weekend update

At 3:30 this morning, Calvin had his first seizure in three weeks. Since beginning the drug, Xcopri, in November of 2021, he has been enjoying "longer" stints, including one seizure-free span of forty-five days. We haven't seen any focal seizures for over a year. So, despite a trip to the emergency room last April when he broke his hip at school, then having to undergo surgery to install three metal screws to fix it, and despite another trip to the emergency room on New Year's Eve for an excruciating case of cholelithiasis (gallstones), plus gastroenteritis and aspiration pneumonia, Calvin looks to be heading for his best seizure control in years.

As far as the gallstones go, Calvin had an endoscopic retrograde cholangiopancreatography (ERCP) procedure at the hospital on March 1st. After waiting for three hours in a type of holding cell, he again went under general anesthesia. The procedure, which involves the insertion of a scope into his esophagus, went fine, though the physician did not find the gallstone that was allegedly stuck in his common bile duct. Instead, what the doc found was "sludge"—bits of stones and/or fat, perhaps—which he cleared out. He also widened the sphincter where Calvin's common bile duct enters the duodenum, so that future stones can pass more easily into the intestine and are less likely to block the pancreatic duct, which can result in serious, sometimes lethal, consequences.

So, I guess one could say that the ERCP was successful. Calvin is eating well again and thankfully has not exhibited the kind of pain we saw him experience in December and January.

So, that's the update, folks, except to add that hopefully Calvin's seizure this morning will turn out to be a one-off.

Thank you for your thoughtfulness and well wishes. As always, they mean the world.

Calvin waiting patiently to be prepped for the ERCP

real tyranny

Yesterday, while walking in the falling snow, which overnight had made an oppressive, black and white world from one which had been so sunny, colorful and springlike, my thoughts turned again to Ukraine. I imagined its beleaguered people trying to flee their besieged cities and towns. I imagined them bundled up for winter, having taken what essentials they could from home for who knows how long. I imagined some of them walking aimlessly in the streets and subways not knowing what to do or where to go. I imagined what it would be like for them to see and hear and feel and smell the scorched and bloody reality of invasion, war and tyranny, to worry about their futures and fear their possible demise.

Of course, that is all I could do: imagine. And then I listened to a man—a doctor and chief of the NICU in Dnipro Regional Children's Hospital in Ukraine—recount to a journalist his decision on whether to flee. He said:

My family didn't want to leave Ukraine, because we love Ukraine, and we wanted to live here happy and in peace and so on. So, I said, okay, maybe everything will be not so bad. Let's wait.

So, my main question for myself is if I made the very, very big mistake not to move from Ukraine when I had an opportunity to do this.

Either [staying] was a big mistake or not so big, and I have no answer.

I can ask you: Do you want to wake up in the morning and understand you should go—forever. Not for one day, not for two days. Forever. Can you make such a decision in, uh—I don't know—in ten minutes? My question to you. To bring just a bit of water, just a bit of food, single clothes, documents, money, and go outside your home forever. Can you make such a decision? Just imagine.

When I heard this man describe his impossible decision—while imagining what might now happen to him and his family having not fled their home while they still had the chance, while imagining what Putin and his troops would do to squash the freedoms of its neighbor, the sovereign nation of Ukraine—I was regrettably reminded of certain Americans here at home.

I recalled the sign in the deli window down the street which read, "Mandate Freedom"; though I get the gist, I wonder for whom that so-called freedom is meant to be? For chronically ill kids like Calvin? For the elderly, the immune compromised, the infirm? I wonder if the sign's author considered this when he decided to post his message in such an overt way. I wonder if he ever questions his notion of freedom. I wonder if it matters to him that freedom to do as he pleases can translate into great risk, harm and cost to others. Are we free to drive on the left side of the road? Are we free to light up a cigarette or joint in a preschool, airplane or bus? Are we free to yell "fire" in a crowded theater? No. No. No.

I continued to ponder others who protest simple public health measures as examples of tyranny, such as the wise and reasonable use of wearing masks to protect the safety and well-being of all citizens during a rampant pandemic, and to avoid overwhelming and breaking hospitals. I thought about the hackneyed and misguided gripe, Don't Tread On Me, doubting that most who embrace such a claim fully understand what it means or feels like to be truly oppressed: to be barred from speaking your native language or practicing your native religion; to have your children systematically taken from you and given to someone else because of your race; to have your land stolen; to be interned by your own government because of your race; to be shut out of and shunned from public spaces, restaurants, bathrooms, lunch counters, schools, jobs, industries and elections because of the color of your skin; to have your history and identity whitewashed and concealed so as not to risk offending the self-righteous who fear their impending delegitimization; to be subject to the real tyranny of an autocrat who would stomp on your every basic human right and freedom—speech, assembly, movement, press, religion.

Amid these contemplations, I consider my son Calvin, who is in ways one of the least-free people I know. He has no speech with which to claim his desires, needs or beliefs. He has little to no control over his movements or whereabouts. He is confined to a body which gravely restrains him, and is oppressed by a brain that regularly seizes despite being awash in toxic drugs. He is relegated to a life of limitations, injustices and miseries. And yet, he holds the moral high ground over most anyone I know.

As the snow continues to fall, each flake swirling in a different direction but ultimately touching down, I hold my feverish, shivering, feeble child in my arms in the corner of the room on the green couch. Outside, the sky is still white and the trees appear blackish. I fear Calvin will have a repeat of last night's seizures; often, they come in hard-to-control clusters as if a barrage, his brain under siege. Then, my thoughts turn again to Ukrainians, and I try to imagine what it might be like to have to take up arms to fight for the right to live freely and democratically in one's own homeland. That is real tyranny.

