3.25.2019

nature nurture

After three weeks of seeing my son endure all but a handful of days with seizures, I stepped into nature. I find being alone in the forest, seeing and smelling the sea helps soften the edges of any angst I feel. Yesterday, I hiked an hour along a wooded path blanketed in needles and skirted by green ocean inlets where patches of sun filtered through the white-pine canopy. Upon emerging into a sloping, golden field, I got in my car and drove a few miles further south to the end of Harpswell Neck where the Giant Stairs have views to open ocean. Above me, the sky shown vast, blue and swept with clouds. Though we are still two months away from full foliage in this region, the skeletons of shrubs displayed their naked beauty.

My time spent outside on what was the first truly mild March day in Maine proved vitally restorative, because Calvin suffered his fifth grand mal of the month last night, only three days after a previous one. I think that the nature nurture I'd gotten earlier helped to cushion the blow of hearing my boy scream, seeing him stiffen and convulse, vomit and bleed, then whimper as softly and sadly as the lonely sound of wind creaking the trees.

3.24.2019

march madness

Eleven consecutive days. That describes the spate of seizures that started out this month. On sixteen of twenty-four days in March, my son Calvin has suffered at least one kind of event—grand mal, partial complex seizure or pain/night terror episode. My calendar is plastered in orange, blue and pink highlighter, plus black Sharpie, indicating the different kinds of attacks.

Earlier this month, because of the eleven-day series, I decided to increase Calvin's CBD oil by thirty-percent to see if it would put a dent in them. Nearly two weeks later, the seizures continued to occur on most days and, though the window is a small one, with each increase of Calvin's CBD, the number of days between grand mals appears to be shrinking.

Exasperated, I contacted the maker of Calvin's CBD oil and asked her for advice. She suggested I try a CBD reboot, which means removing all of his CBD for forty-eight hours, then starting back at the smallest dose that it was most effective. For Calvin, that means removing 145 mgs per day, then starting him back two days later at just twenty milligrams, the dose he was on last June when he went forty days without a grand mal. Hesitant of such an abrupt change, I opted first to reduce his morning dose from seventy mgs down to twenty, and his bedtime dose from 75 mgs down to forty, a dose he was on in November when he had the fewest seizures since last June. Yesterday, he was happy and calm, and last night he slept well. In a few days, depending upon what his seizures do, I may decide to do a total reboot.

In the last thirty days, Calvin has had five grand mals, eleven to thirteen partial complex seizures and one pain/night terror episode. It is his worst month-long period since October, and it is on track to be his worst month in over a year. It has left me despondent and wondering again if high doses of CBD can exacerbate complex partial seizures in him. We seemed to see this effect from a previous CBD oil.

Today, Calvin is a bit more amped up than usual. It is hard to know if his agitated behavior is due to the increase in Keppra that we did to account for his recent weight gain, or if it is because he is taking so much less CBD, or if he is already ramping up to have another seizure. Regardless of the source, his behavior is most distressing and, I guess, just the way epilepsy rolls.

Photo by Michael Kolster

3.23.2019

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

3.20.2019

love and light

I'm sending love and light to all of the sweet, innocent kids afflicted with seizures—the scary ones, the kind that hurt, the ones that cause broken noses, bloody tongues, face lacerations, the kind that make them feel as if they're being smothered. I'm sending love and light to the parents of these precious ones who have been cheated by no fault of their own.

I am sending love and light to Hannah, the mother of a little boy named Casey whose seizure I watched on video today and, when it was over, whimpered to his mother, "I don't know why." I wept hearing him breathe, watching his limbs stiffen and tremble and his hands cramp up. I saw my own son in his darling face and wondered if Calvin would utter the same sad words in the wake of seizures, if he could speak.

I am sending love and light to Lisa, whose daughter Emma has been crying for a week since a neurologist advised to reduce her daughters benzodiazepine too quickly.

I'm sending love and light to every mother and father trying their best to navigate the complex and enigmatic world of pediatric epilepsy while sleep deprived, spread too thin, despondent and anxious. I'm sending them strength to challenge and question neurologists. I'm sending courage to trust their guts in the face of doctors who cavalierly pile on medications, downplaying their side effects, aiming for seizure-freedom at nearly any cost, neglecting to consider quality of life.

I'm sending love and light to all the little ones who don't understand what is happening to them, and who have been robbed of a pain-free, care-free childhood.

              
Calvin coming out of a grand mal seizure, 2011

3.16.2019

hell and christchurch

Every so often a stranger, acquaintance, or even a loved one will tell me—usually referring to Calvin and his afflictions—that everything happens for a reason. Years ago, I used to kindly swallow my resentment that anyone would use the trope to justify my son's suffering as some sort of divine plan aimed at teaching me a lesson. Then, as my nerves steeled, I began to meet the notion head on.

