3.31.2014

spring fever

My husband Michael has been away from home for three-and-a-half weeks. He’s on his way home this very minute after having shot 200 glass plates of the Savannah river. During his absence, despite a couple of rough nights, a few days without nursing help, and a sick kid on my hands, it has been fairly smooth sailing thanks to my father-in-law and a handful of friends who brought me bourbon and cheese, picked up groceries, walked Rudy, made me dinner, brought over cupcakes and homemade granola and Thai food, mixed me cocktails, called on me and slept over when Calvin was sick. Of course, things would have been a little bit easier if Rudy hadn’t pooped in the house nearly every day, if he hadn't eaten cat shit, hadn't wandered off, crossed a busy street and ended up at the Deli. Ugh.

I suppose it could have been easier, too, if it hadn’t snowed several times (again this morning), if it had inched above freezing for more than a smattering of days and, on the few days it did, if the windchill factor hadn’t made it feel like the teens. It would have been nice if the snow had melted weeks ago. Instead, I’m still looking out on a back yard covered in white and a front yard dressed in salty, gritty, filthy slush from the beaches of sand and salt the plows have been spraying on the roads and into our yard for months. Underneath the snow everything is brown. The leaves on the trees won't be appearing until mid May. Needless to say, I've got a major case of spring fever—me and everyone else in Maine.

Today is day nine. Calvin, though he’s been sick these past few days, has been in a decent mood during Michael’s stint away, which makes taking care of him a bazillion times easier. Since starting Calvin on cannabis oil, he has slept better and been ever-so-slightly calmer. At times his balance is pretty good—for him. Once or twice I've caught him making a couple of new sounds, which only the well-trained ear would notice. He has mostly stopped dropping to the ground in stubborn fits and isn’t so insistent on taking baths at all times of the day. It's still too early, however, to tell if the cannabis oil—a high THCA one, not a high CBD one—is helping to reduce his number of seizures. My gut tells me that it is, and thankfully, since he is still on a pretty small dose, there is room to move.

Sometime this week we’ll be getting the results of his antiepileptic drug blood levels. I’m anxious to see if they have changed since increasing his cannabis oil. I’ll be damn surprised if they haven’t since he’s been holding his head in his hands a lot as if he’s got a constant headache.

These drugs. They make me sick. I often wonder what would have happened had we never given him any when he began having seizures. No one had offered that as an option and, as two shell-shocked parents, we didn't know enough to ask if it was. What if we’d known about cannabis then? What nascent skills—like saying Mama once, eating with a spoon and walking without a harness—might he have perfected in the absence of a series of mind-numbing, mind-altering drugs? What kind of boy might he be? How has his behavior changed because of the thousands of milligrams of benzodiazepines that have soaked his developing brain? What kind of memory might he have had and what might he have learned as a result?

I'll never know the answers to these nagging questions—questions that come to me in the middle of the night and are nearly as vexing as my dreams of Calvin having seizures. So, I'll try to keep my mind on the positive, on the fact that the days are gradually warming, the snow will soon be gone, Michael is coming home, my spring fever will soon break and not long after we'll be barbecuing and Calvin will be able to walk in the yard again and maybe we'll be able to reduce some of his drugs and see fewer seizures and have more happy days, restful nights and simple, beautiful peace of mind.

Calvin and his nurse, July 2013

3.29.2014

today

today
creeps like
molasses on a frozen slope
ice receding at a glacial pace
the ache in my head
steady at the temples
too much coffee
not enough
leaves furl and droop
like dalí’s clocks
everything a standstill
pools and time and memory
—my son—
only the shivering
wind moves things
but not forward
not
today

photo by Michael Kolster

3.27.2014

neighbors

My mood is laden as the sky, brittle as its air. How, in this endless season, do I endure the cold, the hurt, the disappointment of life, the anything?

But I make myself content by doing simple things like visiting Calvin’s school where I see the students’ wonderful art tacked to its walls—paintings of ruffled flowers bursting in purple, green, yellow and red illuminating a place seemingly frozen in the dead of winter.

At home, the sun streams through the kitchen window begging me to get out into it. It's still below freezing and I can see that the wind is slight. Calvin is upstairs having a bath. I clip Rudy on his leash, put on my wool peacoat over my down vest, tuck in my scarf and pull on my wool hat and polypropylene gloves. I stop at Woody’s to ask if he wants to join us for a walk, but he declines, so I invite myself back for a drink later.

At the end of the block, the early evening sun casting its long shadows on the crust of filthy, decaying snow, I see Jerry and Nico and cross to join them. Her shins are bare down to her ballet-type slipper-shoes in defiance of the icy weather. I hardly see Jerry anymore, the woman who has witnessed our deep despair, at least during the first several sorry years of Calvin's life. She’s brought us dinners in the hospital, embraced me as I sobbed at a birthday party meant for all of the March babies, which should have included Calvin if he hadn’t come six weeks early. She’s brought me flowers and often appears to have a tinge of melancholy when regarding me, not a look of pity so much as a helplessness about our situation, perhaps.

