out with a bang

Saturday night we went out with a bang. With over one-hundred guests plus some wonderful folks from all over the country joining us in spirit, we managed to raise nearly $25K to find a cure for epilepsy.

The food was from the gods: melt-in-your-mouth cakes, hand-crafted chocolates, sushi, dim sum, pizza, wraps, sticky rice with kimchi, fried rice with bacon, crostini with goat cheese, antipasta, chicken salad, Greek spreads with pita, donut holes, pastries, artisinal breads and a craggy mountain range of cheese. We imbibed wine and beer while devouring some live bluegrassy music from a band of wholesome blokes.

And then we had us some FUNK.

We shared love and tears and laughter and raffled off some gift cards. Elbow to elbow we sported stinky armpits (at least I did) and sweaty foreheads and by the end of the night my dogs were barkin' even in flat boots.

My deepest gratitude goes out to everyone who has given their time, energy, money and love. If you haven't yet had the chance to donate, please give what you can to Calvin's Cure.

I did my best to capture everyone on film. Alas, I missed some of you. My apologies for not getting you in. And many are blurry and grainy because I don't like using a flash, even in low light.

Click on photos to enlarge.

givin' and gettin' some sugar

Tonight's the night for givin' and gettin' some sugar.

Michael and I are hosting our seventh annual and final CURE epilepsy benefit. In seven years we've raised over $100,000 for epilepsy research, and we couldn't have done it without the love, support and funding from friends and family—some who live close to home and others far away—including some compassionate people whom we've never even met.

This year we're expecting over one-hundred guests, at least that is how many have responded. I hope we don't run out of booze ... or maybe I do!

I want to take this chance to thank everyone who has contributed their time and energy, their money and their love. I want to thank all of the wonderful people in our community—you know who you are. You make me blush with gratitude. I want to thank the twenty-two local establishments who have contributed amazing appetizers, desserts and gift certificates galore, and to sell me the wine and beer at cost. I want to thank the men of String Tide who've sung and played their fiddles, piano and guitars for the past five years. I want to thank my friends who pickup food, set up the space, manage the buffets, greet the guests, tend the bar, collect donations and help clean up the mess and to Calvin's nurse, Beth, who stays up late watching over our son.

And thanks to all of you who have donated in honor of Calvin, to all of you who have given whether you attend the benefit or not. So far this year we've raised over $16,000. I hope to get past $25K. It's not too late to join us if you can! Visit the invite here.

So, one last time, in the spirit of giving some sugar, please donate what you can if you can to CURE epilepsy at: http://www.calvinscure.com

Getting some sugar from Lauren at last year's benefit

day fourteen

At four o'clock I heard him gasp.

"Here it is!" I called to Michael, whipping off the covers to get to my boy.

I grabbed the syringe of concentrated THC cannabis oil that I'd brought upstairs the night before, in expectation of this nighttime seizure, then I squeezed the oil under his bottom lip and rubbed it into his gums. Michael said within ten seconds the spasms stopped.

After a few minutes Calvin was asleep, his tummy grumbling and his body shivering in the wake of the fit. But by four-thirty his body had calmed and he was breathing deep and slow, my arm resting on his hip.

A year ago Calvin had a seizure as we were leaving to set up for our annual CURE benefit, which we are hosting this coming Saturday. For years he had them exclusively between five o’clock and six-thirty in the evening, hardly ever in his sleep. Since starting Calvin on a homemade THCA cannabis oil a little over a year ago, Calvin has not had a daytime tonic-clonic (grand mal) seizure for almost seven months even though we’ve reduced his benzodiazepine by seventy percent.

Maine Health and Human Services once tried to characterize Calvin’s condition as stable. We went to a hearing hoping to educate them, telling them that there is nothing stable about epilepsy and that, even though Calvin hadn’t been to the emergency room in a long time, there was no telling when he might.

Just last month we spent twelve hours in the emergency room watching Calvin seize and be pumped with four powerful sedative medications meant to make them stop. If they hadn’t stopped when they did, we would have been transported to the Maine Medical Center where they’d have given him an IV of Depakote, a drug that when he was two began wreaking havoc with his liver, and if that didn’t work he’d likely have been put into a medically induced coma, from which some kids never return.

