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

hell is an ambulatory eeg

i really don't feel like going into it. suffice to say, this happened today and is still happening. #ineedfourmorehands #fuckthisshit #webetterlearnsomething #colossalpainintheass #impossiblekid #tomorrowcannotcomesoonenough

within arm's reach

A friend, upon seeing my meticulously manicured garden and the obvious time and attention I give it, said that she didn’t know I had it so easy. Neither did I.

Yesterday, day eleven since Calvin’s last perceived seizure, we took him to the season’s first agricultural fair about an hour’s drive from home. On the way up I fed Calvin, like the little bird he is, pieces of chopped up strawberries, cucumbers and grapes and tiny cubes of gluten-free almond butter sandwich, alternately spooning in mushy raspberries and coconut yogurt. Though Calvin is eleven, none of this he can do by himself except to take each piece that I give him and put it into his mouth, often dropping them onto a crumby, drool-soaked bib. While feeding him I have to shield myself from getting my hair ripped out or being bopped in the face by errant fists which, while small, pack quite a punch. It's times like these that I am keenly aware that my crazy kid isn't getting any smaller.

Once at the fair, we were glad to see that tickets were just five bucks and Calvin got in free. It was hot, but the air had shed most of its humidity and a slight breeze kicked up cooling our skin. We changed Calvin’s diaper in the back of the car before setting off toward the fairgrounds. Almost immediately, Calvin began expressing his desire to stay put. Standing, though still in Michael's arms, he squirmed, laughed hysterically and succeeded in dropping to the ground, all of which seem to be his ways of telling us—since he cannot speak—that he doesn’t want to do what we are asking of him. It happens a lot. It is exasperating. After only a few yards we ended up strapping him into the stroller.

After a time in the stroller, with a little effort and a lot of patience, we managed to get Calvin to walk some and, luckily, he was fairly good-natured, not screaming, not wildly shaking his head. Even so, the kid is exhausting, having always to be within arm’s reach or holding on to our hands because, one, his walking is precarious on flat ground not to mention rough terrain and, two, because even if he could walk well by himself, the fact that he is legally blind and so significantly developmentally impaired means he would likely trip over or run into obstacles often. Besides these hindrances, Calvin is not prone to explore the world on his own. He seems oblivious to the goats and the horses and the pigs and the chickens even when we scoot him right up to them. Even if he could, he wouldn’t excitedly run over to the rides or the petting zoo or the shack serving ice cream and fried dough. The only thing I’d be fairly certain he’d do if he could walk completely independently, would be to make his way to the car—if he could see it from afar—hoping to go home.

As Sundays go, especially during a protracted benzodiazepine withdrawal, Calvin had a decent day, so after about an hour at the fair we dropped in on an annual summer pig roast hosted by our dear restaurateur friends and held at nearby Crystal Springs Farm. Again, if Calvin wasn’t in or at the end of our arms, he was sitting in the stroller at our feet being watched and fed and given medicine by us. All of the other children were scampering around, some of them barefoot, eating hot dogs, drinking sodas and playing tag in the field. For hours, probably, their parents relaxed in the grassy shade of a canvas tent, or meandered carefree amongst friends sipping beers and shooting the shit between tasty bites of heaven served atop white paper plates. A good summer vibe was had by all.

Michael and I managed to chat for a few minutes each with several friends who we don't see nearly enough, tag-teamed on one outrageous hot pork sandwich, took turns drinking beer from a plastic cup then said our goodbyes before heading back to tend to our weary boy's needs.

Once home, we helped Calvin out of the car, into the house and spotted him up the stairs. We gave him a bath, dried him off, dressed him for bed, spotted him down the stairs, strapped him into his high chair, fed him his dinner in fits and starts, gave him his two antiepileptic drugs—one liquid, the other pills—checked them off, brushed his teeth, walked him around some, burped him, put him in the johnny-jump-up for a spell, measured, mixed and spoon-fed him his homemade cannabis oils, changed his diaper one last time, gave him a few sips of water, took off his kerchief, tucked in his shirt, pulled off his slippers and socks, laid him into bed, covered him, dabbed a little lavender oil on his pillow, kissed him goodnight till he giggled, raised his safety panel and latched it, pulled the netted safety canopy over his bed and anchored its ends, put on his music, turned off his light, told him we loved him and were proud of what a good day he had. Then we closed his door behind us, grabbed the dreaded baby monitor and listened intently, full-volume as always, for the remainder of the evening and throughout the night, for any seizures or signs of distress; all these things we'll likely be doing for the rest of our lives spent with Calvin. Good thing we've got it so easy.

at the fair

special in every way

Let me win. But if I cannot win, let me be brave in the attempt.