Kyiv, Ukraine, in the wake of Russian shelling. Photo by Emilio Morenatti/Associated Press

can't help myself

Tuesday night at seven, while Michael and I were eating dinner, I heard Calvin yelp. He was seizing. Michael and I ran upstairs, unlatched Calvin's safety netting and bed panel and scooted him toward us so his feet wouldn't strike the bed's wooden edge. When it was over, we dimmed the lights and ate the rest of our dinner, plates in our laps, while sitting vigil as Calvin tried to catch his breath before drifting back to sleep. It had been ten days since his last couple of fits.

I'm not one to shy away from a challenge, but if I knew how hard this mothering thing could be, I'm not sure I'd have signed up. While raising Calvin, I've experienced joy, pride, and immeasurable love, but too often it really sucks. Parenting him has meant sacrificing—almost entirely—opportunity, dreams, travel, leisure, freedom, a good night's sleep. Many parents might share these sentiments. But what I thought of as the promises and joys of parenthood (you know what they are, and I've written about them ad nauseam) have been replaced by a lot of grief and anguish. Since Calvin's birth, I've watched him endure more suffering than any little brain and body should—an excruciating and unnecessary intubation, painful IVs, blood draws and surgeries, digestive distress, relentless seizures including a horrifying one that lasted forty-five minutes, vicious drug side effects, agonizing withdrawal. I've seen days upon weeks upon months upon years of what I think might be nausea, migraines, tinnitis, cramps, akatheisa (acute and chronic restlessness), panic, and perhaps even psychosis. Nearly every day—whether for moments or hours—he doesn't seem to feel very good.

While many of us, including me, learn to live with the hardships of life, in some ways adjusting, I'm not sure that is true for Calvin; it appears, judging by his frequent moaning, shrieking, head-rubbing, eye-poking and howling, that his miseries persist. It's hard to imagine feeling bad so often. What kind of life is that for any child to live? Witnessing it nearly kills me (and doesn't make me stronger.)

In mothering my legally blind, nonverbal, uncoordinated, incontinent, autistic, seizure-riddled son, I've become a hypervigilant helicopter mama, and I haven't managed to find any way around it. My son's afflictions require I be on guard at all times to limit his risk for trips and falls and broken bones, choking, drowning in the bath, epileptic fits. I'm laser-focused on trying to lessen his misery—from headaches, tummy aches, toothaches, anxiety, hunger, thirst, restlessness, constipation, discomfort, and cold. It's my job. If you think that's an impossible feat with a kid who can't express in words, signs or gestures what is troubling him, you're right. I can only do my best to constantly anticipate, observe and analyze. I must rely on logic, common sense, and instinct. How else can one care for a kid who is such an enigma? My brain is working on treatments, preventions and solutions for any given situation pretty much around the clock. I even dream about this shit, both literally and figuratively.

Reasonably, or so I believe, I ask and expect similar vigilance in others who take care of my son. Regrettably, however, my hypervigilance seems to lead me to micromanage. Though I don't mean to, I can come off as critical, which is sometimes met with defensiveness. I get it. Though my intentions are good and I try to be kind, I'm perhaps not the best messenger for my own messages, in part maybe due to my assertiveness and candor which—for whatever reason(s)—are often not appreciated, valued or understood. To make matters worse, in my hypervigilance I often vacillate, communicate too much information or not enough, causing others to second-guess for fear of making a mistake. They tell me they don't know what I want. Self-deprecatingly, I tell them no one does. Half the time I'm not even sure if what I recommend for Calvin is right; I often question myself. Just as the book What To Expect When You're Expecting proved utterly useless to me during and just after my pregnancy, there's no handbook for taking care of a kid like mine.

But one thing is for certain. There is a method to my madness: to keep my son as happy and feeling good as possible despite his circumstance. And in that way, perhaps it's a blessing and not a curse that I just can't help myself.

Photo by Michael Kolster

the kids are all right

It was the first rough night in awhile. Calvin was restless for hours before waking up around 1:00 a.m., then never went back to sleep. Michael tried sleeping with him. I gave him extra THCA cannabis oil, a few sips of water and a couple of ibuprofen. Michael changed a diaper. But our efforts proved futile, so—exhausted—we finally left Calvin alone in his safety bed with his toys, lights and music while we tried to get some shut-eye despite his banging and howling in the attached room. My guess is he is ramping up to a seizure, probably tonight.

Having said that, Calvin has had only three grand mals and one focal seizure in the past thirty-one days. That's the fewest number of monthly seizures in over a year, and the fewest number of days with seizures in a month's time. And though Calvin could easily have three or four seizures in the next day or two, I'll take it over having seven to nine grand mals plus a smattering of focal seizures in a month's time (though if he does have a bunch of seizures this weekend, you can be sure I'll be grieving.)

But if he enjoys another longish stint between seizures—say, nine-plus days—I'll begin to think the new drug, Xcopri, might indeed be working to lessen his fits. Let's hope so. We kids need a break.

In the meantime, when Calvin is in school or at home with Michael, I'm managing to get out a bit for long walks in the mist, sun and wind, and on slushy, icy fields and trails. I'm having fun capturing some magnificent landscapes and skies on my cell phone and Panasonic, plus taking shots of Smellie and the ever-changing, sometimes dramatic evening skies at the fields. Layers are coming off in the milder weather, and songbirds are singing from tops of trees. Tons of smiles and waves have been coming my way, as well as visits with chatty strangers (must be the springlike weather). I'm slowly editing and adding to my memoir manuscript, which at this point is over fifty-six-thousand words despite having been largely neglected during the first two years of this damn pandemic. I'm having fun hanging out with my husband in the evenings listening to and watching Led Zeppelin and The Beatles, dancing like a fool in front of the fire, making us both laugh, watching some nice films and reading some good books.

So, yeah, in the scheme of things and for the most part, I'd say the kids are all right. 

longer stretches

Hours before dawn, I curled up next to my son for the second morning in a row as he shivered and shook in my arms. After the last increase in Calvin's new medication, Xcopri, he went two weeks without any seizures at all, which is a decent stretch of recent. It seems, however, that he has a pattern of going for "longish" seizure-free stretches, followed by one seizure, then going for another longish stretch, only to have a cluster of two or more seizures. In effect, he doesn't really seem to get ahead in terms of fewer overall seizures, which, of course, is the goal.

