hopes and regrets

regrets:

impatience. spite. grumpiness. rudeness. isolation. lack of priorities. flabbiness. neglect. worry. distraction. stress.

hopes:

more reading and writing. respite. sleep. relaxation. girlfriend get-togethers. patience. kindness. exercise. concentration. prolificacy. wellness. seizure-free son.

photo by Michael Kolster

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.

friends and strangers

We slogged across a street glazed in gritty slush, the sun having just set. Michael hoisted Calvin to his hip while I carried a bottle of champagne for our neighbor-hosts. Once inside, we stripped off our winter gear never letting a hand off of Calvin. I introduced myself and my boys to a few guests who were seated next to a large Christmas tree dripping in silver tinsel. I didn’t catch everyone’s name—I rarely do these days. There was a blond woman in her early thirties, a woman who must have been in her seventies sitting alone in the corner and a younger man in a Christmas sweater slouched in an oversized chair. Calvin cruised into the living room at the end of his harness and I knelt to gave him a hug, running interference between him and the bowls of candy on the coffee table.

“You’ve got your hands full,” the man in the chair commented with a smile. I agreed. We small-talked for a bit then Calvin lead me into the kitchen. “Nice knowing you all,” I said in jest, and the group chuckled in our wake.

Once in the kitchen, Calvin made a beeline over to our host Brian, a burly man about six-foot-six-inches tall. He crouched to receive our boy, who wrapped his arms tightly around Brian’s neck. “His arms are pretty strong!” Brian noted, and I told him he was lucky he didn’t have long hair for Calvin to pull.

Soon, Michael, with beer in hand, took Calvin from me and they teetered between stove and counter and table and chair, not unlike we do at home. I met Kim and Chris and Rosalee and Kevin and another Kim. Child free, I was able to give our wonderful hosts, Joanne and Brian, proper hugs, sip a glass of wine and pop a couple of hot pigs in a blanket into my mouth. I felt all eyes upon us, though in a good way. Everyone was warm and welcoming and interested in Calvin, though not overly so. Now and then a curly-headed girl no higher than my knee weaved her way through the crowd carrying a paper cup full of foil-wrapped chocolates. Her agility amazed me, didn’t seem possible for a child so young.

One of the Kims, when I told her of Calvin’s epilepsy and our quest for medical marijuana, told me she was partly responsible for legalizing it in our state. I told her how awesome that move was. She went on to characterize it as a libertarian thing. “Well, I don't know about that,” I replied, adding that I thought it was simply the right thing.

As Calvin flopped like a fish on the floor at our feet the group of us joked about aging bodies, twenty-foot artificial Christmas trees, storms coming, drug side-effects, in-town living, ice-fishing and children. I finished my wine then gathered our hysterical, giggling, drooling kid off of the rug and motioned to Michael that we should head home. Another family arrived just as we were leaving and, outside, we passed a few other departing guests. One of them, Kevin, a nice man with tight curly hair, neat facial stubble and an earring, called and waved, “Goodbye Calvin!” My eyes began to mist, and as we crossed back over the street to our house I said to Michael, “Strangers rarely do that, do they?” to which he replied, “Nope.” And as I skated through the sandy mush I was grateful for all of the Kevins in the world, and the Joannes and the Brians and all goodhearted neighbors, friends and strangers alike.

in going for the green

how long have you been growing medical marijuana? are you a licensed caregiver? how did you get into the business? what strains of medicinal cannabis do you have? are they high in CBD and low in THC? do you have Charlotte’s Web, R4, ACDC or Cannatonic? do you have seeds, clones or flowering plants? how many patients do you currently help? what are their ailments? have you ever treated someone with medically refractory epilepsy? do you know how to cold tincture? what kind of soil do you use to grow your plants? what kind of fertilizer do you use? is your facility climate controlled? how do you control mold? how do you control pests such as spider mites? where is your facility located? may i visit it? how much will you charge for tinctures or will you supply my son free of charge? do you have the equipment to tincture correctly? do you have testing capabilities? if not, where do you test your strains and your end products? does that testing facility use high-performance liquid chromatography? do you tincture using only bud or do you also use trim? how do you strain your tinctures? do you use organic grain alcohol, glycerin or oil to make your tinctures? have you tried the tinctures yourself? if so, how do they make you feel? are you familiar with dosing? will the supply chain be dependable? what is you timeline for getting the end product?

Dr. Sanjay Gupta and Josh Stanley

friday faves - not just in the movies

Since Calvin was born, watching movies feels different. My senses have heightened and my nerves have splintered raw. I can still take most any genre—horror, suspense, drama—but now, it’s the occasional image I feel the urge to sensor with both hands over my eyes.

Shortly after we brought Calvin home from the hospital, when he was nearly two months old, we rented the film The Magdalene Sisters. A drama based on fact, it portrays the enduring hardship of three Irish girls having entered—against their will—an asylum for wayward teens and promiscuous girls known as the Magdelene Laundries. Some girls had been impregnated by their own fathers, others were deemed too flirtatious or too beautiful to be out in society. They were sent to the abusive institutions, which were run by the Catholic and Protestant Churches during the 19th and into the 20th century.