—Special Olympics Oath 

Here are some photos of Calvin with his awesome one-on-one Mary at today's Special Olympics where, like true champions, they braved wicked cold winds, fifty-degree temperatures and long waits, while I sat on the sidelines, at times with tears in my eyes and at others, complaining.

Go Calvin! Mama's so proud of you!

letting go

Except for a glimmer of hope when Calvin was almost three—before the debilitating, multiple antiepileptic drug cocktails and the regular tonic-clonic (grand mal) seizures—I've never been quite sure the day would come when Calvin would be walking more often without assistance than with it.

Thanks to cannabis for allowing Calvin to cut his benzodiazepine dose in half and for Mary, his awesome one-on-one, who first saw his latent potential for walking independently re-emerge, and for trusting it. In great part because of them we can finally take a deep breath and, even if just a little, start letting go.

Calvin at school the other day with his best buddy, Mary

moms de guerre

He's had them at dinnertime, in the bathtub and in the johnny-jump up. He's had them in the hospital, at school, at the doctor's office, on the highway, in the grocery store and on an airplane 30,000 miles high. He's had them while walking and crawling and napping and eating. He's had them all day long and into the night. He's had them on Christmas day and Thanksgiving and on my birthday and Michael's birthday and probably on his own birthday. For almost two years he had these seizures exclusively between 5:00 and 6:30 pm. Now he's having them at 8:30 p.m. and 3:30 a.m. and, since yesterday, upon waking at 6:00 a.m.

They're silent these days, Calvin's convulsions barely perceptible, just the subtle click and swallow of a gag followed by a few constricted gasps for air. During the first half of all of them he stops breathing and his lips, fingers and toes turn blue. They last upwards of three to five minutes. It's hard to tell when they are over. His eyes roll then lock and then search the big black nothingness of the seizure. He looks frightened, lost.

He's had hundreds of them, likely thousands. Perhaps his hysterical laughter is a seizure; they call those gelastic seizures. Maybe when he is poking his eye he is having a seizure, or when his hands and ears turn crimson red or when he whines or cries or falls off balance or shrieks or stares incessantly at his fingers. We don't know for sure.

In all he's tried ten antiepileptic drugs plus two rigorous dietary therapies; none has stopped them from coming. The fact that puberty is on its way in a few years scares me. I fear his seizures will burn out of control like a wildfire unless we dampen them down now. Statistically, the chance another pharmaceutical will stop his seizures has dwindled to almost nothing, which is why I am trying to go green, hoping medical marijuana, which has helped so many other children with uncontrolled epilepsy, will work for him. It is legal in the state of Maine. I've got my card and I'm this close to getting the right strain and/or tincture for my boy, the kind very low or absent of any psychoactive qualities. But when I do, and if it works, we'll be incarcerated in this state, unable to travel legally with Calvin and his medical marijuana tincture without fear of being arrested for possession.

So, a small group of moms in Maine, we dragon moms, we moms de guerre—a term my friend Charlie came up with—have a friend who started a petition to legalize marijuana, to take it off of the list of schedule 1 drugs so it can be researched and readily available to our children, some of who need it—literally—to save their lives because nothing else works. We want it to be researched, to be able to receive the appropriate strains and tinctures in the mail and not have to uproot our families and become refugees in states where it is legal.

Please help us by signing this petition, then share it for others to sign. We need 100,000 signatures by January 28th, 2014 for it to be considered. That's nearly 3,400 signatures for every day in this month. Please click below and sign up. You could be saving a child's life, and you never know if that child just might be yours.

We petition the Obama administration to end the prohibition of marijuana by removing it from the list of controlled substances in the Controlled Substances Act.

friday faves - a single voice

It is a small thing—perhaps seemingly insignificant to someone who might think that a single voice doesn’t matter—the simple telling of a story. Well it does matter. A solitary voice with a compelling story or message, becomes two, becomes four, becomes eight and blossoms, exponentially, into a tapestry of resonant voices, a critical mass—a movement.