Witnessing Calvin seize is always distressing. Each grand mal—the kind he most often has—starts with a blood-curdling shriek or howl, which sounds as if he has seen something absolutely terrifying or is being murdered. I can't describe it any other way, but it's a horrifying sound to come from anyone, especially one's own child. As it happens, Michael and I jump from our bed (the seizures almost always happen in the middle of the night) unhook and unlatch Calvin's safety net and bed panel, then kneel down next to him. Michael gently holds Calvin' hands and offers him reassuring words as he convulses like, good job Calvin! in an attempt to help slow it, while I make sure Calvin doesn't break his toes kicking the wooden lip of his bed. About ninety seconds later, when it is over, we watch the color come back into his dusky fingers, toes and lips. It takes Calvin several more minutes to totally catch his breath owing to fluids and/or soft tissues that seem to periodically obstruct his airway. Then, when that trouble has passed, I syringe a milliliter of my homemade THCA cannabis oil into the pocket of his cheek in tiny bits; this seems to prevent a second seizure from occurring after he falls back to sleep.

I'm sitting here now wondering if last night's storm and low barometric pressure had anything to do with triggering his fit; it does seem like they are sometimes weather-related. In any case, he's not really well or strong enough to get into the car for a ride. He's also restless, on and off the couch, and not eating much to speak of. But, he is doing better than after yesterday morning's seizure, which is encouraging, though I wouldn't say he's out of the woods yet.

We increased Calvin's new medication again last night, but it will take a week or two until it reaches what's called a steady state, that being a higher constant level in his blood. I hope he doesn't begin to suffer badly the side effects the drug is mostly known for, which is dizziness, major fatigue and lack of appetite. It is hard enough keeping weight on this kid.

So for now, we will hunker down at home listening to music and to the snow plows and blowers outside. I'll get outside with Smellie for another walk in the woods when Michael gets home from working in his studio. I'll sit on the couch in the sun writing, and I'll dream of springtime and flowers and of longer seizure-free stretches for my kid.

In the wake of a seizure, April 2020

wishing

wishing i could get out to simpson's point and pennellville today. it is beautiful on days like these when it's seven degrees. wishing calvin hadn't suffered two grand mals last night. wishing he had made it further than eight days. wishing he hadn't been so panicky for hours afterwards—heart racing, palms sweating, his little body tense and trembling. wishing i had a harmless antidote to give him. wishing i'd gotten more sleep. wish i had less stress. less anxiety. less clenching of my teeth. my worry over him is devastating.

wishing calvin didn't get a fourth close covid contact at school last thursday. wishing school weren't remote this week. wishing he were a normal kid, whatever that means. wishing this pandemic never got to this point. wishing more folks trusted and understood the science. wishing folks thought of others instead of just themselves. wishing people had masked and vaccinated and stayed home whenever they could. wishing people didn't take certain unnecessary risks possibly putting others in peril. wishing hospitals and their staff were not overwhelmed; everyone is tired of this pandemic, but our fatigue pales in comparison to that of healthcare workers. wishing so many people weren't getting sick and dying. wishing so many children weren't losing their parents. it didn't have to be this way.

wishing i knew what ailed my son. wishing he could tell me himself. wishing i knew the source of his distress on either side of his seizures. wishing there were something i could really do to make it better. wishing i had more patience to endure his misery. wishing i could wish this all away to oblivion. wishing i didn't feel so contemptuous the way i sometimes do.

psychotic

The kid is often psychotic. Batshit crazy. Bonkers. Virtually impossible. The other night was a terrible one. Calvin woke before midnight and never went back to sleep again. He spent hours tossing and turning, head-banging, wall-slapping and making all sorts of other annoying and anxiety-provoking sounds. He got tangled in his bed pad and covers. He got cold from his wet, drooly thermal. He soaked two diapers. But he wasn't seizing. He didn't appear to be in great pain. And he didn't seem all together panicky—no racing heart or clammy hands. But still, he was amped up and likely feeling miserable.

His head-shaking, grousing, and head-rubbing made me wonder if he might be experiencing side effects from the new seizure medication, Xcopri. But when I researched the drug again, there is virtually no mention of psychiatric effects beyond a low incidence of irritability. So then, I wondered if his mania might be due to the extra cannabis I'd given him, but I quickly dismissed that, having not really seen that effect before. I wondered if he might have a headache (headaches hurt, but often aren't bad enough to make one cry) so I gave him acetaminophen and, later, ibuprofen. Lastly, I wondered about the Keppra, which is notorious for its behavioral side effects. I got a sick feeling in my stomach thinking about all the what ifs. What if things hadn't gone so wrong to begin with? What if Calvin had never developed epilepsy? What if he had never been given benzodiazepines? What if he had never taken any anti-seizure drugs? What if he had never been born? Our poor boy suffers so senselessly; there's no reason for it.

Keppra's list of behavioral and neurological side effects is long: aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability (mood swings), hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder, for starters. I often describe my son as "unreachable." Not infrequently, he has abrupt outbursts of laughing and shrieking. He can never sit still. To complicate matters further, like benzodiazepines, apparently Keppra's side effects can be caused by its use, its dose reduction or its discontinuation. Calvin has been on Keppra for years and, until more recently, on a very high dose. I say to myself, we're fucked, wondering—if he's lucky enough to come off of the drug—if the side effects will be permanent, meaning he'll never, ever be a calm and happy child who feels good. Can you imagine being that person or the parent of a child who feels like that? It's called hell on earth.

