back in time

"Do you love me?" I ask from the far side of the butcher block, a question to which I know the answer, but which I ask periodically, just to be humored.

"Yes. More than anything in the world," he replies, as he looks at me with intent.

A bit incredulously, I follow with, "Even Calvin?"

"Yes," my husband answers, "but he's catching up."

The expression I give lets him know I wonder what he means.

"He's becoming more lovable," he says.

"Like when he was a baby," I add, "when he was feeling good ... he was all happy and lovable. It's the drugs that have fucked him up."

After a pause, I go on to say:

"Some doctors are assholes," thinking about the bad ones—the one who needlessly prescribed Calvin's first benzodiazepine and the ones who prescribed extremely high doses of too many drugs—sometimes several at once—that didn't work and that fucked him up, caused him to be and remain so impossibly restless.

Michael nods his head.

"I wish we could go back in time." I say, wishing I knew—and could have employed—then what I know now.

But I can only go there in my memories and dreams.

One-year-old Calvin, March, 2005

cocktails

When Michael is out of town, Matt leaves his wife and kids to come make me Manhattans and to keep me company. Lauren sometimes concocts pomegranate martinis while I sit at the bar in her kitchen. Dallas has been known to craft all sorts of delicious cocktails to imbibe at his place or mine. Kevin will mix me anything I want, but if memory serves, he makes a killer gin and tonic. Tim brews up the best and sneakily spirituous margarita I think I've ever downed; watch out! Luke loves to pour me a Maker's. Lucretia mixes elderberry with spirits. Jens and Barbara almost never show up without a bottle of bubbly in hand. Back before the damn pandemic, when I'd visit New York, I'd go to Petrarca, Ivano's family's amazing Italian restaurant in Tribeca, and he'd mix me up an Aperol spritz for curbside slurping. I used to belly up to the bar with a girlfriend or two and order beet yuzu martinis, rusty cowboys or Rita Hayworths, all garnet-colored drinks with a tart or spicy kick for any season, but especially good for sipping in winter. At home, my go-to is red wine, especially Gigondas and Côtes du Rhône. I enjoy a tiny glass, sometimes two, on most nights before switching to water. Once in a blue moon, I'll sip a shot of bourbon on the rocks, though not as often since my pal Woody died summer before last. During the holidays, Michael makes his family's bourbon eggnog; anyone who has knocked one back will tell you it's killer.

In short, and though I think of myself as a moderate drinker, I love a good cocktail. Perhaps since I don't drink them often, there's something special and festive about them that makes me giddy, even before I drink them! Sounds ridiculous, I know. But as Calvin's mother, I have to delight in the little things or I might wither and die on the proverbial vine.

But there are cocktails I loathe, and I don't mean the alcoholic kind. I'm talking about what neurologists and other physicians have coined drug cocktails. It's the piling-on of more than one drug at a time to treat a condition and/or treat the side effects of the drugs used to treat a condition, and to treat the side effects of those drugs, and so on. It's sickening, and I'm far from convinced it's necessary in many cases.

When Calvin was first diagnosed with epilepsy when he was two, the first few drugs he tried were as monotherapies, that is, one drug at a time. When each inevitably failed him, his neurologist would switch it out for a new one. It wasn't long, however, before the neurologist began practicing polytherapy on my little guinea pig. Calvin was barely three years old when he was prescribed three powerful drugs—Lamictal, Zonegran and Klonopin—in attempt to thwart his stubborn seizures. I questioned the addition of the third drug, a benzodiazepine, to be used as a bridge drug until the Lamictal, which must be slowly titrated to avoid serious, sometimes lethal rashes, reached a therapeutic level. I wondered why Zonegran wasn't a sufficient bridge drug since it was up and running at a therapeutic level (determined in clinical trials) from the beginning. The neurologist, who I'll call Dr. Rx, told me the Klonopin was meant to be used for only a few weeks. A few weeks turned into eighteen months, and in that time Calvin developed serious complications, including increased seizures, from the drug and its subsequent withdrawal. The use of the benzodiazepine—a class of drugs prescribed cavalierly for anxiety, insomnia and seizures, and meant only for short-term use (mere weeks because of their tendency for habituation and addiction)—felt like a cover-your-ass maneuver and a seizure-control-at-any-cost tactic. In any case, these drug combos, which are sometimes made up of as many as eight or nine antiepileptic drugs all at the same time, are commonly called cocktails. Sickening.

Thankfully, with some gumption, patience, research and gut instincts, I've been able to wean Calvin off of all but one pharmaceutical, Keppra. And with as many as five to eight grand mals most months, it's clear the Keppra isn't really working, which is why I've been slowly weaning it, too.

