cannabis oil update

Monday night was Calvin's first dose of cannabis oil. It could be my imagination but it would appear that he has been sleeping slightly better and might-maybe-could be-perhaps a little bit less irritable. One thing is for sure, school reports that they think he is more focused.

It is way too early to tell if the cannabis oil is going to have an affect on his seizures. The longest Calvin has gone between perceived seizures since the first of the year is fourteen days. Today is day eight. If we get past fourteen we might begin to think that we are on to something.

In the meantime, I'll keep hoping and wishing that, perhaps one day, the endless piles of pills and medicine bottles that have been stacking up for years will become a thing of the past, along with Calvin's seizures. And if I don't get my wish, at least I gave it a try.

liquid gold

Four-plus ounces of liquid gold sit in an amber jar on the kitchen counter waiting for me to purchase a glass dropper so I can give Calvin his first dose tonight. It took a week to make what I jokingly told a friend was liquid reefer, though what I'll be lovingly referring to as cannabis oil. The oil isn't anything like reefer, in that it won't get Calvin high since it hasn't been heated in the making. It's basically cannabis in the raw and will pass through Calvin's digestive system, then into his brain, spreading its anti-inflammatory, immune-boosting, neuroprotective and anticonvulsant properties.

One ounce of dried, cured cannabis bud dissolved into eight ounces of organic grain alcohol, then strained and evaporated, produced 4.3 grams of resin to which we added oil. We have no idea how long the medicine will last or if it will even work to stave off Calvin's seizures. We'll begin giving Calvin one drop twice daily, slowly increasing by drops until we see the desired effect of fewer seizures, which could take quite a while since Calvin's seizures appear to us only weekly.

Last Friday, I was reading and writing about clobazam while crying into my lap. A knock came at the door. I walked toward a man standing on the other side of the glass who I simultaneously did and didn't recognize. Where a hat usually perched, his head was shaved bald, and a sports coat replaced his typical, casual fleece. Unmistakable, though, were his strong jaw and deeply cleft chin. When I opened the door we embraced as if twins and, holding my breath, any tears I had left in me fell.

It had been at least four years since we'd last seen each other, nearly as long since we'd spoken, so long that I'd almost forgotten how much I missed Nick. He'd been one of those rare students of Michael's who'd kept in touch, grown to love us, hung out more than just once in a while. He'd given Calvin one of his most favorite toys, an orange plastic football. Over the years we'd spent hours together making meals, shooting the shit, exercising our quick wit. We'd grown very fond of each other before he slowly melted away, then seemed to disappear altogether.

When Michael arrived after a day of shooting he hugged Nick big and strong like a brother, and the three of us whiled away the time catching up, joking, drinking bourbon, watching tincture evaporate into resin, eating Indian chicken and ginger cake with hard sauce. His surprise appearance and presence seemed to me like a very good omen.

Today, Nick is gone. Outside, the temp hovers just above freezing. In the sun, snow is melting and the rhododendrons relax broad-leafed and accepting. I can sense that spring is near, and it seems right that we'll be giving Calvin this herbal extract, this cannabis oil, with the emergence of longer, warmer days.Yesterday, as Nick was leaving, we heard a cardinal chirp. I swear I can sense the crocuses pushing up through the ground beneath the snow. This has been a brutally long, cold, snowy winter, but I feel the ice is thinning, hear the cars splashing through puddles in the street, and I can smell aromatic liquid gold on my fingertips like pine sap, honey and sage.

benzo blues

I feel like I need to vomit. There are tears in my eyes and a quickening of saliva in my mouth. Biting my lip, I peer out through the blur into greyish-white skies and freezing rain. I’ve been reading more about benzodiazepine withdrawal. It’s something I’ve known about through research and experience and something I hope to soon begin accomplishing with Calvin ... again. I dread it just the same.

It’s not going to be pretty, unless the cannabis oil that I am making to give Calvin can soothe the wean of an addictive medicine that has been living in his system for over three years and which was a replacement for a different benzodiazepine that he was on for just as long. The retreat might take months, perhaps longer, if it can happen at all.

I’ve long understood and been sickened by benzo’s side effects and difficult withdrawals, but I manage to forget about them from time to time as his irritability, his sleeplessness, his mania, his drooling and his poor balance trump my cognizance of the root of their cause. But it's the memory and behavioral problems that scare me the most. The fear is gnawing a sour hollow into my gut, and I wonder if Calvin’s progress is practically at a standstill because he can’t remember much and therefore can’t learn much.

