dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster

on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.

principles

If Calvin were a typical child, I'd spend my days instilling him with these principles:

be kind. be honest. be forthright. show interest in those different from yourself. admit fault. be forgiving. be generous. be humble. hold onto hope. be curious. be grateful. be unassuming. take risks. be trusting with a modicum of caution. be accountable. be trustworthy. avoid making assumptions and jumping to conclusions. be courageous. be supportive and advocate for others. be empathetic. challenge authority. be charitable. be loving. celebrate diversity. be fearless. forge new paths. be productive. take time to relax. be patient. be tender.

I am acutely conscious of and lament the fact that Calvin won't grow up to express these principles as a teacher, doctor, philanthropist, climate activist, immigrant advocate, social justice champion, scientist, inventor, artist, author, or parent like many of my friends' children are no doubt considering. But as I write these words, I realize that Calvin in his own way exudes many of these virtues. Maybe they're written into his DNA. Perhaps he has garnered some of these ideals through our parenting, despite the fact I fail miserably at demonstrating some of them.

But Calvin is not a typical child. I like to think of him as extraordiary, a boy who daily shows his penchant for unconditional love, which might be the most-prized principle of them all.

Photo by Michael Kolster

caution to the wind

Despite trepidation, Michael and I made a rare one-night escape upstate with Calvin and Smellie. It had been over seven years since we'd made such a trip, heading north into the lesser-traveled parts of Maine. Though we used to explore a lot when we first moved here, we've done so only a few times since Calvin was born, mostly because of his seizures. Now that he is older and bigger, another concern is finding a safe place for him to sleep without fear of him getting hurt.

The height of leaf-peeping season, the colors in the hills were as dramatic as I think I've ever seen. Photo ops were afforded in every direction. Amid the vivid autumnal colors, placid Mooselookmeguntic Lake shined like molten silver.

Three hours after our departure, we settled into Idle Hour, a rustic lakeside cottage a stone's throw from the Bald Mountain Camps restaurant lounge where we were able to get glasses of bourbon on the rocks, take-away. A young woman seated at the bar surprisingly paid for our drinks, telling me that it was her day's random act of kindness. I'm not sure she realized how much her gesture meant to me.

Back at the cottage, while seated for minutes at a time on a futon and in Michael's lap, or in his johnny-jump-up which Michael rigged to a railing, Calvin passed the time contentedly as a fire in the wood stove crackled and popped. As usual, Smellie didn't venture far, even with the lure of the lake nearly at our feet.

At twilight, we eventually managed to settle Calvin into the middle of a squeaky queen-sized bed, propping a half-dozen heavy pillows around him. Michael began making his magic in the bare-bones kitchen, producing a perfectly cooked herb-encrusted rack of lamb, mashed potatoes sprinkled with some black trumpet mushrooms our friends had home-foraged, plus sautéed skinny asparagus. Thanks to the mild weather, we were able to dine on the porch with the door open, jumping up to check on Calvin every so often. After we finished our meal, an affable bloke from the cabin next door brought us several delicious barbecued scallops wrapped in apple-smoked bacon for dessert. He had visited us earlier and had asked about Calvin, his diagnosis and prognosis. Years ago we might have been incensed at such questions. These days we appreciate any genuine interest in our peculiar boy, even from strangers, particularly considering so many people gawk at or ignore Calvin, and some of my five siblings rarely ask how he is doing.

Before retiring to bed, I took Smellie for a short walk and noted the full moon rising in the mist over our heads. I wondered if Calvin's intermittent shrieking during the drive up had been due to the moon's gravity, wondered, too, if it were an omen. The grand mal at five o'clock the next morning—only four days since the last one—validated my concern. But regardless of Calvin's seizure, which was typical and self-limiting, requiring no emergency care, our adventure proved to us we should throw caution to the wind more often.

click on any photo to enlarge.

reason, purpose, meaning

Thousands of acorns, some crushed. A wad of squashed gum under my sneakered foot. Red leaves with yellow spots and brown edges. A blanket of bronze needles. A pair of broken sunglasses. A dime. An unopened bottle of beer resting on a granite bench. Bird nest with plastic ribbon. Dead squirrel from Nellie's mouth. Plastic bag. Chapstick. Puddles and shards of glass in which I can see myself.

These are the things which, in recent days, have come across my path, or I across theirs; I'm unsure which is the truth. Were they put there for a reason by some divine hand, like some would say is true of everything else? Or did they land there randomly, awaiting others to assign them some purpose or meaning? I'd say the latter.

I remember a conversation with a sibling's in-law long ago. He told me that god put my son Calvin on this earth in his regrettable condition—legally blind, nonverbal, incontinent, cognitively and physically disabled, racked by uncontrolled seizures—so that I could learn something about myself. My face became hot. My heart began to pound. I shut that conversation down as hard as I could:

"I wager you'd feel differently if you had a child like Calvin and saw him suffer every day of his life."

Thankfully, the man shut up.