Suffice to say, the only cocktails we want in this house are the pretty ones made by loved ones from spirits which sometimes make me giddy.

unthinkable

Tropical depression Henri didn't make landfall in Maine, but we had low barometric pressure and insane humidity anyway. It seems the full moon also helped tug Calvin's seizures into existence—he had one grand mal at nine p.m. on Sunday, and another at three the next morning.

Last night, after putting Calvin to bed, Michael and I ate barbecued salmon and sushi rice with spicy fish sauce while watching the last half of the film, Aliens. During one of many grisly scenes—at the very moment when an alien burst through the chest of its wide-eyed, terrified human host causing her to convulse—we heard our son shriek. It was his third grand mal in less than a day. We sprinted to his room where we found him tangled in his blanket, convulsing, his lips a dusky blue.

"I'm going to give him the Diastat," I told Michael, who expressed unease with my decision to employ the benzodiazepine because they can be so problematic.

But my brain and my gut said, do it!, so I grabbed the vial from the changing-table drawer, cracked off its plastic cap and squirted lube onto its tip. While Michael kept our boy safely on his side, I unsnapped the crotch of Calvin's onesie, ripped open and pulled aside his diaper, then carefully inserted the tip of the vial into his rectum, depressing its plunger slowly. My intent was not to stop the seizure which had already begun to subside, but to thwart a probable fourth, perhaps more devastating one, from occurring in the night.

The Diastat knocked Calvin out. Benzodiazepines like Diastat, aka rectal Valium, can cause respiratory suppression, and since SUDEP (Sudden Unexpected Death in Epilepsy) is thought to occur within twenty minutes after a grand mal, I wanted to monitor him for awhile. So I brought our unfinished meals and glasses of wine into Calvin's room, plus a chair for Michael. With my plate in my lap, I sat on top of the changing table where I could easily see Calvin's chest rise and fall. Holding vigil, we ate the rest of our dinner in the dim light of the small room grieving the impossibility of our child and his sorry lot in life.

As we munched our salads, Michael expressed regret about Calvin's unthinkable limbo: he can walk, but can't—or won't—walk well enough to stroll any distance down the street, in the woods, or at the beach, and yet he cannot sit still; he can see, but we can't know what or how well; he can manage finger foods, but cannot use a spoon; he can swallow, but sometimes chokes on food and drink; he is having some success sitting on the toilet, but he still has to wear diapers and can't poop without the use of suppositories; he cannot speak, so sometimes it's near impossible knowing what he might need, understand, feel, suffer or think; he's right there, but so often he's out of reach. In short, he's an unthinkable enigma.

Finishing our dinner, we discussed the paperwork we have to complete and submit to probate court in order to be granted guardianship of Calvin when he turns eighteen in February. Yes, even though we are his parents, we must apply to become his legal stewards since he can't make decisions for himself. One assurance we've been asked to give is that we will continue to provide Calvin with activities he enjoys. As if his suffering from seizures and/or drug side effects isn't regrettable enough, the list of things that give Calvin joy is extremely limited; he likes hugging, baths, music, car rides, swings, sweets, and a few baby toys. He doesn't have friends. He can't do sports. He doesn't know how to play with trucks or dolls or games or Legos. He can't run or ride a bike or play catch or swim in pools, lakes, rivers or seas. He doesn't watch movies or cartoons. He can't walk the dog. He can't write or read or camp or bake or fish or hike. He is capable of doing just enough to avoid being confined to a wheelchair or to a bed in a room, but he can't do most of the things that make most kids feel happy or truly free.

This enigmatic and beloved child of ours lives in a limbo alien to most, one he'll likely endure his entire life. Oh, how I wish him to be free of his unknowable, unthinkable miseries.

rescue mode

At noon yesterday I was on the phone with my sister-mama after having finally gotten Calvin downstairs. He was recovering from the morning's back-to-back seizures—two of three grand mals in the space of just two days. She had read about our troubles—Calvin's seizures and my tweaked back—in my morning blog post and had called to check in on me. As we chatted, Calvin seemed at peace in his jumper, a place of comfort for a boy who suffers from an antiepileptic-induced movement disorder; the kid can't sit still even if he wanted to. My best guess is that he wants to.

While refilling Calvin's sippy-cup, I looked over my shoulder to see him slumped in his jumper, his dangling hands and face red as beets. Rushing to him, I called out his name, asking in vain if he was okay.

"He's having a seizure!" I yelled into the kitchen where I'd dropped the phone on the butcher block. "Grand mal!" I added, before I heard my friend quickly and compassionately end the call.

The first part of a grand mal, aka tonic-clonic, is the phase where the body contracts and stiffens as if in active rigor mortis. There was no way I was going to be able to pry my boy out of his rig, his body like a clam closing its shell. Instead, I pulled a wooden chair up and under him and set him in my lap. Just then he went into the seizure's tonic phase; this is when the body convulses. To reduce the tension from the jumper in case its straps might hurt him, and to get him on his side to prevent him from aspirating on sputum, blood or vomit, I reclined some, lifting up my legs and planting my feet on the nearby partition. There, in my lap still strapped into his jumper, my five-foot tall, eighty-five pound son convulsed for more than a minute. 

