hopes, regrets and lamentations

hopes:

better times for my child without benzodiazepines on board. an end to his night terrors. more time outside and with friends. fewer seizures, fewer meds and better development for my boy. early spring. visits from faraway friends. more women and people of color in congress and in power. progress on my memoir. another visit to new york. more silver-gray hair. to see san francisco and seattle again. more time carved out to read good books. daylight dates with hubby. more love, forgiveness and gratefulness.

regrets:

harbored resentments. not enough naps. not enough exercise. not enough time with my homies. self-righteousness. not enough fish, vegetables and fruits. these six or seven pounds. grumpiness. not getting to the beach in months. exhaustion. impatience. pettiness. snark. spite. self pity. too much time spent inside by myself. not catching up with faraway friends.

lamentations:

the closing of bart's dvd rental store. the current president, his cabinet and other lackeys. conservatism. social media blues. patriarchy. white supremacy. oligarchy. deniers of white privilege. racism. bigotry. sexism. poverty. deceit. religious zealotry. greed. war. famine. misogyny. genocide. want. condescension. inequality. mass incarceration. pharmaceutical nightmares. bootstrap theories. police brutality. impunity. ignorance. neglect.

Photo by Michael Kolster

rabid child

The boy in bed next to me is a rabid animal, teeth bared, eyes wide, and shrieking. He lunges at me, grabbing fists full of my hair in his clammy hands. Like a battering ram, he butts his head into my chest. He pushes off of my throat to sit up, then slams into me again. He writhes, thrashes and kicks. Though he is only half my weight, I feel as though I am wrestling with a crocodile or giant fish, sheer muscle pounding me and evading my grip.

My boy screams and rants like this for hours on end, flailing and flopping in his bed while I do damage control for us both. At times he launches himself over the edge and I must catch him from falling out or from hitting his head. In his eyes I see terror or some kind of pain. I wonder if he is suffering a migraine, stabbing cramps or perhaps is passing a kidney stone. He acts and sounds as if someone is pulling his fingernails out or breaking his bones. The source of his agony can never be known. No remedy worked to end his torment.

I ask myself if this is a hallmark of benzodiazepine withdrawal, these nighttime episodes that have occurred a handful of times these past few years. I wonder if they are night terrors or seizures themselves. I wonder if, when I see them beginning, I should give him the rectal Valium, which presents problems of its own. 

I read about night terrors and look for possible links to benzodiazepine withdrawal. I see their relationship to frontal lobe epilepsy and read about the kind of seizures it spawns. They sound familiar to the psychotic episodes Calvin endures, but how can I really know? We can do another EEG. We can do another MRI. We can look for evidence of brain lesions or tumors. We could find ourselves in a position to consider brain surgery, though the knife is something I never wanted near my son whose flawless body adorns a fucked-up brain. Don't ever cut him, I've thought over and over again.

flawless body, Photo by Michael Kolster

picture perfect christmas

Yesterday we were graced with a picture perfect Christmas, as much as could be possible I suppose, given our disabled, chronically ill child. Calvin did not wake to a seizure, and he had a good morning while we ate cinnamon toast, drank strong coffee and opened the gifts Michael's parents had sent. Michael surprised me by installing eight black-out shades in several of our southerly windows so that I no longer have to struggle with an oversized, floppy piece of cardboard trying to block Calvin's obsessive and incessant efforts to stare directly into the sun. Why we didn't do this ages ago, I don't know.

Calvin's new nurse Rita, who is a glowing gift of kindness, candor, reliability, sanity, humor, professionalism, compassion, punctuality and spunk, was able to take care of Calvin for a few hours which freed us up to walk the dog together—a rare occasion—albeit in driving winds and snow. On the way home from the fields we were ushered into Woody's home—three doors down—by his son Mark who, when he saw us walking past, flagged us in from the cold. Upon shedding our snowy hats, scarves, boots and coats, Woody's son-in-law whipped up a couple of Bloody Marys then, in the living room, we joined the extended family of ten who, at the last minute, had descended on Woody's home due to complications from the storm.

The cocktails and camaraderie warmed our souls, as did the fire in the wood stove back at home. Before Rita left I had just enough time to shovel the driveway and make a batch of chocolate chip cookies while Michael got to work on the crown roast, gravy, mashed celeriac and potatoes, Brussels sprouts, and another batch of bourbon eggnog. Outside, the snow continued to fall.

Shortly after night fell, surprisingly Calvin drifted off to sleep immediately after a semi-agitated afternoon; I sense him ramping up to his next seizure which I think is going to happen soon. Guests arrived—two old friends and two new ones. Eggnog was imbibed. Candles were lit. Music ensued. Pork chops and mashers were dribbled in gravy, sprouts were roasted and tossed in Parmesan. All, including a delightfully light salad, were happily noshed. Two Bouche de Noels—one vanilla, one chocolate—were debated on their merits then quickly, though not completely, devoured. Various artists, paintings, forthcoming photo projects, the #metoo movement, and the opioid crisis were rigorously explored. Russ and Susan's absence at this year's table was palpable and deeply mourned.

It was as decent of a Christmas as we, in our life of relative confinement, could hope for or expect, and Santa didn't deliver any lumps of coal.

a secular amen

Though long ago Michael and I both lost our religion, we still enjoy some of the secular traditions that seem to have been hard-wired into us from childhood. I still like stringing up lights, wrapping a gift or two (one being the exact number I have wrapped this year) listening to a tiny dose—though no more—of holiday music, watching holiday films, donating to several charities and other worthy causes, eating Michael's special meal on Christmas Eve and another one, with guests, on Christmas Day. What I haven't done in several years is to adorn a tree. The joy that decorating used to bring has been lost since it became clear, years ago, that Calvin would not grasp or delight in any of the secular Christmas traditions, including trimming a tree.

