weekend update

At 3:30 this morning, Calvin had his first seizure in three weeks. Since beginning the drug, Xcopri, in November of 2021, he has been enjoying "longer" stints, including one seizure-free span of forty-five days. We haven't seen any focal seizures for over a year. So, despite a trip to the emergency room last April when he broke his hip at school, then having to undergo surgery to install three metal screws to fix it, and despite another trip to the emergency room on New Year's Eve for an excruciating case of cholelithiasis (gallstones), plus gastroenteritis and aspiration pneumonia, Calvin looks to be heading for his best seizure control in years.

As far as the gallstones go, Calvin had an endoscopic retrograde cholangiopancreatography (ERCP) procedure at the hospital on March 1st. After waiting for three hours in a type of holding cell, he again went under general anesthesia. The procedure, which involves the insertion of a scope into his esophagus, went fine, though the physician did not find the gallstone that was allegedly stuck in his common bile duct. Instead, what the doc found was "sludge"—bits of stones and/or fat, perhaps—which he cleared out. He also widened the sphincter where Calvin's common bile duct enters the duodenum, so that future stones can pass more easily into the intestine and are less likely to block the pancreatic duct, which can result in serious, sometimes lethal, consequences.

So, I guess one could say that the ERCP was successful. Calvin is eating well again and thankfully has not exhibited the kind of pain we saw him experience in December and January.

So, that's the update, folks, except to add that hopefully Calvin's seizure this morning will turn out to be a one-off.

Thank you for your thoughtfulness and well wishes. As always, they mean the world.

Calvin waiting patiently to be prepped for the ERCP

hope and trepidation

Tomorrow morning, Calvin and I will finally make our way to Maine Medical Center for his endoscopic retrograde cholangiopancreatography (ERCP) meant primarily to remove at least one gallstone that is stuck in his common bile duct and which probably caused the excruciating waves of pain and elevated pancreatic enzyme that landed him in the emergency room on New Year's Eve. Calvin has likely needed this procedure for weeks if not months, but it has taken this long to get it on the books because—although every radiologist who read Calvin's CT scans and sonograms reported seeing at least one decent-sized gallstone—one of Calvin's providers wasn't convinced. Eventually, the procedure was scheduled, but then Calvin brought Covid home, and we had to postpone the operation a week.

The ERCP is not technically a surgery. It is an endoscopic procedure during which Calvin must undergo general anesthesia. The gastroenterologist—one of only two in Maine who has the skill to perform this operation—will insert a scope through Calvin's mouth into his esophagus to look for ulcers, etc., then go on to remove the problematic gallstone, perhaps having to widen the common bile duct so it passes more easily.

This will be Calvin's fourth time under general anesthesia. In the past, he has faired well, but the risk of dangerous complications is far worse for someone like him who is neurologically compromised and prone to getting pneumonia which, by the way, he was diagnosed with on New Year's Day. The last time Calvin had to have general anesthesia was last April during surgery for the hip he broke at school (a clean break at the base of the femoral head) when his aides let him walk around by himself and attempt to sit in a chair, which he most regrettably though not surprisingly missed (his vision and coordination are not good).

It is hard to put into words how gut-wrenching and nerve-racking it feels to watch your sweet, nonverbal, cognitively impaired child be wheeled down a hallway with a bunch of strangers into an even stranger room (operating rooms are cold, chrome, sterile places) without any understanding of what is about to happen or why, and without mom or dad by his side to comfort him. To say the experience is worrisome is an understatement. It is the cause of great trepidation.

And so, using the gastroenterologist's patient portal, I wrote to the physician who will be performing the ERCP:

"can i stay with calvin until he goes under general anesthesia?"

The doc replied within minutes, "yes. you can stay with him."

I breathed a sigh of (some) relief.