Mike, Woody’s neighbor, approaches in his all-black uniform of sorts. He’s ninety-one or two and tall, reminds me a little of the Winter Warlock—melted-heart version—and I tease him as much as I can muster. He talks about the neighborhood and how it used to be, how he used to know more people and how he never sees any of the new “ones” who have moved in on all sides. He elbows me and says, “Now, all I know is the girl who walks her dog,” and when I hear him refer to me as I girl I tell him I ought to come around more often. We all laugh and, regrettably, Jerry drives off before I have a chance to really catch up.

Rudy and I amble down the lane to the athletic fields. I can smell Bob’s pipe, then I see him moseying along in his driveway and I'm surprised at how many folks are out in the cold. It must be the sun, I think to myself. “Where’s your hat?” I ask, and he tells me he never really wears one. I joke, “That’s because you’ve got hair ... probably more than I do,” having just told Jerry mine is thinning with age. Bob is in his late eighties, and we walk together a short distance just past the mailboxes, just past a young, naked oak growing at the back of his fence. The sun is on our faces, his clear blue eyes tearing in the sharp wind, and as he wipes them away I breathe in the warm, sweet smoke of his pipe. I ask him how long he’s smoked. “A long time. But I don’t swallow it,” he adds, and I smile. He asks if I know how he met Nan, and I tell him that I knew he stole her away from California when she was just nineteen. He says she’d been born in Hawaii then had moved to California when her father began teaching at Stanford. They'd met while her father was teaching a semester here, back when Bob was a student. I remark on how much she must have loved him to have left sunny California to live in Maine where in spring it's below freezing for days on end and looks like December until May. “I got lucky,” he says, and I tell him that she’d gotten lucky, too. "I hope so," he replies, then we say our goodbyes and I head off back up the street.

At Woody’s, I wipe the sand off of my boots and step inside to a warm blanket of air. Rudy follows and the cats scatter, but not as far as usual. Woody has bought some Wild Turkey with me in mind and we sit in front of the gas fire again. We complain about the weather and about the approaching storm. I mention that we’re losing Calvin’s nurse and how much I like her. We discuss the universe(s), the existence of God, of which neither of us are so sure, of the stories man has perhaps invented to keep folks in line or to explain the inexplicable. I mention the earthquake in Haiti, which has eroded into a cholera epidemic, and how some extremists said it was an act of God, a form of punishment. "If there is a God, he wouldn't take sides," I say, and we muse on the idea that our energy, our soul or spirit or whatever you want to call it, probably doesn't go away, just changes, like boiling water into steam. In a moment of thoughtful silence we sip our drinks and I think of my dad whose ashes are still somewhere reflecting the sun's light.

After the pause, I gently ask Woody about his son, and he tells me all of it and I listen and we cry and we hug for a long time and I tell him that I love him and he says it back and he tells me that I’m a good person and I mention how much I am glad we’ve met and he says how he looks forward to my visits and I tell him so do I and he says it’s just because of the chocolates and then he adds that it’s for the bourbon too and I don’t deny it and we laugh and cry some more.

We have another splash from the bottle before I leave and I promise him the next time it’ll be at my place, and we both agree that Michael won’t mind, whether he’s home or not, because that's what love and friendship are about. Then I say goodnight and I walk three houses down and open the door to greet a nurse that I love and a boy that I love even more.

photo by Michael Kolster

3.24.2014

shackles

People described it as, “pretty rough,” and, “hard to watch.” Some said they couldn’t watch it at all. But their words did not dissuade me, instead, compelled me, because I don’t want to forget our history and its legacy, don’t want to avert my eyes from the sorry truth, even if knowing it, seeing it, might be painful.

I reclined on the futon and powered through my salad while skipping through the previews, wanted to avoid eating during the film. I’d braced myself for, 12 Years a Slave, knowing it would hurt to watch, yet mindful that my hurt would amount to a speck of salt in a sea of misery that was slavery. For over two hours I buckled and wept and cringed while Calvin slept peacefully in the room next door.

Though I long for the day when Hollywood produces fewer films about black oppression and more about their triumphs (minus the storied white savior, please—and I'm not referring to Jesus) the film is good, ambitious, important. It is essential in its historic account, its black biographical perspective, of a despicable institution for which some still unabashedly wave their flags today. I must admit, however, wondering if the film's raw violence inadvertently serves to sate the sadistic fetishes of some.

An upsetting account, the film incited anger and shame for all the hateful things that mankind is willing to do in the name of prejudice, avarice and clout, such as the vile decrees that the favored, self-righteous pressed onto the masses, to which the greedy, ignorant, cowardly, and bigoted were complicit. I contemplate the shackles of slavery, its heinous laws, its vicious crimes, the craze for power, profit and tyranny, and the employment of whips, chains, muzzles, ropes and guns on innocent human beings.