For a few years after his birth, every December I'd take boxes from the basement, opening egg cartons and smaller parcels filled with delicate ornaments wrapped in tissue and newspaper. I strung what I call Charlie Brown trees with tiny white lights. The twinkling trees were beautiful, but there was a sadness and hollowness in their making, due directly to the loss of what I had hoped would be a mentally, and therefore physically, healthy child who would help me light and trim the trees. The boxes have remained undisturbed under the stairs to the basement for years.

Today I read an opinion piece titled, When a Grieving Mother Talks, Listen. And though the piece deals with perinatal deaths—stillbirths and babies who die in their first week of life—I can begin to understand the loss while remembering several dear friends and loved ones who have suffered the grief of losing a child at birth. Perhaps in a slightly similar way to those who lose infants, since Calvin's difficult birth and life almost nothing that was familiar about celebrations like Christmas or birthdays feels familiar anymore, and nothing can really fill the void that lost joy carves out of a soul.

We don't get to delight in our child climbing into bed with us on Christmas morn, don't get to see his excitement over Santa's arrival, don't get to relish in making Christmas cookies with him, or witness him tasting eggnog for the first time, don't see him unpeel gifts, play with new toys, read holiday stories, make snowmen, trim the tree.

Though, like I've said before, we aren't Christian, and we don't buy into the commercialism of Christmas, we'd still likely participate in some of Christmas's pageant if not for our disabled, chronically ill child—I mean, Jesus's existence is still something worthy to celebrate seeing as though he was such a cool guy, someone who fed the hungry, helped the poor, healed the sick, didn't judge, loved the most vulnerable, including wayward souls. And though we enjoy receiving greeting cards in the mail from friends near and far, I still feel a pang of sorrow when I open them. Even so, something inside me wants to continue getting them; I find I live vicariously through my lovely friends whose kids are normal, and who delight in normal things. Please don't stop sending them.

And in case you are wondering, we just finished drinking a batch of Michael's great-grandmother's eggnog recipe that has just the right amount of bourbon topped with a cloud of whipped egg white. I'm having a hot flash right now, which somehow feels luxurious. Our friend Lauren just left after a nice visit having played with Calvin in a way no one else does. Calvin is hunkering down in his bed with Michael, squirming around, putting his hands down the neck of Michael's sweater, cooing like a happy baby as he sometimes does, fingering Michael's ear and mouth. Soon we'll be eating an herb-encrusted rack of lamb, a white bean puree, steamed asparagus and pecan pie. Tomorrow night we'll have a pork crown roast, celeriac and potato mash, roasted Brussels sprouts, salad and bouche de noel. To that I can be most grateful and say a secular amen.

the benzodiazepine medical disaster

This is for anyone prescribing or taking benzodiazepines—Xanax, Klonopin, Valium, Onfi, Sobril, etc. Beware of their long list of withdrawal side effects and dangers of their use, including possible increased risk of developing Alzheimer's.

For help in coming off of them, please refer to The Ashton Manual.

in my dreams

Sometimes, in my dreams I can breath underwater. Other times I fly. I just aim my face to the sky and slowly lift off the ground. Most often I dream of flying at night, looking down on darkened houses, purple beaches, and the tops of swaying evergreens, sometimes having to dodge and dart between power lines. Mostly, I am in control of where I soar, as if on thermals, and I alone posses this gift. Often, I am trying to help lost souls find their way, navigating and calling to them from above the earth. In other dreams I try to hide my gift of flying from villains who would attempt to shoot me down.

Other times I dream of Calvin having seizures, only to wake minutes before he launches into one.

Once in a blue moon I dream of Calvin talking to me.

Last night, though, I dreamt that I discovered ropy scars in each crease between Calvin's thighs and hips. These wounds were due to the rigid plastic tabs of his diapers being positioned too low and therefore cutting into his skin. I winced when I found them, then felt a sinking in my gut thinking my poor boy suffers so very much.

This morning, after the nightmare about his wounds, he had another grand mal on the heels of yesterday morning's one. December had begun fairly well, with just two grand mals by mid month and only one day with a spate of partials. But epilepsy has a way of catching up, of not allowing much down time, rest time, time to recover. If Calvin is not having a day with seizures, it seems he is ramping up to or recuperating from one.

As I lie next to Calvin in bed after he suffers these fits, and in my wicked state of chronic sleep deprivation, I sometimes lament my life situation—stuck in this flat New England town with little to do, stuck in my writing a bit, stuck indoors with a seizing child, stuck in this cold, somewhat isolated part of the world. I lament the state of things in this nation with its sick president and its hypocritical, greedy, disingenuous republican congress bent on twisting the truth just like their unhinged leader can't help but do. I lament the growing divide between the working masses and the wealthy few, the damage cabinet members are doing to the departments they've been hired to marshal, the turning of the clock backwards to a time when polluting earth, air and rivers was okay to do, when women's rights were kicked to the curb, when overt racism and mob justice ruled, when only white men reigned, when the disabled weren't given a place at the table, when the only people whose religion was protected were Christians, and when folks couldn't marry whom they wanted to.

I want to float on a thermal into the future where none of this is true.

In winter, a few nights each week, Michael and I watch the PBS news hour where we see stories of the world we wouldn't see on network news. I watch accounts of war, famine and genocide. I watch stories of the injustices of racial and religious discrimination. I see evidence of poverty and corruption, disease, neglect and mass starvation. I choose to bear witness to these avoidable atrocities—pain, anguish and suffering which our current administration's rhetoric and policies exacerbate. I am angry. I am tired. I am ashamed of the contemptible president and GOP congresspeople who claim to be leaders of this beautiful nation and all of its people, not just the few. They are not champions of truth, justice or morality.