I think back to when Calvin was first prescribed Keppra. He was only two and had been newly diagnosed with epilepsy. I remember how amped up he was then, often hyperventilating as if extremely excited. Years later, after ten failed anti-seizure medications and dwindling options for a new one that might work (when the first drug fails to control seizures, the chance a subsequent one will work shrinks to less than five percent and decreases with each successive failed drug) we decided to try Keppra again (a friend's daughter had retried it, and the second time around it worked for her, albeit with the help of two others.) I try to recall if that is when Calvin's agitation and mania began, his mood swings and restlessness. I had always blamed the benzodiazepines. Maybe I've been blaming the wrong drugs all along. Or maybe (probably) they're all culprits. In any case, they've made my kid psychotic, and I fear he'll never be the same again, fear his brain has been forever changed, fear he will be plagued by this miserable restlessness in perpetuity.

Inside this two-and-a-half bedroom home on this small patch of land, there's so much suffering—seizures, sleep deprivation, headaches, anxiety, anger, resentment, tedium, frustration, despair, envy, fatigue, panic, psychosis. Still, I try to hold on to hope. Keep my head above water. Thankfully, I've become deft at that. Rather than sink, I watch from my writing desk as diaphanous clouds drift amid a cornflower blue sky. I see and hear the wind finger through the pines outside my window, see the tops of trees swaying in the breeze. I think of my good ole friends and the ones I've made more recently. I listen to orchestral music which often moves me to tears. I'm grateful for warmth, beauty, comfort, love, light, space, nourishment, seasons, family, friends, strangers, forgiveness and walks in the woods and on back roads. I'm even grateful for my sweet, adorable, affectionate, impossible psychotic child. After all, it's not his fault.

On one such day two years ago.

camped out

Yesterday, the tenth day since Calvin's last seizure, he had a grand mal at three-thirty in the morning. This morning at four-thirty, after I had just drifted off since having been wide awake (for whatever reason) from midnight on, he suffered another grand mal. And while a ten-day seizure-free stint isn't that remarkable, it's better than seven days, or four days, or consecutive ones, and/or larger clusters of his brain's electric storms.

I'm glad I went for a run this morning, because the wind is high and the rain has begun falling hard, making it as good a day as any to be camped out indoors. Maybe I'll build a fire, or put Calvin in bed and take a long hot shower, have an afternoon stovetop espresso, write a little. As for Calvin, he is pretty out of it, barely able to get on and off my lap and the couch. With his head covered by his baby blanket (he loves that) it's easy to mistake him for the piles of clean laundry which seem to have taken up residence there. In-between my lap and the couch, he naps on the rug, cross-legged and folded over, his head in his hands, forehead on the floor. It's a sorry sight and reminds me of what a zombie Depakote—one of his first few drugs—made him into when he was just a tot.

Last night, having sensed the second seizure coming, I doubled Calvin's minuscule Xcopri dose with the hope of dodging the bullet (thankfully, Calvin's neurologist and his team are quick to respond to my questions, concerns and requests for help regarding bad spates and new medications.) But a single night of an increase wasn't enough to stop the oncoming storm. I hope today's major lethargy is simply his body recovering from the grand mals rather than a side effect of the new drug. But fatigue is common with most if not all antiepileptic medications, and I've read it's especially true with Xcopri, even at relatively small doses in adults far bigger than Calvin. Sigh.

Tonight, we had planned on having a few covid-negative (rapid-tested) new colleagues of Michael's join us for some of his tasty slow-cooker lasagna, my go-to spinach salad, and the remainder of my chocolate-malt-marshmallow-cookie ice cream cake, but we decided we should cancel since Calvin isn't doing too well. So instead, we'll spend the rest of this dark day camped out on the couch listening to raindrops hitting the widows, cars swishing by through the puddles, and the tick-tock and gong of the wall clock. Around five, we'll get Calvin his meds and tuck him in, make dinner and eat it in front of a movie or fire, and retire early to bed, all the while hoping the storms in his brain will ebb. Otherwise, tomorrow we might find ourselves camped out again on the couch.

cross your fingers, knock on wood

yesterday, calvin cried. i cried hard, too. his furrowed brow and pouty mouth are enough to slay me. it was the first time in a long while for both of us. what was the source of his misery? was it yesterday's three seizures? the rectal valium's side effects? did he have a headache? was he nauseous or crampy? i wondered if there were more seizures coming despite my best efforts to stop them. i wish i knew. living with epilepsy is hell on earth—the only hades i believe exists. i'm certain there is no merciful deity. no god pondering whether or not to save my kid from his suffering and afflictions. as calvin's mother, it's obvious. nature is simply going about its business. but i'm not offended by its indifference. the offense is in dogma which insists calvin's suffering is part of some divine blueprint. that would be sadistic.

after years of various seizure treatments—trileptal, keppra, depakote, klonopin, lamictal, zonegran, ketogenic diet, neurontin, banzel, clobazam, cbd, epidiolex, a second try of keppra—we're left with few options. but with mounting seizures, we feel compelled to try another drug, lest his fits run amok more than they already do. he's had so many these past few weeks. and he hasn't seemed very happy for years. his smiles are fleeting. a lot of the time he doesn't really seem to enjoy himself or feel good. for years he has been suffering a handful of grand mal seizures every month, plus some focal ones. he misses too much school. instead, he camps out on my lap, in his bed or on the couch. it isn't much of a life for either of us.

so, after months of research and consideration, we're going to try a novel drug. its generic name is cenobamate, its brand name, xcopri. it hasn't been around for long, but it reportedly surpasses other drugs with regard to seizure freedom. of course, like all the other drugs, the side effects are scary. so, with an abundance of caution, i'm putting calvin on half the recommended starting dose; his neurologist—who knows i'm in charge—is with me. i'm both frightened and hopeful. so many drugs have failed my child and caused a number of miserable and enduring afflictions, worst of all his wicked restlessness, which is a barrier to most everything.