Sitting here writing, I’m sick to my stomach thinking about what this son of mine might be doing—might be like—right now if it weren’t for the goddamn benzos. Is he past the point of being able to learn any words? Past the point of being able to walk by himself? Past the point of having the patience to calmly enjoy a book, feed himself with a spoon, sleep well at night? Or have the benzos shrunk his cerebral cortex, something I read about recently with horror, and the son I've got is the one I'll have forever? I'll love him nonetheless.

I go back to making the cannabis tincture, which is fresh and green reminding me, by its color only, of radiator fluid. It’s winterizing in the freezer waiting for me to filter out the frozen chlorophyll, pour it into a sterile glass dish to evaporate into a resin that can be weighed and added to MCT oil. Then we'll give it to my boy in drops, but only one twice a day for starters.

Then I realize that the sick feeling in my stomach is gone, my mood has gone from blue to green and my tears have evaporated leaving nothing more than salty tracks in their wake.

day nine

In blue latex gloves, my hands grind dry cannabis bud into a stainless steel bowl. Calvin is upstairs with the nurse taking his second bath of the day. During this ridiculously snowy February break, time expands into monotonous swaths. I imagine well-to-do families with their healthy kids going downhill skiing, or perhaps stretching out on Bahamian beaches, while our most exciting outings are to the grocer, the hardware store and the coffee shop in the next town over.

I see the reflection of my hands in the sides of the bowl, the pile of oregano-green flakes forming a mound in its center soon to become an amber oil elixir for my son. From the top of the stairs the nurse calls my name and, of course, I know why. It's day nine and he’s having a seizure in the bath—again. As I jump up the stairs I wonder if—hope that—it might be his last.

She’s got his limp body slung in her arms as she lugs him awkwardly to our bed. His face is mottled, eyes vacant, and his fingertips, usually tinged blueish during seizures, look grey and dead. This one is more convulsive than recent seizures, and I call to him, call to him to come back to me.

A few minutes later he whimpers and I see the life flow back into his eyes, if only a little. He tries to suck his thumb but doesn’t have the strength. He whimpers some more and I stroke his wet head and kiss his neck. My throat begins to thicken wondering if my child will ever break free of this torment, wonder if he knows that I am sitting beside him on the edge of a firm bed in the middle of a winter sunset that others might be viewing from a mountaintop or a beach.

dare to hope

In the eight years that I’ve been searching for it, I’ve often been reminded that there is no silver bullet to stop my son Calvin’s seizures. My response is to think, well, I sure won’t find a silver bullet if I don’t keep looking. I continue to hold out hope, in a way asking for all that might be possible.

A friend recently responded to my post tempests, moon and stars. She said, “It worries me that you may be counting too much on the [medical] marijuana working ... Please try to keep your hopes in check, Christy.”

Reading her words stung me, and my mind kept tumbling over them the entire day. In response to her, part of what I said was, “I will be no less disappointed having suppressed my hopes and dreams, but will have missed out on the joyous endorphins that they allow me, if only for a time.” Indeed, I do have high hopes that the cannabis tincture we’ll be making soon will help to stop Calvin’s seizures and perhaps calm his frenzied body and mind.

As Calvin flailed and spun in the bath I thought further about my friend’s concerned comment, thought about the phrase that is so often tossed out into the world: Don’t get your hopes up—a phrase I don’t think I’ve ever used. What if someone had told me to keep my hopes in check when I was pregnant and wishing on the stars for a healthy baby? If I’d complied, might I have been less disappointed when I learned that Calvin was born missing a significant amount of the white matter in his brain, when he was failing to thrive, when we learned that he was legally blind and might never walk or talk? Would it all have been easier to take? I’m certain it wouldn’t have been possible for me to have been less disappointed, less despondent, than I was, even if I’d kept my hopes in check.

I tried to remember if my parents had ever used such a phrase, but I couldn’t. I went on to imagine what it might have felt like if, when applying for college my parents had told me not to get my hopes up. What would have happened if, when psyching up to win the state high school relay my coach had told me not to get my hopes up? Would any of us have told my father, when he was determined to beat his cancer, or, told my mother, when she was enthusiastic about a new weight-loss regimen, not to get their hopes up? Would I have ever said to a parent whose child was going into surgery, to keep their hopes in check lest they be disappointed if the outcome were poor? I hope not.