Recently, I found myself fielding the topic with someone I am just getting to know. I expressed my rejection of the dogma and my disdain for organized religion. The conversation evolved quite civilly, as I questioned facets of the Bible and her notion of Hell. She was slightly hesitant to admit that, because I'm a non-believer, I will end up there someday. In other words, in the minds of some, Hell is still a real place where unrepentant sinners go, along with, I assume, the majority of the world's population who are Atheists, Agnostics, Muslims, Buddhists, Hindus, etc., even if they're good folks. We spoke a bit further on the subject of Jesus who, despite my secular bent, I think of as having been a righteous dude, someone who I wish more people, namely his followers, would actually embody; the world would be a better place, I feel.

For hours after our conversation ended, I thought on the subject of god and religion. I lamented the fifty Muslim men, women and children slaughtered by a heavily-armed White supremacist yesterday in Christchurch, New Zealand. I regretted some people's rejection that the POTUS is partly to blame because of his maligning of Muslims, vilification of immigrants, regular inciting of violence, and his refusal to denounce White Supremacy.

I was left with many (rhetorical) questions:

What kind of god turns a blind eye to these bloody atrocities? What kind of god neglects the suffering of children? What kind of god would pick one religion over another? What kind of god has such conceit as to damn his own children to eternal Hell simply because they don't accept "Him" as their savior? What about the multitudes of good people who lived before Christ existed, and the billions who may never have knowledge of him? And what happens to shithead Christians? Where do they go?

Pondering those questions about god, while the mist settled on the snowy field behind our house, the wind audibly pressed into the windows, my boy sighed from the room next door, I considered Nature—and came to the same conclusions I always do:

Not one who is merciful. Not one who is just. Not one I can or would want to believe in or trust.

The attack on the Muslim community of Christchurch, while disturbing, was not shocking to me. The White supremacists spouting hateful rhetoric against Muslims, Jews and People of Color are becoming increasingly emboldened to act on those impulses. Their enmity is stoked by bigoted, fearmonging leaders who like to call themselves Christians and who stand to gain from sewing this kind of division. I am once again reminded of the systematic murder of disabled and infirm adults and children like my son Calvin by Nazi's during World War II. Thought to be a stain on the Arian race and a burden to society, they were some of the first in millions of mostly Jews to be exterminated by Fascists under Hitler's rule.

This sickening ideology of White supremacy has never been eradicated. It simply goes from skulking under rocks and in pockets to brazen examples of hatred, violence and bloodshed. It is grounded in abject ignorance. Its zealots exploit baseless fears of other, using scapegoats for their own failings. And, as in the case of slavery and the subjugation of women, they often use God and the Bible as their grounds.

So, perhaps Hell is not a myth as much as it exists on earth in the form of disease, genocide, oppression, war, famine, rape and massacre. Ironically, we even find Hell in houses of worship, and in places with names like Christchurch.

Hands from Hell sculpture, Thailand

3.13.2019

good night

After a twelve-day stint in which Calvin suffered several suspicious events (possible seizures), two grand mal seizures, at least eight partial complex seizures and a two-hour pain/night-terror episode, I decided to increase his Palmetto Harmony CBD oil by nearly thirty percent. My gut and logic agreed that doing so was not very risky, and might serve to thwart some of Calvin's seizures.

Yesterday morning, after his newly increased morning dose, Calvin rebounded well after a grand mal and even went to school. After last night's increased dose, he slept soundly until about two-thirty, when he started getting restless. I laid him back down and covered him several times, but he kept sitting up. Finally, I switched on the light and was able to determine that his diaper was soaking, so I got him out of bed, changed his diaper and took his temp since he felt kind of warm. While doing this, he did not seem seizure-ish at all, and when I laid him back in bed he fell right back to sleep.

When Calvin woke up this morning at six, he seemed pretty good. I did not notice any suspicious behavior, no signs of partial complex seizures such as funny breathing, rapid heartbeat, grumbling tummy, pale skin, panning eyes, fingers in his mouth, or clammy hands. He seemed "normal" for the first morning in nearly two weeks!

This lack of seizure activity in the wake of a grand mal, and having significantly increased his CBD oil is promising. It tells me that the CBD oil is likely not the culprit in Calvin's recent uptick in seizures, though I need more evidence to be convinced. In any case, Calvin had a good night. And though I was awake for almost two hours dreaming of spring, of San Francisco, and worrying about my child, I ended up having a good night, too.

3.12.2019

risk vs. benefit

Despair is sinking its teeth into me again. After three months, each with "only" nine seizures, already this month Calvin has had at least one seizure nearly every morning, including two grand mals. To add insult to injury, last night he had another of his pain/night-terror episodes during which he writhes and screams and cries in bed for hours. I do not know the source of his misery. He cannot tell me what hurts. I have a hunch he might be suffering migraines, perhaps a latent effect from benzodiazepine withdrawal, but I've no way of knowing for certain. There is no soothing him. Acetaminophen doesn't seem to work. Extra CBD seems to lessen his suffering, but not always. In agony, he lunges at me, grabs and yanks my hair. Light flashes like lightening when he bops an errant fist into my eyeball. He kicks and bangs his head against his bed's panel, which I've padded with blankets and pillows to soften the blow. He's like a rabid animal, and I'm in the cage with him trying to save us both.