I’ve seen it happen. A mother of a child might be brought to tears by the challenges of her daughter, her son, and so she shares that story with friends. A father might read about an incidental moment in time that reminded him of his childhood, and so he passes the story on. A woman might linger on words that made her think of her father or mother—or perhaps reflect on being a parent—then goes on to share that story with siblings and friends. A parent, a student, a friend, an acquaintance, might be reminded of the simple joys and pleasures in life that they were taking for granted, and be moved to use their voice to share that message with loved ones. Or perhaps a harrowing story of a little boy suffering countless seizures makes someone realize how bad, prevalent and lethal epilepsy is, having never before been aware, and that person shares the story with everyone they know.

Your voice is a single voice, it’s true, but it can become a million strong, three million strong, three hundred million strong, if you simply share a story, pass on a message.

In the spirit of epilepsy awareness month, November, I’m asking a small favor. Next time you read a post on Calvin’s Story, if it moves you, makes you reflect or reminisce, laugh or cry, please share it with others. It’s a very worthy cause. Your voice, whether you know it or not, will be helping to find a cure for epilepsy, this devastatingly obscure disorder that afflicts and kills more people than breast cancer. Didn’t know that? There’s one good reason that Calvin and I need your voice. We need to find a cure. He can't do it by himself—needs a leg up—and you can give it to him, and to millions of others and their families.

So, take that one, simple step that you might have considered before now, which is to share Calvin's Story. Those who have done so already have sparked a critical mass for epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—so does Calvin.

Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

to the laborers

I've always been amused by the contention that brain work is harder than manual labor. I've never known a man to leave a desk for a muck-stick if he could avoid it.

―John Steinbeck

It is difficult to get a man to understand something, when his salary depends on his not understanding it.

―Upton Sinclair

On this Labor Day I post in honor, and in memory, of the world's laborers—children, the poor, the underpaid, the overworked, the disadvantaged, the struggling, the enslaved, the minority, the immigrant, the intellectually disabled—who assemble the products, who serve the public, who harvest the crops, who pack the meat, who forge the metals, who sew the clothes, who mine the ores and on whose backs investors in the products these laborers bring to fruition make millions, some perhaps consciously oblivious to the magnitude of their toil and the inadequacy of their take.

conviction

If you hear a voice within you say, "you cannot paint," then by all means paint, and that voice will be silenced.

—Vincent Van Gogh

Vincent Van Gogh, (1853 - 1890)

deb

Deb: Dedicated, Excellent. Bad-ass doc. Deb.

Deb is my son’s pediatrician. She’s been with him—with us—since Calvin was three weeks old, since we transferred from Maine Medical Center, where he was born, to our local hospital shortly after he was released from the neonatal intensive care unit. We took up residence in the labor and delivery ward for nearly four more weeks while Calvin practiced nursing.

Deb: Dogged. Encouraging. Brilliant. Deb.

Nearly every day while in the hospital, it seemed, Deb came to check on us in the morning. Usually, I had very low spirits having tried nursing Calvin with little luck since he was born six weeks early and having not yet developed the suck-swallow reflex. The nurses assigned to him would, every feeding time, weigh him on a sensitive gram scale before I nursed and then again, after, to determine how many grams of my milk he’d ingested. Then he’d get the remainder of his caloric requirement through a nasogastric tube attached to an inverted syringe full of my pumped breast milk. Deb was our cheerleader, and as such she coached us and assured us that Calvin would one day get it, would one day be going home. Without her I’d have fallen much earlier into the depths of despair because of my child that was failing to thrive. Without her I’d have had little hope.

Deb: Determined. Empathetic. Blue-ribbon. Deb.

But I did have hope because she gave it to me, and when Calvin was seven weeks old and barely six pounds, we brought him home. Since then Deb has made us feel as if Calvin is her only patient. I can’t quite wrap my head around the amount of time and effort she spends at work and then at home scouring stacks of books, medical journals and the Internet beefing up on my son’s conditions and afflictions and how to best treat them. She continually fields my copious emails, squeezes us in early for urgent appointments, speaks to us at length on the telephone long after her last patient has gone home, hugs us, at times cries with us, empathizes with us and has even made house calls on more than one occasion.

Deb: Down to earth. Extraordinary. Benevolent. Deb.