Thinking back to my dream about Calvin's scars, I wonder what it means other than it is something of concern when he is in the care of others; I've seen the diaper tabs cause red marks and welts that must hurt. Then, I think about flying and of the free feeling of breathing underwater, and I wonder when we'll surface from this nightmare of relentless seizures, this nightmare of a depraved and hurtful regime.

Photo by Michael Kolster

maine street

By nearly every measure, Saturday was stellar. Calvin didn't suffer any seizures. He didn't wet his bed, soil his pants or jumper. He didn't leak or spray prune juice everywhere. He didn't try to stare at the sun very much. He ate well, smiled some, giggled a bunch, and was really very cooperative.

Though the sun was out, the mercury never climbed above freezing, but the unseasonably cold single digits we've had recently and the lack of bitter winds made it feel balmy, so we bundled up a little and drove downtown. By downtown, I mean our city's short main drag which, I guess, is aptly named Maine Street, with its small shops, salons and restaurants.

First, we visited Wilbur's chocolate shop where I bought six cordial cherries to give my neighbor and friend Woody for Christmas, about the extent of my holiday shopping. As we waited in line, I gave Calvin a couple of chocolate covered cranberries that he chewed well and seemed to relish. Next, we returned a DVD to our favorite movie rental store, Bart & Greg's DVD Explosion which, most regrettably, will be closing later this month. I'm not sure what we are going to do without the establishment that has served us so very well these past fifteen-plus years, with its 36,000-film inventory and its lovely owners and employees who nearly bat a thousand recommending films we wholeheartedly appreciate and couldn't get elsewhere—obscure films, independent ones, strange flicks and documentaries, foreign films and the occasional blockbuster. As the only folks I know without smart phones, Michael and I have also never streamed a film from Netflix, nor do we intend to. But how we are going to satisfy our desire for little-known films that expand our minds, sate our appetite for the peculiar, and challenge our notions of the world, I don't know. Thank you Bart and Co., for having met and exceeded that need for so long.

Next, I brought Calvin upstairs to Wild Oats Bakery and Cafe where the line was nearly trailing out the door with folks buying lunch and/or any number of other delectables including some of the most amazing cakes and pies I've tasted. It would have been almost impossible for us to wait in a line that long without Calvin sliming all of the glass cases in drool. So, instead, we stood and sampled some delicious spreads on tiny squares cut from freshly made loaves—salmon spread, herb spread, three veggie spreads plus a layered tomato-pesto one. Calvin gobbled them all up, then put a finger to his lips asking for more.

Our last stop was on the other side of the four-lane road shown below. Calvin has a habit of wanting to drop down in the middle of streets, but we managed to get across with no problem. Once inside a favorite Maine Street shop called Local Market, we made our way to the deli counter where I ordered a pound of Calvin's favorite wild rice and edamame salad with grated carrots, shaved almonds and cranberries. The shop is always tastefully assembled with scads of kitchen sundries, jars of chocolates, bottles of wine, racks of fancy snacks and crackers, country farm tables stacked with glasses, mugs, cups, plates and bowls, table linens and baskets brimming with fresh organic vegetables all grown local. Even so, I navigated my precarious boy through the narrow aisles without disturbing or destroying the attractive displays or turning over any tables. Thank you Sylvia and Sharon for always being so welcoming to me and my unwieldy son.

To top off the day, Mary, Calvin's former ed tech, came by to watch Calvin for the rest of the evening. I was able to take Nellie for a nice long walk through the woods, have a drink with Michael at our favorite watering hole, then join our friends for cocktails, appetizers, a scrumptious and well-worth-waiting-for leg of lamb dinner, and a much-needed dose of terribly bawdy humor at their house just up the road, something we don't get out and do as often as we'd like.

Today we've got just one or two errands on the docket, which is good since the temperature at noon still hasn't reached twenty. We've got a holiday party to attend this evening at our friends' restaurant, and though Calvin already seems primed for another seizure (with a very rashy butt, face and chin for starters) and though the party is not at one of the familiar places on Maine Street, he seems good enough to go.

Downtown Brunswick, Maine, Photo by Unknown

twenty-six: remembering sandy hook

Stepping
into a seaside childhood morning
—only colder—
Wind whipping,
Moist and grey and brisk,
Rudy by my side.

Muddy
gravel underfoot,
Bits of sandy ice. A soggy cigarette butt.
The chapel bell begins to ring.
I stop to listen,
and count.

Twenty-six.
My head hangs low
and sorry,
Straining to hear each faint toll
amid the hiss of traffic
rushing by.

The fields,
A semi-frozen marshland.
My ribs lace up,
Wind whisks away each breath,
I begin to sob into shallow
glass puddles.

A sudden squall
evokes a school of hushing voices.
The tops of watchful trees
Standing tall and firm,
yet swaying
Nonetheless.

Silent forest.
Distant barking dogs.
A murder of crows looks on.
Thwap, thwap, these rubber boots against
Bare calves
Sting.

The skies
are silver, lead and low.
Shivering limbs set free cool droplets
like tears upon my face,
One for each child lost we must remember.
 Twenty-six.

In loving memory of the Sandy Hook Elementary School shooting victims. 

photo by Michael Kolster

shitshow

When this shitshow is over, no doubt I'll be ready to merge with the universe.

kids

Just as the season's first heavy snowfall was putting down its inches, a dozen or more of my husband's college photography students crowded into Calvin's room. They'd come over for dinner after their last gathering of the semester to eat shepherd's pies Michael had prepared earlier that afternoon. As they filed in, I introduced myself, trying my best to remember their names as I did. One of the kids (I call them kids though they are really young adults) asked if Calvin was still awake. I told him yes, and invited him and any others who might like to meet their professor's son to come upstairs before I gave Calvin his nighttime meds and tucked him in.