Finally at ten, after two hours of this misery, plus some acetaminophen and extra CBD oil, he fell asleep in my arms. But I was wrenched awake at 4:50 a.m. to one of his grand mals.

This month's unusually long spate of seizure activity perplexes me. Maybe I can chalk it up to his recent and significant growth in height and weight. Perhaps puberty itself is the culprit. I don't want to believe it is the CBD oil, but I cannot rule it out. I remind myself to avoid fear-based decisions, and to instead look to logic and instinct for guidance. If I consider what seem to be good side effects from increased CBD—better sleep, balance, mood, walking, appetite—and since I know its therapeutic range to be quite broad (between one and twenty-five milligrams CBD per kilogram of weight) I should not be fearful of increasing its dose, which currently is 3.7 mgs/kg of his weight daily, equalling 110 mgs CBD divided into two doses. 

I understand it is within the realm of possibility that higher doses of CBD or THC can trigger seizures in some individuals, but that is also true of antiepileptic pharmaceuticals. The difference, I believe, is that side effects from whole-plant cannabis are likely less harmful, if not beneficial. And so I must weigh the risks and benefits of raising his dose, and not let fear govern my decisions. Moreover, I will not readily submit that these extra seizures are my son's new normal.

So tonight, I will increase Calvin's CBD to seventy milligrams twice daily ... and hope at least some of them stay at bay. 

3.11.2019

love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

3.10.2019

snowy milestone

For the very first time in his life Calvin walked a loop in our backyard while it was covered in snow. Managing to keep him upright as he careened along a narrow path of icy footprints was difficult. A few times we nearly toppled over each other. At one point, I looked down at his face and saw him smile. As we plodded clumsily along, he used his free hand to reach out and pat his favorite shrubs. He seemed happy to be outside in the yard again after so many months pent up indoors.

You may wonder why, at fifteen, he's never done so before. It's partly because he cannot walk in snow boots or rain boots; they are too bulky and roomy for him to manage. Also, his current ankle boots, though waterproof, are not high enough to walk in deep snow. And so yesterday, the snow having begun to melt in the sun and mild temperatures, was a perfect time to give it a go.

I wish I had a photo of Calvin traipsing along in the expanse of white, wish I had a photo of his smile. But I didn't have my camera or phone on me, and so I'll just have to make a note of our special, snowy excursion in my mind.


3.07.2019

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

3.04.2019

out on the ice

The ice on the pond is still two to three feet thick. Pickup trucks park on it. Folks speed snowmobiles and ATVs across its expanse. Fishermen, like my husband, drill holes in it from which to fish.

Thirty-five degrees and no wind to speak of, yesterday was mild. A glorious sun came out from behind the clouds at times. Calvin's kick-ass nurse, Rita, watched Calvin for several hours so I could get out of the house. Michael and I drove twenty miles, then trudged through deep snow to meet our friend Macauley who had set up shop in the middle of Pleasant Pond, which would be considered a lake where I come from. Almost immediately, we began catching fish from eight-inch holes: yellow perch, white perch, crappie, pumpkinseed. Michael caught a hog: an eighteen-inch small mouth bass. It flopped on the ice for awhile—its gaping mouth seeming to indicate its suffocation—until we realized it was too big and small to keep. Michael dropped it back into the hole, watched it float sideways, tail up, before it caught its breath in the frigid water then swam into the shadows.

A few hundred yards from us, a rowdy group had set up a tent and were manning several ice holes. The young men were roughhousing with the giggling kids, picking them up, shoving them and tossing them around. Their happy banter skipped across the snow. Though I was glad to have been unshackled from Calvin for an afternoon, I lamented his absence and all the reasons that made it so—his fragility, his chronic illness, his inability to walk in snow boots, to play and keep warm, his incessant staring at the sun, his incapability to understand what might really be going on.

After nearly three hours on the lake, my feet started getting cold, so we said so long to Macauley, who would spend the next several hours there catching more fish, watching the sun set, and then taking a long walk out on the icy lake after dark. I told him how luxurious that sounded, then I imagined myself—in another life—doing so.

3.01.2019

ninety seconds

Blood pools on my son's pillow as he bites the side of his tongue. His feet shake. His wrists knock. His guts buckle. Ninety seconds, the seizure takes.

In bed next to him, I scoop him up. A pint-sized teenager, he's getting bigger. Must be over sixty pounds by now. The top of his auburn crown very nearly reaches my jaw. But crawling on the kitchen floor and splashing in the tub, he looks quite small. I can still sit him on my knee and cradle him in my arms.

What is lost in ninety seconds of seizing? Time? Brain cells? Emotional and physical elasticity? A year of life? Precious sleep? Dreams? The ability to block the path of the next seizure?

A friend described the making of neuropathways in the brain as centuries-old rivers etching ever deeper ravines into the landscape. I once was told this is what happens each time someone seizes. Neurons carving passages. Repeated patterns becoming habits. Electric currents snaking along paths of least resistance. Firing synapses conducting dreadful symphonies in the brain. Spasming sinews yanking muscle and bone.

