more than we can handle

My last words to him were, "I love you." He had returned the favor. Though the expanse of the Atlantic separated us, I felt close to him. He said he'd be coming back to Maine in a few weeks as part of a workshop to learn how to turn wooden spoons, and that he'd like to stay with us for a few days. Several times in the past he'd stayed with us for weeks on end. That conversation, along with a second, shorter one, happened just three weeks ago.

He began by expressing some concern having just read one of my darker posts, patience thins. We spoke of my periodic despair over Calvin's troubles, of his own recurring loss of faith in the world and in himself. He gushed about what he saw as extraordinary grace and resiliency in the face of caring for a non-verbal, incontinent, legally blind, cognitively disabled, chronically ill child, saying that he didn't know anyone who could do what Michael and I do. I reassured him that humans are remarkably adaptable creatures, and that most parents would rise to the occassion, adding wryly, "Good thing Calvin's cute." Sensing his own aguish—the months of silence, the rare back-to-back phone calls, the abundant accolades regarding my ability to handle misfortune—I wondered, then asked, if he'd ever thought about taking his own life.

"Yes, of course," he replied matter-of-factly and, after thanking me for my frank concern, noting that few others had ever broached the subject with him, went on to say, "but I'm not in that space right now." I urged him to please call us anytime, day or night, if those dark thoughts ever crept back again. That was the last time we spoke.

Tuesday morning we woke to learn that our dear and longtime friend had died by suicide. I've heard about life flashing before the eyes of those who are about to die. When Michael cried out after receiving the devastating news in an email, scenes of time spent with our friend flashed before my eyes.

I thought about the time when, in line for a matinee, he embraced me as I sobbed having gotten a call from the nurse announcing one of Calvin's grand mals. I remembered the mornings he'd arrive with large paper bags brimming with fancy pastries and breads—croissants, chocolate crinkle cookies, sticky buns, asiago fougasse, gingerbread, baguettes. I recalled the thin slate disc arranged with hunks and cakes of aged artisanal cheeses he hand-carried—just for us—on a flight from New York City. I remembered the Thanksgiving he spent here, when he tried his first taste of bourbon, and how on subsequent Thanksgivings he arranged, from afar, for a brown-bagged bottle of bourbon to be mysteriously delivered to our doorstep as if by a ghost. I realized we had watched him grow from a skinny, bespectacled seventeen-year-old—young enough to be our son—into a handsome, strapping man in his mid thirties. We watched him passionately delve into the making of art, wine, bread, coffee, custom bicycles and furniture. I became happily familiar with his taste in fine yet understated apparel. I admired the elegant, blue-black cursive-script tattoo—a quote or prose, which I regret forgetting—emblazoned across his broad chest. I got accustomed to his sensible shoes, his sharp wit, keen sense of humor, characteristic laugh, strong embrace, world curiosity, ingenuity, attentiveness and genius with notions, words, paint, wood, steel. And though—like so many others—he didn't seem confident in knowing how best to engage with Calvin, his compassion and love for us as a family was palpable.

Our friend had studied painting and photography. One of his paintings was a rough-hewn self-portrait, camera in hand. In large, broad-stroke red letters he included the words, I SUCK AT LIFE SO I WILL DO AS I'M TOLD. I marveled and applauded its irony and irreverence, had wanted to feature the painting inside my cubicle at the toxic employer I felt increasing contempt for. I wondered about the quote's basis; I wish I had asked him then.

In thinking of the tragic loss of our friend these past several days, I considered again the flabby platitude that folks have so thoughtlessly offered to me when they hear about Calvin's challenges—God doesn't give us more than we can handle. My response—calling bullshit—usually silences them: "Then why do people kill themselves?"

Eighteen months ago, Michael went to visit our friend at his home, a former Berlin hospital converted into spacious apartments. The two of them had a grand time exploring the city by day, wining and dining until the wee hours of the next morning eating from a buffet of various walnuts and fine cheese, drinking too much ridiculously delicious wine. No doubt they joked, laughed and reminisced, talked art and politics, and maybe even waxed philosophical. I had hoped to make the trip myself sometime soon.

