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

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

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

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

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

letting go

After reading my most recent post, a little less stress, about giving up on logging Calvin's behaviors, etc., in a daily journal, a friend my age, who some years ago lost his daughter to opioid addiction, shared his thoughts about what I had written. He said: 

Letting go. Acceptance. It comes last, and in endless layers, one thin peel at a time. I know. Believe me: I know some version of this.

We hold on to magical thinking, and only in release ... slowly, sequentially, only as we are able, feather by feather ... is there relief.

I think I know ... I can't say I for sure know, but I think I know ... I think I understand this sort of surrender of which you speak, and the modicum of peace that follows.

Time and readiness. Patience and prayer. For all of us.

His gorgeous words were particularly moving to me. I hadn't considered my decision to give up the daily task of logging in a journal as a kind of acceptance of Calvin and his stubborn condition of intractable epilepsy. I thought of it more as a way to reduce my level of stress. However, in my first day of not logging, I felt more present in my son's life, not feeling compelled, whenever I saw what I thought might be a seizure harbinger, to run to my journal to jot it down. The result was something I hadn't fully expected, which was a kind of admission and acceptance that I didn't have full control over my son's epilepsy, and that journaling—though it once served a purpose—might no longer be necessary or helpful, and that Calvin will be okay even if he seizes. Rather than logging every suspicious behavior, I've just noted them in my head, sat with each for a bit, then continued to engage with my child—embracing, kissing, tickling. It was a relief not to be hyper-focused on documenting. I was focused instead on my son without suffering some of the angst I usually feel. Putting the journal away, to a great extent, has allowed me to let go.

With new insight, I reread what my friend wrote. Certain words stood out. Acceptance. Endless. Thin peel. Relief. Surrender. Peace. I felt all of these things the first day I gave up logging Calvin's woeful and suspicious behaviors. In giving up that routine, I also give up emphasizing in my mind and on paper the negative aspects of Calvin's days, therefore depriving them of a certain agency. So, too, do I relinquish a certain amount of cynicism leaving more space for hope, optimism and healthiness. Maybe Calvin will feel this effect, too. Perhaps he'll seize less. We run in such close circles, inches or feet away from each other at all times, I can only imagine he'll benefit.

Photo by Michael Kolster

a little less stress

Something came to me the other night in a kind of epiphany. While cozying up to Michael in bed, I was thinking about my dentist's suggestion of wearing a night guard to protect my teeth from clenching them. Assuming my teeth clenching is due to stress, it occurred to me in a flash that perhaps giving up keeping a daily journal would lessen that stress. I've kept a journal since Calvin was diagnosed with epilepsy in 2006. In it I log his behaviors, star the ones which seem to be harbingers of an impending seizure, underling or capitalizing the most vexing ones. In the outer margins I log his bowel movements, indicating their size and consistency. I circle any suppositories or pain medications I give him. I highlight medicine changes in yellow, night terrors/pain episodes in pink, grand mals in orange and partial complex seizures in blue. I note how many times I am up at night laying him back down and covering him, and draw a cloud around nights when he stays up past bedtime perseverating. Rarely do I write positive things, perhaps because of their infrequency or perhaps, in my eternal quest to fix my kid, my focus is misdirected.

I think the epiphany came as the result of something Calvin's new nurse, Sue, said to me the other day. In relating her own history of hypervigilance over a now-grown son who had intractable epilepsy as a kid, she told me he had once said, "Mom, stop looking at me." At the time he was just six.

In her anecdote, I saw myself and the way I physically and mentally hover (obsess?) over Calvin and his condition. Perhaps, if he could speak, he'd tell me to stop looking at him. It got me thinking that maybe the journal—though it has served a purpose in tracking possible relationships between Calvin's seizures and his meds—might at this point be overkill. After all, I think I've got a pretty good sense of patterns in his condition, and I'm not sure writing down omens prepares me any better for his seizures. And if need be, I can also rely on my monthly calendar where I log the important stuff like seizures and medicine changes.

Years ago, I stopped using a handmade chart to check off Calvin's daily medicines. At one time, using it was necessary considering the slew of medicines and supplements he used to get—as many as twenty-three administrations a day—and sometimes I'd forget if I'd given them. Now, Calvin takes so few medicines—Synthroid, Keppra, multivitamins, Miralax, THCA and CBD cannabis oils—that I can remember them without the use of a chart. Years ago, I also stopped listening to the baby monitor when I slept because I'd wake up at the slightest move Calvin made in his bed. Both decisions reduced my overall stress, if only a little.

So, yesterday, the journal went into a drawer. Starting today, I won't be logging anything in it. Though I'll allow myself the right to use it again, I want to see what life is like without it. Perhaps I'll stop clenching my teeth at night. Maybe I'll sleep better. Perhaps Calvin will feel less stress. Maybe in turn he'll seize less. Maybe its absence will open up scads more time for me to do other things instead. Who knows? The possibilities are endless.

trending

in the last forty-five days, calvin's grand mal seizures have fallen slightly from an average of six per month to between three and five. in the same time frame, his partial seizures are down from double digits to just a few. days with seizures remain equal to a years-long low of about six per month. despite this slight downtick in seizures, calvin has been, overall, kind of agitated. i wonder if it is because of the increase in cbd oil causing him tummy aches, or because his brain is craving seizures that the cbd hasn't allowed to emerge. i have heard of children and adults becoming seizure free only to suffer behavioral side effects due to the increase in ambient stimulation their seizure-free brains must wrestle. nevertheless, we are grateful for this recent trend of fewer seizures, despite calvin's slightly-wired self. perhaps we'll get to the bottom of it. as always, cross fingers. knock on wood.

Photo by Michael Kolster

sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.