It’s difficult, if not impossible, to imagine what caring for Calvin would be like if it were not for Deb. She’s a rock. She’s Superwoman. She’s a caring individual and an indefatigable advocate for my son and my family. She’s the best pediatrician I can imagine, and though we don’t hang out together, I feel honored to call her my friend.

Deb. This one's for you.

photo by Michael Kolster

tag teaming

The cardinals outside a downstairs window are working hard to feed three or four chicks nesting in the shelter of a large rhododendron. Rain comes down hard at times, and steady. I notice, out the window at the base of the stairs, that one of the chicks has flown the coop and sits puffed up like a ball of fuzz in the hydrangea awaiting its parents to feed it bits of food. The parents tag team, bright red father then brown mother with her day-glow orange beak. They seem to be trying to draw the chick from its perch, the little defenseless birdie with no tail to speak of.

Upstairs, and in Michael's absence, my lovely friend Lucretia minds my chick as he sleeps in my bed, dried vomit on his face and sleeves and on the towel I used to catch it. My robe is sour and stained, my hair tangled with the same pungent spit up. He puked up his seizure meds while in my arms not long after I gave them. I picked out the half-dissolved ones from the yellow, frothy, phlegmy goop, redosed them when he woke up and gave him an extra Clobazam just in case.

Lucretia arrived before eight. She hugged me and rubbed my back and brought me coffee and slept with Calvin and stripped the beds and made them up and hugged me some more and told me she could stay as long as I needed. I took a shower and put in a load of stinky laundry. We sat and ate warm oatmeal while Calvin recovered some in the jumper. My little bird still isn’t eating or drinking. The chicks outside are famished.

All parents work so goddamn hard, I think, harder even when their kids are sick, some impossibly so. Thank goodness for the tag team. Thank goodness for Lucretia.

me and Lucretia

motoring

"He's an outlaw, he's a One-Percenter, he's a rebel that gives good bikers a bad name.  He just wants to be free; free to ride without being hassled by The Man!"

—Steve Shake, Calvin's unceasingly humorous uncle, upon seeing a photo of Calvin riding his trike.

Oh, and he's really not the kind of one-percenter that you might think.

Scroll right or click on the photo to see entire image.

photo by Mary Booth

effort and empathy

When we stop doing things for ourselves and expect others to dance around us, we are not achieving greatness. We have made ourselves weak.

―Pandora Poikilos, Excuse Me, My Brains Have Stepped Out

Yesterday, my nine-year-old disabled son Calvin and I did something we've never done before. We went grocery shopping using a cart ... but this time he wasn't in it. He was pushing it.

I positioned his slender fingers and thumbs around the bar, in the center of which I snapped two reusable shopping bags to prevent him from biting or bonking it. Then, from behind, I held my hands on top of his so that he wouldn't release his grasp and fall off balance. We shuffled like this from the berries to the apples to the bananas to the avocados. We were slower than the slowest of slow shoppers. My friend Tahnthawan appeared and kindly asked if she could help get some of our groceries—all of them, in fact. I told her no, that this was something we had to do, that I had to teach Calvin how, otherwise I'd never be able to go grocery shopping unless someone else came along. I saw her pained, compassionate expression in the form of a slightly stitched brow, and she came around later and lovingly commended me for being a hard ass.

Calvin and I began navigating slowly through the aisles from the coffee to the milk to the paper towels. He was the most obedient and patient that I've seen him for a while and we eventually managed to get everything on the list.

Then for five or ten minutes we stood waiting in line at the pharmacy, something I do all too often because of his epilepsy. Calvin whined and careened and scratched and pulled for me to pick him up. He batted my face and rubbed his head hard against mine clearly wanting to get going. I remained patient, a new promise I've made to him and to myself, and told him what a good boy he was being. The man behind us, while fishing into his pocket, asked if Calvin liked pictures. I replied, "not really, but thank you." Calvin squirmed and fussed for another several minutes as I signed for the drug then commenced our escape.

