1.15.2019

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.

1.11.2019

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.

1.08.2019

trending

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.

1.03.2019

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.

12.31.2018

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.

12.26.2018

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

12.25.2018

nostalgic christmas

Alone in the house with Calvin and Nellie while Michael spends a couple of hours at the studio. Silent Night is playing on the radio. For the first time in years I feel an emptiness, its source the absence of my mom and dad. I long ago lost my religion, but I sometimes still enjoy a few holiday traditions I did with them as a kid.

While feeding Calvin grapes I remember Christmases of my childhood, recall Dad goofing off in his new orange track suit, and making funny faces while carving the bird. Even the feeling of disappointment when certain gifts given to me weren't exactly how or what I'd hoped feels nostalgic. I wish Mom and Dad were still around. Wish they'd had a chance to know Calvin. Perhaps Dad would bounce him on his knees until he giggled uncontrollably. Maybe Mom would trap Calvin in her larger-than-life hugs, a flour-dusted apron tied around her ample waist. We'd sit around the table making jokes, passing dinner rolls and gravy. I've little doubt that Dad and Michael would've been famous friends, working in the kitchen, cleaning up the mess together. Michael's family eggnog would have been a big hit with Mom and Dad, though especially Dad who had a wicked love of sweets.

But they're both gone, Dad for some twenty-two years and Mom for a handful. Instead, I've got memories of them seared into my head—the smell of hot apple cider and of breakfast sausages and French toast wafting through the old brick ranch house. Holiday music coming from the radio atop the fridge. The huge tree all lit up and tinseled. The warmth of Mom's smile and embrace. The relentless razzing Dad gave each of us. How nice to see him when he wasn't working, though Mom, who was a homemaker for eight, never really seemed to quit.

Yes, these carols so familiar spark in me a visceral poignancy, and I'm overcome with a loneliness I know isn't uncommon during the holidays. But Michael will soon be home. Then friends will be arriving after sundown. Eggnog with bourbon and rum will be drunk. Savory meats will be carved and eaten. Wine will flow. Cake will be served with ice cream. Mom and Dad won't be at the table, but my own family will be, and the house will be full of love and laughter. And Calvin, whose days are virtual carbon copies of each other, won't know he's missing anything.

Mom and Dad, Harriette and Don