In one of the first scenes a teenage mother bears a child out of wedlock. The infant is snatched away by her parents and given up for adoption. Childless and grieving, the new mother is immediately cast into the asylum where she is forced to do hard labor in its institutional laundry. On her first night there, robbed of the child meant to nurse at her bosom, she suffers the excruciating pain of engorgement and the indescribable despair of knowing she’d never hold her child.

My heart hung heavy as I watched. I ached for the girl, knowing her physical pain—I’d felt it myself—grieving her loss, her despair. The scene reduced me to silent tears, its watery images skating across my vision like sharp sheets of ice, for I knew it’s truths, and I knew of other such atrocities in the world that were ongoing just as I sat comfortably watching the film.

When Calvin was born he came unexpectedly early—six weeks premature. Because of his neurological problems we had planned to deliver him during a scheduled cesarean in Boston. There were to be a number of specialists at our side: pediatric neurologists, a neurosurgeon, neonatologists and donor platelets in case of a suspected brain bleed. But Calvin surprised us all when he decided to come on his own and therefore had to be delivered by emergency cesarean in Portland. Some of my platelets were hurriedly extracted in case he needed them. The result was a platelet count so low that, if given an epidural, I’d risk a spinal bleed. So they put me under a mask, pumped anesthesia into my veins and cut Calvin out. I didn’t see my wee boy until he was twenty-one hours old. Even so, he was just beyond my reach inside a clear plastic capsule under bright lights in a room filled with alarming buzzes and bells, busy nurses and masked doctors tending to several other preemies each boxed in their own isolettes. It felt like days before I was able to hold my precious newborn, albeit, for mere minutes at a time. My body literally ached for Calvin, day and night.

Often it’s a movie like The Magdelene Sisters and, more recently, Philomena, that moves me to tears and provokes such thought. But sometimes it’s a news story describing the victims of an earthquake or tsunami or genocide or human trafficking, that causes me to deeply reflect on the suffering others endure. I remember walking the streets of Addis Ababa, Ethiopia with my brother Matt on a layover from Egypt going home. We saw countless, hungry poor slumped on hot sidewalks wearing rags with their crippled, malnourished, disease-ridden children propped at their sides, a few coins at their feet. Flies encrusted their watery eyes as they held out slender hands. I gave what I had in my pockets knowing it wasn't enough.

Encountering these hungry people reminded me of the first time I’d seen a homeless person lying motionless on the streets of Seattle as passersby nonchalantly stepped over him to get where they were going. I’d touched my companion’s arm to stop and ensure that the man was okay—alive—and was ushered to continue on. I worried for him and was shocked by the apathy.

Since then I’ve tried hard to put myself in others shoes, tried to walk just one puny mile in them—and yet—can never fathom the marathon of their suffering. I try to make a difference in some small ways—do what I can—but it's never enough. And then I crawl into my bed at night and dream of my little boy, asleep in the room next to me, warm and dry and fed, a scene that—tragically—to some would seem real only in the movies.

The Magdalene Laundries

darkness and silence

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.

—Helen Keller

photo by Michael Kolster

christmas thanksgivings

having not lost power in the ice storm. the twenty bucks—which we'll be paying forward—that we randomly received from another shopper who wanted to help pay for someone's groceries. not stepping into rudy's poop this morning. blue sky. healthcare. heat. hot water. calvin walking like a star in the grocer, pushing the cart like it's nobody's business. homemade bourbon eggnog in the afternoon. old movies. wool socks without holes in them. a good book. smiles from strangers. smart friends. funny hubby wearing long johns and singing made-up words, horribly off-key, to holiday songs. laughing so hard i cry. mom. hugs from calvin. people who want to change the world. neighbors. writing. quiet. sleep. pumpkin pie. jane's roast beast with yorkshire pudding. dewitt's holiday getup. fire in the hearth. gimpy dog. togetherness. cheesy holiday music. sunset at simpson's point. happy kid.

Simpson's point, photo by Michael Kolster

ice storms

ice storms: rousing. beautiful. treacherous. lonely. unpredictable. silent. unnerving. still. winsome. smothering. haunting. worrisome. electric. luminous.

seems apt that my boy calvin was born into one.

photos by Christy Shake

ice and waves

From Saturday.

Water drips off the tips of icicles to the ticking of the clock. The wood stove creaks as I sit curled up on the couch with my worries, listening to a wordless kid trill and spurt and cough and shriek, his clatter drumming against my brain like the roll of impatient fingers.

Last night’s bath had been warm, perhaps overly so. The smell of a roasting crown of pork wafted up the stairs into the bathroom thick like soup. Calvin excitedly kicked and splashed, capsizing several times, his foam helmet inching down over his eyes but protecting his head nonetheless.

Quarter to five, I thought, almost seizure time, as my boy quieted and stilled in the water. I peeled back the clear plastic curtain to regard his face, which had flushed like a rose, his eyes rolling back into their sockets as if he were about to faint. “He’s having a seizure!” I called down to Michael who leaped up the stairs within seconds. Together, we lifted Calvin out, laid him naked on our bed. We watched convulsions surge through his body in waves, watched him gag, his lips, fingers and toes turning greyish-blue like death. My poor little merman, I thought, as I stroked his smooth skin calling him back from the abyss.