As I set Calvin's hands back onto the cart again, the man, a rugged fellow probably in his late fifties with rough-cut, short reddish hair and a gold loop earring, raised his hand in a high-five. As I slapped it he said, "I was in the military for years," no doubt in my mind a remark on knowing hard work. "I don't mean to be patronizing," he continued, to which I replied, "Oh, no, not in the least. I appreciate it." I went on to say that my father attended the Naval Academy, perhaps explaining my work ethic, to which the man tipped his head in solidarity. And as I steered Calvin and the cart away from the man while passing a line of gaping customers, I held back tears of pride and joy, sorrow and effort and the pleasure brought by a simple stroke of human empathy.

photo by Tahnthawan Coffin-Gartside

special olympics

At today's Midcoast Maine Special Olympics, Calvin won his heat in the 10 meter assisted walk with the help of his totally awesome one-on-one, Mary, and his very competitive mother.

photos by Ann Anderson

spread the word (video)

Isaac Asimov authored one of my favorite quotes, "Never let your sense of morals get in the way of doing what's right."

 
This amazing video demonstrates why we must urgently push for medical marijuana to be legal in every single state, bar none. There is no excuse to do otherwise, though big Pharma will likely use its arsenal to hire lobbyists and put money into the pockets of certain small-minded, power-hungry, fearful congresspeople.

It's a crime that our children have to suffer thousands of seizures and succumb to debilitating cognitive deficits because of those seizures and the heinous side effects of toxic pharmaceuticals, which by the way don't work nearly half of the time, and all in the name of ignorance, priggishness, greed and fear.

Do what you can, people. Spread the word. Educate. Do what's right. And if anyone in Maine wants to breed marijuana plants tailored to the needs of children with medically refractory epilepsy, please do!

friday faves - good husband

Michael cooks, he cleans, he shops for groceries. He brings home the bacon and pays the bills. He finds the music and plays it. He pours me wine. He's an amazing dad to an impossible kid (though impossibly adorable.) He gives me loving smiles. He says “I’m sorry.” He does the laundry. He changes the oil. He looks good in an apron. He makes me very, very happy.

He plays vinyl records—loud. He takes me to dinner. He's my best friend. He has a great sense of humor. He gives me compliments. He's very forgiving. He laughs at my jokes and gets me to laugh when the world looks black to me. He takes incredible photographs. He's compassionate and generous to those less fortunate. He's a progressive thinker. He views the world in ever changing ways.

He works harder than anyone I know. He gives Calvin tons of hugs and tickles and kisses. Although he has an amazing vocabulary he likes to drop the F-bomb about as much as I do. He teaches me plenty and willingly learns from me. He recognizes his limitations, which in my estimation are few. He loves his parents. He loses at cribbage. He rides a vintage motorcycle in a cool brown distressed leather jacket. He fixes anything and everything. He is humble, yet confident.

He digs Frank Zappa. He's one of his students’ very favorite professors. He makes strong coffee. Kids and animals love him. He paints things. He reads interesting books. He has super friends. He enjoys simple pleasures. He wrote the music and lyrics for a song on his guitar and he plays it over and over. He loves me unconditionally. 

I couldn't imagine raising Calvin with anyone else but Michael.

Version originally published 4.27.11. 

photo by Tim Diehl

(broken) promise

Shiny, taut and round like a basketball: my pregnant belly. Old photographs of it make me sad, particularly the one taken a few days before Calvin's birth. As I regard the picture in which my hand is placed flat atop my live melon, I can imagine Calvin cradled inside: our four-and-a-half pound, 34-week old fetus that had held so much promise for us just two weeks prior.

At that point, I carried what I thought would be a healthy baby who I’d deliver naturally, who’d have near perfect Apgar scores, a robust appetite and who we’d excitedly bring home days later to a house full of sunshine, plush and joy. Our boy would be sitting up by summertime, propped in soft grass or on a sunflower blanket in warm sand at the water’s edge. Perhaps by autumn he’d be crawling and within a year he’d be getting around on foot, playing with kitchen gadgets, exploring his world, riding on his father’s shoulders and maybe even saying his first words.

Our child would go on to devour the world with a fierce curiosity inherited from his parents. We’d teach him to be humble yet assertive, gentle and kind and confident. We’d take him camping and fishing and swimming in lakes. He’d have lots of friends who I’d watch him play with as I gazed out the kitchen window. We’d teach him the joy and benefit of reading. Perhaps he’d pick up music or art or sports. He’d have sweethearts and heartaches, psych-ups and letdowns, hookups and breakups. We’d trust and empower him and teach him to be compassionate, open-minded and honest. He’d love others, even if they were different from him—perhaps more so—and he’d grow up giving back to the world, making it a better place.

All this promise was contained in the small warm globe held tightly in my body. I felt it, dreamed it.