To my surprise, the entire group followed me up and into Calvin's room where my boy was laying on his back, safely secured under the netted canopy of his bed, chewing on a sock and playing with his toes. When I unhooked and threw back the netting, he sat up then knelt to help me lift him out and onto the changing table. I told him that some friends had come to greet him, then put on his glasses so he might better see them.

"Hi Calvin!" a few of them said. I took Calvin's hand and helped him wave back at them.

One of the students told me that they'd seen photographs of Calvin that Michael had taken, and that he had also read my blog. All of them were sweet to my boy and seemingly comfortable in the presence of our peculiar kid who, unless one is within arm's reach of him, will not acknowledge their existence.

When the gang retreated, I changed Calvin's diaper, tossed him into bed and kissed him goodnight. He went right to sleep and didn't make a peep all evening.

Downstairs, the kids filled their bellies with curried shepherd's pie for eighteen, salad, and brownies a la mode. They finished with a Yankee swap of their photos, which I thought were all quite good.

By evening's end I had learned all of their names—Niles, Nye, Vin, Amanda, Angela, Neoma, Devin, Enrique, Brie, Justin, Diego, Harry, Sarah, Jack, Clare, Evelyn and Grady.

Having the kids over, something Michael does with both of his classes at the end of every semester, is often bittersweet depending upon my mood. Last night, when they were setting out into the snowy cold, I was a bit misty eyed as a few of the young men and one young woman offered me hugs. As I bid them farewell, a pang of sorrow shot through me, knowing Calvin will never fill the void—the promise, or so I thought—that parenthood had once held: talking with my boy about the workings of the world, seeing him play games with friends, reading his written words, knowing some of his thoughts, meeting his sweethearts, helping him achieve his dreams, perhaps sending him off to college or traveling with him to distant places in the world.

This morning at four, when the snow had stopped and the air was cold and still, Calvin suffered his first partial complex seizure in thirty days, the longest stint between them in over a year. He made it nine days between grand mals, which isn't horrible considering he is taking almost zero benzodiazepine and far less CBD oil than he was a few months ago. As the day has worn on, though, the seizures keep coming. He's had five thus far; the THCA isn't keeping them at bay, perhaps because he has a low-grade fever, so I gave him a bit of THC rescue tincture to see what it can do.

For now, he is back in his bed and resting with the net pulled over. Michael is downstairs making another curried shepherd's pie for tonight's second class of students who are coming over. I'm sitting on Calvin's changing table trying not to despair about so many seizures within just one day ruining what had started off as a decent month in terms of numbers. And, I'm thinking of those nice kids who, if only for a moment, gave me a piece of what my heart is sorely missing.

earth's elixirs

From yesterday:

We got a good soaking last night. As a result, the spruce bark is black, the cedar mulch coffee brown, and pine needles lay in a copper carpet skirting the lawn. The low sun has reddened up the small-leaf rhododendrons dotting the back yard. At the perimeter, maples and oaks and other deciduous trees are mostly naked save a few bronze leaves at the top too stubborn to surrender.

When it pours like it did last night, I feel as though the world has been bathed and renewed, as if the rain were some kind of elixir for the toxic political climate we find ourselves in this year. I woke this morning in the wake of the storm, fully cognizant that Calvin had made it without having any seizures during the recent phase of the last full moon. On Friday, if he makes it that far, it will be four full weeks since his last partial complex seizure—a longer stint than he has gone in over a year—and ten days since his last grand mal. If he continues without any hint of partial seizures, I'll be more convinced that the CBD cannabis oil we've been giving him—one that we halved a few weeks ago, though one that seems effective in lessening some kids' seizures—might be a trigger for Calvin; he rarely suffered partial complex seizures before starting CBD in November three years ago and, until now, I was certain the culprit was exclusively benzodiazepine withdrawal.

This morning I took Calvin to the pediatrician for his annual exam. These past few years, I've rarely had to take him to the doctor; he scarcely gets sick anymore. Gone, it seems, are the days when calendars were choked with appointments to see the neurologist, the neuro-ophthalmologist, the endocrinologist, the gastroenterologist, the nephrologist, the orthotist, the phlebotomist. Virtually gone are his daytime grand mal seizures. Gone, it seems, are his sleepless nights. At the office Calvin remained quiet and calm. He walked well and tall. He stood utterly motionless on the scale without any support while we checked his weight (he's little for a kid who in February will be fourteen, weighing in at 58 pounds unclothed and just 4'4" tall.) I updated his meds, proud to report that we have reduced his benzodiazepine from a daily high of 35 mgs down to just 0.6 mgs, most thankful to my homemade THCA elixir—and to Remedy dispensary for their cannabis flower—for its help in doing so.

After I dropped Calvin at school I took Nellie to the fields. There, a friend told me that a group being called The Silence Breakers—courageous women and a few men who have publicly denounced their sexual harassers and assaulters—were chosen collectively as TIME magazine's Person of the Year. I was happy to learn that TIME didn't name the current POTUS who has broken every precious tenet that Americans should treasure—truth, justice, honor, trust, respect, equity, decency, discretion, goodness, wisdom, sensibility, humility, humanity. As I strolled home, I held the image of The Silence Breakers close to me, and beamed.