I think I get the theory behind this kind of advice, and I know it is not uncommon. I mean, I get the gist that folks who subscribe to this thinking believe that stifling hope—keeping hope in check—will work to make failure and tragedy easier to bear. But, I wonder what amount of stifling is advised? Fifty percent? Eighty percent? A third? How much hope should one whittle off to reach a reasonable amount? Can hope really be measured, checked, tempered in this way? Have there been studies on managing one’s hopes proving that suppressing them shallows grief, numbs pain, buffers despair, safeguards our emotions?

Keeping my hopes in check would feel tantamount to giving up on my dreams, ditching my ambitions, doubting possibility, surrendering my desires and living life as if content to eat bread and water knowing there might be aromatic cheese and fine wine for the taking if only I dare to ask.

tone of voice

Much of the friction of life is caused by the tone of voice.

The sarcastic, cutting, resentful, discordant tone of voice is responsible for a large part of the unhappiness, not only in the home, but also in business and in society.

- Mother -

An entry from my Grandmother's personal Album of quotes.

tempests, moon and stars

It's a sick feeling, a gnawing pit in my stomach, knowing that my son is going to have a seizure—soon—but there is nothing that I can do about it. Today is day four: only four days since his last one and I can feel it approaching like a storm on the horizon, smell it like the rain in the air before a downpour. As for the weather, it's low pressure, which is when they often happen, and the full moon is hanging somewhere in the sky. So odds are, he'll have one tonight or tomorrow night, the next night at the latest, and we'll just hope that, like the others, it will stop on its own.

His right ear looks and feels like a red-hot poker. I seem to see this lately in the hours before a seizure. He is manic and irritable, even crying in fits and starts of frustration or pain or fear or I don't know what. I took him out of the bath after only a few minutes fearing he'd bust his cheek or break a tooth on the on the tub, he was so hyper. I feel like crying. He's such a sweet soul. There is nothing we can do.

But that paperweight, the one that spells HOPE, still sits on my desk as a reminder that we are days away from making Calvin's cannabis tincture. I have big hope. Hope that it will stop his seizures, hope that it will stop his drooling and his manic behavior, hope that it will help him sleep and make his tummy feel better, boost his immune system, protect his brain cells and give him a general sense of well-being.

Yep, the storm is on the horizon and the moon is full, but I know the tempest will blow on through, and if I can I'll lasso the moon in the form of an herbal tincture, draw it in close and drop it on his tongue like a golden star.

pharma-head op-ed

This morning I read an op-ed in the New York Times, one written by Orrin Devinsky and Daniel Friedman, both physicians at the NYU Comprehensive Epilepsy Center. As I read the article I felt my blood begin to churn and boil. The men cast aspersions on the use of medical marijuana tinctures and oils for the treatment of childhood epilepsies. They condescendingly and dubiously noted that “anecdotes of miraculous responses to marijuana treatments in children with severe epilepsy are rife on Facebook.”

The men, who I wonder (though seriously doubt) if they have children with catastrophic epilepsy, go on to say how we need scientific studies to “bear out the hopes of these desperate families” because of the “evidence that marijuana use can increase the risk of serious psychiatric disorders and long-term cognitive problems.”

Um, Hello! No doubt these same docs have regularly—and for years—been prescribing Valium, Phenobarbitol, Dilantin, Keppra, Depakote, Topomax, Clobazam and Felbatol for little children, all of which can cause some combination of psychiatric and behavioral changes, cognitive delays, even suicidal ideation, plus heinous physical side effects attacking the central nervous system, gastrointestinal tract, metabolic system, circulatory system, vision, skin and subcutaneous tissue, musculoskeletal system and respiratory system including lethal side effects such as Stevens-Johnson syndrome, liver and kidney failure and aplastic anemia. C’mon! Where is their sense of perspective? Did they forget their promise to first, do no harm?

As I continued reading, I steamed in my seat. I wondered if these MDs are getting major kickbacks from the pharmaceutical companies whose drugs they are trialing, such as Epidiolex, a new drug derived by isolating one of the cannabis plant’s compounds, cannabidiol. It wouldn’t be the first time a physician pocketed dirty money from a pharmaceutical company for pushing one of its drugs.

