or virus. Blame it on sleep deprivation or anxiety, the barometric pressure or gravity. Blame it on a lack of fluids, a dip in blood sugar, pressure or O2. Blame it on the protracted effects of benzodiazepines which should have never been prescribed for my three-year-old. Blame it on the weight of the world, the scourge of hateful rhetoric, the insanity of deceit and greed, the power of willful ignorance, the threat of war. Blame it on injustice. Blame it on the patriarchy. Blame it on the pharmaceutical industry. Blame it on the superficial solace of the stock market. Blame it on yesterday's regrettable IEP. Blame it on the vacuum of Daddy's absence. Blame it on the warm front coming, and being trapped indoors. Blame it on his brain's messed-up pathways. Blame it on growth spurts and raging hormones. Blame it on the vile nature of epilepsy. Blame last night's two grand mals on anything and everything.

Calvin's grand mal seizure from eight years ago; some things regrettably never change.
             

1.06.2020

weight of the world

Saturday night, I listened to my son wail until he was nearly hoarse. I watched him writhe in some unknown pain. The event, whether cramps, hallucinations, night terrors, or most likely migraine, went on for five hours. None of the measures I attempted—acetaminophen, ibuprofen, THCA oil, CBD—helped to quell his misery.

Downstairs, our dinner guests kept me sane with their loving support through a difficult situation. Hell, we even had some laughs in-between sips of wine, bites of Michael's melt-in-your-mouth porchetta, mashers, green beans, and hearing Calvin shriek. It didn't help for me to remain upstairs with my boy; he's getting big, so someone's liable get hurt if I were to crawl into bed with him, though I did make one failed attempt. Luckily, he's safe in his padded, paneled, netted-canopy bed, able to flop around into positions most comfortable for him. At one point, during my frequent checks on him, he had drifted off briefly while sitting up.

Calvin finally fell asleep close to eleven. Regrettably, three hours later he had a grand mal followed by another one at six a.m. I can't remember the last time he had three serious events in less than twelve hours. He had been doing pretty well lately.

As I laid next to Calvin in the wake of his first seizure, I wondered if perhaps he feels viscerally the weight of the world, causing him anguish or triggering seizures. I thought of the damage our reckless president is doing to the already volatile Middle East. I feared for the animals and people in peril from Australia's rampant wildfires. I worried over a friend who is suffering from late-stage cancer and the side effect from its heinous treatments. I fretted over recent hard conversations with a dear friend regarding prejudice, judgment, the virtues of political correctness, and the hurt felt by both of us. I wondered if Calvin could feel me.

Then, after spending too much time brooding in bed next to my son, I remembered a girl I had met at the grocer earlier in the day. A thin, blond, sweet seventh grader, she had smiled shyly and waved, saying, "Hi Calvin," as we passed her in front of the cold cut case. Holding onto Calvin's hand, I stopped to return her greeting, introducing myself to her father. She explained having met Calvin last year while visiting his junior high school's Life Skills class where she made friends with another student very much like our boy. It dawned on me who she was and that, a few weeks earlier, I had met her mother and another woman who had come to our door sharing info about Jehovah's Witnesses. At first, I'd been a bit sharp with them; because of Calvin, I'm prone to growl whenever anyone tells me that "everything happens for a reason."

"I am not worthy of my son's suffering," I declared to the proselytizers, my heart pounding with contempt for any suggestion that Calvin's misery is some divine plan, a notion which to me seems no less than sadistic. I went on to explain my disdain for organized religion, my disbelief of a merciful or judgmental, anthropomorphized god, stressing my conviction that the Bible is metaphor written by men to explain the unexplainable and to further their power and control over others.

The Jehovah's Witnesses had been kind and forgiving, respectful of my beliefs. I went on to let them in and led them upstairs to meet Calvin, who was in bed resting. There, we exchanged ideas about god, the afterlife, and hell on Earth. Some of our beliefs seemed to overlap. They were loving to Calvin and most sympathetic to our burden. It was a short visit, and as they were leaving I gave them both hugs, plus my card, which has a photo of me and Calvin printed on one side and my blog and email addresses on the other. Two days later, one of them wrote to me, explaining the discovery that her daughter knew Calvin.

Back at the grocer, I said farewell to the girl. I thanked her for being so kind to Calvin and for making and keeping friends with his former classmate, who is non-verbal, developmentally delayed and seizure-prone, just like Calvin.

"You're going to save the world," I told the girl, firmly believing in my assertion that this gentle creature standing before me in boots and a little overcoat, this old soul with wavy blond locks swept back into a bundle, doesn't have a mean bone in her body and loves everyone, just like Calvin.

Lying next to Calvin that night after his miserable pain episode and first of two seizures, and holding the images in my mind of the girl's rosy face and that of her mother's, I drifted off to sleep with the weight of the world—Calvin—in my embrace.

Years ago, photo by Michael Kolster