Then, in a blink it was crushed, toppled like a house of cards, our delicate nest of dreams spirited away in a single wretched moment. Now, I see only ghosts of the dream, brief moments, often months apart, when Calvin walks requiring little assist, or when he might look into my eyes and appear to register—visually—who I am.

Yesterday, as Calvin teetered along in front of Michael, who held his harness tightly, I watched on from inside the North Creek Farm cafe waiting for our pastries. I tipped my head against the window peering out onto a frosty backyard strewn with picnic tables weathered grey from rain and winters plus a half dozen laying hens sprinting to and fro. I imagined Calvin letting out his birdie noise and I thought of how much he looked like a little chicken out there. My throat tightened when I saw a faint smile creep across his face as he navigated around tables and benches in the grass of the unfamiliar yard.

We moved on to a nearby beach where the sand was too soft for Calvin to walk in with any skill, even while holding our hands, and further hindered by his constant contortions attempting to stare at the sun. So, we quickly abandoned the venture. As we hobbled hand in hand back up the dunes to our car with as much difficulty as pushing a wheelbarrow full of rocks through deep sand, I glanced back at a family with two small children half the size of Calvin running and playing as free as birds and—again—thought of the promise that, to us, will be forever out of reach.

never give up

Never give up on something that you can't go a day without thinking about.

—Winston Churchill

Calvin at two months, photo by Michael Kolster

bird by bird

For my friend Eee:

A few years ago my sister gave me a beautiful strand of cloth birds she’d brought back from Asia. The dozen or so resemble hummingbirds and are hand sewn, cut from colorful felt. Tufts of yarn serve as wings and tails—beads for eyes—and each is wrapped in a metallic gold ribbon harness. The cord itself is adorned with various beads and shells and a tiny brass bell tied at the bottom tinkles happily when disturbed. The string hangs from a tack beside Calvin’s bed just to the right of the light switch. When I turn the light on I sometimes jingle the bell—inadvertently or not—and it makes me smile.

When she gave it to me I pondered its symbolic meaning. At first I imagined it like a calendar, similar to the bird-themed oblong felt ones that my deaf, autistic uncle embellished with sequins then sent to us every Christmas when I was a kid. And then I thought of the book Bird by Bird, by Anne Lamott, that I’d read several years ago and from which this passage comes:

Thirty years ago my older brother, who was ten years old at the time, was trying to get a report on birds written that he'd had three months to write. It was due the next day. We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books on birds, immobilized by the hugeness of the task ahead. Then my father sat down beside him, put his arm around my brother's shoulder, and said, "Bird by bird, buddy. Just take it bird by bird."

We have to think of our life with Calvin in much the same way, taking each day, each challenge, each disappointment, each monotonous, worrisome, fearful minute one by one. To do it any differently would be too great a task, too daunting.

Sometimes I look back at past calendars. In any given month a dozen or more days are blocked with fading orange highlighter—like a quilt—noting Calvin’s seizures, marked with large black dots flagging tonic-clonic ones or strings of heavy “Os” for partial complex ones. Following are smeared inky descriptions of each; how long, how violent, if he stopped breathing, if we had to give him the emergency rectal Valium, if we called 911, if we went to the ER, if he was transported to the pediatric intensive care unit in Portland. Each month is stained with bright green or yellow swathes and scarred in sharp black letters tagging changes in Calvin’s multiple medications, doctor’s appointments, blood draws, illnesses, therapies and nurses’ visits.

And when the enormity of our situation becomes too much to bear—when I don’t know if I can change another dirty diaper, hear another manic scream, struggle to give another medicine, agonize over another seizure, endure another sleepless night—I run my hands down that colorful strand of plump cottony birds and think to myself, bird by bird, Christy, bird by bird.

Originally published 01.23.12.

out into the real world

I entered the real world again yesterday after a two-hour bus ride to Boston. First on my agenda was to get a shine on my scuffed boots so they’d look nice enough to wear later with my black silk dress. His name was Edward, and as he polished, brushed and buffed my boots amongst the hubbub of Boston's South Station we talked about Lewiston, Maine, friends, children, grandchildren and epilepsy. Sorrow crept over his face when I told him about Calvin, who can’t talk, can’t walk by himself and still wears diapers though he is almost nine years old. I explained that all that didn’t matter compared with the living nightmare of seizures, drugs and their side effects. He said with sympathy, perhaps even empathy, “I know how ‘tis,” and I understood him to mean he knew the pains that come with parenthood. I stepped down off the leather bench, shook his hand and told him I’d be back next time with a different pair of boots for him to shine. He smiled and waved.