The men went on to mention the importance of studying the placebo response and how it is powerful in children. Dudes, meet my kid, Calvin, who can’t talk and who has extremely limited receptive capabilities. He is oblivious to the fact that the pills we give him morning, noon and night are powerful, yet largely ineffective, drugs meant to stop his seizures. What about the children whose seizures are so bad that they’ve lost the ability to eat, sit up, walk, talk—even think—and who’ve been resuscitated multiple times by their mothers? Study the placebo effect? I don’t think so, at least not for many of our kids with the most severe forms of epilepsy.

Devinsky and Friedman end their opinion by saying that, “For the long-term health of Charlotte and other patients like her, we urgently need valid data.” Did they stop to consider that kids like Charlotte, who tried and failed every pharmaceutical available, were dying before they started taking medical marijuana? How many of their patients who have gone into a coma, suffered brain damage or died as the result of a prolonged seizure while waiting for a new drug to be approved could have benefited from the use of a medical marijuana tincture? How many more children have to suffer and die because of the fear, ignorance and inaccessibility of an herbal remedy that has been in use for thousands of years?

I finished the article completely repulsed. Even in their wish to foster the study of cannabis, Devinsky and Friedman fell short of advocating for the removal of cannabis in its entirety from the list of schedule 1 drugs, instead expressing their interest only in “compounds derived from marijuana,” to be removed. How convenient.

My friend Elizabeth, whose nineteen-year-old daughter is successfully using cannabis oil to treat chronic epilepsy—when nothing else has worked—also wrote about the article in her blog. She noted how she was put off by the accompanying illustration of a bottle of “Cure All Miracle Elixir,” complete with cannabis leaf label and suspicious fumes drifting out of its spout. Sensational. Thanks a lot, Times editors.

I’d like to challenge these healers to do some more homework, open their minds instead of covering their asses, grow some cojones and actively advocate on a patient's behalf whose pharmaceuticals just aren't working. There is great significance in the reports of efficacy using medicinal cannabis to treat a multitude of conditions including pediatric epilepsy. There is plenty of scientific evidence as to its efficacy, and of its benefit over pharmaceutical options. Just look to Israel's thirty-plus years of research. I'll continue to do mine. This is what I have learned thus far:

The therapeutic compounds in cannabis are believed to act synergistically; medicinal cannabis is not a one-size-fits-all solution. What works for one person might not necessarily work for another. There are hundreds of different strains that can benefit a variety of conditions, and access to these strains is paramount.

There are no recorded deaths from overdose of cannabis, while there are tens of thousands of deaths annually from the use of prescription drugs.

Our children, and others who suffer from chronic conditions, need effective treatments immediately. It can take years—even decades—for the pharmaceutical industry to research, develop, test, FDA approve and market new drugs.

Pharmaceutical drugs always come with an extensive list of side effects, all of which are undesirable, some of which can be debilitating while others can prove lethal. Some of these side effects, such as anxiety, depression or nervous tics, are often treated with additional pharmaceuticals, and so on, in a vicious, downward spiral. Medicinal cannabis, on the other hand, particularly tinctures and oils that have been designed to be non-psychoactive, can have few mild side effects such as dry mouth and somnolence. In fact, parents who treat their children with whole-plant tinctures not only report improvement in their child’s condition but notice many positive side effects such as improved focus, attention, coordination, development, cognition, gastrointestinal health, behavior, appetite, sleep and exhibit an overall improved quality of life.

As with vitamins and minerals, our bodies absorb nutrients more completely when taken in the form of whole foods as opposed to ingesting manufactured supplements that require inactive ingredients such as binders. The same might be true of cannabis. Additionally, the costs of pharmaceuticals are often prohibitive for those who have no access to health insurance.

Cannabis is an annual, deciduous, flowering herb. Patients should be allowed to use and grow this herbal therapy rather than relying on expensive, pharmaceutical drugs derived from the plant.

I invite doctors Devinsky and Friedman to join us in our home, to witness first-hand Calvin’s five-minute seizures, his respiratory suppression, his response to his medications, his visible side effects, his developmental stagnancy. I'd like them to see the large cardboard box full of empty and half-empty medicine bottles, vials, blister-packs and syringes that have housed tens of thousands of ineffective, harmful drugs that have sent Calvin sky-high and pressed him zombie-low, that have rendered him incapable of performing the same skills he had when he was two, that have caused addiction and withdrawal seizures, worsening seizures and damage to his quality of life and to ours.