After five minutes it was over, then he slept twelve hours through the freeze and the thaw.

Today he is intensely crazy and stubborn, exhibiting many of the signs that seem to precede a seizure. The full moon is waning as it does so often on seizure days, perhaps coincidence, perhaps not.

Outside, the temperature sinks with the sun, the trickle slows, the drips soon freezing into knives. There is an ice storm coming, like on the night Calvin was born. In a few hours everything will be caked in it, layers of ice masking the trees in crystal bark, pine fronds becoming frozen fingers, glazed windows and doors iced shut. A thick, shining crust already glosses drifts of snow. It’ll be so silent part of me might hear the crystal fractals forming over glass in patterns of waves or whitecaps, while the rest of me will be listening for Calvin’s shallow breath.

back in time

Every weekday morning, after I put Calvin on the bus and slug down my cold coffee, I take our dog Rudy for a walk. Often, we head into the stand of trees that borders the vast athletic fields near our home. We amble along a wide path now muddy and strewn with autumn leaves, listening to the din of a lone woodpecker high in a long-dead tree. A loose chain of houses lines the path, their back yards spilling into the clearing, some fenced, others not. As we approach, one house in particular begs me to pause. The structure, a brick ranch style home with a dark shingle roof, reminds me of the house I grew up in, lived in from the age of two until I turned twenty. As I gaze at the house my emotions become visceral, as if I might witness my father walking right out the sliding glass doors onto the sloping lawn, or perhaps my mother, wearing her patchwork apron, ringing the patio dinner bell. I see this house and I become a kid again, a tomboy clad in dirty hand-me-down Levi’s, rubber-toed sneakers, a t-shirt and a worn out hoodie.

Living on a secluded lot with few neighbors, I considered my house and the rocks and trees surrounding it as my friends. I had named the twin fir trees flanking our gravel drive Huey and Louie. A born tree climber, I’d squirrel my way up through the spokes of their sappy branches and straddle myself far above the roof gazing at the Seattle skyline and, on clear days, the Olympic range beyond. On summer days I’d mow the lawn and feed handfuls of clippings and wormy apples to the neighbors' horses. I’d lay for hours on a threadbare towel worshiping the sun and surveying images in the clouds that passed overhead. I’d nap in the supple shade of a plum-colored Japanese maple as cherry blossoms floated  across my face. In the remnants of a rotted-out old cabin in the adjacent wooded lot I’d dig for old bottles and other treasures. What really captivated my attention was studying ladybugs, dragonflies, slugs and bumblebees. I’d fashion daisy chains with dandelions and buttercups or make a blade of grass sing between my thumbs. In the still of afternoon I’d braid my hair in pigtails, weave colored plastic strips into a square-ish lanyard, plait a bracelet of white string like I learned at camp, one I’d wear on my brown wrist for the entire summer and well into the school year until I had to cut it off it got so dirty. When it rained I made mud pies, stomped in puddles, hid in the hollow arch of trees, watched earthworms emerge from the grass only to be gobbled up by quick, red-breasted robins.

Somehow, standing there on the wooded path facing some stranger’s brick ranch, I yearn to step foot into the yard and go back in time, to a time when I hadn’t a care in the world save the burden of simple chores, back to a time when I didn’t fret constantly over a wordless, disabled child with a rampant seizure disorder. I want to bring Calvin back with me and introduce him to my father, my mother. With net in hand, I want him to chase butterflies with me—catch and release—and frogs just the same. I want to lay with Calvin on a ratty towel sinking into the grass and just be—still—not chasing around a boy on the end of a harness who never stops moving, not long enough anyway to gaze at the sky, not long enough to regard a bird or smell a flower or pause simply to soak it all in, a boy who I’ll never be sure can use his imagination at all much less consider the rocks and trees or the faces sculpted in clouds.

From last December.

solstice

After a long hiatus, I finally broke down and did something I wasn’t sure I’d ever do again, which was to buy a Christmas tree and decorate it in time for the solstice. As in past years, I did it by myself, driving into a vacant lot then strolling between rows of tightly-packed trees searching for the perfect specimen. When I lived in San Francisco I had a bent for very large Noble firs nearly twice my size and with ample space between each sturdy branch, enough to allow the ornaments to display their grandeur—the sparkling pickle, the Santa head, the sombrero-wearing tomato, the iridescent glass ball, the Star of David holographic glasses—all gifts from my annual holiday party guests.

This year, succumbing to a slight longing in my heart for what in my mind is more of a solstice tree, its lights and shiny baubles reminding me of longer days coming, I went in search of the perfect little Charlie Brown conifer. I found it propped sideways against a picnic table, its trunk stuck in the snow. “How much for this one?” I asked a man with rosy cheeks whose answer, “Ten bucks,” was wrapped in a puff of cold air. I slipped him the bill, wished him well then grabbed the tree with one hand and laid it into the back of the car.