When the fit was over, I slid his flaccid body out of its trappings, taking care not to knock his floppy head on the floor, then I untangled his feet from the crotch of the jumper. In the filtered light I could see his face and hands had become ashen. To stop the cluster of seizures from advancing—Calvin's history of bad clusters has led to hospitalization for stubborn seizures as long as 45 minutes—I grabbed a vial of Diastat (rectal Valium) that we keep inside a little bench Michael built. I popped off the plastic top, opened a packet of lube, squirted some on its tip, pulled down his pants, undid his diaper, inserted the tip of the vial, depressed its plunger which squeezed the gel right into him. Then, I changed his wet diaper, spread his fleece baby blanket under his body and folded a flannel one under his head as he drifted into benzodiazepine oblivion.

I called Michael to tell him what had happened. He was concerned, particularly considering that since we started Calvin on a homemade THCA cannabis oil seven years ago, Calvin virtually never has grand mals in the daytime anymore, especially if he is awake. What's worse is that I don't remember Calvin ever having three grand mals in less than twelve hours.

It's impossible to know the culprit that caused four grand mals in the space of two-and-a-half days. Neither of us is exposed to others who might pass on illness. Calvin has not had a vaccine yet. Could it be too much antiepileptic medication? Not enough? A growth spurt? Hormones? The "natural" progression of epilepsy? After seventeen days without a grand mal and fifteen days without any seizures, was he just pent up? Seizures beget seizures; as with all paths, well-worn ones in the brain are easier for seizures to take.

When Calvin awoke, I eventually managed to get him to the green couch with a little bit of feeble help from him. He spent the rest of the day and night recovering, and still is. I'm grateful if not amazed that my body was able to do what it did, considering I was practically paralyzed with back pain the night before and yesterday morning. I guess it goes to show what we can do when we're in rescue mode for our kids.

advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

seeing and breathing

the tick tock of clocks belies the passage of time. slow-motion video feels more real. i reconsider breathing—quick and shallow, deep and labored. I regard his hollow eyes and shiny lids and wonder if i am seeing things. he takes my hand. his is blue-veined, skin like tissue. i stroke his arm. rest my palm on his bald forehead. tell him that i love him. get him to crack a smile. if only i could hold him close one last time.

on long car rides i can sometimes flee grief and monotony. like a roller-coaster, even familiar hills and bends and vistas make me feel more alive, as if i'm actually going places instead of in circles. still, i'm grateful for the car and roads and time and space that take me away, even with the kid in tow. the point changes day to day. gray clouds stitched to hard waves become blue skies kissing land and sea. the view is one none of us will ever see again.

there's a scent in the air that i can't finger. witch hazel blossoms are long past. lilacs have gone to seed. fragrant azaleas have spent their lazy blooms. might it be honeysuckle? roses? peonies? not the sickly sweet that used to seep out of calvin's pores the day after getting rescue benzodiazepine. still, i've smelled something akin to that lately. again, i consider breathing. i consider N95 and covid-19.

the kid has been all right. happy, calm and smiling. four days seizure-free. he's eating well and growing like a weed. no bad side effects—yet—from the pharmaceutical cbd. if only he could make it past day thirteen. if only he could run and play and speak.

the cardinals lost their nest to predators it seems. could it have been the gray fox? i read they can climb trees. they're out there, predators. sometimes with feathers, fur, claws and fangs. at others, flabby-faced in suits and ties, uniforms, camouflage or riot gear. often they're incognito. they hurl their barbs and slurs, spray their gas and ammo, their conspiracy theories. hidden in their shade they undo modern policy, press their knees in the necks of the powerless struggling to breathe.

safe in the backseat my kid takes grapes and blueberries from me. he pulls off his shoe and chews it. yanks off his glasses and gnaws their temples and lenses. pulls off his sock and sucks it till it's sopping unless i can stop him. when setting out he almost always smiles. grimaces in the wind when the windows are down. cranes his neck to stare at the sun every time we turn south. i wonder what he knows of this world. if only i knew what he feels and sees.

i make another bedside visit. this time his house is quiet. no humming of the oxygen machine. i close my eyes with him. listen to him breathe. i tell him it is sunny and mild. a great day for gardening and porch-sitting while sipping bourbon and watching folks and cars sail off down the street. i tell him again that i love him. i tell him not to hold onto this world for me.

Simpson's Point, Maine

trying epidiolex

Sunday morning, after a second restless night filled with what I believe were focal seizures, we gave Calvin his first dose of Epidiolex, a plant-based pharmaceutical version of the popular cannabis constituent, cannabidiol, aka CBD. We've had the bottle containing a minuscule amount of the drug, which is in oil form, for about a month, waiting for the moment when I felt right about giving it to Calvin.