Please come and visit, Doctors. Our door is open if you dare. Perhaps you’ll have a change of heart and mind and see the need for weed.

Note to readers: I will not publish any ads, promotions or testimonials to the comments section of this blog for any cannabis or hemp products or oils, so don't bother trying.

Ancient cannabis drawing

yesterday's testimony

Re: LD 1739: Kief and An Act To Amend the Maine Medical Use of Marijuana Act

Dear members of the Health and Human Services Committee:

Please do not pass LD 1739 with its current language prohibiting kief. If it passes as written it will eliminate my ten-year-old son Calvin's option to use medical marijuana to treat his epilepsy when nothing else has worked. Kief is the primary ingredient of the extractions that have proven highly effective in the treatment of epilepsy. Without it our children will not have access to this medicine.

Calvin was diagnosed with epilepsy when he was just two. For eight years now he has suffered hundreds, if not thousands, of seizures. During his seizures, which last as long as five minutes, Calvin convulses and stops breathing. His lips and fingers turn blue, and my husband and I worry that they won’t stop. We live in constant fear that we will wake up in the morning and find him limp and lifeless. Despite having tried nine different powerful pharmaceuticals—as many as four at once—and two dietary therapies, they continue. To add insult to injury, the drugs have stifled his development and have horrible and potentially lethal side effects. For many children whose pharmaceuticals have failed, like Calvin, this natural remedy represents hope.

In my relentless search for a cure or treatment for Calvin, I learned how incredibly effective medical marijuana can be in treating childhood epilepsy. Some children have become seizure free and have been able to eliminate their pharmaceutical drugs. These children—our children—require a special preparation of medicinal cannabis. This drug cannot be administered to Calvin in any other way. The special tinctures these children are benefiting from are made by extracting the essence of the plant in the form of a resin—referred to in this bill as kief. This extract contains hundreds of therapeutic compounds called trichomes, many of which are non-psychoactive and have anticonvulsant properties. A small amount of this preparation is measured carefully and diluted into a substrate such as olive oil. In this way, and in no other, the medicine can be dosed and adjusted precisely, which is essential in the treatment of epilepsy.

If this bill passes with its current language prohibiting kief, the primary ingredient of the extractions effective in the treatment of epilepsy, you will be prohibiting medical marijuana itself, a therapy that may be the last option for our children.

In Maine there are as many as 13,000 people living with epilepsy. A third of them—many of them children—have seizures that evade conventional treatment. Please do not close the door on them by passing LD 1739 and prohibiting access to their medicine.

photo by Michael Kolster

hope

Two clocks tick as a snow-blower grumbles outside my window. A silver stacked H-O-P-E paperweight, a recent gift, sits on my desk next to a jar full of crystal beads holding Calvin’s first-grade picture. In it, behind his glasses, his eyes are vacant, tired, and a thin strand of drool trails from his bottom lip to his shirt. It’s one of my favorite photos of him. Though he’s not smiling I can imagine—even smell—his pudgy cheeks, smooth skin and thick auburn hair.

The seizures continue inching closer to one another—every five to seven days now. They're still four to five minutes long. He still turns blue. They're becoming more violent again. So, I keep my sights on the fact that we’re terribly close to making the tincture of medicinal cannabis that might stop the seizures, stop the drooling, bring the light back into his eyes and the calm back into his body. I’ve just got to purchase a few more supplies, then we’ll be all set for production. I’m optimistic, while Michael reserves more than a pinch of skepticism. After all, we’ve been let down so many times.

Just as I’ve got hope that the temps will begin climbing above freezing soon, hope that within weeks the snow will melt into the thirsty ground, hope that the crocuses will soon pop their purple, green and white heads out of the mulch, I hold onto hope for Calvin. But the hope for my boy is not like the inevitability of spring. It cannot be relied upon or taken for granted. It is only hope ... mere desire. Still, I hold fast to it because right now it is the only thing I can cling to besides my boy and the ticking of the clock.

the here and now

Ten years ago today we were in the clutches of an ice storm when Calvin decided to make his way into the world. He wasn’t supposed to come six weeks early, at least not on his own. Medivac helicopters had been grounded, though, so there was no way we could get to Boston where our team of specialists had scheduled a cesarean the following week. But When Calvin gets it in his mind to do something, we’re hard-pressed to do anything but comply with his wishes. I guess things were no different back then.