I lament the fact that certain Americans still find themselves at the wrong end of a barrel through no fault of their own. I consider the film’s depiction of atrocities—of children torn from their mothers, of men cuffed, thrown into cells and flogged, of women raped, beaten and mutilated, of youths tortured for having the "wrong" color skin, for challenging authority, for defending themselves, of families splintered, workers exploited, innocents lynched, of decent, moral people being shamed, blamed, trodden upon and wronged—and I think to myself how things haven't much changed in the hearts, minds, fists and attitudes of some dyed-in-the-wool, mostly white men, and their followers, who continue to shape policy, enforce laws, issue verdicts and impose penalties on people for whom they feel contempt.

And, as always, I consider my ten-year-old son Calvin whose health and well-being are being jerked around—shackled—by a baseless federal law that demonizes and outlaws cannabis, a law unwilling to validate the plant’s proven medicinal properties and the good that it can do. I hasten to say that the prohibition of marijuana was—and likely remains—a bogus, calculating, racist measure, a twisted effort initially meant to outlaw hemp, and by doing so preserved timber and plastics industries (think Hearst and DuPont), and shored up Harry Anslinger’s struggling Federal Bureau of Narcotics during Great Depression cutbacks (Anslinger was good friends with the DuPonts, by the way.) Anslinger, an outspoken racist, fabricated data about his war on drugs and fueled its fire by slinging racial slurs about marijuana smokers, saying:

"Most are Negroes, Hispanics, Filipinos and entertainers. Their Satanic music, jazz and swing result from marijuana use. This marijuana causes white women to seek sexual relations with Negroes, entertainers and any others."

and:

“Reefer makes darkies think they're as good as white men."

Even today, black people are nearly four times as likely as whites to be arrested on charges of marijuana possession—in some states six times as likely—despite data suggesting they use the drug at about the same rate as whites. Moreover, black incarceration rates handily outpace the rates of their white counterparts, their sentences often quite harsh compared with their offense. The institution of slavery, which made white plantation owners and others rich, has morphed into the mass incarceration of our black countrymen, while the prison-industrial complex gains billions in revenue.

When the movie was over I sat quietly in the dark listening to the music as the credits rolled by. I heard Calvin rustling in his bed and wondered how I'd feel if my child were ripped away by strangers. I tried to imagine what it would be like, if I were Native or African American—or other minority—to have my homeland seized, my tribe obliterated, my culture, language and religion crushed, my village torched, my family torn apart, my daughter sold into slavery, my sister burned alive in a church, my brother thrashing at the end of a fire hose or a noose, my leader assassinated for advocating on behalf of truth and justice, my teenager murdered by a racist menace while minding his own business, my husband's life snuffed out beneath the knees of a uniformed mob, my assailant acquitted because he is white, my mother imprisoned for trying to improve my education.

I go further and imagine my brother being beaten and left for dead because he was gay, my sister raped by a commanding officer whose cronies ensure he gets off the hook, my body bruised or burned or urinated on because I am homeless, my virtue, commitment and drive constantly questioned because I need food stamps, my rights withheld because of who I love, my vote, my wage, my education, my safety, my chance at promotion impinged on just because of who I am or what I look like.

Luckily, I don't know exactly how it would feel if these injustices happened to me. But I do know, for millions in America—a country that is proudly touted by some as the greatest nation on earth—daily life is rough and painful, scary and dispiriting, unjust and seemingly hopeless. I see evidence on the news and in the papers. I hear slurs on the street and in nasty Facebook posts and at times from the mouths of people who are close to me. Sometimes it's blatant, others, insidious. No matter, it's hard to witness, much less live. But watch I will, though not in silence, and never will I be unmoved.

3.22.2014

day seven

Yanking the hair at the back of my neck, he drags his teeth across my face. He’s trying to tell me something. He whines and won't stop poking the hell out of his eye, even when he is walking. His nose is running and at times he laughs hysterically. His balance is for shit. I feel it coming. Already.

He doesn’t want to take a bath. He hasn’t pooped all day. Everything is slightly off, like the voice-over in a spaghetti western. He breathes deep in his sleep, twitches and snaps his fingers. He snores.

Still black outside, I hear him cough. Barely awake, I listen and crane my neck to see if the monitor’s green light jumps. It doesn’t. I fall back to sleep until almost six when I hear him rustling again. I detach the netting above his bed, step up on the stool and reach in to reposition him. He falls right back to sleep, snoring again.

I write to Michael a series of emails:

5:58 am
hi,
the kid is being strangely quiet this morning. i heard him cough at 4:30 but didn’t go check on him. i wonder if he woke to a seizure. seems awake now sort of. ugh. i hate this shit.
rudy pooped in his bed again even though he went out last night for a long time.
i guess i need my coffee.
xo


6:12 am
yep.
strange. even though yesterday was only day six i’d begun thinking he was headed toward a seizure. runny nose. no poop. was breathing heavily when i checked on him before i went to bed. stuffy.
i repositioned him at 5:50 and he put his arm around my neck then went to sleep. he is in a weird position right now, asleep again.
fuck. fuck. fuck.