I began reading about Epidiolex nearly five years ago when its clinical trials began. Because of social media and the network of parents—mostly mothers—of children afflicted with epilepsy, I knew about the drug trial before Calvin's neurologist did. There was an ongoing trial at Massachusetts General Hospital, but Calvin wasn't having enough seizures to qualify and participate.

Shortly after the drug was approved in June of 2018, I began following a Facebook Epidiolex group. My sense is that, not unlike other CBD oils, many patients seem to do better on lower doses of the drug and have fewer dose-related side effects such as diarrhea, agitation, insomnia and loss of appetite. I've also seen documentation showing that some doctors are having success starting their patients on a fraction of the recommended starting dose of five milligrams per kilogram of the patient's weight. On the whole, however, it's a mixed bag; some children have become seizure free on Epidiolex while others have seen their seizures exacerbated, albeit on higher doses of the drug, which is not unlike other pharmaceuticals.

Calvin's first experience with medical cannabis was in early 2014. I had been researching its use in treating seizures for about a year, after a lifetime total of ten antiepileptic drugs had failed him. The learning curve was steep; I knew of only two other parents treating their children's seizures with the herb. Both were using CBD. Paige Figi, whose daughter Charlotte died recently, was one of them. At the time, Maine did not have any high-CBD cannabis strains with which to make an oil. Connections on Facebook led me to a guy in Sacramento named Dave who was making a cannabis oil using one of its other non-psychoactive constituents, THCA (tetrahydrocannabinolic acid.) Blindly, I set out in search of a strain that might help reduce Calvin's seizures while not making him too wired or too sedated like the pharmaceuticals had done. I spoke with several local dispensaries and individual caregiver growers. I met some of them in my home. Eventually, I decided that a high-THCA hybrid—part indica (sedating) and part sativa (stimulating)—might be best. I was able to procure some flower from a local dispensary, and Dave from Sacramento held my hand through the process of making a THCA oil using his recipe, which employs a cold process meant to avoid altering the non-psychoactive THCA into psychoactive THC.

Prior to giving Calvin my homemade THCA oil in February of 2014, he had been having grand mals every week or two during the day, usually when he was in the bath. After reaching a therapeutic dose of the oil, Calvin had no daytime grand mals for five-hundred days. Since then, he has had only a handful or two of grand mals during the day, greatly reducing my anxiety and his risk of getting hurt. Calvin also began sleeping better and his behavior improved.

During Calvin's first four years on THCA we were also weaning him from the benzodiazepine, Onfi. As we slowly lowered the benzodiazepine, Calvin's seizures, not surprisingly, increased. Sometimes he had more than a dozen per month, including focal ones. We tried a homemade CBD oil followed by a branded one, but they only seemed to exacerbate his focal seizures. Finally, in June of 2018, we started him on Palmetto Harmony CBD, which uses a different extraction method than the other ones we had tried. On a daily dose of about 25 milligrams, Calvin went forty days without a grand mal. After the breakthrough seizure, however, we struggled to regain that same kind of seizure control, eventually increasing the Palmetto Harmony to 145 milligrams in that effort. Sadly, Calvin's focal seizures also increased. When we cut the dose in half he did far better, but was still having too many seizures. So, in anticipation of trying Epidiolex, we gave Calvin his last dose of Palmetto Harmony in February of this year.

Since then, we have had some luck managing Calvin's seizures with higher doses of my homemade THCA oil; he has had only two or three grand mals in each of these last couple of months. But a recent flare-up of focal seizures, which had virtually disappeared back in late November, compelled me to finally start Calvin on the Epidiolex.

Having observed over years that smaller doses of CBD seem to work better for Calvin and other children, I was able to get his neurologist's buy-in (not that I needed it) to start Calvin on a fraction of Epidiolex's recommended starting dose of five milligrams per kilogram. Instead, Calvin started on just over half a milligram per kilogram of his weight, for a total of twenty milligrams per day instead of 174 milligrams per day. Having seen firsthand how well Calvin did on Palmetto Harmony CBD at a similar dose gives me hope.

So far so good. Calvin has been in a decent mood and his sleep patterns have not really changed, but it is only day three, so cross your fingers and knock on wood.

Calvin coming out of a seizure, August 2014

invisible giant

Walking Calvin around the block yesterday felt like dragging a stubborn dog. He'd start and stop, swerve and hitch, sometimes weaving behind me even as I held onto his wrist. At one point he pivoted and fell onto his back at the edge of the sidewalk. Since my right hand had Smellie by the collar, I wasn't able to prevent his fall. Still, I was able to let him down slowly so he didn't hurt himself. Then, he wouldn't budge, so I had to lift him back up. I became frustrated, let Smellie go (she's such a good dog) and yanked my careening kid the rest of the way home.

