boy of responding kisses

Yesterday, Memorial Day, the day we honor soldiers who died at war, I held my son as he seized. Because it was his fourth fit in little over an hour (thankfully, the previous ones were not grand mals), and because it was midday, and because it was a most violent one, I gave him rectal Valium. At his side, I watched and felt him convulse and wretch and gasp for air until the benzodiazepine finally bathed his brain and the spasms disappeared. When it was over, his body limp and his eyes half-mast, I gently doffed his vomit-sopped shirt and put a new one on. Then, I cradled him and lifted him into bed—sixty pounds of his dead weight in my arms.

Once in bed, as I covered Calvin with his blanket, carefully tucking it in behind his back and under his feet, I thought about Walt Whitman wrapping and burying his cold soldier son on the battlefield. I wondered what it must have been like for him to know that his son—"boy of responding kisses"—was gone.

Though it is only Calvin's fourth or fifth daytime grand mal in over one-thousand days (they mostly occur at night since reaching a therapeutic dose of THCA cannabis oil), I was still disheartened. But then I realized that in May thus far, Calvin has suffered only two grand mals; the last time he had so few in one month was over three years ago when he was on a ridiculously high dose of the benzodiazepine, clobazam, which we've been weaning for nearly as long.

The road ahead is still a long one; we've got at least seven more months of weaning the benzodiazepine before he's completely off. But if Calvin can have one of his "best" months with regard to numbers of grand mals in the face of an active withdrawal and on ninety-seven percent less clobazam, I should try to rest at ease a little, and focus simply on my boy of such responding kisses.

Photo by Mary Scarpone

vigil strange I kept on the field one night

Every Memorial Day, I post this passage by Walt Whitman for its beauty and poignancy. While my mind is focused on veterans of war who have died on the battlefields, the images this writing provokes give me pause to remember and honor all of the children my friends and loved ones have lost. This goes out to their parents, as well as those lost in war:

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

knock on wood

Just a quick note to catch you up on things: spring has finally sprung in Maine; Calvin is on day nine since his last grand mal; though he projectile vomited on me while Michael was in Boston for the night, I survived; and—most notably—Calvin has had only one grand mal seizure so far this month (perhaps due in part to intermittent nighttime THC?). Knock on wood for us, okay?

cityscapes

Sunday night I returned home from a long weekend in New York, having stayed with extended family and some longtime friends. My time in the city was energizing. It began with a train ride from Newark where I met a handsome young Venezuelan couple from Orlando. Upon emerging from Penn Station, the three of us promptly got lost as the mercury approached one-hundred degrees. But we were all so excited that the heat didn't matter; we simply feasted on throngs of humanity, buzzing traffic, screaming sky scrapers and the various aromas, both putrid and sweet, that make Manhattan what it is.

On my first evening, I languished on the steps of a Brooklyn brownstone with Michael's cousin, Lance and his sweet pup, Stella. We drank rosé and, as dusk fell, his lovely wife Valerie pulled up on her bicycle. Joined by their college-age son Merlin, we dined inside on a homemade eggplant Parmesan, shooting the shit, catching up on family and on recent events. I slept in an extra room on a twin bed, the cool breeze of a fan drifting over my hips.

The next morning, on the way to see my friends Sofie and Steve, I had the pleasure of embracing—literally—Demetrius and Cory, a couple of handsome Jehovah's Witnesses who asked me to attend their bible study. Standing in the dappled shade of a sidewalk tree, I described to them my belief in pantheism—that God is Nature and Nature is God. I explained my trust in the interconnectedness of things, and then told them a little about Calvin. They no doubt agreed with the manifestation of God in nature, and as we parted they lovingly said they'd hold my son in their hearts.

Later, I sat eating an apple in the front seat of a taxi talking to my Middle Eastern driver about the unseasonably hot weather, about the goodness of fruit, and about bad passengers and worse drivers. He offered me one of his bananas to eat, then discarded my core in a brown plastic bag that he tied off carefully into a loose knot.

My friend Antoinette saw me wave goodbye to my driver then, with the sun at our backs and the wind in our faces, she and I sauntered across the Brooklyn bridge, soaking in the cityscape. Once we reached Manhattan, we paid our respects at Ground Zero, meditating at the edge of its magnificent reflecting pools with 2,606 names carved into their steely frames, the massive glass Freedom Tower watching over them like a parent.

We eventually made our way to Antoinette's Tribeca restaurant, Petrarcha, where her husband, Leo—pure Italian, once from the motherland—is the owner-chef extraordinaire. Leo brought me a glass of rosé and some fresh buffalo mozzarella with speck (smoked prosciutto) followed by an outrageous gnocchi, flourless chocolate mousse cake and the perfect cappuccino with a heart-shaped foam lid, then wouldn't let me pay the bill or the tip. Antoinette and I relaxed in our corner booth, begging intermittent visits from Leo, and whiled away the afternoon as the city and its glorious melting pot of people strolled by outside the glass.