6:38 am
just woke to a seizure.


I go up and spoon Calvin's medicines into him, take his temperature, change his diaper and tuck him back into bed.

Michael writes:

6:43 am
I’m sorry.


6:54 am
me too. only day 7. seems we add more meds to the daytime and the seizures just move to the night and early morning. fuck again. he’s asleep now at least. snoring before the seizure. poor little bugger. i love him so much. was not smiling when he came off of the bus yesterday. that is always an omen.


Quiet and content, he’s awake now. It’s twenty degrees outside. I look out the windows to see the rhododendrons pathetically shriveled and frozen. I wonder if this bitter season is ever going to give up its grip.

3.19.2014

letter to the editor

Dear Portland Press Herald Editor:

I am one in a growing number of mothers in Maine who has turned to medicinal cannabis oil to treat my child’s intractable epilepsy. Current legislation threatens to block access to this medicine, which holds promise in alleviating my ten-year-old son Calvin’s seizures and improving his quality of life when multiple pharmaceutical drugs have failed and cause him heinous side effects and developmental setbacks.

LD 1739 will soon be up for a vote by the legislature, containing current language banning the cannabis plant’s resins—its medicine—defined in the bill as hashish. According to the bill, hashish “includes the resin extracted from any part of the cannabis plant and every compound, manufacture, salt, derivative, mixture or preparation from such resin.” This language is tantamount to banning the plants’ inherent medicinal qualities, which are essential to making our children’s medicine.

The cannabis oil we make for our children is derived from the plant’s resins. The result is a non-psychoactive medicine that can be precisely and incrementally dosed, adjusted and given to our children orally. This is the only method that can be used to treat their epilepsy. Vaporizing or ingesting bud is not an option for our children because dosing cannot be measured or controlled.

Without access to medicinal cannabis resins our children are at risk of suffering continuous seizures, pharmaceutical drug side effects, developmental setbacks and death. My hope is to raise awareness of this bill that, if passed, would ban the very therapeutic compounds that medical marijuana holds for thousands of Maine’s patients.

If you want to help, please contact your state legislators.

Sincerely,
Christy Shake

Calvin's mom

3.17.2014

relics

Perched on an unfinished shelf above Calvin's bed are a dozen relics that he will likely never regard or understand. For me, however, they hold memories, a handful of images within each one—a meaning, a smile, a loss.

Some are photos from my Grandma Shake's trunk, the one that, after she died, my father told each of us to sort through and choose what we wanted for our own. I chose a rosary for its beauty, a handful of photos and a small red velvet album in which she'd written quotes from Emerson, Longfellow, Confucius, Mohammed, Buddha, Plato, Kipling, Goethe and John F. Kennedy's inaugural address. I'm fairly certain that my grandmother did not attend college, but she must have been an avid reader with an open mind. I wish I'd known her better. I really didn't know her at all.

The other photos are from a box full of loose photographs of my mother's and an album or two of her's and her dad's. My mother told me that I was the only one of my siblings who showed much interest in them. Each time I visited her I'd pull the box out of the closet and study them all. I got familiar with them, enough to recognize my grandparents, aunts and uncles at different ages. My grandpa's black-paged album had a couple of photos of dead soldiers from his time serving in World War I. There were loose photos of my dad sailing, of her mother as a girl, of her deaf brother.

On the left side of the case is a framed, candid photo of my Grandma Shake hanging laundry on a windy day. Resting against it is a cross-shaped wooden milagro that I picked up while visiting the Southwest, or perhaps Brazil, I can't remember. I was drawn to its beauty, to its tiny metal figures of body parts and beings carefully nailed to its face. There are legs and arms and hands, a pair of eyes, a few anatomically-shaped hearts and a couple of ears. There's a bird and a dog and a cow and a sheep and a rooster and a camel. There's a boy, a girl, a woman and a cottage, a horse head, a flower and a car. And in the bottom left corner, upside down, a tiny baby lays in an awkward, arching pose. I think of that baby as Calvin, often meditating on his healing.

Behind the milagro is a photo of my Grandma Shake as a young woman sitting in a big wooden chair. The back of the photo says it was taken in San Jose. By the look of her youth it was likely taken before she lived in San Francisco where my father was born and lived until the age of five. As a teenager, I'd been strangely drawn to San Francisco, but it wasn't until I lived there that I learned my father had too.

The portrait of my mother is from when she was in high school or college. She's radiant and a gleaming halo fringes her hair like sunshine behind clouds. In my move to Maine in 2001, the same year she was diagnosed with Alzheimer's, its glass broke, causing a clean crack that runs across the bridge of her nose into her forehead. My mother—broken—is still my mother.