yesterday, when i began writing this, i set out to craft a more poetic post. one with gorgeous, lyrical imagery, the kind that helps me escape my grief and stress. the kind that can maybe take you away to somewhere else. a dreamy post, describing back road travels, with painterly landscapes, sky and water, and the lovely friends and strangers you and i might meet there. instead, i feel it's just another entry about our hardship, worry and despair. and so at least i'll leave you with this photograph of yesterday's sunrise on a field skirted by trees bright as wildfire. from afar, i saw a ghostly mist shrouding the lawn. i meant to capture it. but the nearer i got, the more it dissolved, until finally it was gone. i'm hoping that can happen with calvin's seizures. cross your fingers, knock on wood.

green-eyed monster

he fell asleep easily, cuddled up in my lap on the green couch. although he is still tiny for his age, it's impossible not to notice how big he's getting. i wonder if he's outgrowing his thca cannabis oil dose. no doubt his hormones are raging. half an hour later, he woke suddenly, and by the distressed look on his face—a look that seemed to say, save me, mama!—i knew he was going to seize. i got out from under him so i could more easily keep him on his side to prevent him from aspirating. the grand mal was like all the others—ninety seconds of rigid, crippling convulsions, his fingers, ears and lips tinged grayish-blue from not breathing—except that this one occurred midday, like the last one that happened in the car. i hope daytime grand mals are not becoming his new normal. it's a troubling couple of events to say the least. still, i can be grateful he went ten days without any at all.

sitting here keeping vigil, i study his features: his noble nose, striking eyebrows, high cheek bones, full lips, smooth, thick hair. he's a handsome boy—strong, square shoulders, a broad back, narrow waist, good abs and pecs—and would have been more so had his brain filled out before he was born. but for whatever reason, it didn't, which accounts for the fact he is nonverbal, legally blind, uncoordinated, developmentally delayed, and racked with seizures.

of late, i've been feeling a bit more envious than usual; i guess that can happen when one pays attention to the rest of the world. i see photos of this year's seniors in high school; calvin should have been one of them. many are sons of my friends. they're good looking and fit. some of them are quite tall. all of them are athletic. i see them in photos on social media wearing their team jerseys, draping their arms around their friends' necks. i see snapshots of some of them running. i see other pictures of them hanging out with their families on trips to visit colleges, at sporting events, camping with their dads. and although i love seeing these pics, which are fascinating and never fail to swell my heart and bring a smile to my face, it's impossible not to feel cheated. parenthood's most precious moments, which are many, at every turn and milestone and in most every way, continue to escape us.

my son is sleeping on the couch now, his eyes half open at times, his brain likely still vibrating (did i tell you that one night after a seizure, i slept with my head against his and could feel his brain humming? most disturbing!) i've just now dripped some extra cannabis oil into his mouth, hoping to avoid another cluster of seizures like we had a couple of weeks ago. it's softly raining, which has a soothing effect on me, and a way of not making me feel like i'm missing out entirely. i glance outside and see a kid walking down the sidewalk with his mother and their dog. i feel a jealous pang. envy is a strange thing. they call it the green-eyed monster. and if you've ever gazed at me up close, you'd see i fit that description to a t.

hammered

looking back at recent posts, i realize i haven't been using capital letters much. somehow, lower-case-only promotes stream of consciousness, but it's also a way of conserving effort instead of expending it. lately, i feel the need to save all the energy i can just to deal with these seizures and this child of mine. 

calvin continues to be hammered by epilepsy. yesterday, he had another grand mal—his fifth in a week. he also had about a dozen focal seizures over four days—more than he's had the entire year. he had one or more seizures every day for a week. i can't recall that ever happening. i have no idea what's causing this bad spate, especially in the wake of nineteen days of virtual seizure freedom. could it be the new strain with which i made his cannabis oil? could it be the ketoconazole cream we've been using for the rash on his neck and chest (the oral version can cause seizures)? a growth spurt? a reaction to the flu shot he got five days before the string of seizures began? some underlying illness we can't detect? a change in his hormones or metabolism? the full moon? last week's car accident? some combo of the above to create a perfect storm? who knows?

yesterday's seizure occurred just after midday, a very rare time for him to have a fit. we were in the car on our way to pick up groceries. calvin let out a blood-curdling screech in the back seat. i took a quick left onto a side road, pulled to the curb, unlatched his seatbelt and laid him down so he wouldn't aspirate. pieces of apple and bile sputtered out of his mouth. when it was over, i tried driving home while he was still laying down, but couldn't latch the seatbelt, so i had to prop him up as best i could. he sat there, kind of sideways, his head drooping as if he were drunk.

at home, i was able to lift and carry my five-foot tall, eighty-five-plus-pounds-of-mostly-dead-weight child into the house and over to the green couch. no doubt i resembled the image i've used on this blog of charlotte gainsbourg's character carrying her son in the film, melancholia. i sat next to calvin as he laid on the couch poking his eye, rubbing his fingers together, and grinding his teeth. disconcertedly, he never went to sleep.

last night, i got up sometime after midnight and gave him a syringe full of cannabis oil, this one having been made with the same strain—chemdawg—that he had decent success with for years. a few years ago, when the cannabis dispensary changed hands, chemdawg became unavailable. now, we can never seem to get the same strain twice, and i imagine strains might make a difference in the treatment of epilepsy. what to do?

thankfully, calvin didn't have a seizure last night, but i'm not certain he is out of the woods. he's nowhere near baseline—having been sleepy and spacey most of the day. i have no idea what the hell is going on. there aren't many options left in my back pocket beyond riding this thing out and/or considering adding a second drug to his regimen, which i'm loathe to do. i'm fearful he's going to get hammered again, either by more seizure or the side effects of the drugs used to treat them. most of all, i dread him having a seizure that doesn't stop. please stay tuned.

again again

i wish it would rain again. patter on the roof. soothe my sorrows. quench and cleanse. inside, the light is warm and dim. my sister sent me a photo of an old flame. i can't quite place his face. don't know it's him. but then. but then. i note a smile that's only his. like so many, it's unfading. some things hardly change from their beginnings.