Thankfully, the remainder of the day was mellow, consisting of a nice car ride and lots of cuddling. While putting on Calvin's nighttime diaper I asked him if he was tired, and he made a little hum. He fell asleep as soon as his head hit the pillow.

After sleeping soundly, Calvin aroused at eleven p.m. in the thralls of a focal seizure, wide-eyed, restless and trembling terribly. I dripped some THCA cannabis oil into his mouth and held his head so the oil had time to absorb and so he wouldn't drool it out. I took his temperature, changed a soaking diaper, then crawled into bed with him. Three hours later this repeated, and a third time an hour after that. At four-thirty I gave him his morning Keppra hoping to avoid more fits, but the strategy didn't work and at five o'clock he had the worst focal seizure yet. As I was reaching to turn on the light, Calvin, in the middle of the seizure, began to sit up, put his hand on the side of the bed, slipped and fell out. I halfway caught him, softening his fall but not before his lip caught the sharp corner of the wooden step stool. Michael helped me pick him up and put him onto the changing table where I syringed in his morning cannabis oil, noting a lip that was bleeding and beginning to swell. The seizure began to worsen. His tremors became so violent he looked as if he were a rag doll being shaken by an invisible giant. Something akin to fear filled his eyes as he kicked the arm of the lamp clamped to the end of his changing table. I put my arms around his neck and held him closely until his trembling ebbed then quit.

When it was over, I crawled back into bed with him, lamenting so many seizures amid what had been shaping up to be another good month. Stroking Calvin's face in search of possible fever, my thoughts drifted to the little girl so much like Calvin who died last week from likely complications of the coronavirus. Her name was Charlotte Figi. She was thirteen years old and, without knowing it, had become the face of CBD oil as therapy for epilepsy. Her mother, Paige, had been my mentor of sorts—one of only two parents I knew of who were treating their children's seizures with cannabis. She had suggested different strains of the herb with which I could make my own oil (this was years before it could be ordered online and shipped) and she walked me through how to safely wean Calvin's benzodiazepine. As I embraced my son, I wondered what this dutiful and loving mother, this pioneer and champion for so many, was feeling. I wondered when she might begin to feel relief from the loss of such an extraordinary child who filled so much space with her brightness. I wondered if she felt any modicum of solace in knowing that the invisible giant which is epilepsy no longer haunts and harms her daughter. I wondered if, one way or another, Calvin and I will ever feel that same peace.

Photo by Michael Kolster

indifferent nature

I'm not one for praying, nor am I looking for answers as to why the world exists. I don't need evidence that there is life, intelligent or otherwise, on other planets. If I look to statistics and consider the magnitude of the universe, I already know the answer, which is yes. Though I lament life's miseries, I don't wonder why there is suffering in the world. Mankind can be cruel. Nature is indifferent. I only wonder, when reckless and despotic leaders war, oppress, starve and shell civilians, why others allow them to continue. But I guess I know the answer to that, too: power, money, conceit, control. I wonder why mutli-millionaires and billionaires aren't more charitable with the absurd profits they make on the backs of those who actually do the labor. Instead, they pocket those profits and too often pay starvation wages. These are the things I think about on days like this.

Last night at nine, Calvin had his third grand mal seizure in less than twenty-four hours. To stop the cluster I gave him Diastat—rectal Valium. It was the first time I had used it in months if not years. It has seemed to stop the seizures from advancing, but the real test will be whether he has more tonight. I don't know if Calvin is ill or if he is simply outgrowing his medication, or whether this worsening of clusters is an effect of eliminating his CBD oil recently. Like world torments, I don't question why my son suffers, at least not philosophically. As I said, nature is indifferent. But I would like to know the root of his weekly seizures, and I'll continue to search for ways to beat them into submission.

My thought this morning was to more seriously consider giving him the plant-based pharmaceutical CBD called Epidiolex. I've been following a Facebook page about the drug for months, noting its trends and side effects. It may be a last hope for Calvin considering he has failed ten anti-epileptic drugs. If we do decide to move forward with it, I'll likely put him on a fraction of the recommended starting dose. What I've noticed about CBD is that sometimes giving less is more effective and, like all drugs, too much can cause unwanted side effects including increased seizures.

Today my boy has been waking only for moments throughout the day, recovering from the assaults on his brain, and sleeping off the benzodiazepine. Though he is in a decent mood and seemingly content, I feel sorry for him. I've watched him seize thousands of times in his life. He sometimes turns gray-blue, bites his tongue and cheek till they bleed, may sometimes have vicious migraines and often appears woefully unsettled. Watching him suffer is punishing for me. Some folks believe that God punishes people who've sinned by doing things like "taking" their newborn babies, or rendering their children with afflictions, or causing natural disasters in liberal states, or allowing mass shootings in gay nightclubs. That is such bunk. The notion is so offensive, and I wonder how anyone could or would want to believe in a god that would behave that way.