Last night Michael and I celebrated our boy’s birthday, which to Calvin, who is oblivious to such things, is a day like any other. Sitting at the bar of a local restaurant we raised a toast to commemorate our son’s tenth spin around the sun. Perhaps more so, we celebrated the fact that we are here now rather than back amidst all the fear, drama, tragedy and uncertainty of birthing a fragile, premature child who we knew was missing a significant amount of white matter in his brain and who might not survive.

Times are still hard and we continue to face similar challenges. We always fear the seizure that won’t stop. Our lives are simultaneously monotonous and dramatic. Every day I am reminded of the tragedy of a boy who cannot talk, cannot walk unassisted, cannot feed himself, cannot use the toilet and is enduring increasing seizures and the sickening reliability of ineffective drugs that stifle his development and cause horrible side effects. Life continues to be nothing but uncertain, with the exception that Calvin will never be a completely healthy, normal boy, nor will he grow into an educated, socially conscious, broad-minded, independent, charitable, worldly man, which is who we would have raised him to be.

And though Calvin is a great source of angst and despair for me, he is also a beacon. He’s a rock star, a celebrity, a sage, a monk, a clown, a maverick, a looker, a sweetheart. Calvin lives in the moment, has no concept of tomorrow and is pleased by simple things like music, nature, water, touch and food. He lives simply in the here and now, lingering in the moment, pausing, if only for a moment, just to watch and listen and feel. Thankfully, he takes me right along.

photo by Ann Anderson

press release

So, I wrote my first press release ...

FOR IMMEDIATE RELEASE:

Proposed Department of Health and Human Services Bill May Imperil Pediatric Epilepsy Cases and Others.

Augusta, ME - February 5, 2014 - Maine mothers of children suffering from medically refractory epilepsy worry that they might be denied the medical marijuana extracts that they desperately need to control their children’s seizures and, in some cases, save lives.

LD 1739, “An Act To Amend the Maine Medical Use of Marijuana Act,” would prohibit kief, a marijuana by-product containing the therapeutic compounds—trichomes—that contain the medicinal value which is essential in making the extracts used to control seizures. Mother Samantha Brown says that the lawmakers will be forcing her to, “Sit back and watch her daughter die.”

Brown’s two-year-old daughter, Kaylee, suffers from Dravet syndrome, a catastrophic form of childhood epilepsy that does not respond well to traditional medication and can often be lethal. Children with Dravet syndrome, and other forms of medically refractory epilepsy, experience developmental delays, heinous drug side effects and are at greater risk of dying from prolonged seizures and SUDEP: Sudden Unexplained Death in Epilepsy. Recently, Kaylee, who has suffered multiple seizure types, some of them daily and others which have lasted over an hour, began taking a concentrated medical marijuana extract that kept her seizure-free for six weeks. Her development has improved and she has begun using new words.

These medical marijuana tinctures and oils are processed to be non-psychoactive and are concentrated to allow for precise measuring, dosing and titrating, which are critical attributes to treat epilepsy, which affects approximately 3 million Americans, including veterans suffering from traumatic brain injury. Susan Meehan’s eleven-year-old daughter, Cyndimae, also has Dravet syndrome and started having seizures when she was ten months old. Last October, Meehan splintered her family and relocated to Maine from Connecticut to access and make these concentrated tinctures that will, in her words, “Save Cyndimae’s life.” With far fewer seizures since starting the tinctures, Meehan’s daughter is “moving through weeks of developmental markers in days,” and is no longer confined to a wheelchair. “Kief equals medicine. Medicine equals kief,” Meehan says.

Other parents, like Meagan Patrick of Acton, whose fifteen-month-old daughter, Addelyn, has infantile spams and intractable, medication-resistant epilepsy, have considered uprooting their families to move to Colorado where similar extracts are available and are helping hundreds of children control their seizures. Smoking or ingesting raw bud, which is not concentrated and cannot be accurately measured, are not options for these kids.