outside, winds arise and finger through the trees. pine needles shed like rain. the ground below turns solid copper. clouds begin to break as soon as they close in. again. again. leaves turn gold and crimson from one day to the next. autumn's alchemy. someday soon, a withering frost will hit. the moon is full again.

i crawl into bed with my son for the umpteenth time. he has just had a little fit ... again. his face is pale. i syringe a bit of cannabis between his lips. change his millionth diaper. in his short life, i've given him unknown numbers of pills and milliliters of medicine. still he seizes. again. again. in so many ways, he's still like an infant—drawing his knees up to his chest. wrapping his little arms around my neck. i think back to the week he was born. hooked up to leads and tubes inside a plexiglass box in the hospital. michael got no respite from work. instead, he was asked to do extra. thankfully, he declined the request. for seven weeks, calvin never left the hospital. my days and nights were spent there in the room with him. before and after work, michael provided us sustenance. so did some of our friends. it was all so uncertain and exhausting. and then. and then. seventeen years later, we're still dealing with calvin's diapers. still spoon-feeding him. still dreading the next seizure. each day the same. few changes. again. again.

the clock is off. it chimes four times at half past ten. it doesn't matter. its gong is comforting. smooth and round and soft like the box of wood that houses it. i think of the timepiece's beginning. a seed. a sprout. a sapling. a tree. a trunk. a log. a plank. a clock. i recognized my face in it when i entered the antique shop. i barely had a dime in my pocket. still, i knew i had to bring it home. it reminds me of getting through hardships. tick tock. tick tock.

as calvin rests, i see pictures of other people's kids standing straight and strong. they smile and wave and clown for the lens. i see photos of them running. playing sports with other children. watching movies with their kin. i'm fascinated. feel at once happiness and envy. i've learned to hold both emotions. it's necessary for understanding and survival. forgiveness. if only things had been different from the beginning. but then. but then.

the cast iron stove creaks with heat from a fire lit with paper and kindling. below the flames, a pile of embers glows and crumbles into chunks still reminiscent of their beginning. i hear my son up in his bed. he's rustling around in the covers. each time he moves his bed clicks. it triggers me. when i reach him, he's in the middle of another fit. those roving eyes and dusky lips. and i remember again when it all began. and how the fear and hurt and angst and stress keep happening. just like in the beginning. reliable, like the full moon and the rain and sun and wind. each week and month and year are the same. again. again.

dreamscapes and seizures

deep into another autumn. again we're trapped at home. after a string of seizures, calvin isn't feeling well. i'm attempting to be grateful. trying to stay whole. feeling a mix of sorrow, anguish and resentment, frustration and impatience. reminding myself i'm only human. striving to grasp onto grace and hope.

last night, calvin had two more grand mals. how can he go nineteen days without one, then have four over three days in a row? that hasn't happened before. at least we're not in the hospital. in-between the ones last night, he was agitated and clammy. awake and restless for hours. patting the bed. banging the wall. extra cannabis didn't help. perhaps the new strain is the culprit. it's near impossible to know.

i barely slept a wink. when i did, my dreams were mixed and vivid. a long and winding one featured me and my boy. as usual, a lot went wrong. details of the dream are soon forgotten. what's left are impressions, like footprints on a sand bar. suffice to say, it wasn't pretty. those ones never are. in the second dream, someone i wanted was falling for me hard. the feelings were so real. i have frequent dreams of being in love with people who love me. in these, and dreams of flying over land or breathing underwater, i simply will things into being. just rise up on toes or dive below. float in and out of clouds and kelp and making love. i think these dreams are healthy. inevitably, calvin tears me from them. sometimes when he's seizing, or in moments just before.

that is how these recent days have dawned. from deep in dream to cold, hard consciousness, however groggy. ripped from splendid dreamscapes into reality's harshness. hard to start a day like that two mornings in a row. today makes three. it appears we may be headed toward a fourth.

wide awake, i cruise through recent photos. of trees and clouds, shrubs and seas. rocky shores. the landscapes, seascapes, skyscapes are magnificent. their beauty, raw. their awesome presence humbles my significance. autumn canopies wild with color as if combusting. sable waters laced with whitecaps, wild and churning. mackerel skies stretching like an ocean to forever. i trust infinity and nature. must let them lead me to surrender. like certain dreams, they set me free. make me whole. melt my sorrowful embers.

calvin just had another seizure, this a focal one. his dusky lips stitched up as if he'd eaten something rotten. i gave him a different strain of cannabis oil. one with more thc. we'll wait to see what happens. see if we can sleep tonight ... and dream.

getting lost and forgetting

it has been seventeen days since calvin's last grand mal. equal to a stint in early march. closing in on a longer stretch last december. i wish my worry decreased along with his seizures, but i'm always on guard waiting for the proverbial shoe to drop. spending time in the garden and out and about helps me in getting lost and forgetting. it's good to try and focus on anything but my son and his wretched condition—birdwatching, watering, pruning a little, jogging, writing. anything that takes me places besides the stress of a disabled, chronically ill son.

the weather in october and september has been glorious. days on end in the low seventies. clear blue skies and gorgeous autumn foliage. this morning, i ran another of several 5Ks since my knee pain abated (i started too hard.) these days, i take it relatively easy. it feels good. running is so much more pleasant than swimming indoors. nice to look around at the world instead of at stripes on the bottom of a pool. and, i don't smell like chlorine all day long. it's nice to see friends. greet and wave to strangers. watch the landscape changing with the seasons. i can feel my lungs and thighs, glutes and calves getting stronger. when i melt a little more of this middle i hope to feet light and lithe like i used to. shouldn't take much doing. i'm lucky my body is still responsive.