Today, Calvin's buddy Mary came to watch him for a couple of hours in Michael's absence, so I was able to get outside with Smellie. The warmth of the sun offered respite amid a bitter thirty degrees. Some of the snow is melted and buds are beginning to swell on certain trees. I baked some chewy-crispy chocolate chip cookies for my friend who is now receiving Hospice care, though doing pretty well considering. In the garden, the greens of the Alberta spruce and the reds and purples of the small-leaf rhododendrons are gems right now. I wonder if we'll have an early spring. I'm hoping so. But you won't find me praying for it, because nature is indifferent. That's just the way She rolls.

visible differences

When I got up last night to check on Calvin around eleven, I looked out the window and saw Orion low in the sky, his toe touching the tops of the trees in my friend Woody's yard. I used to toy with envisioning Orion, a mythological Greek hunter with a shield and sword, as a protector of children like Calvin. But those kinds of imaginations are inventions with no agency. Now I see Orion for what it is: a beautiful and familiar constellation in a vast, enigmatic, indifferent yet magnificent universe.

Shortly after I fell back to sleep I heard Calvin shriek. I got to him quickly as I could and held him as he seized. When it was over, I gave him some extra homemade THCA cannabis oil, syringing it bit by bit into the inside pocket of his cheek so he wouldn't choke. Then, I crawled into bed with him. His heart was pounding so hard it felt like it was bulging between his ribs. Thankfully, within twenty minutes it had calmed, and he slept peacefully.

I laid awake for awhile, feeling him breathing. I thought about all that has changed in the past year or so. Calvin doesn't rouse in a panic in the wake of his grand mals anymore. He used to regularly spring up about thirty minutes after his fits and spend the next several hours perseverating—hyperventilating, finger snapping, humming, pressing his eyes and incessantly patting his bed—all the while his heart racing. Now, he rarely, if ever, does any of it.

And there are other visible differences in my kid. He hasn't had a focal seizure since the end of November, but he's had more back-to-back grand mals of late. His behavior—on less Keppra, and two-plus years having passed since his last dose of benzodiazepine—is way better. He's calmer, more focused, cuddlier, more compliant. He goes to bed a bit faster on most nights and sleeps better, generally. He can get into the car nearly by himself now. He's staying at the table more patiently when fed. More often, he sits in our laps longer, and sometimes lets us read to him.

After awhile, I got back into my own bed and fell asleep again. A few hours later, however, and despite the extra THCA oil that I'd given him, Calvin had a second grand mal. Again, I held him as he seized and slept with him when it was over. At four o'clock he arose, sat up and wouldn't settle. Non-verbal, my kid is as enigmatic as the universe. So as an experiment, I asked him if he had a wet diaper. He was silent, but rubbed the side of his head. I asked him a second time and waited for a response. Again, he rubbed his head. Then I asked him if his head hurt, and he went, "Unn," so I gave him an ibuprofen and a few gulps of water from his sippy-cup, plus his morning Keppra, with the hope of preventing a third seizure. From then on he slept.

I used the bathroom one more time before retiring to my bed. When I looked out the window the sky was visibly different. Orion appeared much smaller and had sunk halfway into the horizon. In its place was another constellation, unfamiliar to me, though bright and bold and beautiful, and just as magnificent and indifferent.

Photo by P-M Heden

double whammy

Blame last night's double whammy on the arc of the full moon. Blame it on a low-grade fever or virus. Blame it on sleep deprivation or anxiety, the barometric pressure or gravity. Blame it on a lack of fluids, a dip in blood sugar, pressure or O2. Blame it on the protracted effects of benzodiazepines which should have never been prescribed for my three-year-old. Blame it on the weight of the world, the scourge of hateful rhetoric, the insanity of deceit and greed, the power of willful ignorance, the threat of war. Blame it on injustice. Blame it on the patriarchy. Blame it on the pharmaceutical industry. Blame it on the superficial solace of the stock market. Blame it on yesterday's regrettable IEP. Blame it on the vacuum of Daddy's absence. Blame it on the warm front coming, and being trapped indoors. Blame it on his brain's messed-up pathways. Blame it on growth spurts and raging hormones. Blame it on the vile nature of epilepsy. Blame last night's two grand mals on anything and everything.

Calvin's grand mal seizure from eight years ago; some things regrettably never change.

             

seizures and dreams

Last night in the wake of my son's seizure, while spooning him, I dream.