In the subway, two Berkeley School of Music students played fiddles with the deft and dexterity that belied their tussled hair, skinny jeans and worn-out canvas sneakers. I tossed what change I had into their open case.

At Harvard Square I ambled down the streets, cold hands stuffed into my pockets, an aching shoulder from the weight of one heavy bag. It felt good to be in the “mix” again—people of all different colors and walks of life. I snuck into a little Italian deli to purchase a split of Champagne for my hosts, Susan and David Axelrod, whose daughter Lauren has epilepsy. To show my thanks I’d have it delivered to their room in the hotel. Then I resumed my hunt for a cup of coffee and a piece of cheesecake, which I never found, so I settled on a designer cupcake that was even too sweet for me. I bought an extra one that I gifted to a homeless man standing on the sidewalk holding a bent cardboard sign. As I approached I met his friendly eyes and said, “I got this just for you,” and he gave me a big, warm scruffy smile. “It’s very sweet,” I cautioned, and he told me that was just what he needed.

For the first time in a long time I felt vigorously alive. I breathed deeply the cold air, closed my eyes to drown myself in the sounds and smells of the city, a place where one can truly embrace humanity with all of its blemishes, shortcomings, wonder, generosity, diversity. In the twilight I exhaled with a satisfied sigh and made my way along the river to the hotel.

Last night at the CURE epilepsy benefit at Fenway Park—the reason I’d come to Boston—I found myself in an a diametrically opposed circumstance from my afternoon walking the streets. I stood elbow to elbow with hundreds of donors. They each payed $1000 for a seat at a table dining on tuna tartar, crispy wonton and the biggest portion of filet mignon I’ve ever seen resting on a delicious bed of sautéed spinach and scalloped turnips, all cooked to perfection. At the cocktail reception I hugged my host and friend Susan and later squeaked through the crowd to introduce myself to her husband, David. “Can I hug you?” I then asked, and he kindly obliged before holding my hand and telling me he was an avid reader of my blog. In a soft, round voice he went on to say how he admired my style of writing. I blushed. At that moment, Senator-elect Elizabeth Warren appeared and David introduced us. In my nervousness I called her Margaret [my default position because of Margaret Warren from my beloved PBS News Hour (later my husband reminded me that her name is Margaret Warner, so I am totally messed up.)] After we shook hands I unabashedly gave her my card, the one with the photo of Calvin and I on one side, the blog address on the other. Upon hearing about Calvin, Elizabeth became animated—impassioned—about the need for epilepsy research and how much more must be done. I nodded and smiled in great agreement, congratulated her on her recent win, said so long to them both then gently slid away through the handsome throng of dark suits and little black dresses.

And I made some other new friends: Leanne, a mother of a 22 year old son with severe epilepsy that doesn't respond to medication, her BFF Tammy who came along for support, my dinner companions Abby, Stephanie, Kim, Jackie, Ernie, Cathleen and Wendy, and two handsome young men who I didn’t get the chance to speak with, sons of the event co-hosts, Anne Finucane & Mike Barnicle whose daughter, Julia, has epilepsy.

A highlight of the event—and there were many—was a speech made by Carol Fulp, a beautiful, brilliant, successful woman with epilepsy who lived with it for fifty years before telling anyone because of its deeply rooted stigma. Her speech made my skin tingle with love and admiration for a person facing much adversity in life, not only as an African American woman, but one bearing—then overcoming—the secret burden of her epilepsy.

I closed the night with a few photos, some good laughs, several heart-felt hugs with Calvin’s neurologist, Elizabeth Thiele, who I absolutely adore, more hugs for Susan and for David then off with my new homies, Leanne and Tammy, whose driver Georgie took us to my hotel for a nightcap. I closed my eyes around midnight, just after an excellent segment of Charlie Rose interviewing Andrew Solomon about his new book Far From the Tree followed by a poignant discussion about racism and mass incarceration in the United States. Must. Stay. Awake.

What I said to David Axelrod is true, I don't get out much. But last night brought into sharp focus what my husband tells me, that getting out into the real world is something I most definitely need to do more of. And with any luck, I will.