early yesterday was perfect for a drive. calvin was home from school for the indigenous people's day holiday, so we took our usual ride. we ran into the carhart dog-walker whose name is john. we slowed to a stop and visited for a bit. he told me about his job and about the gorgeous flowering plants he is tending in his front yard, which are chock full of purplish blossoms, and then we said so long.

a mile or two down the road i saw a new friend i recently met. she's one of the regulars i've seen on my back roads car rides. her name is lorel and she does a lot of walking. i pulled to the shoulder and rolled down the windows so she could meet calvin and smellie. in the back seat, calvin was going a little berserk, but she didn't seemed fazed at all. probably in her seventies, she's fit and spunky, clad in leggings, an oversized sweater or jacket, nappy hat and colorful knit gloves. she told me of her violin playing and offered me some homemade pesto; i sense she makes it in bulk from basil she grows. i may have to take her up on it!

today, thankfully, calvin went to school again. he hasn't missed much this year. i put him on the bus around seven and he comes home just after two. today, i had enough time to walk smellie, run, eat a bowl of granola, install the bird bath my new friend and neighbor gave me, mow most of the lawn with our manual mower, shower, tend to email, and write a little—all good ways of getting lost and forgetting about my little enigma ... until he comes home.

in the withering

the lilies are withering, their supple edges starting to darken and curl. their delicate petals drop like tears. stamens cling doggedly to the center of each blossom's throat. like tulips, their demise is gorgeous, something so worth witnessing rather than dumping them into the compost upon first fade or wrinkle.

in the garden, the black-eyed susans are beginning to shrivel. the phlox are going to seed. the peony leaves are turning yellow, red and purple. inside, because of my unintentional neglect, the fire in the stove is having a hard time getting started. as on most days, my son is a constant and annoying distraction. it's hard to get anything done when he's home. no reading, no writing, few chores. he tromps around the house and yard in purposeless circles, like some crazed, caged animal; sometimes i wonder. i spent over an hour trying to get him to do his business on the toilet—sit. suppository. wait. get up. walk. repeat. i have to stand in the bathroom to avoid disaster from happening. i won't go into the shitty details. suffice to say it's better than years ago.

as i while away the hours beside my aimless child, everything piles up—the tending of the garden, the dishes, the vacuuming, the dirty laundry, the mounds of clean clothes. it's not that stuff doesn't get done. it's just slow. thankfully, my husband helps, plus does all the cooking.

yesterday, i was up at 3:30 a.m. caring for a shivering boy who has been on the verge of a seizure for days. his teeth were chattering madly from an alarmingly subnormal temperature, probably brought on by a haywire brain. i'm spent. and when he's like this, i wonder and dread if he's withering too.

when i'm inside this house alone with my son, which is often, i feel so disconnected. his presence is not always comforting. we don't converse (he's nonverbal.) he's often unreachable, seemingly looking right through me. he is mostly non-responsive to instructions. and yet, he expresses some of his needs. he searches me out, sits in my lap for five or ten seconds before getting up and motoring on. moments later, he does it all again. that's no exaggeration. it's disturbing. at times, he's so unsettled. tense. troubled. his behavior is often intolerable. i can't say how he feels. but this empty feeling he has carved out in me never fully fills or heals. i don't always hold it together. but i must forgive myself the unravelling. it's all a part of the process. survival and regrowth.

yesterday, i saw a young father at the grocery store. he was dipping his head into his tiny baby's carry-cradle. a stranger commented on the infant's cute face. i watched the baby gaze at his father and the stranger the way calvin never looked—or looks—at me. almost no one told me our boy was beautiful. at least that's my memory. maybe they would have if i had seemed more open and approachable. instead, i was beset by loss and grief because of his deficits. had become a shell of myself while feeling the weight of an alien world. that was a long time ago. back when i first began my withering. and yet, maybe the process of opening, coming apart, and emerging into something altogether different, if looked at in the right light, can be beautiful. like a fragile flower dropping its petals in a show of naked surrender.

one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

absences

As I walk the dog at the fields in late afternoon the sun descends, casting its long, early-autumn shadows. Bathed in the golden light, I get a mix of feelings both sublime and glum. I'm reminded of my splendid childhood summers, but also of times my mother rang the dinner bell calling me away from playing with my friends. I knew the fun part of my day had come to an end. It didn't matter that I'd wake up to another one. I didn't think of it. Just hung my head mourning the absence of my friends. Dragged my feet over the gravely road, heading home alone.

Leaving the fields, a boy jogs across my path. He must be twelve or thirteen. He's a little taller than Calvin and nearly as thin. That's where their commonalities stop. The boy is on his own. He is nimble. He can run. He's a fast athlete and, even at that age, serious and focused on his endeavor. Seeing him gives me pause, and I find myself thinking again about Calvin and our sorry situation with him—what if things hadn't gone so wrong?

I watch the boy run down the path and disappear around the bend. In the distance, a bunch of college students plays soccer, their fit bodies able to do exactly what their brains tell them to do. Their laughter is bittersweet to my ears. Hearing it makes my heart soar and sink, my eyes sting and blink, my mouth tighten into a smile then slacken into something more somber.

My precious boy doesn't have a single friend. He has no concept of play or sport, camaraderie or competition. He can't do those things. Doesn't have language. Navigates his world as if he were blind. Isn't very adept at walking. Has poor coordination. Virtually zero fine-motor skills. He's at the mercy of a brain anomaly, unforgiving seizures and drug side effects. I quietly lament: there's so little joy in life for him.

As I stroll home, the sun at my back and the afterimage of the running boy blazing in my brain, I feel lonesome. The wide street that runs in front of my house is desolate. There are no neighbors tending their gardens. No cars or skaters or bikers sailing by. No parents pushing strollers. No flocks of happy students crossing the road. Loneliness is not an emotion I feel often; I like my own company, like being alone. What I feel is the distinct absence of a child beside me. The loss is palpable. I sense the emptiness in it—the absence of conversation, of exchanging ideas, sharing hopes, hearing dreams, of feeling the sheer joy of walking, running, talking, biking alongside one's child. The hollow pit in my gut deepens as if weighted by a stone. The grief and loss constantly and for years gnawing at it. Thankfully, the burden has softened over time, not to the point of being in any way comfortable or easy, just slightly less dark, sharp and heavy. Less likely to literally bring me to my knees.