On the long subway return to Brooklyn that evening, I sat next to a neatly dressed bespectacled woman, perhaps younger than I, with a glinting gold crescent cap on one tooth. She said she'd always lived in Brooklyn and I replied that I had come from Maine. We riffed about the weather, chewed our gum (we both had the same brand and flavor in our purses) and talked about children—mine and hers. I mentioned my blog, and before my stop, she asked me to giver her the web address. Using her pen and pad, I gave her my email too, then learned her name—Jacquline Williams. I've tried to find her on social media, but haven't had any luck thus far. We gave each other a squeeze before I exited the train. Jackie, if you are out there, please friend me.

Though I was still full from lunch, that night I managed to snarf one fried fish taco and a margarita on the rocks at a local bar in Brooklyn. Steve, Sofie (a friend from my days at Levi Strauss) and their nine-year-old son Dash—who, I should mention, is a pretty great kid and about Calvin's size—shared a picnic table with another young family. As we dined, I surveyed the happy patrons eating their spicy tacos and drinking beers. I nearly wept at how folks of so many races and ethnicities mingled in such harmony.

On Saturday, I took in a Broadway show called Natasha, Pierre and the Great Comet of 1812, which has been nominated for a dozen or so Tony's. Jaimie, who is a backstage dresser and another acquaintance from my days at Levi's, got me a ticket. The set and lighting were sumptuous and ingeniously designed. The show, its score and performers gave me chills and brought me to tears several times. Afterward, I grabbed a drink with Jaimie and we got caught up on the last twenty years. She got weepy telling me how cute she thinks Calvin is (she follows my blog closely) and so I held her hand. It was as if we'd been dear friends all these years.

On my last day, Sofie and I woke to strong coffee and breakfast burritos lovingly made by her husband. Steve, Dash and I watched an incredible Anime, Barefoot Gen, about the bombing of Hiroshima, the selfsame title of the graphic novel their son Dash is reading. Watching the scene where the pilot releases the bomb that demolishes and burns the city and its inhabitants, I couldn't help but think of "our" current reckless president.

Shortly thereafter I said my goodbyes to the boys, then set off with Sofie for one last day on the town. We headed northeast to The Met to devour two splendid exhibitions: Comme des Garcons and Irving Penn. I ended my New York visit with a burger and malt at the Shake Shack before hugging Sofie goodbye, jumping on the train and heading back to the airport where, again, I visited with a kind stranger who ended up feeling like a friend. As the plane lifted off, I watched the New York cityscape disappear behind a vast sea of clouds. I was sad to say so long to the spectacular city, though eager to get back to Michael, Calvin, Nellie and my garden, and heartened in knowing I'll return sometime again.

Click on any photo to enlarge.

imperfect world

In a perfect world, I’d be the span of a continent away this weekend celebrating my induction, along with a dozen or so of my fellow teammates, into my university’s athletic Hall of Fame. In 1986, the year they voted me team captain, my college swim team won the NAIA national championship.

In a perfect world, my husband and my son might have joined me on the uneventful, albeit long, cross-country plane ride plus a drive east from Seattle through the Cascade range to the arid wheat fields and pastures of central Washington state. However, a month or so ago, when I understood—and lamented—that I couldn’t bare to leave my oft-seizing boy to travel three-thousand miles and be gone no less than five days and at least a full day of travel away, I decided not to go.

But when Michael saw my disappointment, and since he'd cleared his calendar to take care of Calvin, he gifted me a ticket for a quick trip to New York instead. I’d not been back to the Big Apple, one of my favorite places in the world, for seven years, though I had promised myself I’d go every spring. He knew I desperately needed to get away, could sense my restlessness, exhaustion and despair, and if I couldn’t manage a cross-country trip, at least I could get away for the weekend to a place that I love that is less than an hour flight away. This, I could justify doing. And so yesterday, though it killed me to leave a sick, feverish and seizing boy and my loving husband, my blooming garden and the perfectest dog in the world, I pried myself from the safety and comfort of home and put myself on a plane.

During the flight, and especially when I finally saw the Manhattan skyline, anchored in a way by Lady Liberty lifting her torch above the horizon, I thought about a perfect world. In a perfect world, I thought, my child would’ve been born normal. In a perfect world he wouldn’t be suffering epilepsy. In a perfect world, he wouldn’t endure the effects of heinous medications and a protracted, painful and difficult withdrawal. In a perfect world my son would walk on his own and see well and run and play with friends and talk and tell us what is wrong. In an ideal world, perhaps, I’d be able to be two or three places at once.