In the center of the case rests a silver rattle that my friend Sandy gave me for Calvin when he was born. By the time Calvin had the strength and skill to play with it he'd already sprouted a couple of teeth that we feared he'd knock out with the heavy rattle, so we kept it up on the shelf. It sits next to his first pair of sneakers, denim ones with white rubber toes, which are too tiny and cute to let go.

The doorway photo of my Grandpa Shake wearing sports coat, cap and tie bears a striking resemblance to my father when he was a young man. I love it just for that. It stands next to a faded-out photo of my Great Aunt Mary, who I never liked much because she was so grumpy and always wanted me to wear dresses, but I keep the photo because in it she's walking down a San Franciscan street, where she, too, lived. I miss that place so much. Behind Aunt Mary is a portrait of my Grandpa at the age of two. He's got long blond, curly locks like Calvin used to have. In front of that photo is a favorite of me and my dad taken in 1965. Dad is dressed in his work clothes, the ones I remember him wearing when he'd stand drinking coffee and eating soft boiled eggs while reading the morning paper.

The photo on the far right is of my dad between two of his buddies. I think this was taken during his time at the Naval Academy just after World War II. At six-feet-four-inches tall he weighed about 175 pounds at most. Over the years his physique barely changed, as he kept up with running, light weightlifting and calisthenics. He'd be eighty-nine this year. It's been eighteen years since the cancer took him, robbed him of his retirement, of enjoying the great outdoors he loved so much, perhaps more so having spent so much of his life confined to an office desk.

I regard these relics I've collected and assembled into a shrine of sorts, look at them every day. They help me remember where I come from, though I'm not really sure what difference that makes. After I am gone, if Calvin survives me, he will have no desire or need for them and we'll have no grandchildren to pass them to. I wonder, and doubt, if my niece or nephews will care about them at all. The faces would mostly be strangers to them, aspects without any meaning.

Finally, I look up the exact definition of the word.

relic: 
an object surviving from an earlier time, esp. one of historical or sentimental interest.
an object, custom or belief that has survived from an earlier time but is now outmoded. 

I am struck by the last definition:

all that is left of something.

click photo to enlarge

3.15.2014

the arrival

I arrive home, wipe my feet, pet Rudy, and sit down at my computer before heading upstairs to relieve Calvin’s nurse. It’s not quite four o’clock and for a few hours the sun has been melting the drifts and banks of snow that plague our town. Along the roadside the snow looks like decaying cinder block against streets scoured by sand and salt.

After sitting for a bit Calvin’s nurse shouts to me from his bedroom. He’s having a seizure. Within seconds I’m at his bedside as she lowers its safety panel. He’s been napping. His lips are aubergine, his body still, his eyes glass. It's been years since he's had a seizure at this time of day. Today is day thirteen, he’s got a runny nose, the barometric pressure is low and the full moon arrives tomorrow; the perfect storm has arrived.

When the seizure is over, it takes him a while to fall back to sleep; he always sleeps for at least an hour right after one. His blue eyes remain vacant and half-mast, and their blinking and shifting make me wonder if he has slipped back into another one. I ask his nurse to bring me the bottle of cannabis oil. She runs it up and with her help I squeeze three drops into his mouth. As she heads back down the stairs to leave I tell her that I love her, and she smiles knowingly.

I’m keeping vigil as he sleeps. Like a cherub, his lips are carmine, his cheeks chubby and pink and his arms frame his face above his head making him look like a cameo. He rests on a pillowcase printed with a colorful woodcut of the world that Nick gave him. I study the fish and the boat and the gull, all of which I’m fairly certain Calvin has never noticed—not the real ones either. I see the continents I’ve visited knowing Calvin will likely never step foot in them. I note the seas that I have crossed wondering if I’ll ever do so again. I regard the swirling waves that touch his fingers, which twitch like aftershocks in the wash of a quake.

Within minutes of giving Calvin drops of the cannabis oil he is fast asleep. His breathing is regular, his color good. We’ve made it this far, I think, considering what a long, difficult journey it has been, then I wonder if—and hope that—like this winter, we’ve been through the worst of it. At least for now we’re headed in the right direction.

3.13.2014

conundrum

If I had to bet, Calvin is going to have a seizure tonight, and if not tonight, tomorrow. He's been amping up for the past couple of days and we're back to a screaming, flailing, hysterically laughing maniac of a child. The barometric pressure is still low and the full moon, now, is only a few days away. In addition, it's day eleven, which is how long he went between perceived seizures last time.

Something tells me that if I gave Calvin three drops of cannabis oil right now we'd avoid a seizure. Whether that something is my gut, my belief, my hope, I don't know for sure. But if I do give it to him, in doing so I'll veer off of our plan which is to learn whether the last increase of his morning and evening dose of cannabis oil is helping. It's a conundrum. I want to spare my child a seizure, but I also want to know what works and what doesn't, so I can continue a practice, a strategy, that works best.