Once home, I dusted off a solitary box of Christmas tree trimmings, hanging the shiniest ornaments on the fingers of a thin tree no higher than my shoulders. I hope Calvin likes it, I thought, knowing how much he is drawn to light. Then I paused remembering why I'd stopped decorating trees in the first place, that a lonely hollow has carved itself into my heart knowing my boy will likely never help me decorate a tree, will never understand any of the holidays of the season. We will never make gingerbread cookies together, cut snowflakes out of sheets of white paper, make a snowman or push cloves into an orange. He won’t sing in a holiday concert or carol from door to door. He won’t write a poem about what the holidays mean to him or contemplate the significance of it all.

And, so, the essence of the holiday season remains for us: gatherings with friends over glasses of wine and spirits, plates filled with comfort food, rolling fires and laughter, celebrating the simple pleasures of life and the promise of longer days.

friday faves - clover (video)

From last May.

While surfing Facebook last Friday I came across two photos, one of a purple clover, the other of a beautiful little girl with the inscription, "In loving memory, Clover Dohman 6/23/09 - 5/23/13." Knowing that purple is the color for epilepsy awareness I Googled Clover's name and found this video, which reminded me some of the first year or so after Calvin's diagnosis, and is a testament to the often overlooked fact that epilepsy is menacing and can often be lethal.

My heart goes out to Clover's family and to all children and their families who suffer the scourge of catastrophic epilepsies such as Dravet syndrome. Do what you can to raise awareness and funds for a cure and advocate for the use of medical marijuana, one of the few treatments that can help save these children.

forgiveness

With a Chapstick in my hand I scrawled the words YOU SUCK on the upstairs bathroom mirror, then stepped back to admire my work. In its reflection I flossed and brushed, chuckling about my response to what had just happened.

It’d been a silly incident, a prank that had been played on me one-too-many times and which had lost any humor it might’ve once held partly because I was too goddamn tired to endure it. In front of our friend Charlie, who is no stranger to our marital banter, I rebuked my husband, asked him to please keep the music down, once and for all, then excused myself and went up to sleep in the room right above the stereo.

Lying in bed I could still hear their voices, though thankfully not the music, which had, as I had hoped, been kept at a reasonable level for my benefit. Chronically sleep-deprived from year upon year of multiple nightly wakings to check on Calvin who is rustling or crying or uncovered or having a seizure, I had no problem falling right to sleep.

A couple of hours later Michael crawled into bed and scooted up next to me. “You suck, too,” he told me in a low voice not quite a whisper. “I know,” I replied, and I heard his breathing slow then deepen, felt his warm legs next to mine, heard the hum of the baby monitor by my head then drifted—again—off to sleep, with the satisfying knowledge that, as quick, relatively painless and easy as usual, all had been forgiven.

readers write

When the nights are long and the days cold and cutting to the bone, I turn to the loving, sustaining words of my readers, some of who are strangers, but all of them friends:

The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO 

—Betsy

I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. What I have to offer isn't much, I have a brain that thinks about the meaning of things. I think about what it really means to be disabled. I think a lot about the relationships in our lives and what love makes us capable of. I think about what it means to be a parent. I think about death and grief and love. I think a lot about Calvin. I would be honored to correspond with you more. I'd love to join you on your journey, in whatever way that seems right. Please feel free to contact me. If not be assured that I am here, listening. 

—Kaila-Ruth

My background is in modern dance, and there is a technique codified by Doris Humphrey called "fall and recovery" - the idea of opposing forces of contraction and release, mixed in with the natural rhythm of the breath. I see Hailey recover from a seizure fall - with no tears, maybe no understanding of what has even happened, and I am awed by her strength and resilience. I sadly think sometimes it's better that she doesn't know. At 14 she is the strongest girl, and soon to be woman, that I know. I hope you and I keep recovering as we go through our own falls. I read your recent post about the bitter pill and all I can say is - I understand and I'm with you.

—Amy

Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo
 

—Lauren 

I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other. 

—Anonymous

I've learned to never get in the way of a mad mother. Go for it full throttle and may the Force be with you all. My prayers and best wishes for you to get some sound answers to your questions.  

—Ray

You ARE surrounded by those who love you, and there are many out there who have traveled the same path for years longer, who know exactly what you're feeling, have shared your shoes. Sending you love and comfort and continued strength and courage. 

—Elizabeth

fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale-force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

Originally published last December.

photo by Michael Kolster

anatomy of a greeting

Though many in this country might wish it to be so, not everyone celebrates the birth of the Baby Jesus. Recently, I’ve been racking my brain trying to figure out exactly why it troubles me so that some who celebrate Christmas complain about the use of the greeting, Happy Holidays, a noble, big-hearted phrase that has been in use for as long as I can remember and therefore is at least as old as bell-bottom jeans, Barbie dolls and Hot Wheels and probably dates back to Dickens' time. Instead of choosing to greet people in the holiday spirit, these naysayers, as I mentioned in a previous post, vow to slight non-Christians by Merry Christmasing "the crap" out of them. Doesn't sound to me like something Jesus would do.

Standing under the fingers of a hot shower, I contemplate. I do some of my best contemplating here, running my hands through my hair, filling my mouth with water, rocking back and forth under its stream warming my chilled bones. Why, why, why am I so vexed?