With any luck, the procedure will go off without any hitches, Calvin will make it safely out from under the anesthesia without aspirating or suffering from too much irritability, and we'll be home sometime tomorrow late afternoon or early evening. Hopefully, Calvin will get some immediate relief from the prolonged pain and discomfort that this gallstone has likely caused him and, hopefully, he'll be protected, at least for a while, from the dangerous sometimes lethal effects that gallstones can cause.

Sadly, Michael cannot join us because it has not yet been ten days (hospital protocol) since his Covid diagnosis, and because he'd miss another day of teaching; I urged him into staying behind. Thankfully, one of my besties, Barbara, is going to drive me and Calvin to the hospital in Portland, and another bestie, Matty, will shuttle us back so I can attend to Calvin's needs on the drive home.

Until then, cross your fingers and toes. 

Michael, in white, escorting Calvin as far as allowed before Calvin's hip surgery last April.

reason and being, purpose and meaning

I watch as a boy of five or six falls off of his bicycle. Somewhat remarkably, he lands squarely on his hands; his feet quickly follow. Having escaped injury, he rises and claps triumphantly, then begins to do a goofy, self-styled boogie, which is perfectly annoying to me. The caption on the video reads, "This should be your reaction when life challenges you."

For starters, I'm not a fan of the word, "should." I try not to "should" anyone, including myself. The rest of my cynical response to the video was—like most things—informed by my profoundly disabled, nonverbal, seizure-prone son. Calvin had just come off of a very shitty few weeks which began with back-to-back grand mal seizures, followed by waves of excruciating pain of unknown origin, the likes of which reminded me of Hollywood torture scenes. Ultimately, Calvin landed in the emergency room on New Year's Eve with an agonizing case of viral gastroenteritis and/or a problematic gallstone, which—after reviewing X-rays, a CT scan, and several blood draws taken at ungodly hours—the doctor said had likely caused the aspiration pneumonia in Calvin's left lung. We were released from the ER the following morning, and though I was relieved to be out of there, I didn't feel like dancing a jig; I felt only grateful that it seemed we may have dodged the latest bullet in Calvin's lifelong barrage of them.

Calvin reminds me daily that not everyone is equipped or inclined to celebrate or give ourselves high fives after life's nasty pitfalls, even if we eventually land on our feet. Sometimes, some of us come away from challenge and hardship feeling confusion, guilt, insecurity, anger, angst, resentment, exasperation, despair. My first reaction to the dancing boy was to acknowledge that not everyone is sailing along in life in the first place, or lucky enough to avoid misfortune such as hunger, war, poverty, displacement, abuse, injustice, depression, the death of a child, or one born to a life of profound physical and cognitive limitations and miseries, like Calvin. Call me a Debbie Downer for criticizing what some might consider a harmless, light-hearted video. I mean, I get the gist, and I'm generally an upbeat optimist who sometimes even welcomes challenge, however, I look at certain subjects through a more serious lens than others.

The video also reminded me of the countless times people have told me that everything happens for a reason. Though the sentiment is meant to be comforting, I generally respond by disagreeing, then go on to explain my preference for the notion of gleaning great purpose and meaning from life's hardships (a practice which can also be elusive to some) as opposed to there being some mysterious reason baked into every awful thing that happens. If I probe, some folks claim that bad things happen to teach us lessons. I usually respond by telling them I am not worthy of my son's suffering. Others say we can't know the reasons for mishaps and tragedies, but that God has a plan. I'm always left wondering: if there is an omnipotent god with a plan for everything, why does it so often include godawful misery, and how is that not deeply disturbing if not unthinkable? Would an all-powerful god orchestrate every little scrape and bruise I get and/or the immense suffering my son endures? Does God stage and sanction starvation, war, genocide? What kind of god has a reason—and what in God's name could that reason be—for the torture of "his" beloved children at the hands of others, or from excruciating illnesses? And if God isn't responsible for orchestrating horrors such as mass shootings, catastrophic fires, floods and earthquakes, then why doesn't "he" rescue us from suffering? Even we puny humans will do virtually anything in our power to save our children from pain. Why doesn't God? And if there is a reason for everything, what does that say about the notion of free will? Lastly, some people say God is testing us, and my immediate response is to ask: for what purpose? To what end? Is God conducting some test of fidelity, and if so, what deep conceit does that reveal? And what would be the point of testing us, knowing we are impossibly fallible beings?