I've been rereading my blog posts from nine years ago. Back then, Calvin went seventy-eight days without any seizures. Regrettably, his behavior was unbearable—relentless and terrible side effects from taking high doses of three powerful anticonvulsant drugs. It wasn't a fair or sensible trade-off, so we began weaning the drugs one by one. It took us a number of painful years to get him from three down to one. Since then, however, nothing we've tried—five different kinds and repeated tries of CBD cannabis oil, Epidiolex, probiotics, increasing his Keppra, reducing his Keppra—has helped him regain any kind of seizure freedom longer than a few weeks. Lately, he goes mere days between seizures. I'm still fiddling with his dose of homemade THCA cannabis oil hoping to find a sweet spot.

I think about the boy athlete again, the young runner so sure, quick and lithe. I like to believe Calvin would be like him if things hadn't gone so wrong. And, so, I'm mourning the absence of a healthy, able child. But last night, when Calvin wasn't doing so well, I crawled into bed next to him. He reached for me, wrapped his skinny arms around my neck, curled his knees up to his little bird chest and pulled my head to his. With his eyes closed, he relished my kisses on his eyes, nose, cheeks and chin. Then, like he does sometimes, he made the sweet and soft hum I love so much—uh-uh. In my mind, it sounds a bit like Mama, which long ago he said just once. And for a fleeting moment, that empty sense of absence was filled right up.

Photo by Michael Kolster

strange, rare, amazing gazes

strange gazes. bad appetite. sour breath. restlessness. intensity. wanting to drop. choking on food. hot skin. agitation. euphoric mood. these are harbingers of calvin's seizures.

too soon. only five days since he suffered the last fit. still, i saw it coming. i gave him extra cannabis oil hoping to prevent it. maybe i waited too long; it failed to do the trick.

i kissed my restless kid. laid him back down in his bed. a rare and sadly suspicious smile crept across his face. minutes later, we heard his telltale shriek. i thought we had dodged it. i was wrong. he seized and choked. something inside his mouth bled. afterward, he had trouble catching his breath. it's always unsettling. something we dread. never gets any better.

i quickly brushed my teeth and undressed. crawled into his bed. with my palm against his chest, his heart felt as if it would burst right through his ribs. it remained pumping wildly for quite some time. caused me to fret. made me think we should start him on a new med.

finally, my little calvin drifted off to sleep. dim light seeped in from the next room. i peered over his shoulder to a portrait of him propped against the wall above his dresser. it was made when he was five or six. often, when i lay in bed with calvin in the wake of his morning seizures, i see it in the shadows, its cool blues, pinks and reds. it was done from a photo. gifted to us by a painter friend. it's masterful. full of life and color, vivaciousness. in it, my boy's eyes are bright. his smile is big and broad. his gaze, unusually fixed. he's looking right at me. it's clear he sees me. these are rare and amazing gazes. on the days when i don't see my son smile—which is most, lately—at least i can always rest my eyes on it.

over the years, calvin has lost his sense of cool. of calm. of happiness. we see glimpses, like when we tickle or kiss him. but those moments are far between and fleeting. i wonder what the drugs and seizures did to him and are doing. wonder if he is in constant discomfort or pain. wonder how his hormones factor into the equation. wonder how we can recapture his happiness again.

junior

This morning, I put my coulda-woulda-shoulda-high-school-senior, Calvin, (he's actually a junior because he repeated kindergarten) on the bus and got to work. I walked Smellie, did a load of laundry, folded some of it on the green couch for all passersby to see, transplanted a shrub, watered the entire thirsty garden, prettied up the withering day lilies, put clean dishes away, did my first legitimate grocery shopping (wearing my N95 mask) in a year and a half, read a bit of news, and wrote. A little more than halfway through the day, Calvin's teacher Paul, whom I adore, texted me to tell me that Calvin was doing well, and attached a photo of him walking down the stairs. No doubt The Kid is on the move.

On Facebook, oodles of friends sent me loving sentiments in response to expressing my angst about sending Calvin to school for such a long day after having spent most of his time chilling with me since the damn pandemic began. One person wrote, "he's gonna be FINE." I wish I could be so confident, but he had seven grand mals this month, and our boy has a habit of not being fine much of the time.

Because of Calvin's sheer number of grand mals, which have been ticking up for several years while his focal seizures have almost dissolved, I've been pondering adding a second pharmaceutical to his regimen. We've cut back pretty far on his Keppra to see if that makes a difference, though it's still too soon to tell. But when I read about all of the side effects of new and old drugs—some of them behavioral, others lethal—I get cold feet.

Epilepsy is a goddamn beast. There's no cure, and the drug side effects can debilitating and impossible to tolerate. Calvin's wordlessness complicates everything since we can never know what he is thinking or feeling. With at least one grand mal every week, a day or two of recovery, plus the drug side effects, I can't imagine he ever feels really good.

When it came time for the bus to show up, I sat in the dappled shade on the front porch with Smellie, my pink Chuck Taylors brightening me up. The bus was a bit late, allowing me to do what is exceedingly rare for me, which is NOTHING. When it finally arrived, seeing Calvin stand at the top of the stairs with his aide, Fern, keeping him safe, I was amazed at how much Calvin has grown since the spring.

The Kid gave me a hug, clawing my neck the way only Clawvin can do. While we stood in the driveway, our arms wrapped around each other, I tried hard not to imagine that—if things hadn't gone so wrong—he might be joining some of the seniors on the playing field, in the classroom, in the halls, and well on his way to college.

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.