I'm in a small room in a strange, sparsely furnished house with a dozen others, none of whom I know. It's just after twilight, an indigo sky crowning a nearby mountaintop. Suddenly, the lights go out. Somewhere, whether in my head or from some eerie broadcast, a man's voice booms that everything is going to come down. It's clear the others hear the ominous message too; I see them scrambling about nervously. Then comes a low rumbling, one which I feel deep in my bones. Is it an avalanche? An earthquake? An explosion? Peering out a nearby window I notice that all of the homes nestled closely together into the mountainside are darkened too. I sit and fret, wondering if a tree will crash through the roof and crush me. I imagine the ceiling caving in, the earth swallowing us whole. I'm held captive awaiting my demise, only to wake to the sound of my son rustling under his covers. It's not yet dawn, and I hear the lonely rumble of passing snowplows, feel the house quake as the plows clear fresh snow from streets which are yet desolate.

With the exception of the unexpected seizure, all is well. Compared with years past, Calvin sleeps well after his grand mals and does not go on to have subsequent ones. No longer does he stay up for hours wired as if in a panic, his heart pounding, his fingers madly knitting. My guess is he is nearing full freedom from some of the effects of benzodiazepines and their withdrawal. Perhaps he is also benefiting from a much lower dose of Keppra than ever before. Maybe my latest batch of THCA cannabis oil is responsible for his recent, relatively low seizure count—only four grand mals this month and zero focal seizures so far—which is less than half his average monthly total.

As I drift back to sleep with surprisingly little worry about my boy, outside, tiny white flakes fall in windless conditions. Though the sun is far from rising, the sky is grey-white. The sleeping world is dark and still and quiet, save the rumbling of passing snowplows.

day fourteen

Just a quick note to tell you, dear readers, that Calvin has been seizure-free for two weeks. This, on the heels of an increased dose of a homemade THCA oil, has been one of his best stints in five years; he's had only three grand mals and two focal seizures in the last thirty days.

When choosing from two strains of cannabis before making my last batch of THCA oil, I opted for the one whose parent is Chemdog, the strain I used to make Calvin's oil for five years until it became unavailable. Chemdog rendered Calvin's daytime grand mal seizures virtually non-existent, relegating them almost exclusively to the nighttime, and keeping them in relative check during a difficult and protracted benzodiazepine wean. My hope is that this offspring of Chemdog, called Crescendo, will be even more effective.

It is difficult to describe how liberating it feels to look at a calendar page free of orange and blue highlighter and black Sharpie circles indicating seizures. It has been my wish that Calvin might somehow outgrow his epilepsy. My backup wish is for him to be free from seizures and side effects, to find a treatment which stops his seizures without causing him pain, discomfort or emotional and psychological strain. Epilepsy is a moving target, so I don't know if I have found the solution. But at least I can celebrate a small triumph, and hope for more in the coming days.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

spooning

This morning at three-forty-five I crawled in bed with our son Calvin for the umpteenth time in his fifteen years on this earth. He had suffered a tonic-clonic (grand mal), and when it was over I slipped into the small space between him and the back panel of his safety bed. There we spooned, my hand resting on his ribs feeling the rise and fall of his chest, his knees tucked up in fetal position. I stay awake as long as I can to ensure he doesn't stop breathing and die from SUDEP (sudden unexplained death in epilepsy). His risk of dying from SUDEP is greater than 1 in 1000 in any given year because of the nature of his seizures (uncontrolled tonic-clonic) and cognitive impairment.

Our first time spooning was when he was breech in utero, before I'd ever met him, before the dreadful sonogram revealing his brain's enlarged lateral ventricles and substantial lack of white matter, before the emergency cesarean, before the subsequent seven-week stay in the hospital. I'd rest my palm on my gravid belly on top of a bulge I was certain was his little head. Since then, when he sleeps with us, he loves to touch and press heads, and will pull us toward him, his hands around our necks.

When he was an infant and toddler, we'd regularly nap together. He'd curl up into me like a little bird in a nest. He used to be so calm, but since having to take antiepileptic medicines—particularly benzodiazepines—his body has a hard time quieting; he is so very restless. Still, at times, usually when he is sick, he settles enough to nap next to me or in my lap.

I've spooned with him in the hospital after ten-, twenty-, forty-five-minute seizures. I've spooned with him on the floor, on the couch, in his and our bed. Tiny for his age, he's getting bigger fast, but he still loves sitting in our laps for a spell, embracing us, clinging to us in bed.

2007

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

innocent abuses

It has probably not been more evident than this weekend that our fifteen-year-old son, Calvin, is still suffering the side effects of the benzodiazepines he began taking at the age of three, and that he has been off of for over a year. What is clear is that Calvin cannot sit still for more than a few seconds or minutes at a time, except when sleeping. What is unclear is whether it is a case of akasthisia, psychomotor agitation, mania or some other condition or combination of conditions and whether it might also be due, in part, to his Keppra. In any case, all day long Calvin paces, pats, bites, writhes and flails.