In the past hour, the sun has begun peeking out from behind the clouds, bathing the greenery with its own elixir. I sit here at my desk in the quiet before Calvin comes home, silently citing my gratitude for the many things provided me:

lovely husband. wonderful pup. extraordinary child. the hope of his emerging. the village that helps us raise him. cozy home. marvelous garden. enough food. enough drink. enough clothes. enough heat. enough love. compassionate, humorous, generous, intelligent friends. a world full of righteous justice warriors daring to take on willful ignorance, liars, perverts, tyrants, phonies, narcissists, hypocrites, bullies, zealots, bigots, blowhards, gluttons, racists, white-supremacists, misogynists, sexists, homophobes, xenophobes, crooks and thieves, and bring them to their knees.

I also understand that fear and hate are bedfellows, and ignorance is often stubborn, which is why this earth needs repeated bathing—in truth and justice, not in deception, bigotry and greed. So I continue looking for earth's elixirs, for my child, my family, my community, and for what ails the world. Most of the time, I find it in speaking and communing with others. And, most gratefully, I find it in mere words.

pammukale

From a work in progress:

The spring water tastes soapy, these old stones soaking in its broth, and as I glide underwater, eyes open, I scoop up mouthfuls of what I’d like to think is from the Fountain of Youth, and I wonder what it’d be like to live forever. These sunken pillars I encircle are broken, ancient and pitted, marble ruins designed to brace a mighty roof, not meant to stew in bubbles singing up from the earth. Some stones are completely immersed, while others peek their caps and spines above the water to dry in the sun in such a way that reminds me of beached seals. I choose one on which to rest my head and, draping myself across its girth, I watch droplets, like pearls from a broken strand, scatter across my arms, gravity tugging each one back home into the pool. Sifting sand between my toes, I can hardly believe I’m swimming with this history, touching toppled citadels with bare feet, running fingers across a rugged facade that holds so many memories of ancient Romans, Turks and Greeks. I wonder if lovers carved their bliss or misery into these stones centuries ago. For a moment, I wish my parents could see where I am, go where I have gone, retrace my steps wearing holes into thin soles treading countless miles with nothing but a forty-pound tote.

After a while my skin begins to prune, but I remain in my quiet chamber which feels so much like a womb. The others here are all strangers to me. Some are mothers, their children perched on sunny rocks hugging their knees, little gargoyles on a wall. A few of the women have Roman noses and look, perhaps, like Fellini stars, though have names like Fatma and Hilal. Their dark manes spill in ringlets over gleaming shoulders, mermaids emerging from this inland mineral sea. I want to know them and hold them, go with them and eat their homemade yogurt and cheese, frolic with their flock of happy kids, play charades, speaking with hands instead of mouths, which is all we can do to be understood. At this I know I am good.   

I dry myself and dress, grab my backpack and set out to the limestone falls. Alone, I stand upon the vast cascade of Pammukale, white as clouds, icicles or frozen waterfalls, where each scalloped terrace cups a brimming pool like I’ve seen in some sick Hollywood mansions in the hills. Standing there I feel lost, looking out to the unreachable horizon, its glare concealing what might be between me and the pristine.

I go south by coach to the coast at Kaş then Fethiye, Marmaris, Bodrum. Each bus is full mostly of men, their faces beaten into leather by the Mediterranean sun. They’re smoking hand-rolled cigarettes, rolling prayer beads between callused fingers and gawking at me mere inches from my nose. I flash photos of them, their eyes wide like little kids; the likes of me—a young woman traveling alone—a rarity in these parts. Through the stale haze in the back of the bus I see hens flapping their wings in the arms of peasant women, their clean but crusty-nosed children peeking from behind their mothers’ skirts.

In each seaside town I spend a day or two for a buck a night to sleep in neat pensions with new Australian friends, waking to a fresh loaf of bread every morning and a jar of chocolate-hazelnut spread for three. From Kuşadasıe we take a day trip by taxi through hilly country to visit the house of the Virgin Mary. The driver lets one of us take the wheel. At the base of the mountain we get out and hike a few miles up its face, traversing through tufts of shrubs, thorny briers and knee-high rocks. What brought her here? I wonder, so far away from her son, Jesus. Then I wonder if it is all a myth or hoax, because why would she travel so far away and set herself atop a mount with nothing to comfort but a babbling brook, alone with just her thoughts. And, once inside the small, dark room fashioned with handmade brick, small candles flickering in the draft, I think, perhaps because her boy was dead.

Photographer unknown

end of november

When I fetched Calvin from the bus yesterday, he had a smile on his face with his tongue stuck out into the frigid wind, a cute look that has emerged in the past several months. I bent down to kiss him and I smelled what I call seizure breath, a telltale sign of a looming grand mal. I sniffed again just to be sure I wasn't imagining things; he had had a grand mal the morning before, so he wasn't really "due" for another one until sometime later in the week at least.

As the afternoon wore on, the low sun casting its long shadows, I noticed other omens: bouts of shrieking, flushed cheeks, fingers in his mouth, eye poking, irritable and whiny before bed. As a result, just before midnight I woke up to give him a dose of THCA tincture for good measure, but it wasn't enough to thwart the grand mal that came at 4:20 a.m.

My boy is still not back to baseline, so I am keeping him home from school again, at least for the morning.

November, which started out pretty badly with a rash of grand mals and partial complex seizures within the first twelve days, calmed down after we halved Calvin's CBD oil on the thirteenth; he hasn't had any partial complex seizures since then and, until last Sunday, he'd had only one additional grand mal. However, including that one plus the one this morning, he has had a total of six this month, and a count of nine in just thirty-four days—twice his monthly average of grand mals. The end of November can't come soon enough.