We got half of the results back from Calvin's blood draw. His Keppra blood level is 42.6. The normal range is between 7.0 and 34.0. Makes me sick to think of these toxic drugs coursing through his little body, his brain. He's likely on an adult dose. Sometimes I wonder if the drugs actually cause the seizures. It's possible and I've seen it happen before.

My father-in-law, who is here visiting while Michael is gone, advised me, as did Michael, to stay with the plan and not give Calvin the additional drops of cannabis oil. And while I know this probably means a seizure in the short term, it may aid in a better strategy long term. So, for now I'll resist the urge, call it by what it is—a conundrum—and keep crossing my fingers and toes.

3.12.2014

toddy time

It’s just after five and the clouds are beginning to peel back. Low and golden, the sun skates across the icy sidewalk, which has begun melting into a river of muddy slush. Three houses down, as I ring the bell, Rudy poops in the driveway, the pieces of which I pick up with a blue plastic New York Times bag. Woody answers the door.

“You want to go for a walk, Woody?”
“Nah, I just got back.”
“About time for a toddy?”
“Already got one.”
“I’m jealous.”
“Want me to make you one?”
“Okay. Sure. Why not?”

I wipe my feet and step inside as Rudy squeezes past. One cat flees while the other finishes her dinner seeming not to mind Rudy. Inside, the house is warm, filtered sunlight fanning in through the kitchen windows.

“What would you like me to make you?”
“What are you having, a Manhattan?”
“Yeah, want one?”
“Got any bourbon?”
“I got whiskey.”
“I’ve never tried that. Sure. On the rocks.”

Woody tosses a few ice cubes into a blueish glass and measures out a shot of Canadian whiskey. I jokingly say he needn't use the shot glass, just fill it up. I know he thinks I'm silly. I'm glad. We retreat into the den and sit in front of the gas stove. I ask him about the room and he tells me it used to be a shed of sorts that was made into his grandmother’s summer kitchen, that in hot weather two large windows opened out onto the garden.

As Rudy pants in front of the stove we while away the time talking about Calvin and cannabis. We talk about Michael and photography and how Woody used to take pictures, ones of sunsets, inlets and fall foliage which hang amongst photos of his handsome family. We talk about his cats while one looks on from under a chair in the next room. We talk about his split pea soup, of the salmon I’ll be making for dinner and of the storm that’s moving in. Although I've learned a lot about Woody since his wife passed three years ago, I don't ask about Korea. I don't ask about his son. I don't ask if he is lonely. Maybe I should.

We drink our last sips bemoaning the season—the snow, the ice, the boredom, the cabin fever, the sub-zero temps and the fact that the long winter makes for a short spring and summer. I glance back over my shoulder and see our boat covered in blue tarp. Woody let us store it in his back yard over the winter, and I wonder when the warmer weather will come.

I put my gear back on, say thank you and goodbye, throw in a joke, then tell him that I'll see him tomorrow. I trudge home through the mud, Rudy ambling along by my side, the sun having sunk below the trees, my belly warm, my mood mellow, and the sky removed of clouds.

3.11.2014

perfect storm

By now I’d usually have seen it rolling in for at least a couple of days. We’ve got pretty much every element that makes for a perfect storm, a seizure: the barometer is nearly spitting blue from its spout the pressure is so low; the full moon is inching its way here in less than a week. it’s day nine—a recent average between seizures. So, too, has Calvin been sick these past several days, first with a fever and for two days now his temp has dipped below 97 degrees for hours at a time—with mottled skin and goose bumps to prove it—though he’s bundled up in fleece and the house is amply warm. And yet the kid is calm, perhaps suspiciously so. He isn’t whining when he wakes up. He isn’t coughing or screaming trying to dislodge his burps. He isn’t dropping down at a moment’s notice in stubborn refusal. He isn’t flailing on the changing table or in the bath. Come to think of it, he didn't have a seizure as the result of the fever. He’s simply calm, affectionate, seemingly happy and content. However, he woke early, seems a bit spacey today and doesn’t want to nap, none of which are very good signs.

The other night I watched Robert Redford’s film All is Lost. At times I thought I was watching my life in metaphor. In it, the rugged guy has a good, clean, solid boat equipped with everything he needs to sail around the world by himself. It’s clear he knows what he’s doing, has the experience necessary, is creative and resourceful. The skies are clear, the air calm. But, in the middle of a vast sea miles from land, by chance he runs into a snag and takes on water. The rest is a beautiful illustration of his relentless struggles, and as I watched Redford get bashed and torn by the sea, I felt my own exhaustion from taking care of Calvin.

Redford's character writes this as part of a letter to loved ones:

I fought ‘til the end, I’m not sure what that is worth, but know that I did. I have always hoped for more for you ...


