in my element

I felt nearly like my old self last night—giddy, relaxed, excited, even a little rowdy—getting gussied up in some fancy duds I mined from Salvation Army. What you can't see in the photo below is that I am wearing tails over of the strapless, shirred-tulle dress. Comfy in my black patent flats, a bit of bourbon warmed me in the wake of an excruciatingly long, icy, frigid winter "vacation" week, which confined us to home with an oft-agitated kid. At six o'clock, I kissed Michael goodbye and headed south in the rain, carpooling with Freddy Mercury (my friend Vin) and two others from Queen (my buddies Aaron and Dan), to attend our friend Swifty's (my pal Tim) annual Oscar gala.

Thirty miles away, we were greeted by a venue filled with tulips. A throng of handsome men sporting tuxedos and dinner jackets, some dressed in drag, plus a smattering of women, drank Prosecco and hammed for the camera. In a rare, live performance, my buddies from Queen rocked their hit, We are the Champions, to the surprise of many happy onlookers. On three walls, a half dozen big-screen televisions broadcast the Red Carpet. Swifty, our most beloved and dapper host who always goes all-out, if not over the top, for his guests, was at his best emceeing the event. As the awards show began, we dined on delectable spinach salad, stuffed pork tenderloin, flaky haddock smothered in a divine white sauce, roasted root vegetables and penne. I might—just might—have gotten a little bit tipsy.

The night reminded me of parties I threw decades ago (has it really been that long?) in my sweet Haight-Ashbury flat, where scores of friends and strangers dressed in their finest threads rocked the house, eating good food, drinking probably too much, laughing and dancing. I'm in my best element at a good party, even more so when I can dance.

By the time we left the event, the crowd had dwindled to some hard-core enthusiasts, and the rain had stopped. On the way home, Queen sang Cameo's, Word Up, from 1986 as I listened awestruck in the backseat remembering what it felt like to be young(er) and unencumbered. I wished they'd sung hits the whole trip north.

It was just about eleven when I finally rolled into bed. In the attached room, Calvin slept soundly under his fleece and down comforters. Nellie and Michael were deep in dream state. Closing my tired eyes, I wished Calvin would make it through the night without any seizures, hoping he would manage to go back to school, because—shindig or not—this party girl needs some rest.

the bright side

It's that time of year when sun and thirty-eight degrees feels balmy, when, on days like this, the college students can be seen wearing shorts, even though there is still snow on the ground. With more storms on the way, however, I try to remind myself that we are closer to spring than ever, trying my best to look on the bright side of things.

Having recently felt the dark grip of despair more than usual, I've had to apply an attempt at optimism for all things Calvin, too. Though Calvin is still averaging about five or six grand mal seizures a month (save a thirty-day stint ending in mid January when he had only three) his partial complex seizures are few and far between. Still, the number of grand mals is troubling, especially in the face of increased CBD oil hoping to get them under control. When questioning whether to continue increasing it, I consider the bright side of things:

Calvin has been sleeping quite well for weeks on doses of CBD oil between two and four milligrams per kilogram of his weight—higher than many children who are taking it for their epilepsy, though far lower than prescribed doses of the new CBD pharmaceutical, Epidiolex. Also promising is that Calvin hasn't been sitting up multiple times in the middle of the night banging his head on the side of his bed repeatedly like he used to, nor has he been staying up for hours on end completely wired like he did frequently several months ago. His appetite and balance are good. He has been rebounding well after grand mal seizures. His total number of monthly seizures has dropped from the teens down to the high single digits in the past three months. Apart from some behavioral problems stemming (I think) from gastrointestinal discomfort, I haven't seen bad side effects from the CBD.

Moreover, and as I've said before, this slight decrease in total monthly seizures comes despite being in the thralls of puberty, despite not increasing Calvin's high dose of Keppra in over two years, despite having cut his daily THCA oil in half, and despite the fact that he is has been off of the benzodiazepine Onfi, aka clobazam, for a year.

Granted, it is possible we could see better seizure control if I increased his THCA oil, but the THC in it appeared to make him irritable and seemed to give him panic attacks and rapid heartbeat. I'd rather try to eventually replace it with CBD so we could feel more confident boarding a plane with his medicine. Furthermore, I don't want to muddy the waters with too many variables, and since I don't see bad side effects that I would attribute to his CBD oil, I'd like to see if increasing it a bit might help quell his grand mals. I've heard that its sweet spot might be between five and six mgs per kg of weight. Right now, Calvin is taking about 3.5 mgs of CBD per kg of his weight—about 100 mgs per day divided into two doses—so we've got some wiggle room, which helps me remain optimistic.

I promise to keep you posted.

Photo by Mary Booth

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reason, written by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.

Photo by Michael Kolster

choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:

I’ll be honest. This week’s news cycle has been exhausting and painful. 

This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 

Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

birthday boy

Due to hazard, Calvin's birthday cake didn't have fifteen candles. Like most if not all abstractions, Calvin didn't have any concept Thursday was his birthday. He didn't make a wish, because he doesn't know what that is, and he didn't blow out the candle, because he doesn't know how. He didn't eat any cake that night because he was too tired, still recovering from that morning's seizure, and was well on his way to getting ill. But, we managed to get photos of our precious birthday boy, albeit without smiles, because no doubt he wasn't feeling good and he's oblivious to smiling for the camera anyhow.