Nonetheless, I am trying to remain positive, though I am anxious and watchful this morning, hoping he won't have any partial seizures which have a habit of occurring in the wake of his grand mals. If we could eliminate his partial seizures he wouldn't miss so much school, a place where he learns and, on good days, seems to thrive. I'm also reminding myself that, though he had a fraction of the seizures before starting the benzodiazepine wean over three-and-a-half years ago, he was an impossible child, reducing me to tears on most days due to his disconsolate mornings, incessant shrieking, extreme hyperactivity and chronic insomnia, which lead Michael and I to agree that we'd exchange his poor behavior for a few more seizures, hoping to improve our family's quality of life. To a great extent we were right, though the hardship now is the number of days Calvin has had to stay home from school.

As with every year, the advent of winter-like weather—bone-chilling winds, shrunken shrubs, short, cold days, naked trees—causes me to pine for the spring, this time more than ever. By the first of March Calvin will have taken his last dose of clobazam, the benzodiazepine he's been on for years and one we've been painstakingly weaning from a daily high of thirty-five milligrams to just over half of one. My hope is that once the benzo clears his system, Calvin will have fewer seizures simply because he will no longer be in active withdrawal. We will see. If not, I'll be on the hunt for some other remedy, November a distant memory.

Photo by Michael Kolster

chimerism

At two-fifty-five this morning, I opened my eyes and realized that Calvin had been sleeping deeply—too deeply—since we'd put him to bed just before seven. Because of some typical harbingers yesterday, I suspected an oncoming seizure, so I decided to get out of bed and give him a dose of my homemade concentrated THCA tincture while he slept, an attempt to thwart an early morning fit.

Just as I was looking in on him, though, he let out his seizure scream, a disheartening sound not unlike someone who has been scared to death. I hit the timer and grabbed the vial of frankincense while Michael detached the safety netting and lowered the side panel of Calvin's bed. I dabbed a bit of the aromatic oil on the sheet near Calvin's nose, then rubbed some of it on the soles of his feet. The seizure was shorter than most, and after it was over, I gave him his morning clobazam early, plus the dose of THCA tincture I had meant for him to get.

My boy slept soundly for the next hour and a half, though I remained awake next to him thinking about how incredible it was that I woke just moments before the seizure hit. I remembered a study I'd heard about a few years ago citing a phenomenon called microchimerism, a condition in which cells from a fetus cross the placenta and enter the mother’s body where they can become part of her tissues forever. I wondered if microchimerism is responsible for what I like to think of as mother's intuition. I wondered if perhaps microchimerism is the reason I woke just before Calvin's seizure, and why I woke eight days ago in Washington DC at the exact time Calvin was having a seizure at home in Maine, and why I sometimes dream of Calvin seizing, only to awaken mere seconds before he has one.

When I looked into microchimerism, I found its root in the word chimera, a mythical fire-breathing lioness with the tail of a serpent and the head of a goat rising up from her body. In ancient Greek mythology, the chimera was an omen of storms and natural disasters. I often think of seizures as storms in the brain. I sometimes—lovingly—see Calvin as a walking disaster, an accident waiting to happen.

After giving Calvin the THCA tincture, he seemed back to baseline by the time he woke up. I'm feeling more and more confident in THCA's ability to control Calvin's seizures to a great extent, and proud of myself for having fiercely scoured the internet five years ago in search of such an elixir. And at times, I do feel like some kind of chimera, a fire-breathing beast, with Calvin, my little goat, rising from inside of me.

thanksgivings

winter gardens with red-leaved rhododendrons. sunny days after rain. sweet angel thai food. eating home-roasted hazel nuts out of the shell. communion. the smell of onions sautéed in olive oil. running water. seizure-free days. brined turkeys. chef hubby. kinfolk. sweeney potatoes. warm rolls with butter. roasted brussels sprouts. chrysanthemums and peach-colored roses. folks gathering around a table. vino. chorizo dressing. new friends. cozy home. gas stoves. bourbon on the rocks. candlelight. pie. pie. pie a la mode. wood burning stoves. cranberry sauce and gravy. so many days with michael home. quiet streets. low light through the trees. neighborhood strolls. crazy dogs. in-laws. dollar store candle holders. okay kid. stereo.

out of this world

On Saturday at four in the morning at my friend's house in DC, I woke up abruptly, looked at the clock and thought, I bet Calvin is having a seizure. Sure enough (I found out later when I called home) he was. It's a helpless feeling being a world away from my son, particularly when he isn't doing well. 

I managed to go back to sleep, but not before pondering the unforgettable images I'd seen at the The National Museum of African American History and Culture the day before. I had spent hours there, perusing several floors inside the massive structure which reminded me both of a ship and an African basket, with its sculpted bronze facade. My journey began in the building's bowels in the year 1400, the advent of the African slave trade. Visitors, most of them African Americans, wove their way through artifacts, descriptions and quotes chronicling the hellish transatlantic voyage that enslaved African men, women and children had to endure. I read accounts of what I already knew, of children being torn from their mothers to be sold at auction, of humans being stripped, oiled and groped, regarded as chattel and treated like animals, of humiliation and rape, of lashing and lynching and burning at the stake. I read what I know to be fact, that all men are created equal, and yet claim to this truth is still out of reach for too many souls. At times the images brought me to tears, mourning the wretched things white men did to fellow human beings, lamenting the ongoing racism in this nation and its denial by so many, but hopeful that folks can continue to be enlightened beyond their ignorant selves.