But it is not a perfect world. It is imperfect at best. And so Michael is home with our sick little kid and I am here being coddled by loved ones and friends, and hopefully by Sunday when I'm heading home, I'll be rested, refueled, energized and ready to get back to the business of taking care of Calvin again.

Looking to Manhattan from the deck of the Brooklyn bridge.

friday the thirteenth

Though today's date is May twelfth, it's also Friday the thirteenth—thirteen days since Calvin's last observed seizure. How strange it feels to have witnessed my boy have some kind of seizure or another on half of the days last month and then not see any nearly halfway into this one.

This morning, under a still, gray sky, Michael and I went to watch Calvin participate in the local Special Olympics. Despite the fact that it was barely fifty degrees, the most disabled children—the ones in wheelchairs and strollers and using walkers—sat around for two hours while the other disabled children, teens and adults, raced around the track finishing their miles and their four-hundred yard races. Don't ask me why the event coordinators insist on putting the longest events for the healthiest contestants at the beginning of the day. Perhaps there is some method to their madness, but this weighs heavily on me and Calvin because, in one way or another, most days are hard ones for him—suffering seizures, drug side effects, withdrawal side effects, constipation, abdominal discomfort or pain, headaches, agitation, confusion—and so a day outside exposed to the elements of a Maine May no doubt preys on his fragility. Nevertheless, with the help of his ed tech Karen he endured until the start of his hour-late, ten-yard "assisted walk," though not without having had periods of spaciness and eye-fluttering (seizures?) and several attempts, some of them successful, at dropping to the ground throughout morning. He brought up the rear this time, due in great part to a slow start and the absence of an uber-competitive mother tugging him along. When he crossed the finish line, I got down on my knees and hugged my boy, who smiled a huge, proud smile. Not long after, Michael and I loaded him in the car and ferried him away.

Once home, he spun in his jumper, strolled hand-in-hand with me through the garden touching his favorite shrubs (the prickly mugo pine is his favorite) and walked quite well to Woody's, swinging his arms correctly at his side and with good balance (bad omen?). At Woody's, as always, he rocked in the rocker and ate a piece of chocolate from the candy jar.

At the usual time, the bus stopped at the end of our drive to off-load Calvin's stroller which he had sat in for the Special Olympics parade of athletes. Another ed tech, Michelle, handed me a stack of colored papers meant for Calvin, who was upstairs in his bed playing with (mouthing) some of this toys. With the baby monitor slung around my head eighties style, I sat in the bench on our deck, the sun having just come out, reading cards some of Calvin's sixth grade classmates had made him for the day:

Calvin is cool!!

Good luck! Congrats! From: Ashley

Congrats CALVIN!

Good Luck! Nice Job! From Hannah

Good luck. hope you win!! from: your friend connor

Two of them, drawn with great care and skill, made me cry:

Dear Calvin, I hope you have a great time at the Special Olympics and win! But most importantly have fun and enjoy yourself! Sincerely, Simon

and

Good Luck! Yay! Nice job! From: Lydia :)

I'm hoping that Friday the thirteenth becomes Saturday the fourteenth and so on. I'm hoping that, in the big picture, each day gets a little better than the last. I'm hoping that whatever I am doing will keep working; my guess is that the minuscule amount of THC tincture at midnight on suspicious nights might be thwarting pre-dawn seizures. And I'm hoping that one day Calvin will compete happily and more independently in the Special Olympics without a blink or a drop, a spell or a balk.

Calvin with his ed tech, Karen

animal. vegetable. mineral.

Friday night, we began our weekend in the nearby town of Bath with a quick bite and a drink at our dear friends' Daphne and Eloise's new restaurant, Salt Pine Social. The restaurant was festive and humming, guests clinking their drinks, servers buzzing between tables, the bartender and cooks flat out. We were grateful to have snagged the last two seats at the bar, our favorite spot to dine. With glasses of bourbon and beer in hand, we perused a fresh menu divided into three categories: animal, vegetable and mineral.

Vegetable:

We began our culinary experience noshing on a scrumptious chiogga and golden beet salad with citrus and arugula just as a complimentary bowl of melt in your mouth Myer lemon ricotta gnocchi with parsley pesto arrived.

Mineral:

Next, we dipped into the sea, beginning with a parchment-lined terracotta bowl cradling a heap of deep fried anchovies, followed by a plate of garlicy fried calamari, a platter of gravlox and cream served aside a stack of nutty Danish rye triangles and, lastly, a bowl of plump and savory le moules. Regrettably, we had to leave our hosts and our happy sojourn abruptly in order to make it home in time to relieve Calvin's nurse.

