mom at bedside, appears calm

Written by Suzanne Koven, M.D.

We carry a nylon lunch bag everywhere we go, royal blue with purple trim, containing two plastic syringes, each preloaded with 5 mg of liquid Valium, plus packets of surgical lubricant and plastic gloves. At the first sign of blinking or twitching, we lay him on his left side, tug down the elastic waist of his pants, part his small buttocks, and insert the gooped-up tip. Within moments, the motion stops, as if an engine has been switched off. Then he falls into a deep sleep. When he relaxes, so do we.

He's 5 years old, the first time. Our babysitter takes him to a pizza place for lunch. He laughs mid-slice, blinks his eyes several times, slumps to the floor, and climbs back onto his chair. She hesitates—what was that?—and then calls 911. She pages me. I keep the message stored in my beeper, periodically daring myself to relive my first reading of it.

I meet them in the ER at the community hospital near our home, showily flashing my downtown hospital ID tag. Soon my husband rushes in, wearing the ID from his downtown hospital. All the tests are negative, they say. Bring him back if something else happens.

Something else happens. The next day, I skip work and keep him home from school. He sits happily in front of cartoons while I pace and polish, pace and fold. Maybe the babysitter overreacted, I reason. Maybe he's just a goofy kid. The moment I stop watching him, he cries, “Look, Mommy! Look what my hand can do!”

Downtown. No mistaking it this time. Grand mal, big and bad, right on the gurney. Lumbar puncture. MRI. All negative. Before we go home, the neurologist asks if we have further questions. “Just one,” I say. “What do we do if he does it again?” The neurologist seems surprised. His raised eyebrows silently ask, “Aren't you both doctors?” He hands us a pamphlet.

Dilantin. Chewable yellow triangles three times a day. Triangles to first grade and the beach and day camp and a sleepover. The other kid has cochlear implants. “Don't worry,” his mother says, accepting my baggie of pills. “My kid comes with instructions, too.” We become members of an exclusive club no one wants to join.

One day, almost exactly a year later, the school nurse calls. “It's been 10 minutes and it's not stopping,” she says. I'm home that day and I screech over in seconds, leaving one tire on the schoolyard curb. He's in the nurse's office, lying on the plastic divan reserved for kids with sore throats, bellyaches. Fakers. I know what this is called, this shaking that will not stop. I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine.

In the ambulance, the foam turns bloody. I ask the ponytailed EMT whether he will die. She pretends not to hear, turns to adjust his oxygen. At the local ER, I bark  instructions. “He has a neurologist downtown,” I say. “He needs to be transferred.” The ER attending, who has been bending over him with her lights and sticks, straightens. “I think,” she says, not unkindly, “Mom needs to wait outside.”

Tubed, taped, lined. Ready for transfer. There is one last thing. The ponytailed EMT hands me a specimen cup in which the source of the blood that had burst my heart open rattles. “Here, Mom,” she says, smiling. “For the tooth fairy.”

Back at home, 40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops. The weeks go by like a slow and sickening descent, landing on the carpeted floor of the playroom in our basement. We spend most of the day there because it's the only place in the house where he can't fall down the stairs. At night we tuck him tightly into Star Wars sheets but still find him on the floor in wet pajamas. If the Valium fails, we call 911. A fire truck arrives with the ambulance, and the firefighters, with their giant boots and helmets, crowd along with the EMTs into the small bedroom our boys share, delighting our younger son.

He is admitted. He is discharged. He is admitted and discharged again. Admitted. Discharged. Admitted. Discharged. Admitteddischargedadmitteddischargedadmitteddischargedadmit-teddischarged. My husband, too tall for the fold-out-chair bed, takes the day shift. I pad in slippers through the hospital at night with the other parents. We buy one another coffee. We commiserate. I grow more at ease in this sleepless company than with anyone else — my family, my friends, my medical colleagues. I also cling to the nurses, Jen and Sarah and Kristen and “the other Jen,” as we call her. One leaves my son's chart in his room, and I sneak a look. “Mom at bedside,” a progress note reads. “Appears calm.”

Finally, a break. The sixth or seventh MRI shows a subtle irregularity in the right temporal lobe, possibly a tiny tumor, a focus. We love the very word “focus,” a raft of hope in a vague and endless sea of anxiety. Never have parents been so happy to learn their child might have a brain tumor.

The surgery works. The medications are discontinued. I don't ask to read the pathology report, the operative note. I am startled by my lack of medical curiosity. I wish to know nothing other than that my son no longer shakes. After the staples come out, we pile into the car and take a 9-hour drive — unthinkable during the previous months — to visit my in-laws. On the way home, my husband glances at the back seat through the rear view mirror and, returning his eyes to the road, says, “He's blinking again.”