That night I used Uber for the first time, perhaps convincing my young driver, Mario, to purchase health insurance on the ACA exchange. When I reached my destination, an Italian restaurant with white linen-topped tables, I sat and drank Barbaresco and nibbled on succulent roasted octopus, a whole Mediterranean fish filet, and pasta frutti di mare, all courtesy of my patron, our dear friend Ades who lives in Virginia and adores our son. We caught up on our goings-on, and I expressed hope that Paul could visit us in Maine more often. Just shy of midnight, we closed down the restaurant with a mini caramel cheesecake, an espresso, and twin glasses of Limoncello.

My short visit out of this world and into to our nation's capital had begun as a good one, though peppered with sadness missing Michael, Calvin and Nellie, and when reminded of how significantly disabled my son is—at first smiling at walking toddlers no taller than my knee, then weeping at the sight of children talking with their fathers and quizzing their mothers about historical scenes; my grieving over Calvin's great limitations never ceases to ease.

Though the weather was windy and frigid, I managed to stay warm by walking in-between monuments, memorials and museums. I walked over six miles each day, not including the hours I spent on my feet viewing exhibits. On Saturday I visited The United States Holocaust Memorial Museum, which was as sober as the previous day's tour through our own nation's ongoing wrongdoings against African Americans. Again, I wept for the innocents who suffered such miserable crimes of humanity. One by one I came across heart-wrenching displays. The first people to be killed by the Nazis were the mentally and physically disabled. Children like my son Calvin, whether Jewish or not, would have been taken from their parents and murdered by use of lethal injection in an attempt to cleanse the Arian Nation. The Nazis killed the elderly and the infirm. They killed Catholics and homosexuals. They systematically imprisoned and murdered millions of Jewish men, women and children.

I came upon a familiar quote we best heed which reminded me of our sorry-ass POTUS, too many Republicans in congress and other deplorable White Nationalists and bigots:

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out— 
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out— 
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.

—Martin Niemöller

And another, thought to have been spoken by Albert Einstein:

The world is a dangerous place not because of those who do evil, but because of those who look on and do nothing.

And, I read aloud with conviction the words emblazoned on a banner in the hall of the Holocaust museum:

NEVER AGAIN

Indeed.

My last morning was less somber. It began with a latte topped with heart-shaped foam. Across the table from me was my host and new friend, Jen, who had given me her bed, lent me her hairdryer, her jacket and a small backpack, and was my personal docent unearthing the best pork bun in China Town and helping me navigate the city. 

Hours before my train to the airport departed, I was fetched by our dear friend David's eighty-two year old mother, Yolanda, who I had never met before. She treated me to the most exquisite brunch at the swanky Hay Adams hotel that was completely out of this world. As the servers poured us endless flutes of champagne, we chatted, laughed and got teary-eyed as if we were dear old friends, all while nibbling on delectables from a ridiculously sumptuous buffet which included oysters on the half shell, seared tuna medallions, lumps of melt-in-your-mouth mozzarella buffata, roasted apples and pears, roasted split figs stuffed with chèvre, prosciutto, salami, scallops, prawns, smoked salmon, beet and quinoa salad, roasted eggplant and squash, tender asparagus spears with hollandaise sauce, ruby red grapefruit sections, every kind of croissant, raisin buns, savory cheeses, and candied pecans. Then, if you can believe it, came the main course. I chose crab-cake Benedict with poached eggs. Yolanda opted for steak au poivre with duck fat fries on the side. As if that wasn't enough we indulged on tiny cups of creme brûlée, and a slice of chocolate mouse cake. All the while I kept reminding myself to be grateful for my good fortune in this often intolerant, oft-forgiving, crazy-ass, upside down world. 

dc or bust

After a month of angst, this morning I boarded a plane bound for Washington DC, flying on a ticket that was meant to take me to the Womens March last January, but didn't because I got cold feet.

As I made my way through the Jetport security I heard someone call my name. I looked over my shoulder to see my friend Lynette, a woman who used to be my colleague and became my boss at the last job I held before Calvin’s birth, which was as a senior apparel designer at a major outdoor company in Maine. We embraced then headed for the gate where another of my former colleagues, Jackie, was waiting. The women, both faithful followers of my blog, and two of only a handful or three of people I liked and respected at my job, were traveling together to QVC headquarters hoping to place a line of shoes Jackie designs, called Jax and Bard.

When the three of us gave each other a group hug, I told them that just yesterday I had seen messages from them both on social media and had looked them up to see their lovely faces. Jackie said, “there are no accidents” and I promptly stated my disbelief in such notions.

We had some time to kill before boarding, so they suggested we get Bloody Marys at the bar. It was just what I needed to unravel my worries over leaving behind Calvin and Michael to fend for themselves.

While boarding the plane, I glanced down at the small pink and green floral kerchief I tied to my luggage so it can be easily identified, a Liberty Print square with scalloped crocheted edges that Lynette had brought back to me from London over fourteen years ago. I’ve used it to flag my luggage all these years in-between. The words, there are no accidents ran through my brain as a twinge of nostalgia pricked my skin.

On the flight south we sat together in the last row, caught up and reminisced. They told me that often my blog brings them to tears; I told them how much their loyal readership means to me. We traded war stories of our employment, asked after former colleagues, and fawned over Jackie's shoe designs.

I made it to DC safely and called home to check on my boys. Calvin was happy splashing in the bathtub and Michael seemed just fine. And, yes, I am as crazy as I look in this photo, especially when I'm about to be citified.

Selfie by Jackie Lindstedt

tinkering

This month has already been a terrible one for Calvin, mostly in terms of seizures rather than behavior. I'm trying not to sink back into despair after having enjoyed a pretty good September and October which I had hoped meant the beginning of better days for my son.

After yesterday morning's grand mal seizure, the sixth one in just over two weeks—a number that I consider high for an entire month much less seventeen days—and having had seven partial complex seizures in the span of five days last week, I laid with Calvin in bed racking my brain about what I should do next.