My son seizes weekly. Yesterday, someone sensitive and with insight, asked me tenderly if his seizures hurt him. I told her they likely did. The spasms cramp and rack his body. His heart races. His breathing shallows. His brain's neurons and his body's muscles march in gruesome unison. He often bites his cheek until it bleeds. I imagine viscous headaches plague him. The other kind of seizures seem to sometimes scare him. I see a petrified expression creep across his face. I've been told by someone with epilepsy that her seizures were terrifying and that she felt as if she were being choked to death. Is this the work of a merciful god? No, it's not. Am I worthy of my son's suffering? No, I'm not.

Yet acorns get eaten by squirrels about to get their necks snapped in the jaws of a dog. Gum gets stuck to sneakers and travels to distant places picking up all kinds of disgusting stuff. Autumn leaves get pressed into scrap books. Pine needles tamp down underfoot. The owners of broken sunglasses are imagined. Coins are passed to endless palms and pockets. Beer gets drunk. Bird nests get burned. Plastic bags go on to hold poopy diapers. Chapstick gets neglected there on the sidewalk. Puddles and shards of glass reflect my tired face, nearby trees and ever-changing skies above me. Some things are given meaning and purpose; others, not. Calvin inspires love and affection, makes those who meet him better people. But he, in his suffering, is no pawn of some so-called merciful god, and yet he gives me purpose, and yet his life is meaningful.

old self, new self

i want my old self back. the optimistic me instead of the worst-case-scenario one i'm sometimes told i've become. i want back the energetic, ambitious, hopeful soul. instead i feel puffy, tired, lost, sometimes melancholy.

i want my old self back, including hair which used to grow thick enough to lie on strong shoulders. i'll take back that hard body, too, the one which my friend robert once said felt like a dolphin, the one with the flat belly which i'd proudly take to the nude beach to go body surfing, the one that could run an eight minute mile with little problem and swim one-hundred yards in less than a minute.

i want my old self back, the one who could sleep in past six or seven, who was untethered, who didn't have a sick kid dictating nearly everything. I want my old self back, at least parts of her, like the part who didn't worry much, who looked at each day as a new opportunity, who dreamt of what life had in store.

but last night and today, i see parts of my new fifty-six-year-old self that i like: the friends i've made, the ones i've kept, the things i've learned about love, politics, race, justice and equality. i get to walk in a magical garden of my making while smelling the fire that's been made for me in our wood stove. i get to write long and hard and daily sometimes. i get to listen to the police and pink floyd and FIP. i get to drink gigondas and côtes du rhône and nibble on goat cheese that is out of this world. i get to gobble huge pieces of a friend's homemade carrot cake with crystalized ginger in its cream cheese frosting alit with silver sparkling candles that resist being blown out. tomorrow i get to celebrate nine years of writing this blog, which has been fulfilling beyond words. i get to look out every single window of this old house and see gorgeous fractals of green and bronze and red nearly every month of the year. i get to hang with my son and husband hugging and smooching. i get to make eggs and toast for my babies. i get to gather with my favorite homies drinking bourbon and wine and eating michael's ridiculously delicious food and laughing until i cry. i get to miss the ones who live out west and south and east. i get to drown myself in art and music and nature when time affords me.

so, on second thought, i guess i don't want my old self back. this one, though not necessarily more traveled mile-wise, is more worldly thanks to calvin and maine and age and the wicked smart people who surround me. and as i listen to pink floyd's sultry us and them, it seems to sway the pines outside my window at twilight, and beat with the pitter patter of calvin's footsteps in the upstairs bedroom with michael.

and so i'll take this new self, this self who still wears ratty jeans and adidas stan smiths, who has beloved in-laws and siblings who love and think of me and calvin and who, despite the clusterfuck that is my life, nevertheless resembles the old self and is still excited and hopeful for the future, whatever it holds.

Photo by Michael Kolster

in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

overnight in september

Overnight, autumn arrived. The wind chilled, leaves turned rose and yellow, pine needles and temperatures fell. Overnight, Calvin suffered his sixth grand mal of September. In addition to those, he had two focal seizures, totaling eight for the calendar month. And though one seizure is one too many, I'll take eight over August's fifteen.

As I look out over the garden, now dark and damp after last night's rain, I remind myself that Calvin, though he continues to have reliable seizures, rebounds from them so much better. Gone, it seems, are the hours he used to spend perseverating, hyperventilating, fingering, heart racing in the wake of a grand mal. He—we—would often be up for hours unable to settle, and deprived of most precious sleep.

Seated in my creaky wooden chair, I regard the gangly lilac trembling in the wind outside my window and I think of Calvin who has grown so much since June, his limbs long and lean, his gait often unsteady as if he could be toppled by a breeze. Amid these weekly and biweekly seizures, I console myself knowing he is on far less pharmaceutical medication than in recent years, and yet not suffering a huge, sustained uptick in seizures. I just wish we could find a way to lessen them to the level he had (half a dozen to none) when he was on enormous doses of three powerful antiepileptic drugs, without suffering the unbearable behaviors those drugs caused. Even then, his number of seizures reliably crept up each month until we increased his medication, leading to a vicious and unsustainable cycle.

At times, on good days, I see glimmers of a more normal child in the gaze of his sky-blue eyes. I keep hoping, as he gets older and stronger, Calvin might outgrow his plight, just as robust plants are less susceptible to disease. Or perhaps the epilepsy will go dormant, like what happened to some trees as if overnight in September.

Photo by Michael Kolster