I feel you man, I thought to myself, Calvin in the next room floating deep in sleep as I listened for his next seizure to announce itself over the baby monitor slung around my head.

Who knows if the homemade cannabis oil that we recently started giving Calvin will slow the tide of incoming seizures or, as I hope, will stop them all together. So far we haven’t reached any rough spots and things feel pretty smooth, almost awkwardly so. I just hope that perfect storm stays off shore, because once it hits there's nothing much to do but hold my breath and wait it out.

photo by Michael Kolster

3.10.2014

discretion

The high-risk pregnancy doctor delivered the news about Calvin’s enlarged ventricles which appeared in a sonogram. She said, “Your baby’s brain’s lateral ventricles are enlarged ... this is something you need to worry about ... it could affect I.Q. ... come back in four weeks.” We never saw her again.

Before he was born the neurologist told us that, due to the enlarged ventricles in Calvin's brain, he might never walk or talk. I didn’t want to believe him.

In Boston, the neonatologists tried to assuage our worry telling us that only five percent of babies born at thirty-five weeks gestation needed help breathing. Calvin was one of them.

In his first week of life the neonatologists told us he had terrible Apgar scores and low muscle tone. Several of them described him as “floppy.”

Calvin spent his first week hooked up to leads in a clear plastic box. He had trouble keeping his temperature up, had dangerously rapid heartbeat and respiration and hadn’t developed the suck-swallow reflex. The lactation consultants each gave me different recommendations. One of them instructed me not to look at Calvin while I nursed because it might distract him. I ignored her advice.

Though it was hard work, after seven weeks Calvin eventually learned how to nurse well enough to bring him home from the hospital. He was barely six pounds at that point. A pediatrician told us not to take him outside in case we “ran into” someone. I was never sure what he meant.

At Calvin's first appointment the neurologist repeated the warning that he might never crawl, walk or talk. I still didn’t want to believe him.

Specialists in Boston and Portland studied the absence of white matter in Calvin's brain, his enlarged ventricles, his blood, his body, his muscle tone, his endocrine system, his vision, his metabolism, his protracted development, his genes. Few have gone the extra mile in considering all of the questions that need to be asked and answered. Many resent mine. I ask them anyway. I press for answers.

An ophthalmologist with a notoriously terrible bedside manner said Calvin's vision was poor, but not bad enough to warrant glasses. Everything about Calvin told me otherwise. Then a specialist in Boston tested his vision at 20/1000—five times worse than what is considered legally blind. He was given a prescription for glasses and immediately began seeing the world in more detail, began seeing us.

None of Calvin's specialists mentioned the possibility of seizures, of epilepsy, though its incidence in cases like Calvin's is quite high. Luckily I had prepared myself.

Not a single specialist suggested trying cannabis to treat Calvin's epilepsy. Instead, they balked at my proposal. I went about it anyway with the help of Calvin's pediatrician. Thankfully, the others have come around, and I admire that a great deal.

3.07.2014

watch and wait

This week Calvin has slept like a baby—at least one who sleeps well. For a five-day stretch I haven't had to get up in the middle of the night to check on him. I'm pretty sure that's a record. In fact, he's slept so soundly that in the morning when I wake up and hear a silent stream over the baby monitor I've feared that he's expired in the night. He's attending to his toys better, too, spending up to twenty minutes playing with them on the floor of our bedroom without getting up to race off to somewhere else. He's a bit calmer, enough to turn the pages of a board book, a big smile creeping over his face.

On the down side, he isn't as interested in eating since we increased his cannabis oil from five to seven drops twice daily, about 0.15 mls each dose. His balance is not as good, either, but his mood has evened out some. After school I'm taking him to get his blood drawn to check clobazam and Keppra levels, his two anticonvulsant medications, both of which he is on very high doses and both of which I loathe. Tracking the results as we slowly increase the cannabis oil might give me some idea as to whether the cannabis is interacting with his other drugs causing their side effects to increase. My gut tells me that it is, and I intend to decrease his clobazam regardless, if we see an improvement in his seizure control—perhaps even if we don't.

Today the temperature is supposed to sneak above freezing for the first time in what feels like weeks. I've said before it has been a long, harsh winter, with dozens of days, including this morning, opening below zero. Outside the birds are chirping and with luck most of the snow and ice will melt away this week. I desperately need to get back to gardening and walk with Calvin outside. But for now I've still got some waiting to do, which is something that, since Calvin's birth, I've had to become accustomed to doing.