We love you, man. You are and will be sorely missed. You're truly one in a billion-trillion. Next star I see has your name on it, brother. Rest in peace. No more anguish, no more pain.

Maine's Androscoggin River, photo by Michelle Lisi D'alauro

misery

In bed with my son again as he thrashes and screams. He lunges at me, grabbing what would be fists of hair if I still had that much on my head. He flails for hours, the acetaminophen and THCA cannabis oils doing nothing to assuage his pain. Huddled in the corner of his bed, I guard my eyes, teeth, groin, and breasts from being inadvertently kicked or punched, while protecting Calvin from hitting his head or falling out of bed.

His screams are haunting, as if he is having his fingernails or teeth yanked out one by one—they are strident, deafening, tormented, deranged. He suffers these hours-long bouts of misery every couple of months and I still don't know their source or nature, wonder if they're migraines, kidney stones, gas cramps, impaction, muscle spasms, benzo withdrawals, night terrors.

And though he isn't even in the first percentile—barely four foot five inches and just under sixty pounds, he's half the size of an average boy his age—he is getting bigger and stronger yet.

Exasperated, I lift my wailing boy out of bed and lay him on the changing table. There, I undo his diaper and squirt 0.25 mls—5 milligrams—Palmetto Harmony CBD oil from a syringe into his rectum. Within seconds he calms. Within minutes he is asleep. He has been thrashing and shrieking for hours. It's 11:30 p.m.

When I wake up my arm is asleep. Stealthily, so as not to rouse my sleeping imp, I crawl out of his bed, raise and lock its safety panel, secure its netting, then return to my bed, hoping he'll be okay, hoping this never happens again.

Still frame, from the film Melancholia

real boy

For years I have dreamt of taking Calvin to the movies, but our son won't watch television or videos. They don't hold his attention and he can't sit still very long anyway. There have been countless dreary days with nothing to do when I'd have given my left eye to take him to a movie. But Calvin can be loud as hell and quite distracting. So when my friend told me of a special children's performance of Pinocchio, lasting only one hour, I called up the Maine State Music Theater box office. After explaining our circumstance, we were gifted the tickets.

The house was packed. Little kids with their parents and grandparents filed into the auditorium. I must admit I was nervous and, regrettably, my anxiety seeped out in the impatient way I treated a couple of ushers when navigating the way to our seats, which were at the back of the main floor in a special row reserved for wheelchairs.

When the lights went down Calvin turned his attention to the neon exit sign, but then seemed to settle on the stage. The audience's cheering and clapping didn't seem to faze him at all. To keep him otherwise occupied, throughout the performance I fed him blueberries, grapes and pieces of chicken sausage. At times he shook his head back and forth manically, flailing his arms, then he began to vocalize. Thankfully, his intermittent grunts and howls were not loud enough to warrant removing ourselves from the show.

To my surprise, Calvin made it to the finale. I considered it a major feat for us both—my crazy kid and I venturing so far out of our comfort zones.

As the crowd dispersed, two women sitting next to us remarked on how well he did. One of them, Linda, told me that at times during the show Calvin patted her shoulder. As we waited to make our way down the aisle to the exit, the other woman, Marcia, asked me if I thought Calvin understood the play. I told her, no, going on to explain that though he does seem to understand some language, he probably doesn't comprehend conversation.

"He doesn't seem to grasp abstract things, like birthdays," I told them.

I went on to mention how surprised I was, shocked really, to have been so emotionally affected by a fable I've known since childhood. As the parent of a disabled, chronically ill son, the notion of a floppy puppet—one who can't walk or talk, and who has wooden legs resembling my Calvin's spindly ones—becoming a real boy proved painful for me.

"I want that for Calvin," I told the women, tears welling up in my eyes.