Christy Shake of Brunswick, whose nine-year-old son, Calvin, has suffered medically refractory epilepsy since the age of two, was days away from procuring an extract that could help him. Calvin, whose seizures are steadily increasing, has maxed out on the doses and side effects of his two antiepileptic drugs. News of the proposed legislation prohibiting kief intimidated the dispensary that wanted to make it for him. Shake, afraid that the bill, if passed into law, would mean a lifetime of seizures and debilitating side effects for her son, said, “It kills me to watch him suffer. It’s senseless.”

All four mothers are part of a growing Facebook support group called Maine Epilepsy Families United, which Patrick founded and which has grown to nearly one-hundred members since December and is expected to strengthen by numbers. Medical Marijuana Caregivers of Maine, a statewide patient and caregiver organization, is supporting the parent group in their efforts to curb this legislation.

A press conference with the parents and their supporters is planned for 12 noon on Tuesday, February 11th near the entrance to the Cross Building in Augusta, followed by a public hearing to discuss this legislation at 1:00 p.m. in room 209. Interested parties are invited to testify in person or in writing.

thinking back

I awoke to a murder of crows cackling in the trees just outside Calvin’s window. I couldn’t help but think that they were laughing at our pathetic situation.

I laid next to my boy in his safety bed, trying to remain still as possible so as not to wake him. He’d had a rough and restless night after another long seizure which had happened far too soon and just after we’d put him to bed for the night.

As I laid there, breathing shallowly while listening for another seizure, it occurred to me that he’ll be turning ten on Friday, and I began thinking back to the time when I was his age. I thought first about my friend Monica who gave up dolls so that she could climb trees and squash slugs with me. Then I thought of Jim, the cute skinny boy who played the drums and lived in the next neighborhood over. I had a crush on him for years. He's got triplets now. Then, the faces of countless friends streamed into my thoughts: Katie, whom I’ve known and loved since I was zero; Lidia, my sister-mermaid, who, unbeknownst to me, grew up in a house full of fear and abuse. If that weren't enough to endure, she later suffered her stillborn daughter. It was her writing that saved her. Then I thought of the boy who put his hand through the plate glass window above our heads on Katie’s birthday, and I wondered how I managed to come away without a scratch. I remembered Martin, the tall handsome Swede who died in a plane crash with his father the day before his twenty-third birthday, and of his best friend Andy who, at almost fifty, is now likely grasping the heartache and joy of being a new father. I thought of the B-Kellys, especially Betsy, who became my college roommate and a friend for life; thought of Rick and Kyle and Jenny and so many others who’ve graced my dreams for years, all of whom I could call up now if I had to, knowing they'd be there for me.

Calvin has no friends, not really. He doesn’t have play dates or sleepovers or parties. He doesn’t ride bikes, skip stones or climb trees. He doesn’t spy on girls or chalk up sidewalks or win blue ribbons in swimming. He won’t look back fondly on the adventures of youth, won’t have memories of his best friends, his favorite pair of sneakers, his first kiss.

Finally Calvin stirred, and with that the day began. A day like any other, really. He whined most of the morning, put his hand in the yogurt, poked his eye, bit the bookcase, tripped over the chair, tried to eat his slipper, dropped his sippy-cup, stared at the sun, flailed on the changing table, shrieked in the car, fell backwards in the cafe, drooled up a storm and scratched my face, though not on purpose. “Calvin has ruined my life,” I grumbled to Michael as we headed down a street caked in sand and salt. “He’s ruined mine too,” he replied quite matter-of-factly. He went on to say that, if not for Calvin, we might be in Hawaii now. Or Italy, or California, I thought, at some residency or villa, Michael working on his Guggenheim Fellowship project while I'd be writing in cafes and strolling along beaches with nothing but my thoughts.

“But maybe, without Calvin, I wouldn’t have found my writing,” I finally added after milling these thoughts over for hours, "and look at all of the wonderful people we’ve met because of him." Michael nodded. I pondered what it might be like not having had kids, considered the immense freedoms I’d have. Then I realized—felt—the growth Calvin has afforded me, the amazing chance to see the world from a completely different perspective, to care for a life more than my own, to sacrifice—yes—but also to reap the rewards of the unconditional love of a child. My child. "But are you happy?" I asked Michael, to which he responded with something like, "Sure. Of course," and I believed him. I guess I’m a better person for having had Calvin, I decided in silence, despite the circus that my life has become. And I heard the murder of crows squawk again, this time as if in accord.

Me and my friend Pam when we were nine or so.