What is lost in ninety seconds of seizing? Breaths? Heartbeats? Potential? Joy? Peace? A bit of memory? Sanity? Grace? Hope? Well-being?

What is lost from thousands of these seizures, each ninety seconds?


Photos by Michael Kolster, Christy Shake and Ann Anderson. Drawings by Peter Bruun.

2.25.2019

in my element

I felt nearly like my old self last night—giddy, relaxed, excited, even a little rowdy—getting gussied up in some fancy duds I mined from Salvation Army. What you can't see in the photo below is that I am wearing tails over of the strapless, shirred-tulle dress. Comfy in my black patent flats, a bit of bourbon warmed me in the wake of an excruciatingly long, icy, frigid winter "vacation" week, which confined us to home with an oft-agitated kid. At six o'clock, I kissed Michael goodbye and headed south in the rain, carpooling with Freddy Mercury (my friend Vin) and two others from Queen (my buddies Aaron and Dan), to attend our friend Swifty's (my pal Tim) annual Oscar gala.

Thirty miles away, we were greeted by a venue filled with tulips. A throng of handsome men sporting tuxedos and dinner jackets, some dressed in drag, plus a smattering of women, drank Prosecco and hammed for the camera. In a rare, live performance, my buddies from Queen rocked their hit, We are the Champions, to the surprise of many happy onlookers. On three walls, a half dozen big-screen televisions broadcast the Red Carpet. Swifty, our most beloved and dapper host who always goes all-out, if not over the top, for his guests, was at his best emceeing the event. As the awards show began, we dined on delectable spinach salad, stuffed pork tenderloin, flaky haddock smothered in a divine white sauce, roasted root vegetables and penne. I might—just might—have gotten a little bit tipsy.

The night reminded me of parties I threw decades ago (has it really been that long?) in my sweet Haight-Ashbury flat, where scores of friends and strangers dressed in their finest threads rocked the house, eating good food, drinking probably too much, laughing and dancing. I'm in my best element at a good party, even more so when I can dance.

By the time we left the event, the crowd had dwindled to some hard-core enthusiasts, and the rain had stopped. On the way home, Queen sang Cameo's, Word Up, from 1986 as I listened awestruck in the backseat remembering what it felt like to be young(er) and unencumbered. I wished they'd sung hits the whole trip north.

It was just about eleven when I finally rolled into bed. In the attached room, Calvin slept soundly under his fleece and down comforters. Nellie and Michael were deep in dream state. Closing my tired eyes, I wished Calvin would make it through the night without any seizures, hoping he would manage to go back to school, because—shindig or not—this party girl needs some rest.


2.23.2019

the bright side

It's that time of year when sun and thirty-eight degrees feels balmy, when, on days like this, the college students can be seen wearing shorts, even though there is still snow on the ground. With more storms on the way, however, I try to remind myself that we are closer to spring than ever, trying my best to look on the bright side of things.

Having recently felt the dark grip of despair more than usual, I've had to apply an attempt at optimism for all things Calvin, too. Though Calvin is still averaging about five or six grand mal seizures a month (save a thirty-day stint ending in mid January when he had only three) his partial complex seizures are few and far between. Still, the number of grand mals is troubling, especially in the face of increased CBD oil hoping to get them under control. When questioning whether to continue increasing it, I consider the bright side of things:

Calvin has been sleeping quite well for weeks on doses of CBD oil between two and four milligrams per kilogram of his weight—higher than many children who are taking it for their epilepsy, though far lower than prescribed doses of the new CBD pharmaceutical, Epidiolex. Also promising is that Calvin hasn't been sitting up multiple times in the middle of the night banging his head on the side of his bed repeatedly like he used to, nor has he been staying up for hours on end completely wired like he did frequently several months ago. His appetite and balance are good. He has been rebounding well after grand mal seizures. His total number of monthly seizures has dropped from the teens down to the high single digits in the past three months. Apart from some behavioral problems stemming (I think) from gastrointestinal discomfort, I haven't seen bad side effects from the CBD.

Moreover, and as I've said before, this slight decrease in total monthly seizures comes despite being in the thralls of puberty, despite not increasing Calvin's high dose of Keppra in over two years, despite having cut his daily THCA oil in half, and despite the fact that he is has been off of the benzodiazepine Onfi, aka clobazam, for a year.

Granted, it is possible we could see better seizure control if I increased his THCA oil, but the THC in it appeared to make him irritable and seemed to give him panic attacks and rapid heartbeat. I'd rather try to eventually replace it with CBD so we could feel more confident boarding a plane with his medicine. Furthermore, I don't want to muddy the waters with too many variables, and since I don't see bad side effects that I would attribute to his CBD oil, I'd like to see if increasing it a bit might help quell his grand mals. I've heard that its sweet spot might be between five and six mgs per kg of weight. Right now, Calvin is taking about 3.5 mgs of CBD per kg of his weight—about 100 mgs per day divided into two doses—so we've got some wiggle room, which helps me remain optimistic.

I promise to keep you posted.