I've found myself ruminating over the bicycle-boy video and related conversations for weeks, and I'm taken back to my childhood. Despite being raised Catholic, I began doubting the existence of a merciful, omnipotent god when my best friend's two-year-old sister nearly drowned in their nearby swimming pool. I had been outside when I heard the dog barking and the mother discover her baby girl lifeless in the water. I had never heard a grieving human shriek and howl so animalistically. She fished her daughter out of the pool and resuscitated her. The child survived, but was in a coma for at least a week and emerged from it no longer a toddler, having lost every one of her acquired skills. Her recovery, while not utterly complete, took years. I'm surprised her mother survived the ordeal, and I wondered if she felt as if God were punishing her for some petty transgression. It didn't make sense to me that a merciful god would allow any of "his" flock to suffer and grieve so deeply. It all seems so utterly senseless.

In continuing to ponder the theory that everything happens for a reason, I wondered if maybe that reason is merely that we exist. Perhaps it's as plain and simple as that: we exist, and therefore things happen to us. It seems reasonable that all things great and small, as in nature—rain, sunshine, hurricanes, earthquakes, moss growing on trees—just occur without any divine reason. In other words, as the saying goes, shit just happens. It makes sense to me—and frankly is far more comforting than the notion of a god with a secret plan sitting idly by while we are tormented—that our every move isn't governed, decided, judged and orchestrated by a god. And, too, maybe overcoming life's nasty challenges and curveballs isn't always reason for smug celebration, but rather, a time for reflection, gratitude and humility, especially considering so many of our fellow beings, through no fault of their own, live in a world of misery.

Photo by Michael Kolster, August 2021

nineteen

Nineteen years ago today—six weeks before his due date, two weeks after a sonogram revealed an alarming absence of white matter in his brain, and a week before a scheduled cesarean at Boston's Children's Hospital—Calvin came into the world during an emergency cesarean at Portland's Maine Medical Center—in the middle of an ice storm. I guess that's how he rolls.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children are provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three and a half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after nineteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for nineteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Last year, instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I thought about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects that make him so irritable at time, and impossibly restless. 

This year, the day began as most do more recently, which was with a long and strong embrace from Calvin, including mutual back rubs, as he stood in his pajamas after I helped him out of bed and before I changed his soaking diaper and onesie and got him dressed for school. It has been nine days since his last seizure having avoided one on the full moon, so we have that to celebrate, too.

At nineteen, my sweet Calvin still cannot utter a word, put on his own socks and shoes, eat independently with a spoon, follow most instructions, turn a door knob, read a book, choose items at the grocery store, calm his body or be by himself. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mess of motherly love. I guess, in that sense, we're no different than any other mother and child.

other

Everywhere I go, I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer, little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid, I would’ve responded sarcastically, “take a picture, it lasts longer.” But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.

At twilight several weeks ago, I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a turkey. I noticed a driver in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me, and then, when I caught her glimpse, I smiled. She didn’t smile back, just stared at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.

Then, there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hands as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes, hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often, they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s watery eyes sometimes, and it makes me love him that much more.

I’ve always felt different from the rest of my own family in most ways. Michael too. You know, the black sheep, the weirdos. And we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis, see life through yet another filter, one that if our child were healthy, normal, we might never have known. Each year living with Calvin strips back another layer—like some withered bark or faded, brittle skin—of what we thought we knew but didn’t. Though life is hard, it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.