My thoughts take me to a time when I lived in San Francisco, having moved there from the mostly white, mostly Christian Seattle area. In San Francisco I found myself surrounded by émigrés from all over the country, the world. I lived happily amongst poor people and rich people, black people and Hispanics, career people and homeless, gay people and straights. The ad campaigns and billboards from my industry, the ones from Levi’s, The Gap and Old Navy, all read, Happy Holidays! The message, albeit with the motive of increasing sales, was inclusive, far-reaching, open-minded, compassionate and worldly. Decembers, the city was abustle with holiday cheer. Store windows, city streets and squares gleamed with Christmas trees and glittered snowflakes, twinkling Stars of David and menorahs, the vibrant black, green and red of Kwanzaa, beautiful nativity scenes, Yule logs and Santas. The holiday spirit was alive on everyone's face.

Here in Maine, an uber-white, Christian state, I am fortunate enough to live in a community near a college, both of which embrace diversity. Many of my friends, not unlike me, are either pantheistic, agnostic or atheistic. I know families with one Jewish parent, the other Christian. I’ve known folks who observe Kwanzaa, and who, like me, prefer celebrating the solstice and the promise of longer days. Perhaps some of my friends are Muslim, Buddhist or Hindu; I don’t always know and I try to avoid making assumptions. More so, to assume that our nation’s default position is—or should be—Christian is, to me, thoughtless, self-righteous and ignores the lengths to which this country has gone to preserve religious freedom.

As water runs in rivulets into the basin I also consider that these particular Christmas zealots, had they been born in another place or time, would likely have found themselves to be Hindu or Muslim or Buddhist or Heathen. Further, I consider my boy Calvin and his utter incapacity to contemplate the existence of any God much less the meaning of Christmas, its religious or secular bent. To some extent, the fact that Calvin is non-verbal and cannot understand abstractions or the meaning of particular events such as birthdays and holidays, while we ourselves wish to partake in some of the pomp and circumstance of the festive season, we treat these winter days as if they were another Thanksgiving, mostly void of presents and dogma yet full of harmony, love, generosity, home-cooked meals, Michael's bourbon eggnog and humble gratefulness for it all. We’ve been lucky enough to be included in friends’ celebrations of Hanukkah, in Christmas tree trimmings, in Black gospel nativity concerts and holiday chorals, in Christmas Eve parties and annual Christmas dinners and in gatherings for the solstice. At each I learn something I hadn’t known before, about what others cherish and put their faith in. In each I see smiles beaming from the faces of the young and the old, the black and the white, the Jewish, the Christian and the atheist. All are beautiful. All are to be celebrated, respected and honored, not scorned or held in contempt by some hateful sound bite, which I now understand, after a long hot shower, is the sanctimonious behavior at the root of what irks me so.

photo by Michael Kolster

marijuana and the ailing child

Written by my friend Mary Pols and published in today's Maine Sunday Telegram

On a dark night in November, Meagan Patrick drove from her home in Acton with her husband, Ken, and their two children to a medicinal marijuana dispensary in Portland. Ken parked and went in, while Meagan and the kids waited in the car. “It was literally in a back alley,” said Meagan, a 31-year-old third-grade teacher.

Just a few months ago, this errand – shopping for medicinal marijuana to treat her baby daughter’s epilepsy – would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 13-month-old Addelyn – “Addy” – to begin the process of becoming a resident there, far from family, far from Ken’s job and their woodsy home in southwestern Maine but close to what she believes may be her best hope for her child’s future.

About 100 families nationwide have already relocated to Colorado in order to obtain a strain of medical marijuana known as “Charlotte’s Web” that has been shown to be effective in treating children with epilepsy. Originally called “Hippie’s Disappointment” by its growers because of what it lacked in traditional potency, namely the THC (tetrahydrocannabinol) that gives users a psychoactive high, this strain of high CBD (cannabidiol) marijuana was renamed for a little girl named Charlotte Figi. Researchers at the University of Reading in England found evidence that cannabidiol, one of many components in the marijuana plant, can radically reduce the number of seizures in epilepsy patients; it reacts with receptors within the body and works as an anticonvulsant. That was borne out by Charlotte Figi’s case; at age 4 she was having 300 grand mal seizures a week and had run out of pharmaceutical options. In her first week on this cannabis-derived medicine she had just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they pass a certification process with the Department of Health and Human Services’ licensing board. But the nearly two dozen Maine families who want to try it have run into numerous roadblocks.

The first is supply. Charlotte’s Web, developed by Colorado grower Josh Stanley and his five brothers – widely referred to as the Stanley brothers – is not technically available in Maine, as the Patricks found. But Charlotte’s Web rumors fly through this network of parents, many of whom originally connected on a private Facebook group called Maine Epilepsy Parents United.

Some say there’s something just like it, or close enough, or that a Maine grower might be secretly working from a clone of the Stanleys’ plants. Others whisper that someone in California might be willing to mail another high CBD-strain to Maine. Or that maybe the high-CBD strain isn’t needed at all, that maybe the plant in its raw form could yield a medicine just as helpful. In this world where mothers ruefully count up the number of pharmaceutical options that haven’t worked on their kids and dread the possible side effects of whatever comes next, nothing seems certain but the desire to give a natural product a try.