Photo by Mary Booth

2.19.2019

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reasonwritten by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.


Photo by Michael Kolster

2.13.2019

choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:
I’ll be honest. This week’s news cycle has been exhausting and painful. 
This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 
Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

2.09.2019

birthday boy

Due to hazard, Calvin's birthday cake didn't have fifteen candles. Like most if not all abstractions, Calvin didn't have any concept Thursday was his birthday. He didn't make a wish, because he doesn't know what that is, and he didn't blow out the candle, because he doesn't know how. He didn't eat any cake that night because he was too tired, still recovering from that morning's seizure, and was well on his way to getting ill. But, we managed to get photos of our precious birthday boy, albeit without smiles, because no doubt he wasn't feeling good and he's oblivious to smiling for the camera anyhow.

Photos by Michael Kolster

2.07.2019

birthday blues

Fifteen years ago today, as I laid on a stainless steel operating table being prepped for my emergency C-section, the busy doctor and nurses patted my legs and feet as they walked past. Their gestures, meant to calm and reassure me, worked. Then, within minutes, I fell under the spell of general anesthesia. Sometime later in a different room, I awoke in a haze, Michael beside me holding my hand. I felt a dull throb in my lower back and the ache of fresh incisions and sutures in my belly. As I looked around at the blurry world, my newborn was nowhere to be seen. Slurring my words, I alerted Michael of my pain. Instinctively, he launched into our hypnobirthing script, which worked to dull the pain and lulled me back to sleep again.

Later the next morning, I emerged from a morphine fog, eager to meet our son. Gradually, I sat up, careful not to pop the staples and stitches in my gut. I placed my feet on the waxed linoleum floor and gingerly lowered myself into the wheelchair Michael had fetched. He wheeled me down wide corridors and into an elevator which took us downstairs to the neonatal intensive care unit (NICU). Somewhere in the florescent-lit room, Calvin was sleeping in a clear plastic box called an isolette, the intubation apparatus that had assisted his frail lungs having recently been removed. We scrubbed our hands and forearms with soap and warm water, then donned paper masks before entering the room.

As we neared our son's station—unsettling bells and alarms ringing and buzzing periodically—we passed by several other isolettes, each housing its own tiny baby, some no bigger than my hand and weighing little more than a pound or two. All of the preemies wore adhesive leads to monitor their heartbeat, respiration and oxygen saturation, and most were hooked up with cumbersome breathing tubes. When we reached Calvin's isolette, I recognized him instantly. His moon-shaped face had red marks where tubes had been taped, and a tiny little furrowed brow told me he'd been stressed. His right hand and wrist were taped with a splint meant to keep his IV in place. I scooted up as close to his box as I could and peered in, marveling at my beautiful boy whose nose I thought looked familiar.

"Hi Calvin," I said softly, and my baby boy opened his eyes for the first time; he was twenty-one hours old.

This morning at four-thirty, on his fifteenth birthday, Calvin awoke to a grand mal seizure. He convulsed for over a minute. He bit his cheek and it bled. His breathing was labored and strident. Afterward, I crawled into his bed. There, I cupped his shoulder with one palm and laid the other on his hip; he rested one hand over my eyes and put his other around my neck. He slept.

While walking Nellie a few hours later, a friend drove past then pulled up curbside. She got out and we strolled a bit. We exchanged stories of life's struggles and of raising pubescent kids. As we embraced, I thought of Mary Oliver's gorgeous poem, Wild Geese. In it she says:

Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.

After we parted, she called to me before driving away:

"Happy Birthing Day, Super Mama!"

With a smile on my face and cleated rubber boots on my feet, I trudged home in the slush and sleet left from a mini ice storm that rolled through last evening. It reminded me of the morning Calvin was brought into world.

In honor of Calvin's milestone, please consider a contribution to CURE epilepsy by clicking here.

2.06.2019

fallout

The night my water broke, an ice storm blew through Maine. Ice caked windows and froze shut doors. It sheathed leaves and needles and burdened branches. It glazed streets and sidewalks, treacherously.

I was only thirty-four weeks along in my pregnancy. A fortnight earlier, a bombshell had been dropped by a doctor who had shocked us with the news that my fetus had a brain malformation. Specialists in Boston, worried that a vaginal birth would stress our unborn child further, had arranged for a scheduled C-section to be performed at week thirty-five. Though I didn't feel any contractions, I quickly grabbed a few essentials and donned my down parka, zipping it up tightly over my basketball-sized belly. Michael kicked open the mudroom door which was encased in frozen rain, and we made our way, driving on desolate roads to our local hospital wondering how, in my condition, we'd get to Boston.

When the on-call obstetrician arrived at the hospital, we explained our predicament—our fetus' enlarged ventricles, his possible brain bleeds, the scheduled 35-week cesarean in Boston aside a team of pediatric neurologists and neurosurgeons, plus donor platelets readied if our newborn needed them. Unable to accommodate our serious case, she made arrangements for me to be transferred by ambulance to Maine Medical center in Portland. The ice storm had made it impossible for us to get to Boston; Medivac helicopters had been grounded.