There is a beautiful scene in the Terrence Malick film Tree of Life, set in 1950s Texas, where a mother takes her young sons to town. Crossing the street behind her, the boys pass a swaggering drunken man who tips his hat to them. The brothers mimic him laughing, cutting zigzags and bumping into each other as if inebriated themselves. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel, dragging one foot nearly on its ankle. They stare but do nothing, noting the peculiar but sad circumstance of his disability and, perchance—in their minds—noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Their mother lifts a drink from her thermos to his parched lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?

Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up being singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other.”

new year's eve

Calvin and I spent New Year's Eve in the ER. It was the first New Year's Eve in decades that I've stayed awake past midnight! Calvin and I both got some sleep, but were interrupted numerous times at ungodly hours for exams, IVs, blood draws, vital signs, a CT scan, an X-ray, and an unsuccessful attempt at getting a urine specimen. Through all of it, my ailing, tired and uncomfortable child was a superstar.

Earlier that day, we went to see the doctor because Calvin had been experiencing waves of excruciating pain—pain so bad it seemed as if he were being stabbed in the gut repeatedly. The doctor ordered a blood draw. Later that night, she called to tell us that his pancreatic marker, lipase, was three times what it should be. She advised us to go to the ER immediately for possible complications of acute pancreatitis. The blood draw at the ER, however, showed a normal lipase level, and the CT scan indicated that his pancreas looked fine. The ER doctor noted, however, that there were a handful of gallstones she said we should keep an eye on.

The CT scan also revealed a case of aspiration pneumonia in the lower part of Calvin's left lung, possibly caused by regurgitation stemming from his case of viral gastroenteritis. They sent us home the following morning with a prescription for a two-week course of antibiotics. Still, my gut tells me that his pain may be stemming from the gallstone(s).

Despite the exhausting array of tests and interruptions, the care at our local hospital ER was amazing. Those folks work their asses off, only to be abused by rude and unruly patients (one man was screaming at them in the hallway in the middle of the night. My guess is that it was about wearing a mask. I feared he might get violent.)

Right now, Calvin is safe and sound in his cozy bed in hid dad's arms with his favorite toys. Since coming home, I've been able to go for daily runs. On New Year's Day, despite feeling like hell, I was grateful I could run out at my beloved Pennellville on such a beautiful, misty and balmy morning. As I ran, I thought about the hell we regularly go through with Calvin—some Hades worse than others. But in later recounting New Year's Eve to Michael, who had finally left us in the ER around eleven o'clock that night at my urging, I realized how amazing the whole experience was. With tears in my eyes, I related to Michael how the CT-scan technician, Matt, had put the lead vest on me as if he were helping me with my jacket at a dinner party. His concern for me and Calvin was palpable in the grace and gentleness he exhibited.

I went on to ponder our fortune at being admitted to the ER by my dear friend, Michelle, who is a nurse and whose daughter, a classmate of Calvin's, is very much like him. She gave me tons of hugs and assured me we were in good hands. Also, upon arriving at the ER, we were greeted by a kind, elderly gentleman. I don't remember his name, but while we waited with our limp and listless boy slumped in his stroller, the man approached to visit with us. He wondered, based on having heard me say our address, if we might be affiliated with nearby Bowdoin College. We told him that Michael teaches photography there.

"My son used to teach there," he replied, then told us his son's name, which didn't sound familiar.

"He died eighteen years ago ... from cancer," the man said, and as I expressed my sorrow, tears welled up in his eyes.

He went on to mention his daughter-in-law, who also teaches at the college.

"Yes, we love her! She has donated many times to epilepsy research on Calvin's behalf!" I told him.

Just then, a bed in the ER became available, and so I gave the man a hug goodbye, while wishing we could sit and visit longer.

Later, in reviewing the events of New Year's Eve, I realized, despite its myriad stresses, what a rich experience that night had been. I recognized, that while I wasn't touring Manhattan or Rome or Los Angeles or Iceland, I was having a profoundly memorable experience, perhaps more meaningful than if I were at a party with friends or traveling the world. It became clear that the strangers I met that night really meant something to me intimately, even if our encounters were fleeting—and maybe Calvin and I meant something to them.