The second major obstacle is legality. It’s not as simple as going to Colorado to pick up some clones of the Stanleys’ plants and bring them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a Schedule 1 drug without any known medical benefits and with potential for addiction and abuse; it’s in the same category as heroin and LSD. Anyone who imports it across state lines risks being charged with drug trafficking.

Even if a Maine family can obtain something similar – growers in Maine are working on high-CBD, low-THC strains right now – many of these children regularly cross state lines for doctor’s appointments at Boston Children’s Hospital or Massachusetts General. Their medicine has to go with them. As Joan Smyrski of Maine’s Division of Licensing and Regulatory Services for medicinal marijuana points out, that’s a lawbreaker.

“It’s drug trafficking,” she said. Read More ...

photo by John Ewing/Staff Photographer

the moon and the twinkling stars

From last December:

In bed alone last night I hugged my knees to my chest in an effort to keep warm. I gazed sideways out the western window at a web of black branches and a scant mist suspending the moon, which appeared as a stemless goblet half full of shining silver. I thought about the twenty Newtown, Connecticut first-graders and it occurred to me that the moon might be holding all of their brightness for the rest of us to see.

I’m having a hard time not thinking about those children, but perhaps I shouldn’t be trying to avert my thoughts, shouldn’t attempt to move on so quickly, or forget. As I sat in the doctor’s office eyeing glossy magazines with names like, Parenting, Family and People, I thought of them again. I picked one up and thumbed through its pages, which were plastered with images of happy families, proud parents with their beautiful kids reading, snuggling, smiling. I usually avoid looking at these kinds of periodicals since they underscore so many things I am already painfully aware that I am missing out on, being the mother of a severely disabled child. I wonder how the Newtown parents might react when they see this kind of stuff or watch television with its stacked nanoseconds of happy, healthy, glowing, well adjusted, perfectly complexioned children saturating the airwaves. It must burn, stab, strangle, eviscerate—perhaps even kill.

Their days must be long, if that word can even come close to describing the protracted misery of a minute’s passing in the absence of one so innocent and adored. My own days drag on caring for a child who we feed, bathe, hug, kiss, keep warm and dry and safe, though little more. It’s monotony at times, and yet completely incomparable to the plodding torment of these parents and families who’ve been robbed blind of their most prized possession.

But then my mind wanders back to the moon, that brilliant cup reflecting the suns rays so brightly that, even half-full, it illuminates all that would be black in its absence. I think of those children who are gone from this world but not from this universe, and I see them too as tiny points of light, a twinkling star in the sky reserved for each one of them, and for us to delight in, rely on and wish.

http://www.trekworld.com/2012/11/23/mount-baker-moon-and-northern-lights/

friday faves - twenty six

Stepping
into a seaside childhood morning
—only colder—
Wind whipping,
Moist and grey and brisk,
Rudy by my side.

Muddy
gravel underfoot,
Bits of sandy ice, a soggy cigarette butt.
The chapel bell begins to ring,
I stop to listen,
and count.

Twenty-six.
My head hangs low
and sorry,
Straining to hear each faint toll
amid the hiss of traffic
rushing by.

The fields,
A semi-frozen marshland.
My ribs lace up,
Wind whisks away each breath,
I begin to sob into shallow
glass puddles.

A sudden squall
evokes a school of hushing voices.
The tops of watchful trees
Standing tall and firm,
yet swaying
Nonetheless.

Silent forest,
distant barking dogs,
A murder of crows looks on.
Thwap, thwap, these rubber boots against
Bare calves
Sting.

The skies
are silver, lead and low.
Shivering limbs set free cool droplets
like tears upon my face,
One for each child lost we must remember.
 Twenty-six.

In loving memory of the Sandy Hook Elementary School victims.

photo by Michael Kolster

gleaning green

The speed at which information can be gleaned astounds me. A little over a year ago I first began comprehensive research into medical marijuana for the treatment of epilepsy. Subsequently, I asked Calvin’s neurologist whether she thought we should consider trying it for Calvin since ten antiepileptic drugs and two dietary treatments had failed him. She dismissed the idea citing that there was no hard and fast evidence proving its efficacy and that it remained illegal at the federal level. Less than six months later she was testifying before the Massachusetts Department of Public Health on the benefits of medical marijuana for treating medically refractory epilepsy.

Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.

Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.

During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.

For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.

All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.

It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.

photo by Michael Kolster

before sunrise

Pitch black outside, frosty cold and damp, the sun not having come up yet. I sink my chin into the ruff of my winter jacket, fighting sleep, fists shoved deep into my pockets. In the back seat of Pam’s beater Nova, I’m nestled in next to my buddies, Lidia and Katie, tracing smiley faces on the steamed up windows. The dots I’ve made for eyes melt into tears.

We idle silently in darkness as other cars begin to arrive, each shining its headlights into our warm interior, square patches of light shifting and panning over our tired faces. We wait for Coach to arrive and unlock the door, secretly hoping he won’t show so we can go back home to bed because we need our sleep, which is perpetually denied. With boyish bodies, narrow hips and flat chests, we are fourteen, but on our way to making the change.