Photos by Michael Kolster

birthday blues

Fifteen years ago today, as I laid on a stainless steel operating table being prepped for my emergency C-section, the busy doctor and nurses patted my legs and feet as they walked past. Their gestures, meant to calm and reassure me, worked. Then, within minutes, I fell under the spell of general anesthesia. Sometime later in a different room, I awoke in a haze, Michael beside me holding my hand. I felt a dull throb in my lower back and the ache of fresh incisions and sutures in my belly. As I looked around at the blurry world, my newborn was nowhere to be seen. Slurring my words, I alerted Michael of my pain. Instinctively, he launched into our hypnobirthing script, which worked to dull the pain and lulled me back to sleep again.

Later the next morning, I emerged from a morphine fog, eager to meet our son. Gradually, I sat up, careful not to pop the staples and stitches in my gut. I placed my feet on the waxed linoleum floor and gingerly lowered myself into the wheelchair Michael had fetched. He wheeled me down wide corridors and into an elevator which took us downstairs to the neonatal intensive care unit (NICU). Somewhere in the florescent-lit room, Calvin was sleeping in a clear plastic box called an isolette, the intubation apparatus that had assisted his frail lungs having recently been removed. We scrubbed our hands and forearms with soap and warm water, then donned paper masks before entering the room.

As we neared our son's station—unsettling bells and alarms ringing and buzzing periodically—we passed by several other isolettes, each housing its own tiny baby, some no bigger than my hand and weighing little more than a pound or two. All of the preemies wore adhesive leads to monitor their heartbeat, respiration and oxygen saturation, and most were hooked up with cumbersome breathing tubes. When we reached Calvin's isolette, I recognized him instantly. His moon-shaped face had red marks where tubes had been taped, and a tiny little furrowed brow told me he'd been stressed. His right hand and wrist were taped with a splint meant to keep his IV in place. I scooted up as close to his box as I could and peered in, marveling at my beautiful boy whose nose I thought looked familiar.

"Hi Calvin," I said softly, and my baby boy opened his eyes for the first time; he was twenty-one hours old.

This morning at four-thirty, on his fifteenth birthday, Calvin awoke to a grand mal seizure. He convulsed for over a minute. He bit his cheek and it bled. His breathing was labored and strident. Afterward, I crawled into his bed. There, I cupped his shoulder with one palm and laid the other on his hip; he rested one hand over my eyes and put his other around my neck. He slept.

While walking Nellie a few hours later, a friend drove past then pulled up curbside. She got out and we strolled a bit. We exchanged stories of life's struggles and of raising pubescent kids. As we embraced, I thought of Mary Oliver's gorgeous poem, Wild Geese. In it she says:

Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.

After we parted, she called to me before driving away:

"Happy Birthing Day, Super Mama!"

With a smile on my face and cleated rubber boots on my feet, I trudged home in the slush and sleet left from a mini ice storm that rolled through last evening. It reminded me of the morning Calvin was brought into world.

In honor of Calvin's milestone, please consider a contribution to CURE epilepsy by clicking here.

fallout

The night my water broke, an ice storm blew through Maine. Ice caked windows and froze shut doors. It sheathed leaves and needles and burdened branches. It glazed streets and sidewalks, treacherously.

I was only thirty-four weeks along in my pregnancy. A fortnight earlier, a bombshell had been dropped by a doctor who had shocked us with the news that my fetus had a brain malformation. Specialists in Boston, worried that a vaginal birth would stress our unborn child further, had arranged for a scheduled C-section to be performed at week thirty-five. Though I didn't feel any contractions, I quickly grabbed a few essentials and donned my down parka, zipping it up tightly over my basketball-sized belly. Michael kicked open the mudroom door which was encased in frozen rain, and we made our way, driving on desolate roads to our local hospital wondering how, in my condition, we'd get to Boston.

When the on-call obstetrician arrived at the hospital, we explained our predicament—our fetus' enlarged ventricles, his possible brain bleeds, the scheduled 35-week cesarean in Boston aside a team of pediatric neurologists and neurosurgeons, plus donor platelets readied if our newborn needed them. Unable to accommodate our serious case, she made arrangements for me to be transferred by ambulance to Maine Medical center in Portland. The ice storm had made it impossible for us to get to Boston; Medivac helicopters had been grounded.

Once at Maine Med, we explained our situation to another doctor, and a game plan was made. Without blood bank donor platelets in the case our fetus—who we had already named Calvin—suffered another brain bleed, I'd have to undergo a pheresis. In other words, I would be the platelet donor for my son if need be. Actively contracting, albeit subtly, I had to sit upright and motionless on a hospital bed for nearly an hour while my blood was syphoned, put through a centrifuge to extract its platelets, then pumped back into me. The pheresis left me with too few clotting platelets to safely undergo an anesthetic epidural without risking a spinal column bleed. Instead, I had to go under general anesthesia to endure the cesarean. As a result, despite my pleading, the obstetrician would not allow Michael in the operating room, which meant neither of us could witness the birth of our fragile son.

Sorrow and worry wrenched my heart. Everything Michael and I had hoped for, wished for and expected of our child's birth had vanished in a blink. Michael wouldn't hold my hand and offer reassuring words. We wouldn't hear our baby's first cries, wouldn't marvel at the sight of our beloved newborn. I would not clutch my babe to my breast, nor would Michael kiss my forehead as I looked into the loving eyes of a new father.

Instead, my body would become void of all senses. Neither of us would be participant, witness nor advocate. No photos, no videos, no memories would exist of the moment our son was born. I'd be left instead with the memory of kissing Michael goodbye and holding his hand as long as I could until we were finally broken apart. Of seeing him standing alone in an antiseptic room as a white-clad mob wheeled me under a tunnel of lights. Of the fear that I might never emerge from the anesthesia to see Michael's face again. Of perhaps never seeing my wee child alive and breathing.

Photo by Michael Kolster

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.