Once at Maine Med, we explained our situation to another doctor, and a game plan was made. Without blood bank donor platelets in the case our fetus—who we had already named Calvin—suffered another brain bleed, I'd have to undergo a pheresis. In other words, I would be the platelet donor for my son if need be. Actively contracting, albeit subtly, I had to sit upright and motionless on a hospital bed for nearly an hour while my blood was syphoned, put through a centrifuge to extract its platelets, then pumped back into me. The pheresis left me with too few clotting platelets to safely undergo an anesthetic epidural without risking a spinal column bleed. Instead, I had to go under general anesthesia to endure the cesarean. As a result, despite my pleading, the obstetrician would not allow Michael in the operating room, which meant neither of us could witness the birth of our fragile son.

Sorrow and worry wrenched my heart. Everything Michael and I had hoped for, wished for and expected of our child's birth had vanished in a blink. Michael wouldn't hold my hand and offer reassuring words. We wouldn't hear our baby's first cries, wouldn't marvel at the sight of our beloved newborn. I would not clutch my babe to my breast, nor would Michael kiss my forehead as I looked into the loving eyes of a new father.

Instead, my body would become void of all senses. Neither of us would be participant, witness nor advocate. No photos, no videos, no memories would exist of the moment our son was born. I'd be left instead with the memory of kissing Michael goodbye and holding his hand as long as I could until we were finally broken apart. Of seeing him standing alone in an antiseptic room as a white-clad mob wheeled me under a tunnel of lights. Of the fear that I might never emerge from the anesthesia to see Michael's face again. Of perhaps never seeing my wee child alive and breathing.

Photo by Michael Kolster

2.03.2019

beside ourselves

As sure as the new moon's looming arrival, I sensed my son's impending grand mal. Yesterday, my boy and I were both beside ourselves—he agitated and wired and I, as a result, flustered, anxious and distraught—trapped in a vicious cycle of his disturbing behaviors begetting my tension, perhaps begetting his stress and perhaps begetting a seizure. But who knows? Maybe this is just how this effing epilepsy rolls.

Nevertheless, I try to put my best effort into remaining hopeful that we can find a therapeutic sweet spot of CBD that eases Calvin's seizures. So far, the Palmetto Harmony seems to have done a decent job of quelling Calvin's partial complex seizures and, for a time, I was sure it was reducing his grand mals. But three grand mals in a span of thirty days between mid December and mid January has since doubled back to his previous average. No doubt, the uptick is depressing.

Amid this constant doubt and worry, I try consoling myself, knowing that his grand mals are self-limiting, that the convulsions don't last more than ninety seconds. Nonetheless, they are distressing. I try to console myself knowing that his overall number of annual seizures is gradually decreasing, in spite of the fact he is no longer on the benzodiazepine and is taking far less of my homemade THCA oil. I try to console myself by remembering how utterly unhinged Calvin used to be on high doses of three antiepileptic drugs several years ago. Granted, he suffered a fraction of his current number of seizures back then, but his behavior was unbearable for us—then, far harder than the seizures—and I cannot imagine he felt very good. We'd see him regularly crawling out of his skin, virtually without respite.

I try to console myself by the mere fact that we did not have to cancel a gathering of some of our favorite people to salute Calvin's upcoming birthday. Despite Calvin's downward spiral yesterday—and owing to our son's wonderful caregivers—Michael and I cleaned house and put out a modest spread, gussied up, cranked the disco, rock and funk, and stayed up late chatting, laughing, snacking, drinking and dancing. Letting loose with beloveds proves to be one of life's best elixirs for casting out the mean blues and reds. Within minutes, I de-stressed.

Just before five a.m., however, after far too little sleep, Calvin seized. Michael dabbed the blood trickling from between our boy's lips. I gave the little guy his CBD oil then crawled in his bed and held him close to me. He quickly fell back to sleep. An hour later he woke up agitated as he often does in the wake of a grand mal—eye poking, "ooh-oohing," sun-staring, tossing, banging, restless beyond measure. Too soon, I lament, to be beside ourselves again.

1.30.2019

bombshell

Fifteen years ago, I reclined in the same green couch I'm sitting in now, resting and reflecting as I watched the world go by outside a southern window. I was no longer allowed to walk the dog or swim a mile or grocery shop. I wasn't allowed to go outside. Michael and I had stopped attending our hypnobirthing classes, stopped practicing our script, and I had stopped showing up for my prenatal yoga classes. I and the baby in my belly, who rarely and barely moved, and who still had six to eight weeks to develop, simply had to sit and wait it out.

Days earlier, a doctor had dropped a bomb on us. A thirty-two-week sonogram had revealed an anomaly in our fetus' brain: enlarged lateral ventricles, aka ventriculomegaly. I'll never forget the doctor's words to us:

"This is something you need to worry about." 