Undressing in tired silence, we strip down to the chlorine-bleached swimsuits we’d slipped on under our school clothes before dawn. The tile floor feels cool and slick. We dread what is about to happen—at least I do. One by one we saunter out to the pool deck, snap on our swim caps, tuck in our hair, adjust our goggles and peel off into the tepid water. The first plunge is a shock, but then we get moving, creating a swift eddy within each narrow lane. The water tastes like soda ash and sweat. Soon we feel the pain—the pain of burning lungs and muscles starved for oxygen, the ache of churning limbs gone miles given little time to rest and cling to the gutter. We watch the clock, which with its large flat face watches us—mockingly—its austere second hand mercilessly sending us off with only moments to catch our breath. We repeat this pain after school. We repeat it the next day. We repeat it the next week, the next month, the next year, and the one after, and the one after, and the one after. We are aquabots. We are jocks. We are mermaids. The water is our second home. It softens us and hardens us at the same time. We become it—malleable, forgiving, resistant, reflective.*

These days I experience much of the same, waking before dawn, sleep deprived, to see the sun just beginning to come up, dreading what is about to happen, shocked by the sound of Calvin's first whine. The clock labors along as we pace back and forth and back and forth between bookcase, shutters, table. I taste the bitter pill of monotony, worry, frustration, of what has, in great part, become my life. I repeat it all the next day, the next week, the next month, the next year. My boy Calvin softens me and hardens me at the same time, my dotted eyes sometimes melting into tears.

*Excerpt from a work in progress temporarily titled Memoir.

tree trimming

Stepping into the house for the tree trimming I smell hints of what I think are pine-balsam, apple-cinnamon and vanilla. The cold follows us in from outside as we pluck Calvin’s coat off and navigate him through the kitchen, hand in hand, into the dining room trying to keep his fingers off of tables and out of guests' drinks.

Instantly, our hostess Lauren and a kind friend of hers I’ve never met descend upon us, crouching over to receive our boy. Calvin gets a hug from them both and a piece of orange slice from Lauren's friend, whose name, regrettably, I don't catch. I glance up to see a man wearing felt antlers grasping a glass full of ice and punch. At first his gaze avoids mine while his partner looks curiously at Calvin. I wonder what they are thinking of us, their slack mouths taking sips of booze with blueberries, their blank expressions fixed on us like magnets seemingly void of holiday cheer.

Lauren offers Calvin a gluten-free dairy-free chocolate meringue cookie. I pinch off a piece and pop it into his mouth. He seems to enjoy its crisp, chewy texture and opens his mouth for more. He can't sit still so together we squeeze past a few guests on our way to the Christmas tree where we find another handful of friends. We exchange hugs with several then Michelle and I grumble about recent, ignorant, mean-spirited posts on Facebook by so-called Christians whining about the use of the increasingly popular and considerate greeting, “Happy Holidays,” then, in the same posts, vowing to offend others by “Merry Christmasing the crap” out of everyone. Really.

The tree, alight with bobbles and bangles and holiday lights, glows in the cozy room, which is filled with laughter and conversation. Calvin remains quiet and engaged for the most part, but then eventually begins yanking my hair and heads toward the door about thirty minutes after our arrival. When he begins to fuss I tell him that we are going home and he quiets. I know he understands me, and that is a gift of the best kind, the kind that can't be bought in a store, boxed up and wrapped in paper and string awaiting the arrival of Christmas.

onfi (clobazam)

Onfi (clobazam) is one of the two antiepileptic drugs that Calvin takes to control his seizures. It appears to be only partially effective even though his dose is far from small. It is a benzodiazepine derivative related to Valium, which means it has the tendency to cause addiction. As you might imagine, it has bad side effects, the most common of which are headaches, dizziness, drooling, poor coordination and drowsiness, though that list represents just the tip of the iceberg. It makes Calvin drool a lot and it seems to cause him to be hyperactive and agitated and possibly suffer memory problems, which may contribute to his protracted development.

One morning last week I read the following sober news about Onfi in a regular email which I receive weekly from the Epilepsy Foundation's Epilepsy Therapy Project:

The U.S. Food and Drug Administration (FDA) is warning the public that the anti-seizure drug Onfi (clobazam) can cause rare but serious skin reactions that can result in permanent harm and death. We have approved changes to the Onfi drug label and the patient Medication Guide to describe the risk of these serious skin reactions. Patients taking Onfi should seek immediate medical treatment if they develop a rash, blistering or peeling of the skin, sores in the mouth, or hives. Health care professionals should discontinue use of Onfi and consider an alternate therapy at the first sign of rash, unless it is clearly not drug-related.

These rare but serious skin reactions, called Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), can occur at any time during Onfi treatment. However, the likelihood of skin reactions is greater during the first 8 weeks of treatment or when Onfi is stopped and then re-started. All cases of SJS and TEN in the FDA case series have resulted in hospitalization, one case resulted in blindness, and one case resulted in death.

Onfi is a benzodiazepine medication used in combination with other medicines to treat seizures associated with a severe form of epilepsy called Lennox-Gastaut Syndrome. Serious skin reactions have not generally been associated with other benzodiazepines.