The thought occurred to me that perhaps the CBD might be the culprit and that I should cast my net out to other parents on social media asking them if their children have experienced an increase in seizures with the addition of CBD. Scores of parents confirmed my hunch.

So, yesterday we halved Calvin's CBD oil. He slept well last night and did not have any partial seizures this morning. After I put him on the bus, I took out my calendars and, starting with 2014 when I first began giving Calvin a homemade THCA oil and, two months later, started his benzodiazepine wean, I charted his grand mal and partial complex seizures. I saw what I had not seen before: what looked like a pretty clear correlation between beginning a CBD oil (seven months after the advent of THCA) and the re-emergence of partial complex seizures which had been virtually absent for years. At the time, I had introduced the CBD because of a fearful uptick in grand mals, and I remember thinking that the partial seizures and spates of status epilepticus were due to the benzodiazepine withdrawal.

There is no way of knowing for sure, but it will be interesting to see if my tinkering—this decrease in CBD oil, perhaps its eventual elimination—will result in the lessening or disappearance of Calvin's complex partial seizures. Cross your fingers and knock on wood that things get better and don't go all to hell.

Photo by Phoebe Parker

some things stay the same

Hard to imagine this video was taken almost six years ago; some things change and some things stay the same.

This was pretty much what my day looked like today, minus the safety harness Calvin is wearing, minus the husband by my side, minus Rudy The Dog, minus the levity on that particular day. Calvin still insists on his quest to stare at the low southern sun; it is the bane of my existence, causing me to spend all of my time trying to eclipse its existence to the degree that my lone shadow can.

But after I screamed at the top of my lungs for him to stop, I impatiently loaded him into the car and took him to the gelato shop. There, he was compliant and seemed to love the frozen, minty-chocolate treat, then walked two blocks on downtown streets in near freezing temps without balking even once. Later, Calvin was content in the car on the drive to Michael's studio, then waiting for him to put his motorcycle to bed for the winter and to siphon its gas into our car.

Tonight, the fire is roaring and it is meant to get into the teens. We have leftovers of a white bolognese over rigatoni, and Repo Man is cued up on the screen.

feeling defeated

Years ago I lost my religion. Had I not then, however, there's little doubt I'd have lost it raising a disabled child with a chronic condition as heinous as epilepsy—just one of the many things in life, besides starving children and war and genocide and massacres in churches, that proves to me there is no merciful God in the heavens.

At three-fifty this morning, Calvin suffered another grand mal, bringing his two-week total—not including complex partial seizures—to five after having enjoyed nearly an entire month having had only two. Michael is on his way home from Boston today, so I had to go it alone.

Before the seizure, I got up more than a handful of times to lay Calvin back down in his bed and give him some of my homemade THCA tincture aiming to thwart a somewhat-anticipated seizure. I awoke later to the blood-curdling shriek that usually announces the ordeal. I made sure his head, hands and feet weren't smacking the bed. I yanked off his socks and rubbed frankincense on the soles of his feet. When it was over, I gave him some THC. Then I gave him his benzodiazepine early. I chased them both with syringes of water. I changed a soaking diaper. I got in next to him. He fell asleep. He woke minutes later having wet himself and his bed. I changed him again. Every few minutes he kept sitting up, banging the bed, working his fingers in a frenzy in front of his face, his heart beating furiously in his chest.

He's sitting in front of me now and I hardly recognize him, the way he juts his jaw, purses his lips and clenches his teeth creating a phantom dimple on the side of his cheek that I only see in the hours before a seizure. He's fingering like mad. I feel bad for him and yet irritated and slightly repulsed.

I wonder how I can keep this up. Keep following him around the house. Keep running for him and lunging to prevent him from a fall whenever he gets into a stand. Keep thwarting his eye-poking and sun-staring and shirt-biting and head-banging. Keep changing his diapers and hearing his shrieks and chopping his food and wiping his drool and mopping his juice and laying him down and picking him up and holding his hand and giving him supps and watching him seize and never getting enough sleep, never able to finish any endeavor.

I wrote to Michael this morning telling him what happened. I told him I was feeling defeated. No doubt he feels helpless. All I want to do is go back to sleep.

Photo by Michael Kolster

full moon fit

Last night, when the full moon was at its peak in the sky, I watched my son while his father held him as he seized. It was an unusual time for Calvin to have a grand mal, and had Michael and I not stopped giggling in bed, we might not have heard it at all. At first I thought the sound was Nellie licking herself, but when we quieted I recognized the rhythmic smacking of Calvin's lips.

Unlike most nights, I hadn't fully expected this one; I was sure Calvin would make it to day ten without any seizures in between. He'd shown only a few of the harbingers that ring them in.

Still, nine days without any kind of seizure isn't a bad stint compared with at least half of Calvin's last eight months. But it isn't long enough to be sure that the new CBD oil we switched him to, the one with slightly more THC than the last one, is doing any further good. What I am interested in seeing is whether this new oil from Haleigh's Hope might help limit the partial complex seizures Calvin is prone to having in the hours and days after most of his grand mals.

What does seem somewhat clear is that the new concentrated THCA tincture I made a few weeks back does appear to thwart his grand mals to some extent. Typically, when Calvin has a grand mal before midnight, he almost always wakes later to a second one. This time, having given him doses of the tincture just after the seizure, then at 1:30 a.m. and again at 4:00 a.m., he did not have any more.

My boy is still not back to baseline, and the last time he had an evening grand mal he suffered two more the next morning. So we'll sit tight here at home today, giving him a tiny bit extra THCA, thankful that the moon has entered its waning stage.

Photo by Unknown