So, wait I will, watching icicles melt drip by drip and snow banks dissolve into muddy streams. I'll watch, blade by blade, the grass turn from brown to green and the mercury rise by degrees. I'll watch silver hairs sprout one by one atop my head and notice new freckles dotting my skin. I'll be counting the days since last Sunday's seizure hoping for a longer stint than before. And tomorrow night I'll be turning the clocks forward, wishing I could do the same with March, with spring, with Calvin's wean.

photo by Michael Kolster

3.06.2014

a million worries

each tiny speck
each wisp of hair
bit of gravel
clod of withered grass
and linty gossamer
in this humble pile of dirt
waiting patiently for the dustbin
represents just one of a million worries
to be considered
at any given moment
on an average day
but especially
these past eight years
and more notably
now

photo by Michael Kolster

3.03.2014

day eleven

This morning, after three or four days of a fussy, whiny, intensely grabby, shrieking, hyper boy, we have a calm one. The seizure, which happened eleven days after the last observed one and just after his evening bath, seemed to reset him. They usually do. This seizure was, perhaps, slightly shorter than most, at just about three-and-a-half minutes, and not convulsive at all. But his lips, fingers and toes appeared stained with blueberries, his skin felt hot though he his legs were covered in goosebumps, and I still feared he wouldn’t begin to breathe. I imagine Michael feared the same as we pressed into our boy kissing his face and hands.

Luckily, it would seem that Calvin is only on a tiny dose of cannabis oil—seven drops twice a day. We haven’t had it tested in a lab yet, so we don’t know the exact number of milligrams per milliliter, but compared to Paige Figi, whose seven-year-old daughter Charlotte is taking cannabis oil in Colorado, albeit of a different kind, I’m likely giving Calvin close to nothing, which means there is room to move up. And, so, we have.

We loaded Calvin on the bus this morning, and he made it up the stairs practically by himself. As usual he tried to bite the back of the seat before patting the window as if trying to say goodbye. I just got off of the phone with his school, where his ed-techs say he is doing well and is quiet, the latter of which is usually never the case. I'm looking at it as a good thing, still hoping for improvements, still searching for that elusive silver bullet in an amber bottle of liquid gold.

Calvin after a seizure

3.01.2014

gifts

Living in a town next to a small, prestigious liberal arts college and being married to one of its professors affords me a myriad of amazing experiences. Most of all, it affords me the gift of friendships with diverse, cool, smart, funny, nerdy, accomplished individuals. Having attended two state universities lost in a sea of tens of thousands of students, I find myself living vicariously through the adventures of the relatively few students, faculty and staff who spend their days just down the street from my home.

Recently, I attended a reception in honor of a new friend, a visiting Pulitzer-prize winning journalist and feminist who had given a talk at the college. I had a hard time nailing Susan down to say hello and goodbye, but in the meantime I got to smother multiple other compadres with my stinky hugs. There was Kevin, who I lovingly like to call Chuck, and his wife Ann who is totally rogue, like me. I hung with two Sues and Madeleine, who were all very interested in my recent cannabis chemistry, perhaps because they’re all science chicks. Femi was there, so we finally caught up after I gave Barry The Pres a smile and a light brush on the arm. Then I bumped into Tricia who, upon seeing me, said with a sly smile, “five drops twice daily,” referring to Calvin’s dose of the oil. I pinched two fine asses belonging to Jen and Marilyn, both who seemed as pleased as I. I hugged Accra and Lorry, though didn't see Dallas, after I’d already plastered myself on Bridget, Pamela, Anne and Frank, Jen Jack, Elizabeth, Philip, Susan and Michael, who agreed in his own way when I told him that his wife Jen’s ass was fine. With one arm around his waist, I listened to Russ tell me and Ann a funny story about tattoos; we all admitted we had none of our own ... yet. Russ followed up with another humorous tidbit which, since I can't remember it, must've gotten lost in my wine. I’m sure I held Nadia’s face in my hands, but Tess and Cristle and Hadley and Elena and David and Jaed escaped all but a glance somehow.

One of the parents (who I’ll call ‘E’) and I got to talking. E warmly complimented my blog, said it meant a lot because it served as a reminder of the time when E’s child was having frequent seizures causing frequent calls to 911. This was sad news to me. E went on to say that even though their child had outgrown the epilepsy, the rampant seizures and drugs had caused developmental problems that persist. E said, in a manner more eloquent than I can do here, that it was important not to forget, important to focus on how other lives are impacted by epilepsy, on how others struggle. E denied being a warm and fuzzy person, but I know better. I stood there regarding E as the words so artfully came forth from two lips on a face not unlike mine—the face of a loving, thoughtful, empathetic human parent. I was glad for E’s revelation to me, glad for the chills E’s story sent up my arms. E said that what I had was a gift, and I hoped so much for that to be true, because a gift should be something one gives to another, not to be kept for one’s self.

Michael and I had to split the function early to get home to relieve the nurse. I made a point to thank the dining services staff, without whom we'd be parched and hungry. Once home, Calvin's nurse told us that he had had a decent night. I crawled into bed in the room next to our soundly sleeping child, thought about all of my wonderful friends at the college, thought about E, then slipped into a deep sleep, something I seem to be getting more of this week, which is a major gift in itself.

photo by Michael Kolster