Vegetable:

Considering how things have gone for Calvin of late, it was a good weekend. He hasn't had an observed seizure of any kind in nine days, though he has exhibited some suspicious behaviors, spells of dubious pallor and a bit of what I call seizure breath. I anticipated grand mals last night and the night before, so I tried a new strategy. After midnight both nights, I gave Calvin four milligrams of homemade THC cannabis tincture, a quick and minuscule squirt inside of his cheek, not enough to wake him or risk aspiration. The seizures never manifested.

Animal. Vegetable:

On Saturday night we hosted a small dinner party with some friends we hadn't seen for awhile. Michael had spent most of the afternoon in the kitchen making a chicken mole. He made it with toasted sesame and pumpkin seeds, jalapeños and cilantro and served it over rice with warm corn tortillas, sour cream, guacamole and green salsa. Before eating, we sat before the fire talking cracking jokes and talking about, among other things, corn snakes, oscars, goldfish and frozen mice snake treats.

Vegetable:

While I mashed avocados in a bowl between my knees, I looked beyond our guests out the French doors to a glowing early evening garden, glistening with new rain and splashed with bunches of color from magnolias, amelanchiers, early-blooming rhododendrons, tulips and the crimson of young peony shoots.

Mineral:

As sparkling water and wine poured freely at the dinner table, upstairs our sweet Calvin slept like a stone.

holding onto hope

I'm trying hard to hold onto hope. After three years of an ongoing benzodiazpine withdrawal—until now yielding no significant uptick in monthly seizures—Calvin has begun having quite a few more these past two months. His average monthly number of grand mals since April of 2014 had held at around 4.3, but in March and April this year he suffered six each, and in April he had thirteen obvious partial seizures.

Recently, I got Calvin's report card stating that he has missed twenty-nine days of school, and has been tardy more than a handful. His absences—which amount to a total of six weeks of missed school—are largely due to seizures. Last month he suffered seizures on fifteen of thirty days.

When resulting despair begins to set in, I remind myself that not long ago Calvin went twenty-seven days without a grand mal. And so, as we inch his benzodiazepine toward a goal of zero (Calvin is now on 1.75 milligrams per day, down from a high of thirty-five three years ago) I try to remain optimistic that he can repeat a good stretch of seizure-free days.

Another consolation to my sorrow and dread is that I still have a few tricks in my back pocket. In other words, we haven't run out of options to try to reduce our boy's seizures. This weekend, I heard a Radiolab segment about treating mice with lactobacillus to increase GABA, the body's chief inhibitory neurotransmitter responsible for reducing neuronal excitability. GABA is what Calvin's brain is craving during benzodiazepine withdrawal. It made me wonder if doubling his morning probiotic, rich in lactobacillus strains which promote GABA, might mitigate some of his seizures. So I increased Calvin's probiotic this morning. If that doesn't work, I'll likely try switching his magnesium citrate supplement to one that has the ability to cross the blood-brain barrier and may also help regulate the uptake of calcium, which might have a positive effect on his seizures. Something else I've tried several times is to give Calvin a few drops of concentrated THC tincture when I suspect he's having partial seizures at night, and also during grand mals, to thwart further seizures. It's too early to tell for sure if that method is working, but it shows promise. Then, if none of those options pan out I'll likely increase his CBD oil or switch to an oil that has a higher ratio of THC to CBD, which Haleigh's Hope offers, considering some children find relief from their seizures using a bit of THC.

So, we still have some ammunition to hurl at Calvin's seizures during this painful and ridiculously protracted benzo withdrawal which, regrettably, is happening during puberty, a time when seizures often increase anyway. But I'm pretty hell bent on getting him off of the class of drug that he's been on since he was three.

Having said all that, despite the fact that Calvin is having a handful more seizures than he was three years ago, he is a different kid altogether, more, in ways, like he was before the benzos and other antiepileptic drugs. Before we began the wean and before we started him on cannabis, he used to wake crying every morning and I wondered how I could tolerate it much longer. He used to be awake for hours in a single night. He stopped being able to sit calmly on our laps while we read him books. He flailed and shrieked every time we changed his diaper. He coughed and sputtered and screamed much of the day. He pulled my hair. He shrieked every time we got in the car and most of the time we drove. He was disruptive in our favorite cafe. Now, with over ninety-five percent less benzodiazepine coursing through his veins, he is far calmer, more patient, more loving, more focused and, frankly, infinitely more tolerable. I'd even go so far as to say that, for the most part, he is a joy to be with again, and much easier to take care of than before.

So, I'll keep holding onto hope that we can get Calvin safely off of the benzo and be rid of them forever. And I'll keep holding onto hope that someday we'll find a way to stop his seizures while still keeping our sweet, happy, mostly calm, boy.

Before the benzos (and other drugs.) Photo by Michael Kolster