Today is Epilepsy Awareness Day. You should know that epilepsy is prevalent: one in twenty-six of us will be diagnosed with epilepsy at some point in our lives. You should know that epilepsy can be lethal: it is estimated that fifty-thousand Americans with epilepsy will die this year from seizures or related causes such as drowning. You should know that epilepsy can be elusive: over thirty-percent of people with epilepsy continue to have seizures despite the medicines they take. You should know that epilepsy is stigmatized: nearly one in one-hundred people have epilepsy, though many still choose to hide it for fear of being ridiculed or victimized. You should know that epilepsy is chronic: there is no cure, so its sufferers must live their lives taking powerful medications that can cause horrible side effects, some of which can be lethal. You should know that epilepsy can harm development: repeated seizures and drug side effects can impede development and cause irreversible cognitive delay. You should know that epilepsy can be painful: seizures can result in serious head injuries, broken noses, lacerations, broken bones and burns. You should know that seizures can feel scary: seizures can cause dreadful hallucinations including the fear of dying.

Calvin bounced back okay from his seizure today, likely because of the cannabis oil. But there is no doubt in my mind he's in for more and, without a cure, my little boy may suffer them as long as he is alive.

Please give what you can, if you can, to CURE epilepsy at Calvin’s Cure.

The video below may be difficult to watch. If you cannot access it here, view it on You Tube here.

all the little children

Though still icy and white outside, for some reason the world looked black to me this morning. Perhaps because it was so goddamn windy, the temperature still hovering around nine degrees. Or, perhaps because of Calvin, the reason I can never sleep in past five o'clock these days. Maybe it was because I hadn't had my caffeine or that I’m weary walking circles with my disabled boy, of spooning in his seizure medicines and of wiping away his drool.

When I finally sat down and read the news about seven siblings who perished in a Brooklyn blaze early Saturday morning, it made me think of what Michael had said earlier, hoping to ease my way: things could be a whole lot worse.

After Calvin left for school, I downed my coffee, had a bite to eat, then bundled up to take Nellie for a walk. I strolled slowly, studying the pitted frozen pools at my feet. I kept imagining all the little children, ages five to sixteen, and wondered how their parents and their sister are going to cope.

As I walked, I held a kind of silent vigil for them and for all the lost children whose parents I’ve known. I first thought of Kari, a bright, most beautiful girl whom Leukemia claimed when we were both teens. I thought of Jennifer, who at seven lost her battle to cancer, too. And of Rainier, who, in the wee hours after entering the world early, couldn’t hold on. I recalled Lily and Rose, flowers of girls who never breathed their first breath, and of little Katie, too. And of sweet Kelli who epilepsy took when she was just fourteen. At twenty-three my friend Martin went down in a plane along with his dad, and the maid of honor at a wedding I was in lost her nine-year-old girl to a bullet at Gabriel Gifford’s ordeal. Childhood friends lost their young son to kidney failure, others lost their children to drug overdoses while still others took their own lives.

When I got back from my walk I remembered last night on the futon when a smiling Calvin was smothering us both with hugs, Nellie by our sides. I had said to Michael that we have a nice family. As I cleaned up this morning’s dishes and hung sopping bibs to dry, I considered my boy Calvin, who, though he will likely never utter a word, is here now, and is as pure as the rain which I hope will soon be melting away this icy cold.

the promise of spring

If it weren't five degrees outside this morning with a couple of feet of crusty snow still on the ground I might begin to think it's spring. Alas, with daytime highs expected in the twenties and thirties for the next several days, the glaciers that surround our house are not about to recede any time soon.

And yet, as I keep reminding myself and the friends I meet on treacherous frozen paths, we are heading in the right direction; inch by inch, degree by degree, we are leaving winter behind.

The promise of spring, for me, is simple. It means being able to take Calvin outside in the backyard or down the sidewalk and to the fields. It means working the earth and seeing green. It means catching the first glimpses of flowers from bulbs I planted last autumn: tulips, crocuses, narcissus. It means longer days and warmer nights and barbecues, shumai burgers and bare feet. It also means giving Calvin less and less of his wicked benzodiazepine and seeing gradual improvements in how he walks, stands, behaves and sleeps. And it means he'll be getting sick less and, with luck, seizing less often, too.

Spring is a new beginning—a time to realize dormant dreams and, after such a long, hard winter spent mostly indoors, it feels as though I've done my time. So, I'm sitting here, most impatiently, aching to be set free.

dear friends: this is your chance

This is a special shout out to my childhood friends, high school classmates and college buddies, but also to all of the remarkable people I've had the privilege of knowing and loving and partying with: If you've donated before, please give again if you can. If you've never donated, this is your chance! Join us in spirit (I know you can't join us in person) by giving what you can when you can if you can.  CURE epilepsy at: www.calvinscure.com

crossroads

I can barely talk with her anymore. It's clear, on most days, that once she figures out how to use the phone she usually doesn't know who is on the other end. She's distracted, can't answer most questions and sometimes she simply disappears. It's what's happening to her. She's disappearing, dissolving really.