Marcia opened her arms widely and pulled me in. Linda offered the same gesture. I felt the warmth of their hearts in the long embraces they gave me. I told them I had had a similar shock when I had gone to see the theater's production of Young Frankenstien years ago, when The Wretch breathed life, then sat up from the slab, groaned and took his first awkward steps. In Frankenstein's Monster, as in Pinocchio, I saw my little boy.

fortieth morning

Stepping outside behind Nellie, mug of coffee in my hand, I thought to myself, I shouldn't go outside until Michael's done in the bathroom. Still, I went, leaving Calvin unattended in his jumper, if only for a moment.

In the soggy garden, mosquitoes flitted around my head. Limbs were dripping with last night's rain. The earth was shrouded in mist, birds and crickets chirping. Partway through my stroll I heard Michael shout for me. I knew what was wrong, so I sprinted across the lawn, slopping coffee into my rubber boots as I did.

Entering the house I called, "What kind?"

"Grand mal," Michael answered, just as I saw him struggling to yank our convulsing boy from the jumper, his crooked limbs tangled in its straps.

I ran to the fridge and grabbed a ready-made partial syringe of Palmetto Harmony CBD cannabis oil to give to Calvin once the seizure stopped, aiming to prevent further ones. I thought about giving it rectally, a method its maker had suggested to stop seizures or clusters of them, owing to the cavity's rapid absorption.

The seizure was typical in every way except that its onset was while Calvin was conscious, which has only happened three times in the past four-and-a-half years since introducing a homemade THCA cannabis oil; all other grand mal seizures since then have occurred while he's been sleeping.

Today is the fortieth morning since Calvin's last grand mal, one of his longest stints ever between convulsive fits. I'd seen a few harbingers of an imminent one yesterday—rashy butt, eye poking, some grousing, intense hugging, fingers in his mouth and in mine as if trying to tell me something. While changing his first diaper this morning, I noticed his right eye turning inwards more than usual, then I watched both of his eyes panning back and forth. I made a mental note, thinking he might be heading toward a partial complex seizure, the kind which are more common not long after he wakes up.

Though it's uncommon for Calvin to suffer a grand mal after he's woken, I'm not that surprised. Seems ever since Calvin's epilepsy diagnosis twelve years ago, the seizures have a way of migrating away from higher doses of medication. We've been giving him his CBD oil—the medicine to which I attribute this very long stint free from grand mals—just at night. I've read that CBD's half-life is nine hours, so it makes sense the seizures might start appearing in the daytime.

After Calvin came out of the fit, I slowly squirted in half his nighttime dose of CBD—10 mgs. Tomorrow, I may start giving him small doses of it—0.25 mls equal to 5 mgs CBD—every morning to see if we can control his a.m. seizures.

In the wake of this morning's grand mal, our boy has suffered two partial complex seizures. After the first one, I gave him a small dose of THCA by squirting it into his mouth. After the second, I gave him the same dose, though rectally, something I've never done with cannabis oil. The seizure stopped immediately.

Our boy is resting now. I hope with all my heart he doesn't have any more today. They are no fun to watch. It is hard to feel so powerless in their midst.

And just as I was editing this post, Calvin woke from a nap to a third partial complex seizure. He rubbed his eyes and began to tremble. His lips and face went pale, his breathing shallowed. I gave him half a milliliter of CBD oil rectally. The seizure stopped immediately. He is already asleep again. I hesitate giving him any more medicine because it is within the realm of possibility too much will cause him to have the fits. But my gut says epilepsy is the culprit, and perhaps, too, the ugly remnants of benzos—now gone—that for years were in his system.