Slowly, Calvin is recovering. He's drinking fluids again and taking a bit of food—applesauce, banana, dry toast and, today, nonfat yogurt. His bouts of pain have mostly passed. We will take him to see a general surgeon tomorrow to discuss his gallstone(s) and whether he needs to have his gallbladder removed. I hope not.

In the meantime, as I spend most of these days nursing Calvin—changing his diarrhea diapers, taking his temperature, giving him meds, offering fluids and food, cradling him in my lap as he sleeps—I'll continue to ruminate on the manner in which we rung in the New Year, which, no doubt, I'm not likely to forget, except, perhaps, when I run.

riches

A train whistle awakened me, the rumbling of its wheels somehow comforting, yet simultaneously mournful in its reminder that I'll not soon be boarding one and taking it places. Like those wheels, my mind turned in circles with a touch of nighttime angst. What will the future bring? How long will I be confined to this place and this difficult task of being Calvin's mother, nurse, teacher, companion, aide? Will I ever again step across borders to explore great unknowns?

Earlier, at the edge of a bonfire, I stood, fists shoved into my pockets, fighting the cold. The fire at my feet warmed my thighs, Lauren's hot glögg, which I sipped from a glass mug, my gut. Friends and neighbors had gathered to celebrate the solstice. Breaths and words left their lips in frosty puffs. Dried onion skins, charred white, floated up from the fire like ghosts. Jupiter and Mars peered down on us.

Back at home, before the bonfire, my boy had been thrashing in bed, suffering some sort of discomfort. I decided to give him some extra THCA cannabis oil, some drops of herbal rescue remedy, plus acetaminophen. Then, I laid him back down again. The concoction worked to calm him, and he seemed to fall asleep as soon as his head hit the pillow. Worry followed me anyway.

Later that night, as I laid awake listening to the train cruise through a nearby neighborhood, I wondered if I'll have to take care of my son for the rest of my life—or for the rest of his. It's a thought I try as best I can to keep at bay, its consequences daunting—the thought of this traveler in an immovable life rooted in what has already been two decades spent in the same nation, same state, same town, rarely escaping in over eighteen years to California, New York, Seattle. The alternative is just as frightening.

And then came yesterday's new moon and raging storm, which brought high winds and sideways rain. In just hours, the temperature plunged from fifty-four to just fourteen degrees. The power went out in the afternoon. Luckily, last year we got a generator, so we had light, refrigeration and heat. Still, I was awake last night from midnight until after three o'clock a.m. worrying about the thousands of folks without power and heat for their homes. I padded downstairs to check my phone in case any neighbors had texted me looking for help to warm their bones. Thankfully, it seemed everyone was safe and sound.

When I crawled back into bed, I was reminded of the train I heard on the night of the solstice, and the anxiety and self-pity I had been feeling about our impossible situation with Calvin. I thought about the isolation and limitations that come from caring for Calvin, but as I thought further on it and considered our fortune to be warm and dry amid the crazy wildness outside, I began to see the riches that have come with having had Calvin. Had it not been for him, I might never have begun writing. Perhaps I'd never have begun quilting, or baking again, or running. No doubt, had we not moved to Maine where he survived—against nearly every odd—his premature, medically-complicated and fraught birth, I might have missed developing scores of deep and loving friendships with doctors, nurses, farmers, carpenters, teachers, ed techs, mothers, fathers, marathoners and other runners, professors, deans, students, artists, other writers, journalists, restauranteurs, film makers, builders, bakers, octogenarians, and dear, whiskey-swilling neighbors.

So, in the early morning hours of our secular Christmas Eve—a holiday to which Calvin is oblivious—as the storm still tossed around huge boughs of white pines—the same ones I rested my eyes upon in the first days of writing this blog twelve years ago—I realized how ridiculously rich my life really is, even in the confines of these four walls with my little ball and chain.

Photo by Michael Kolster