I'm struck by the fact that my son and my mom, who are seventy-four years apart, are meeting at a crossroads. While Mom is losing her ability to communicate, Calvin seems more and more present and responsive, though I doubt he'll ever talk, his brain's open window to speech likely having closed soon after he began having seizures and having to take so many drugs. While Mom is gradually losing her ability to walk, at this point shuffling and taking baby steps, Calvin is walking more steadily and with less assistance. More and more my mother is being spoon fed, while Calvin's body, as we reduce some of his medicines and increase his cannabis oils, is calming down enough, perhaps, to some day use a spoon again. Both of them require a spotter standing behind them on the stairs, my mother becoming more feeble, Calvin gaining strength.

Mom and Calvin are like two ships passing. They met briefly, but have continued on their paths, each trajectory opposite of the other, while I stand in the middle watching, vastly unable to affect either course except to embrace it, and hope for them a soft landing.

hugs

Photo by Michael Kolster

remarkable things

While sitting in the front row bleacher next to Michael wiping tears from my eyes, uniformed boys and girls scuffed and shuffled back and forth on the court dribbling, passing and shooting. At times Michael’s eyes were brimming, too. We were at the gymnasium watching Brunswick Dragons Unified Basketball, a co-ed team made up of high school kids with developmental, cognitive and behavioral challenges such as Down syndrome, Autism and ADHD. The entire section seated behind us was full of fellow high schoolers who had come to root on their friends.

The playoff game went into overtime, Brunswick ultimately winning 54 to 53 due to enviable teamwork, some very good coaching, scores of wicked assists and a few three-pointers which put many fans on their feet. Every player got their chance on the court and each of them got to handle the ball and shoot. One boy’s gig was to run and set himself up at the free throw line waiting for a fellow player to place the ball in his hands so he could try to score. We were there because Calvin’s life skills teacher—who applauded every basket no matter the team—invited us, knowing we’d appreciate a remarkable show of sportsmanship by some very loved and loving members of the community. She was right. It was beautiful, and I wondered if Calvin might ever improve his skills and behavior enough to participate in something like it. Not as long as he's on pharmaceutical drugs, I thought.

Back at home Calvin was enduring his sixth day of pre-seizure symptoms without having had a seizure. It had been eleven days since his last one, and two of the most telltale symptoms that had been missing, his seizure-breath and a rashy red chin, had finally materialized. As Michael and I sat upstairs eating braised chicken and olives watching the beginning of an unpleasant movie, I heard a faint rhythmic rustling coming from the baby monitor which I'd slung from its ribbon around my head.

“Pause it!” I said, as I yanked off the monitor and ran.

Calvin was in his bed thrashing mid-seizure. This one was different, more swiftly convulsive and he hadn’t cried out when it had begun. Having suspected the seizure's imminent arrival I had brought up a syringe of a new homemade concentrated THC cannabis rescue medicine, a recipe a friend and fellow dragon mom gave me which she uses instead of rectal Valium to successfully stop her daughters tonic-clonic (grand mal) seizures. I grabbed it from the dresser, popped off the cap and squirted the tiny amount—0.1 milliliters equaling 8 milligrams of THC—inside Calvin's lip. Seconds later the seizure stopped dead in its tracks.

“That’s remarkable,” I opined to Michael who, though he is a born skeptic and doesn't believe in silver bullets, conceded that the THC might—perhaps—have worked.

For a couple of minutes Calvin seemed somewhat catatonic, but he quickly began whimpering reassuring us that the seizure was indeed over. His lids became heavy and within ten minutes he was sleeping soundly. I went downstairs to make another rescue syringe just in case and to grab a ready-made syringe of CBD/THCA cannabis oils to give him later to avoid a second seizure. When I slipped into bed next to Calvin I noticed he was completely still. He wasn’t having any aftershocks, the shivers and shakes he usually suffers in the wake of a tonic-clonic seizure—again, somewhat remarkable.

Calvin slept like a rock throughout the night, so soundly that I didn’t wake him to give him the CBD/THCA oils. He woke at 5:00 a.m. slightly out of sorts, but not seizing. He's doing all right this morning, especially for a kid who'd just had a nasty seizure.

I have renewed hope and belief that cannabis is remarkable in all of its different forms. Maybe, just maybe, it will be the elixir that will one day help my kid get out on the court.

Photo by Michael Kolster

time for drugs

There came a point after Calvin's epilepsy diagnosis, nearly nine years ago, that I had to devise a way to remember if I'd given him his medicines and, if so, at what time. He was taking so many that I feared missing a dose, double dosing or forgetting what time I'd given him his meds, because in case he spit them up we'd be faced with repeating a dose if they hadn't had time to completely absorb.