The discovery had led us to Boston where within one twenty-four-hour visit I underwent numerous additional sonograms, a CAT-scan, several blood tests, one fetal MRI, and a five-hour IVIG, otherwise known as intravenous immunoglobulin. All of this was because of an opinion held by bunch of pediatric neurologists, radiologists and neonatologists who thought they had found evidence of intraventricular and subdural brain bleeds leading to a blocked fistula. This blockage, they hypothesized, caused a backup of cerebral spinal fluid and the ballooning of our baby's lateral ventricles which in turn damaged the surrounding white matter. Their causal theory for the bleeds, based on a false-positive blood test result, was that there was a platelet incompatibility between me and Michael triggering my antibodies to attack my fetus' platelets. The consensus was a scheduled, thirty-five-week cesarean at Boston's Children's Hospital meant to avoid further trauma and injury which a vaginal birth might cause.

After the bombshell, I remember being exhausted, anxious and afraid. I don't remember being brave. I imagine Michael felt the same. So we sat tight in the frigid winter weather, wondering if our baby would be okay, wondering if he'd ever crawl or walk or talk or, as one neurologist told us was possible, might be completely normal. I remember wondering, after such an uneventful and healthy pregnancy, why it turned out this way.

I still wonder to this day.

February 3, 2004

1.28.2019

pent up, awaiting escape

In so many ways Maine was not made for someone like me, for a fair-weather chick with a disabled, chronically-ill teenager who can't manage to walk all by himself, let alone in snow or on frozen tundra. And so every long, Maine winter we stay pent up at home when outside it's five or twelve or twenty or thirty-eight degrees. Frozen seas form in the wake of torrential sleet and rain, sheathing the earth in ice and crusting up pathways. Time outside is impossible for my child in conditions like these.

Yesterday, I wept in Michael's arms, lamenting this feeling of imprisonment, stuck in this place with a kid like Calvin who too often has seizures. I wished I were in California. If we lived in San Francisco—home for Michael and me in our late twenties and thirties—we could take Calvin anywhere quite easily on streetcars, on Muni trains, on buses, on the subway. In minutes we could be padding in the sand aside the Pacific, eating pizza in North Beach cafes, searching storefronts for the best dim sum in Chinatown. Year round there, days are mild and glorious. Parks, cafes and museums are numerous and bustling. Art is everywhere. Vistas abound, begging possibilities.

Here in Maine, January began well; Calvin had only two grand mal seizures by the sixteenth. However, the past two weeks have not been so good. Calvin has had at least five days with seizures in that span. He has stayed at home from school too often. His nurse called in sick. Monotony and melancholy set in. Worry knit its way into my brow. Sleep escaped me, though not from insomnia.

Understanding my despair, Michael came to the rescue as if for a wake, bearing extra attention, tenderness and understanding, and by delivering from "his" kitchen, multiple delicious dinners.

Today, as I look out over the back yard I see a veritable glacier in sun and shade. The rhododendrons have curled up, some tight as toothpicks, amid the frigid temps. All I can think about is spring and making escapes. Maybe I'll take a train south to see my sister. Hopefully I can get back to New York in May. In fall, I hope to make another a trip to San Francisco; too many things I missed while there last spring. All these journey's I'll do solo while Michael stays home taking care of Calvin. We can't easily travel as a family and still manage to enjoy ourselves, the places, our friends and each other, restricted as we are by our difficult boy and his needs.

On the phone yesterday with my dear friend Heather from California, she reminded me that every single day I take care of a sick child. Although I know this to be true, sometimes I forget, probably because Calvin has become my new normal. And though I love him to pieces, he's in great part why I often feel lost, stuck, hopeless.

Despite the fact it's windy and twenty-three degrees outside, I sit here on our green couch soaking up sun rays while trying to remember we're headed toward spring. Maybe it will arrive early. Perhaps we won't get much more snow. Hopefully, with more CBD oil, Calvin's seizures will continue slowly trending further downward. Perhaps I'll get more sleep.

And maybe, just maybe, come spring I'll escape.

Photo by Michael Kolster

1.23.2019

surrender

My mind is a-flutter with all the ills of the world: toxic air and water; floating plastic masses in violent, rising oceans; warring tribes; the attempt to suppress women; the disrespect of elders; the smugness of privileged others; the oppression of LGBTQ and People of Color; the maligning of refugees; our democracy's disruption; the suffering of unpaid workers taken hostage over a wall that most of us don't want; conceited cheaters, liars, fools running our government. 

And yet, for a moment the other day, I escaped into a different world, one where black and white became blue and green and red and gold, where silence was filled with music, talk and laughter, where enemies became friends, where troops from two nations surrendered to each other. This was a world where different languages converged yet people understood another, where fear and hatred melted into humility, camaraderie and concern. I saw this with my own eyes in the documentary, They Shall Not Grow Old.

To make the movie, the director, writer, and producer of the Lord of the Rings and Hobbit trilogies transformed 100-year-old film footage from World War I by digitizing, colorizing and adding sound. The result is chilling—the looks in soldiers' clear eyes, the ravaged battlefield strewn with bloody, rotting bodies and razor wire, the muddy, lice- and rat-infested trenches, the histories told by veterans.

