day eight

I was going to write about the CURE epilepsy benefit we hosted last Saturday night, about my man-catcher choker, about how I wept seeing all the tasty food our local restaurants donated, about the band, the bartender, the bodacious blondes and brunettes (guys and dolls) shaking their groove things on the dance floor, about friends from near and far, who signed up, picked up, setup and cleaned up and who helped us raise over $15,000, not including the receipts from the benefit itself.

Instead, I’m writing about the seizure Calvin had this morning at 1:30. I heard him coming out of it, heard that unmistakable constricted breathing like a death rattle. Yesterday, all day long I’d been dreading its arrival, had sensed its imminence for three days and had logged it in my journal:

no smile coming off bus. stubborn. dropping down. eye poking like crazy lately. crazy in jumper. seizure coming. crazy in bath. lots of hypercough. stubborn on way to woody’s. INTENSE. pulling hair. seizure coming. whiny. restless night. not hungry or thirsty. no a.m. nap. crazy in car. *hot hands. *red cheeks in store. ABSOLUTELY CRAZY BATH (took him out after one minute). gazing up and to the right w/shifting eyes in car. pounding heart. seizure on the way.

Instead of writing about the benefit and sharing photos, which I will do later, I’m asking each one of you, Readers, to channel your undeniable compassion for Calvin into funding to CURE epilepsy. Give only what you can at http://www.calvinscure.com

help us CURE epilepsy

In honor of Calvin's tenth spin around the sun, and for the millions like him suffering from epilepsy, please give what you can to help CURE epilepsy now at: http://www.calvinscure.com

click to donate to CURE epilepsy

my sustenance

Often your post is what I intentionally read last before bed. That way I go to sleep thinking about important things rather than about work or the very minor stuff I worry about during the day. Thank you for that.

—Paul


I just had a moment to catch up on your blog. I hear the hurt that the positive effects of the current therapy are so slow, so tenuous that one begins to disbelieve that things can change. It has some analog in the seasonal despair of mud season. A Maineish slough of despond: there ariseth in [the] soul many fears, and doubts, and discouraging apprehensions, which all of them get together, and settle in this place; and this is the reason of the badness of this ground. Like mud season, I hope to see it clear soon, but I can't promise any time table on which you will be relieved of this heart-wearying struggle. Keep on. None of us can anticipate the best changes, in ourselves or in others, that time will bring. You gave, I think, the best defense of hope some weeks ago. We must embrace it for without it we are lost.  

—Madeleine


I'm so sorry, Christy. With the label on your post "despair" I can feel the weight from your home to mine. If I had posted within these last few difficult months, there would be a label of "resignation." I am in awe of the sadness of epilepsy, of how it drains the life from its sufferers and drains the color from the caretakers' lives. My heart is with you today.

—Amy


I'm listening. Sometimes I cry when I read. I have nothing else to offer.

—Julia


We haven't corresponded much this year, but I've thought of you and your family many, many times over the past 12 months. Calvin's picture remains on my computer desktop and I continue pray for his health, peace and well-being (as well as yours and Michael's) every day I see his picture.

—Timothy

day five

day four

purple crocuses bore through bark. sun sparks. kid walking blocks and blocks. hand in hand. sidewalks caked in sand. slight breeze. fifty degrees. mercury’s silver pipe reads fair. winter’s glare has scorched the leaves. in its reprieve they curl into frozen spasms. some, still rooted in their icy chasms, may not survive the melt.

his grinding teeth sound like sand beneath boot. i feel it in my marrow. his pair of eyes rove and jerk. he goes berserk. my boy is not himself—whatever that is. fingers frantically snapping. its half-life met, the benzo withdrawal compels. it’s going to be hell.

day five

four thirty. the cardinals chirping. i hear him choke. i quickly unfasten the canopy ropes. his face is pale and he fails to meet my gaze. his hands turn clammy. the seizure makes his gut churn and creak and groan. i slide in beside him. he moans and pulls my hair, claws me like a bear. his head must drum. for an hour he shudders and writhes and whimpers and hums.

he wakes up cackling. something must hurt. he's cracking. his tummy must feel sour. he spends the first hour with his head in his hands, finger in his eye if he can. he coughs and whines and drools. i keep him home from school. he wants out of the jumper. he wants in. he wants out. he wants in. he flails and shrieks and stomps. rudy pants and tromps around the floor. i try to comfort my poor ten-year-old boy who is suffering withdrawal. i’ll try to be his steely pawl.

a cannabis man is coming by soon. i want him to grant calvin the moon, offer some hope. i feel we’re at the end of our rope. but i won't let go. no. no matter what, i won't.

lil' bubber

photo by Michael Kolster

birds and stars and broken circles

He flops forward in between his crossed legs, face first into the water. His nurse fishes him out, water cascading down his limbs into the bath. She carries him to the bed, starts her timer, covers him with a towel and dabs his wet skin. After two-and-a-half minutes she calls me on the emergency cell. I jump, because I know what she is going to say, but can barely hear her so I tell her we’re coming straight home.

Once home, I tiptoe upstairs. She’s sitting next to his bed, its safety panel down, and I can see his sleeping face, which is flawless and wan like a an eggshell. His hands were blue up to his wrists, she whispers, he didn’t breath for at least a minute.

Though the seizure was just after 4:00 p.m., he’ll sleep twelve hours, waking only for his medicines and a diaper change.