My solution, neither high-tech nor pretty, works for me. For years Michael has been saving these sheets to photograph, most of them marked up, coffee stained and crumpled. The one you see below is from October/November 2008 and represents seventeen administrations of eight different drugs and supplements. The highest number of Calvin's daily administrations was twenty-three, not including pain medication, suppositories or emergency rectal Valium.

The other day we finished weaning Calvin off of Miralax—polyethylene glycol—a grainy powder which acts as a stool softener meant to ease constipation. For years doctors told us it was completely benign and, for a time, Calvin was taking more than an adult dose—as much as twenty grams mixed in water—every single day. Recent studies have raised the question as to whether the drug, which is not dissimilar to an ingredient found in antifreeze—ethylene glycol—can be absorbed in children's bloodstreams causing undesirable side effects, including behavioral problems. Now, in order to manage Calvin's chronic constipation, besides continuing to give him lots of fruits and vegetables and encouraging him to drink as much as possible, we give him suppositories nearly every day just to keep things moving.

These days we are down to giving Calvin only three pharmaceutical medications: one synthetic thyroid pill and two anticonvulsants. One of them, a benzodiazepine called clobazam, is on a slow wean. He gets one multivitamin gummy bear and a magnesium citrate supplement each day. In addition, I give him a homemade THCA cannabis oil plus a high CBD cannabis oil, both of which I think are helping to stem his seizures, improve his sleep and his behavior. The THCA oil has seemed to have eliminated his daytime grand mal seizures while allowing us to reduce his benzodiazepine by 70% since last April, in turn improving his balance, focus, coordination and has allowed him to have a calmer body.

It'd be nice to think that, some day, we could scrap these charts, dump the drugs and have a happy, healthy, seizure-free kid. That, however, would require a cure, which is why I do what I do.

This month, in honor of Calvin and 65 million others, help CURE epilepsy at www.calvinscure.com

water memory

Winter again. My blood and skin had begun to thicken and numb. I felt the need for my body to move because so much about my life had become static. I needed to feel alive, to feel as though there were something beyond the walls, beyond every few hours changing diapers and nursing an infant who showed little sign of any significant development except that he’d sometimes smile and laugh at funny sounds.

It was the same every time I tried. I’d arrive at the pool before the others hoping to find the tiny faculty locker room empty and to snag a free lane. Between tall mirrors I’d examine a changed body, once again ordinary but for a ropey red scar that had replaced my gravid belly. As I’d pad past on the deck I’d feel faces peering up at me from the pool. For a minute, I’d stand at the end of my lane taking it all in: the sharp stink of chlorine, the grayish light, the hard echo of voices against tile. I’d dive in letting the cool wet cocoon me from fingertips to feet. My second home of sorts, the pool was a familiar place void of surprises, only the expected slosh of water cresting over my shoulders. My blood began to move under the drag of a loose suit which had been stretched by my pregnant body or perhaps had simply lost its elasticity from sitting too long unused in the bottom of a bag. By the second or third lap my skin would adapt to the tepid water so that I could lose myself in it. As I flipped and churned, my water memory recalled swimming pregnant, when one day things were ripe and fine and the next, an unrecognizable mess. I’d slither along sadly, thinking about Calvin still wondering what it was that I might have done to have gotten into this fix. Sobs caused me to stop and gasp for breath. Impossible to carry on, I’d struggle to the wall, wrestle my way onto the deck then steal away to the showers where, for half an hour, I’d douse myself with water as hot as I could stand—if I could stand—and hope no one would hear.

Every few months I got back into the pool and tried to make it stick, but the sense of loss was the only thing that stuck, like a record skipping in place carving a deeper groove with each revolution. The thing I had lost was something I’d never truly had: a healthy baby. But I’d also lost the promise of what parenthood might bring: joy, happiness, hope for a bright future full of endless possibility. It was becoming clear that I’d lost the chance of hearing my child speak, telling me what hurts or that he loves me, of seeing him learn to read and write or to cut snowflakes out of paper, or to run and swim and climb trees. I’d never watch him ride a bicycle, catch a fish, sing in a choir, draw a stick-figure family next to a square house with a red door and chimney, or throw a ball, sit on the porch talking with his dad about the world, roast a marshmallow, blow out a birthday candle, hold hands with a sweetheart, wish on a falling star, make music or kiss me goodnight. I’d lost the chance to see my boy play a sport, go off to college, travel the world, find an apartment, perhaps get married and have kids of his own, our grandchildren, on whom we'd dote.

When Calvin was born he’d flicked the first domino in an endless maze of ivory tiles branching off in every ruinous direction, each one representing a lost hope, each one striking the next striking the next striking the next, each one impossible to catch before it topples into another.

—Excerpt from a work in progress

Photo by Michael Kolster