march forward

We were unable to attend our town's Women's March today due to frigid weather. Nevertheless, Calvin and I marched instead around the Hannaford grocery store in solidarity with the millions of Americans who disavow a president whose default is deceit, who fearmongers and incites violence, who falls in love with dictators, will not renounce white-supremacy, disparages women, ridicules minorities, maligns refugees, smears Muslims and mocked a disabled reporter. That image will be forever seared into my mind, and I will always be baffled why any one of the above actions—much less them all—didn't derail his candidacy. Hopefully someday soon we'll know.

Photo by Matt Klingle


three long days

three long days. one sick kid. no diagnosis. several low-grade fevers. two grand mals. one partial seizure. four hours of agitation, panicky rapid heartbeat and clammy hands. two-plus afternoons with a listless child sleeping on and off. several restless nights. extra meds. one dream of caring for two calvins of different ages, each careening at the end of my arms. three incredible movies. one chapter read. zero words put down. thrice out of the house. seventy-five daily milligrams of cannabidiol. one beloved dead poet of beauty and nature. two inflamed elbows. four-degree mornings. ten to twenty inches of snow on its way. one aching jaw from clenching. one fourteen-year-old finger shut in a door. one crying child. one sorry nurse. one weeping, sleep-deprived mama. one chef husband and his three, savory, five-star meals. six-plus modest glasses of bourbon on the rocks between two people. one reckless president. twenty-eight days of shutdown government. too many hypocrites. millions of hurting federal workers and contractors without money to pay bills. innumerable racists and misogynists. dozens of formidable women in congress. one college art student who inspired this post. one morning without seizures. one child back to school. one smiling teacher ready to receive him. one tired mama, finally writing.

Photo by Michael Kolster


letting go

After reading my most recent post, a little less stress, about giving up on logging Calvin's behaviors, etc., in a daily journal, a friend my age, who some years ago lost his daughter to opioid addiction, shared his thoughts about what I had written. He said: 

Letting go. Acceptance. It comes last, and in endless layers, one thin peel at a time. I know. Believe me: I know some version of this.

We hold on to magical thinking, and only in release ... slowly, sequentially, only as we are able, feather by feather ... is there relief.

I think I know ... I can't say I for sure know, but I think I know ... I think I understand this sort of surrender of which you speak, and the modicum of peace that follows.

Time and readiness. Patience and prayer. For all of us.

His gorgeous words were particularly moving to me. I hadn't considered my decision to give up the daily task of logging in a journal as a kind of acceptance of Calvin and his stubborn condition of intractable epilepsy. I thought of it more as a way to reduce my level of stress. However, in my first day of not logging, I felt more present in my son's life, not feeling compelled, whenever I saw what I thought might be a seizure harbinger, to run to my journal to jot it down. The result was something I hadn't fully expected, which was a kind of admission and acceptance that I didn't have full control over my son's epilepsy, and that journaling—though it once served a purpose—might no longer be necessary or helpful, and that Calvin will be okay even if he seizes. Rather than logging every suspicious behavior, I've just noted them in my head, sat with each for a bit, then continued to engage with my child—embracing, kissing, tickling. It was a relief not to be hyper-focused on documenting. I was focused instead on my son without suffering some of the angst I usually feel. Putting the journal away, to a great extent, has allowed me to let go.

With new insight, I reread what my friend wrote. Certain words stood out. Acceptance. Endless. Thin peel. Relief. Surrender. Peace. I felt all of these things the first day I gave up logging Calvin's woeful and suspicious behaviors. In giving up that routine, I also give up emphasizing in my mind and on paper the negative aspects of Calvin's days, therefore depriving them of a certain agency. So, too, do I relinquish a certain amount of cynicism leaving more space for hope, optimism and healthiness. Maybe Calvin will feel this effect, too. Perhaps he'll seize less. We run in such close circles, inches or feet away from each other at all times, I can only imagine he'll benefit.


a little less stress

Something came to me the other night in a kind of epiphany. While cozying up to Michael in bed, I was thinking about my dentist's suggestion of wearing a night guard to protect my teeth from clenching them. Assuming my teeth clenching is due to stress, it occurred to me in a flash that perhaps giving up keeping a daily journal would lessen that stress. I've kept a journal since Calvin was diagnosed with epilepsy in 2006. In it I log his behaviors, star the ones which seem to be harbingers of an impending seizure, underling or capitalizing the most vexing ones. In the outer margins I log his bowel movements, indicating their size and consistency. I circle any suppositories or pain medications I give him. I highlight medicine changes in yellow, night terrors/pain episodes in pink, grand mals in orange and partial complex seizures in blue. I note how many times I am up at night laying him back down and covering him, and draw a cloud around nights when he stays up past bedtime perseverating. Rarely do I write positive things, perhaps because of their infrequency or perhaps, in my eternal quest to fix my kid, my focus is misdirected.

I think the epiphany came as the result of something Calvin's new nurse, Sue, said to me the other day. In relating her own history of hypervigilance over a now-grown son who had intractable epilepsy as a kid, she told me he had once said, "Mom, stop looking at me." At the time he was just six.