Michael and I warm our dinner in relative silence, thankful for the lasagna that our neighbor Barbara left on our doorstep the night before. We eat it while watching The Broken Circle Breakdown. As the subtitles roll the film unfolds into a drama about the parents of a little girl suffering from leukemia. Because of our bad memories of hospitals, we’re not quite sure we want to watch, but something about it compels us. Maybe it’s the tattooed Belgian cowgirl and her carefree ways. Perhaps it’s her ruggedly handsome boyfriend, the smitten one who plays bluegrass in a band of bearded minstrels. Or maybe it’s their little girl, a few years younger than Calvin, who has the same perfect skin that sallows with the chemo even as her hair falls out of her head.

Tearfully, we make it through the film, which weaves its way in and out contemplating the existence of God. It holds both sides equally well, making the case for a Godless universe and one where spirits come back as birds and stars. To me the arguments aren’t incongruent. Nature is God. God is nature. It’s as simple as that. No sadist God exists to punish little children, take sides in wars, inflict suffering on the masses, answer some prayers but not others. It's as simple as the fact that bad things happen to good people, like me and Michael, and Calvin, like that sweet, ill girl and her parents.

I go to bed feeling so sorry for my little bird who has to suffer so much, his headaches and tummy aches and cramps and seizures and side effects. He suffers the burden of not being able to tell us what hurts. Sometimes I wonder if he hears voices or sounds, sees apparitions, brought on by the drugs he takes to quell the seizures. I wonder if he knows the sound of a bird, which is not unlike the trills he sometimes makes. I’m sure he’s never seen a star to know what one is.

They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits.

I’m tired. I am not the person my husband married. I’m stuck between these four walls listening to a whimpering kid who I can’t seem to help no matter what I do. Even Rudy paces in broken circles around the house. It’s what we do. Our days are as infinite as they are numbered.

cannabis and my kid

Published April 2, 2014 in Ladybud magazine

When my son Calvin was two, he suffered a forty-five minute seizure. The emergency medication that the hospital staff had administered seemed to be having no effect. In my research of epilepsy I had read that the longer a seizure lasts the harder it is to stop, so my husband Michael and I, fearing Calvin’s impending death, sat helplessly at his bedside kissing him goodbye. Seconds later, the seizure stopped.

In the eight years since his diagnosis, Calvin, who was born missing a significant amount of the white matter in his brain, has tried nine different antiepileptic drugs (AEDs)—at times as many as four at once—plus two rigorous dietary therapies. None have stopped his seizures. The seizures and the drugs impede his development and the drugs cause heinous side effects such as headaches, nausea, poor coordination, irritability and cognitive blunting to name just a few.

Some of the drugs have not been tested on children, others can have lethal side effects, while still others are addictive and can disturb memory, behavior and learning. It sickens me knowing that my ten-year-old’s brain is constantly awash in a drug related to Valium, plus a high dose of another AED, yet his seizures, which can last as long as five minutes and cause him to stop breathing, persist. Having tried and failed so many pharmaceuticals, the chance that a subsequent one will stop Calvin’s seizures has dwindled to almost nothing.

A little over a year ago, in desperation, I began researching cannabis for the treatment of epilepsy. I read about a five-year-old girl from Colorado, Charlotte Figi, who’d had near miraculous results treating her catastrophic epilepsy using an oil made from cannabis. Then I read of another similar child, and another, and another.

Their stories astonished me, so I asked Calvin’s neurologist her opinion. She dismissed the idea, saying that there was no solid evidence as to cannabis’ safety or efficacy. I took Calvin to see another neurologist. He echoed her misgivings. I then went to Calvin’s pediatrician who, since Calvin was a neonate, had been holding our hands through near constant complications and heartache. A few days after our conversation, having never done so, she promised to issue Calvin a certificate to use medicinal cannabis to treat his epilepsy.

Over the next several months I read, researched, and contacted other moms who were using cannabis oil for their kids. I spoke with dispensaries, caregiver growers, marijuana advocacy groups and specialists in making the oils. I learned that the strain of cannabis that was helping the kids in Colorado, one high in CBD (cannabidiol) and low in THC (tetrahydrocannabinol) was not available in our state of Maine. To get it, I’d first have to find it, or one similar, in a nearby state and bring it back to be grown, thereby breaking the law. Otherwise, I’d have to uproot my family and move to Colorado, or order it online and risk getting one processed with pesticides or mold, risk a breakdown in supply, risk not knowing its exact contents, its consistency or its handling, all risks I was unwilling to take.

Instead, I began conversations with a Sacramento man about how to make an oil using a strain of cannabis readily available in Maine, one high in THC. There is evidence that cannabis oils high in the raw, acidic, non-psychoactive form of THC, called THCa, are helping children with epilepsy in Australia and in the States. Since, with each passing day Calvin was outgrowing his AED doses, and since I wanted to avoid subjecting him to another, I felt compelled to start him on a cannabis oil, ASAP. Until the high CBD strains, which at some point during my research had been anonymously brought into Maine, would be ready to flower abundantly enough to offer a consistent supply for making oils, I’d have to make a THCa oil myself; local dispensaries were not making it.

At first, the process intimidated me, but my husband, a professional photographer who deals daily with chemicals and precise measurements, offered to help. This eased my angst. I began ordering supplies on the Internet: organic grain alcohol, nylon filtration bags and screens, amber dropper bottles, MCT oil, canning jars and scrapers. As the supplies started appearing in boxes on my doorstep, I began examining the recipe in preparation for making the oil.

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