things i'm grateful for

tall phlox. shiny new toilet seats. the look and smell of mulch. monarch butterflies. pink. transgender women smiling at me. autistic girls signing to calvin that they love him. kitchen shops and their owners. small glass tumblers. neighbors. palmetto harmony cbd cannabis oil. five-plus weeks free of grand mal seizures. quiet drives down harpswell neck with an untroubled boy. roadside ice cream cone with iconic view. bourbon within reason. dry days. sleep. calvin finally able to sit by himself (sort of) at a picnic table. nellie. cicada buzz. cardinals. beaches. walking through the woods holding hands with calvin for the first time without bringing a stroller. chips, any kind. happy boy. smiling boy. homemade mint ice cream. rosewater. the blue of baptisia. cool showers on blazing hot days. freshly mowed lawn. strong arms. denim. linen. kick ass nurses. sudden downpours. birdbaths. geraniums. my husband. the kindness of strangers. the love of friends near and afar. family. maine. commercial-free music. vinyl. weathered cedar shingle. alberta spruce. rhodies and azaleas. rain. screen porch. twilight time. good books. breeze over naked body. bats.

personal best

Late last week, Calvin matched one of his personal bests having not had any grand mal seizures in a month's time after having suffered six to eight per month since April. The longest Calvin has gone between seizures is seventy-eight days. That was five years ago when he was taking high doses of three powerful antiepileptic drugs—Keppra, Onfi and Banzel—before I began giving him a homemade THCA cannabis oil, and before starting a four-year wean from Onfi. On the downside, this month he has had ever slightly more partial complex seizures than of late, but—only a handful—they have been mild and brief.

Nowadays, Calvin is taking a fairly high dose of Keppra, but we have not increased it in two years or so. Moreover, his daily dose of THCA cannabis oil hasn't increased for years. In late June he began a low dose of a new CBD cannabis oil called Palmetto Harmony, to which I attribute the virtual disappearance of Calvin's grand mal seizures.

For the most part, since initiating the Palmetto Harmony, Calvin has been sleeping better and, besides a few brief manic episodes on most days, our boy seems happy, is smiling and giggling and hugging. His improved behavior and compliancy means it has been easier to take him places; he willingly walks farther and has gotten slightly better at sitting still. My guess is this improvement is also due to the CBD oil and/or the reduction in his seizure activity.

For those of you wondering why CBD seems to be helping Calvin now when it hadn't seemed to help during the years he was on a couple of different ones, I think it may come down to the way Palmetto Harmony is made; it is infused directly into the oil rather than being extracted using ethanol or CO2 methods. In this way, the oil captures the broadest, deepest spectrum of cannabinoids and terpenes from the cannabis strains its makers use. In other words, nothing is lost.

So, we've entered Calvin's second month with zero grand mals on the books. It is an amazing feeling of liberation, and I have hope that we can make the partial seizures go away.

a better day

After two miserable days, Calvin is back to his best self—smiling, giggling, eating some, drinking, not apparently seizing.

Thanks to all of you who called and wrote, sending messages of love and support after reading my last blog post. It means the world. I'm doing fine. Thanks, also, to the accident of birth—of emerging from my mother's womb a fairly upbeat person just like her and her mom—to my dad for showing me the merits of hard work and of never giving up, and to competitive swimming for helping me discover further how capable and strong I can be—emotionally and physically—and the difficult challenges I can endure when it matters.

All these gifts, along with gardening, writing, my awesome husband, our dog Smellie, our friends, family, my precious son, even the kindness of strangers, keep me going in the midst of his relentless epilepsy.

I'm most grateful for it all.

patience thins

Patience thins as my boy has more mild, short, insidious seizures—four yesterday and at least one this morning. One eye is red—mine; there is something in it I can't seem to get. Did I forget my child hit it? My fine hair has been ripped off and out by my boy's clammy grip.

It's oppressively hot and humid outside. Inside, the air is close. I sweat. Surfaces are sticky. My son is home from school again as I await his next fit. I hope the cannabis quells them into submission.