In her anecdote, I saw myself and the way I physically and mentally hover (obsess?) over Calvin and his condition. Perhaps, if he could speak, he'd tell me to stop looking at him. It got me thinking that maybe the journal—though it has served a purpose in tracking possible relationships between Calvin's seizures and his meds—might at this point be overkill. After all, I think I've got a pretty good sense of patterns in his condition, and I'm not sure writing down omens prepares me any better for his seizures. And if need be, I can also rely on my monthly calendar where I log the important stuff like seizures and medicine changes.

Years ago, I stopped using a handmade chart to check off Calvin's daily medicines. At one time, using it was necessary considering the slew of medicines and supplements he used to get—as many as twenty-three administrations a day—and sometimes I'd forget if I'd given them. Now, Calvin takes so few medicines—Synthroid, Keppra, multivitamins, Miralax, THCA and CBD cannabis oils—that I can remember them without the use of a chart. Years ago, I also stopped listening to the baby monitor when I slept because I'd wake up at the slightest move Calvin made in his bed. Both decisions reduced my overall stress, if only a little.

So, yesterday, the journal went into a drawer. Starting today, I won't be logging anything in it. Though I'll allow myself the right to use it again, I want to see what life is like without it. Perhaps I'll stop clenching my teeth at night. Maybe I'll sleep better. Perhaps Calvin will feel less stress. Maybe in turn he'll seize less. Maybe its absence will open up scads more time for me to do other things instead. Who knows? The possibilities are endless.



in the last forty-five days, calvin's grand mal seizures have fallen slightly from an average of six per month to between three and five. in the same time frame, his partial seizures are down from double digits to just a few. days with seizures remain equal to a years-long low of about six per month. despite this slight downtick in seizures, calvin has been, overall, kind of agitated. i wonder if it is because of the increase in cbd oil causing him tummy aches, or because his brain is craving seizures that the cbd hasn't allowed to emerge. i have heard of children and adults becoming seizure free only to suffer behavioral side effects due to the increase in ambient stimulation their seizure-free brains must wrestle. nevertheless, we are grateful for this recent trend of fewer seizures, despite calvin's slightly-wired self. perhaps we'll get to the bottom of it. as always, cross fingers. knock on wood.


sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.


sweet spots (cbd and others)

For awhile, I've wondered why the all-time most-read post on my blog is one called day five hundred. To my surprise, folks continue to find it amid the 1,843 posts I've published since starting my blog over eight years ago. In pondering the question, I reread the post and came to the conclusion that readers, perhaps mislead by its title, were and are interested in knowing how my son, Calvin, went five-hundred days without a seizure. In actuality, when I wrote the post Calvin had been free only from conscious-onset daytime grand mals. In other words, he was not seizure-free because he was still having them at night.

In revisiting the two-year-old post, I thought it prudent to give readers an update. Calvin continues to be virtually free from daytime grand mal seizures. I say "virtually," because in November, he had some sort of event at school which the ed techs were unsure of. When asked, they described attributes of both grand mal and partial complex seizures, thus confounding me. Suffice to say, nearly all Calvin's grand mal seizures emerge at night, most often in the wee hours of sleep.

Of note now is the fact that Calvin is having the same or fewer seizures as compared with recent years despite, a) being in the thralls of puberty, b) having finally weaned the benzodiazepine (Onfi, aka clobazam) he was on for years, c) taking less Keppra, and d) taking half the amount of my homemade THCA cannabis oil that I began giving him five years ago. What's different is the addition of Palmetto Harmony CBD oil I began giving him last June. At sixty pounds, Calvin's daily intake of the oil is 75 milligrams roughly divided into two doses. At this dose we have not seen any negative side effects attributable to CBD. In fact, he is sleeping a bit better, seems less agitated, is having far fewer partial complex seizures and very slightly fewer grand mals. Of late, his days between seizures have been mostly calm and filled with smiles and moments sitting on our laps sopping up hugs and kisses. When I've given him extra CBD in the wake of partial seizures, he hasn't gone on to have more, so I can be fairly sure the Palmetto Harmony CBD oil is not a seizure trigger for him.

Compared with other children his weight, Calvin may be taking more CBD, but he has a history of requiring high doses of medications to achieve any semblance of efficacy. I keep in my mind—and heart—Charlotte Figi, who is Calvin's size and whose mother Paige told me takes nearly three times the amount of CBD Calvin is currently taking. I also consider the children who are taking way more CBD—as much as 1,300 mgs per day—in the form of the new plant-based pharmaceutical, Epidiolex.

My hope for the new year is that we will find a CBD sweet spot which limits or eliminates Calvin's seizures without any adverse side effects—in essence, I hope we find a silver CBD bullet in this golden potion. If we do, I'd love to try reducing Calvin's THCA and Keppra.

In-between seizure days, I am finding time to get out of the house to enjoy my own sweet spots—rivers, beaches, forests, seas—which keep me healthy and mostly sane. I've been afforded such luxury because, after a three-month hiatus, Calvin's kick-ass nurse, Rita, recently came back to work for us via a better and more ethical agency than the one she left. Rita job-shares her part-time gig with a second nurse, Sue, who is exhibiting similar kick-ass characteristics. In addition, we have Mary, Calvin's former ed tech, who also provides us respite, and who has been kicking major ass for years as Calvin's aide. All three women are a joy to have in the sweet spot we call home.

So, in 2019, I'll continue my search for sweet spots, and I'll let you know if and when I unearth them.