Patients should not stop taking Onfi without first talking to their health care professionals. Stopping Onfi suddenly can cause serious withdrawal problems, such as seizures that will not stop, hallucinations (hearing or seeing things that are not real), shaking, nervousness, and stomach or muscle cramps.

The Onfi drug label has been revised to add information about the risk for serious skin reactions to the Warnings and Precautions section and to the Medication Guide.

The revision reads as follows:

Serious Dermatological Reactions
Serious skin reactions, including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), have been reported with ONFI in both children and adults during the post-marketing period. Patients should be closely monitored for signs or symptoms of SJS/TEN, especially during the first 8 weeks of treatment initiation or when re-introducing therapy. ONFI should be discontinued at the first sign of rash, unless the rash is clearly not drug-related. If signs or symptoms suggest SJS/TEN, use of this drug should not be resumed and alternative therapy should be considered.

And so, it is with great anticipation and hope that we will be able to begin Calvin on a medicinal cannabis therapy soon, perhaps just after the turn of the new year. We are full steam ahead and I will be sure to apprise you of our progress.

happy birthday matt

Today my brother Matt turns fifty-four. For the past six years or so, since before he and his wife Stacey got married, they've been taking care of my mother who was diagnosed with Alzheimer's about a dozen years ago. As a result, Matt and I are living strangely parallel lives in that we are both primary caregivers for disabled loved ones. It's a tough road taking care of these family members, Calvin and my mom, who have great trouble communicating, must be bathed and toileted and fed and supervised, who are unsteady on their feet and who take loads of medications, Calvin for his epilepsy, Mom for her Alzheimer's.

Taking care of Calvin means I have a hard time getting away to see my mom, much less enjoy a vacation of my own. Matt and his wife, I imagine, feel equally trapped, not that it is impossible to vacation, just not easy.

So, happy birthday Matt. I hope you can get out for a long walk and a nice dinner and try to relax some. I'll be toasting you tonight.

falling down

The greatest glory in living lies not in never falling down, but rising every time we fall.
 

—Nelson Mandela

photo by Michael Kolster

dear miss christy

December 5, 2013

Dear MiSS Christy,

I think Calvin is a very kind boy. He is the second best singer I have ever seen. He is a really good walker. Thank you for comming for a presentation.

Sincerely,
N—

Dear Miss Christy,

Thankyou for coming into are class. I learned a lot it was fun hearing what Calvin can do and what he can’t. It was fun learning about epilepsy.

From,
J—
 

Dear Miss Christy,

Thank you for telling us about epilepsy. I hope that Calivn will learn some new words soon! I hope he is happy.

Sincerely,
A—
 

Dear Miss Christy,

Thank you for coming to our classroom. I am really happy for you talking about your son.

Sincerely,
A—

Dear Miss Christy,
Thank you for coming to our classroom. I thingk it must be hard to do all that work. You certainly know a lot about epilepsy. I also think you know a lot about Calvin!
From,
I—

Dear Miss Christy,

Thank you for coming in. I would like to know more about Calvin. Thank you I enjoyed it.

From,
E—

Dear Miss Christy,

Thank you for telling us about him can we learn more about Calvin? And I can tell he likes to sing And he is alot better at walking.

From,
K—

Dear Miss Christy,

Thank you for comeing to our class. I think Calvin is really nice. I learned a lot from you. I enjoyed it.

From,
K—
 
Dear MiSS christy,

Thank you for coming to our class room. I learned alot about epilepsy and Calvin. I learned that epilepsy can make you not know alot of stuff.

From,
R—

Dear Miss Christy,

Thank you for coming to our class and teaching us about epilepsy. I realy injoyed it. I hope Calvin learns how to talk, read, and wright.

From,
T—
 

Dear Miss Christy,

I really liked when you came into our classroom and did a presentation on Calvin and how it is hard to comunicate for him. I really liked how you spended you’r time coming in. I really understand how it is hard for Calvin. I really enjoyed when you were talking to us. Because it was fun listening to you. I feel really bad for Calvin that he has a disability of walking and understanding other people. I have a person on my bus who has a disability of some things too.

From,
A—

Dear Miss Christy,

Thank you for coming to our classroom to talk about Calvin and epilepsy. I learned a lot about epilepsy. I really enjoyed the time.

Sincerely,
J—

Dear Miss Christy,

Thank you for helping us to learn about epilepsy. You showed us that actualy we all have disabilities. I hope you find new ways to help Calvin comunicate.

Sincerely,
C—

Dear Miss Christy,

Thank you for comeing I relley liked haveing you here. I want to lern more about epilepsy and Cavlin was in my class in Kindergarten.

From,
S—

Dear Miss Christy,

Thank you for coming to my class. I really enjoyed you telling us about Calvin. I hope he outgrows his epilepsy.

Love,
M—

Dear Miss Cristy,
Thank you for comeing in to our class and talking to us about epilepsy. I learned alot. You are very nice just like Calvin.
Your friend,
H—

Dear Miss Christy,

Thank you for coming to our class. I really liked learning more about how brains work. I really liked getting to know more about Calvin. I love his singing! I hope more classes get to hear your important message.

From,
Mrs. Wilson
Grade 3
HBS