This weekend, while on flights to and from Florida to celebrate Michael's mom's eightieth surprise birthday (more on that later), we were held captive to Calvin's innocent abuses. In short, he destroyed us—batting us in the face with his flailing arms and fists, tearing at my brittle hair with his sometimes clammy hands, shrieking at times for unknown reasons, grabbing around our necks every few seconds for hours while we were confined to sitting on either side of him. It is hard to be on the receiving end of this kind of relentless manic behavior from a kid approaching my height, but I cannot imagine the suffering he must endure from this violent restlessness that has plagued him for years.

Last week, our local NPR station aired a call-in show on benzodiazepines. Its producer, an acquaintance of mine, suggested I contribute; I was grateful to be its first caller and to share our experience. If you are taking benzos—even if just periodically—or thinking of taking them, I recommend you listen to the show.

This weekend, I was reminded of how deleterious benzodiazepines like Klonopin, Clobazam, Valium, Ativan and Xanax can be on the developing mind, the adult mind, the aging mind. Benzos like Xanax can become addictive after only a few doses. What's worse is that they often have paradoxical side effects and worsening of the very symptoms the medications are meant to treat, particularly when their efficacy wears off, as they tend to do. 

When taken for anxiety, insomnia and seizures, those conditions can quickly worsen when benzo dependency kicks in, causing many patients to increase their dose in order to recapture the desired effects. This can become a viscious cycle. Regrettably, by the time folks witness and understand the dichotomy and unsustainable nature of benzos, they may find themselves at high doses of the drugs that are nearly impossible to discontinue*.

From Wikipedia:

Long-term worsening of psychiatric symptoms (of benzodiazepine use)

While benzodiazepines may have short-term benefits for anxiety, sleep and agitation in some patients, long-term (i.e., greater than 2–4 weeks) use can result in a worsening of the very symptoms the medications are meant to treat. Potential explanations include exacerbating cognitive problems that are already common in anxiety disorders, causing or worsening depression and suicidality, disrupting sleep architecture by inhibiting deep-stage sleep, withdrawal symptoms or rebound symptoms in-between doses mimicking or exacerbating underlying anxiety or sleep disorders.

I should note that some folks, who don't seem to experience these side effects, swear by benzos.

Sadly, what I think has happened to Calvin is that his developing brain was forever altered by benzodiazepines. He was not a hyperactive child before taking them. I fear he'll never be calm again, forever restless and forever subjecting us to his innocent abuses.

*For help discontinuing benzodiazepines, please refer to The Ashton Manual.

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

beside ourselves

As sure as the new moon's looming arrival, I sensed my son's impending grand mal. Yesterday, my boy and I were both beside ourselves—he agitated and wired and I, as a result, flustered, anxious and distraught—trapped in a vicious cycle of his disturbing behaviors begetting my tension, perhaps begetting his stress and perhaps begetting a seizure. But who knows? Maybe this is just how this effing epilepsy rolls.

Nevertheless, I try to put my best effort into remaining hopeful that we can find a therapeutic sweet spot of CBD that eases Calvin's seizures. So far, the Palmetto Harmony seems to have done a decent job of quelling Calvin's partial complex seizures and, for a time, I was sure it was reducing his grand mals. But three grand mals in a span of thirty days between mid December and mid January has since doubled back to his previous average. No doubt, the uptick is depressing.

Amid this constant doubt and worry, I try consoling myself, knowing that his grand mals are self-limiting, that the convulsions don't last more than ninety seconds. Nonetheless, they are distressing. I try to console myself knowing that his overall number of annual seizures is gradually decreasing, in spite of the fact he is no longer on the benzodiazepine and is taking far less of my homemade THCA oil. I try to console myself by remembering how utterly unhinged Calvin used to be on high doses of three antiepileptic drugs several years ago. Granted, he suffered a fraction of his current number of seizures back then, but his behavior was unbearable for us—then, far harder than the seizures—and I cannot imagine he felt very good. We'd see him regularly crawling out of his skin, virtually without respite.

I try to console myself by the mere fact that we did not have to cancel a gathering of some of our favorite people to salute Calvin's upcoming birthday. Despite Calvin's downward spiral yesterday—and owing to our son's wonderful caregivers—Michael and I cleaned house and put out a modest spread, gussied up, cranked the disco, rock and funk, and stayed up late chatting, laughing, snacking, drinking and dancing. Letting loose with beloveds proves to be one of life's best elixirs for casting out the mean blues and reds. Within minutes, I de-stressed.

Just before five a.m., however, after far too little sleep, Calvin seized. Michael dabbed the blood trickling from between our boy's lips. I gave the little guy his CBD oil then crawled in his bed and held him close to me. He quickly fell back to sleep. An hour later he woke up agitated as he often does in the wake of a grand mal—eye poking, "ooh-oohing," sun-staring, tossing, banging, restless beyond measure. Too soon, I lament, to be beside ourselves again.