What appeared on the big screen mesmerized. Most striking to me, however, was the part where British soldiers captured German ones. In no time, it seemed, the men and boys from opposite sides were communing with each other. Some of the Germans spoke a bit of English. They told their captors of their families, of their children, of their work. Neither side understood why they were fighting. The boys and men in khaki and gray-blue uniforms exchanged hats, shared cigarettes, ate together, helped the wounded in each other's ranks. I imagine, by finally understanding one another, they came to love each other as brothers.

That night in bed I reflected on the film and on the recent social media frenzy around the interaction at the steps of the Lincoln Memorial between a handful of Black Israelites, a throng of Catholic high school boys wearing MAGA hats who'd been bused in from Kentucky to attend the March for Life, and a Native American elder who was there with others for an Indigenous People's March. Several videos caught slurs and smirks, chants and taunts that were tossed between the bickering Israelites and amped-up mass of MAGA boys. It seemed the Native elder tried to intercede, tried to part the crowd with peaceful drumming. One boy did not yield. He stood his ground. He did not surrender. His classmates seemed to mock the elder. Across the Web, different takes and narratives bent opinions in one direction. Others bent them back again. Villains became heroes; heroes, villains. In my curious scouring of the coverage, I found this most compelling and thoughtful piece about the rumpus, written by Marcia Mount Shoop, an ordained Christian minister. And though I'm not religious, her piece says it all for me, and every White American would do well to read it.

My thoughts drifted to the wall again. I imagined those hurting furloughed federal workers living on the verge of nothing with no pay for their labor. I thought about the people railing against migrants and refugees, insisting a wall is what we need. I pondered a president who fearmongers and vilifies refugees as hardened criminals while serially giving White Supremacists impunity. Like in the documentary I saw, I wish the folks who swear we need a wall could meet these frightened and fleeing migrants, could break bread with them, could share a cup of beer or wine, could surrender to each other; perhaps their hearts would become less hard. Perhaps they'd work to find a solution to aid their brethren save putting up a wall and razor wire.

And just before I closed my eyes I thought of my disabled, non-verbal, autistic, seizure-racked boy, Calvin. So sweet. So mild. In ways, a foreigner from another tribe. I recalled what I sometimes ask and tell his classmates so they don't neglect, badmouth or mock him. 

"Can you guess why I think Calvin is the best person I know?"

"Because he is your child?" some of them reply.

"Because he deals with so much but is still happy?" others respond.

"Nope," I say, "Calvin is the best person I know because he doesn't have a mean bone in his body and, no matter what, he loves everyone." 

The students usually fall silent. I go on to implore them to be kind and generous, to befriend others who are different from themselves—ones with different colored skin, different hair, ones who come from different nations, who speak different languages, who look, sound, dress, act, live, love and worship differently. 

"We all have the same heart inside," I end, hoping they'll surrender.

lost comments

Dear readers,

I just discovered 247 unmoderated comments to my blog. For several months or more, perhaps years, I have been wondering why no one had commented on any of my posts. It appears some sort of snafu caused them to stop appearing in my email inbox for my approval, and I hadn't bothered to look into it.

Please accept my apologies for having initially missed the incredibly kind comments many of you have written. I finally get to read them! And though Calvin had a grand mal this morning at 4:30, and though I'm feeling frazzled and fatigued, sifting through your generous comments has made my day!

Much love and gratitude,
Christy

1.19.2019

march forward

We were unable to attend our town's Women's March today due to frigid weather. Nevertheless, Calvin and I marched instead around the Hannaford grocery store in solidarity with the millions of Americans who disavow a president whose default is deceit, who fearmongers and incites violence, who falls in love with dictators, will not renounce white-supremacy, disparages women, ridicules minorities, maligns refugees, smears Muslims and mocked a disabled reporter. That image will be forever seared into my mind, and I will always be baffled why any one of the above actions—much less them all—didn't derail his candidacy. Hopefully someday soon we'll know.

Photo by Matt Klingle

1.18.2019

three long days

three long days. one sick kid. no diagnosis. several low-grade fevers. two grand mals. one partial seizure. four hours of agitation, panicky rapid heartbeat and clammy hands. two-plus afternoons with a listless child sleeping on and off. several restless nights. extra meds. one dream of caring for two calvins of different ages, each careening at the end of my arms. three incredible movies. one chapter read. zero words put down. thrice out of the house. seventy-five daily milligrams of cannabidiol. one beloved dead poet of beauty and nature. two inflamed elbows. four-degree mornings. ten to twenty inches of snow on its way. one aching jaw from clenching. one fourteen-year-old finger shut in a door. one crying child. one sorry nurse. one weeping, sleep-deprived mama. one chef husband and his three, savory, five-star meals. six-plus modest glasses of bourbon on the rocks between two people. one reckless president. twenty-eight days of shutdown government. too many hypocrites. millions of hurting federal workers and contractors without money to pay bills. innumerable racists and misogynists. dozens of formidable women in congress. one college art student who inspired this post. one morning without seizures. one child back to school. one smiling teacher ready to receive him. one tired mama, finally writing.

Photo by Michael Kolster