He pokes his eye and shrieks at times. He shakes his head back and forth crazily—drool flying—flailing his arms in a spastic frenzy. In my exasperation, I've a rare primal urge to slap him upside the head. I take a big breath instead. Earlier, I threw his shoe into the far corner of his bed. Pulled a muscle as I flung it. Felt no satisfaction as it punched the softness of his quilt. Pent-up yesterday, I mused on hurling opaline bowls into cement to mimic my heartshatter from the days' and weeks' and years' events.

Now my son swings and spins in his jumper. His jaw juts and clenches in the repulsive way that makes the "seizure dimple" I detest. His arms crimp, elbows up, claws inches from his face, fingers madly snapping. He's my son, but I don't recognize him, or perhaps I don't want to when he looks and acts like this.

It's not his fault, and yet.

how to ruin a day

I said to Michael that Calvin's day yesterday was one of his best ever; he was calm and super happy, compliant and smiling all day. He ate, he drank, he pooped. He hugged us at every chance, held my hand in the car and giggled when we kissed and tickled him.

But epilepsy knows how to ruin a good day. So far today, Calvin has had four complex partial seizures. The extra THCA oil I gave him after the first one did not thwart the second. The Palmetto Harmony CBD oil I gave him after the second and third did not thwart the third and fourth, though I gave him tiny doses thinking—rightly—I might have to give him more. After the fourth one, I gave him another small dose of CBD cannabis oil, but that was only twenty minutes ago, so too soon to tell if it works. Next time he has a partial seizure, I'll forgo the THCA oil and instead try giving him half of his bedtime CBD dose (twice the size of the singular doses that I gave him today) and see if it stops a cluster from occurring.

So today, the first day of the last week of his very brief and abbreviated summer school session, he's home with me. The windows are shut to keep out the heat. The sky is a powdery blue laden with moisture. The phlox and lilies are blooming, the grass is greening up from so much recent rain. Calvin isn't drinking or eating and isn't what I'd call his best self. And he keeps seizing.

But tomorrow is a new day, and I'm holding fast to the knowledge that Calvin hasn't suffered any grand mals in very nearly a month, the last one being the ninth of July. And I'll muse on his yesterday, hoping there will be more good ones like it in our future.

Photo by Michael Kolster

milestones

After several discouraging months of Calvin suffering too many grand mal seizures, in late June I stopped keeping track in my daily journal the number of days between them. Perhaps, I thought, by not counting the days in ink, I'd be erasing some of the stress that frequent seizures put on me. After all, it was dispiriting to see him have three within fifteen hours two months in a row and, at the very most, go only eight or nine days before suffering another. Recording their frequency on paper seemed only to serve in validating—and perhaps in some strange, cosmic way sustaining—their pattern.

This morning, however, I had to tell Michael how delighted I was that, in the past thirty days, Calvin has had only one grand mal seizure.

"When was the last time that happened?" Michael asked.

I went to my desk and pulled out a stack of past calendars, paging through them in search of a month in which Calvin had less than two grand mals. After a few minutes I found one; it was August 2013.

For five years, Calvin has had between two and nine grand mal seizures every single month, totaling as many as fifty-eight in one year, plus as many as 105 annual complex partial seizures. And though that is far fewer seizures than many children endure, I'm heartened to think that, since starting Palmetto Harmony CBD oil, my son could be on track to have as few as five or six more grand mals before the end of the year, perhaps even fewer, with only a smattering of complex partial seizures.

There is no guarantee that upcoming months will yield such a positive outcome; epilepsy has a way of catching up. Even so, having reached this milestone, I have felt my anxiety level drop not worrying as much about an imminent seizure. I'm beginning to dream about one day decreasing Calvin's Keppra. I'm beginning to muse on traveling more, and as a family. I'm hopeful Calvin's progress might improve. Maybe he'll be able to walk with us on the beach for a spell, like Michael and I did yesterday, something Calvin has never truly done more than once in his life and, even then, not very far or well.

For now, though, I'll bide my time enjoying this slice of seizure freedom, hoping it becomes his new normal.

click on photos to enlarge.