A second surgery. A third. This time, we're lucky. “The luckiest unlucky parents ever,” I joke.

Years pass. We renovate our kitchen and find the lunch bag with two dried-up syringes of Valium in a cabinet about to be torn down. Our emaciated boy doubles in weight and then doubles again. He graduates from high school. He graduates from college. He moves away from home.

I do not know how much he remembers. He rarely speaks of those years, except to comment on whether a barber has done a good or not-so-good job of hiding the scars.

As for me, occasionally my terror will snap to life again, as if I've been holding it by a long and slack tether. It happens when I am walking through the peaceful, leafy streets of our town, pumping my arms, working my aging heart and muscles, quieting my busy mind. A siren sounds. An ambulance appears. Though I know from reading the log in our local paper that the emergency is rarely dire — a dog bite, an asthma attack — and I know that my son is nowhere near, I still stop to see which way the ambulance is heading.

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

Me and Calvin in the hospital after a dangerous, prolonged seizure, probably not unlike the author and her son.

giving thanks for . . .

thanksgiving. calvin. words on a page. charity. rain. kisses. cheese bread with butter. long, warm autumns. fluffy nellie dog. humor. chef michael. dry-brined turkey. memories of dad carving it. diversity. cannabis oil for calvin. seizure-free days. a little extra sleep. mashers. pumpkin, pecan and apple pies. friends, new and old. mellow child. cranberry sauce and gravy. generosity. candle light. love. bourbon on ice. altruism. mom. curried butternut squash. children. the clink of glasses. teachers and helpers. potus. gifford's old fashioned vanilla ice cream. barbara. ambient light. music. wit. fires in the wood stove. roasted brussels sprouts with parmesan and truffle oil. progressive thought. red wine flowing. a job, a house, clean water and electricity, food on the table, clothes on our backs. leftovers.

a better world

I wish this were a better world, one in which my ten-year-old son didn’t seize all night long—like the other night—and have to be pumped full of addictive drugs that make him feel like crap yet do nothing to improve his condition. Nights like these, when I lie awake next to him for hours listening to him breathe, listening to his heartbeat, make me think of the world and others struggling in it.

I wish this were a better world, where cops and bigots didn’t kill innocent, unarmed black men, women and children nearly every single day, where a blood-orange sunset doesn't remind me of bleeding streets, wailing mothers and burning eyes. I wish this were a world where true justice could be served, a world void of those who deny the racism that soils our society—racism as ubiquitous as the effing turkeys on our Thanksgiving tables. I wish this were a world where more white folks humbly acknowledged the privileges they enjoy and take for granted, a world where they denounce the systematic oppression of minorities, the mass incarceration of black men, the voter suppression, the fear mongering, the scapegoating, the bitter contempt of people most whites know little to nothing about save the disparaging images permeating the news and the vile comments on social media. I wish this were a world where more people were seriously introspective and empathetic, then cared enough and had the spine to incite change. Because from my perspective, as long as I have lived, not enough has changed.

I wish this were a better world where neighborhoods, cities and countries weren’t divided by walls, where everyone had a home, a world in which those homes weren't torn down or chewed up and swallowed by the greed of others. I wish this were a world where everyone had enough food to eat. I wish this were a world where oligarchs didn’t rule the land, where poverty and ignorance didn’t exist, where congressmen couldn’t be bought, where millions of our citizens weren't systematically disenfranchised. I wish this were a world where the heads of corporations didn’t pocket enormous profits on the backs of people who don't receive a living wage for their toil.

I wish this were a better world where people could hope and work for change without hearing flabby platitudes issued by hardliners like, "love it or leave it." I wish this were a world where every baby born, no matter how wealthy or poor, had access to a good education and proper health care, a world where everyone had the same opportunities, because—whether you choose to believe it or not—we don't. I wish this were a world where the self-righteous didn’t impose their beliefs and preach their moral superiority, then turn around and act so ugly, hateful and contemptuous to people who they don't even know or care to understand.

I wish this were a better world, one in which—if he were healthy, normal and seizure free—my son Calvin would grow up and feel good about living in and, if it wasn't, he'd do his best to make it that way if for no other reason than it's the right thing to do.

Detroit, 1967

Ferguson, 2014

watching and waiting

Today is the eighty-first day since the last time Calvin had one of his typical, daytime, bath-time, three-plus minute, tonic-clonic seizures, the kind where he convulses and turns blue. Other than a couple-few, seconds-long, early morning partial seizures, Calvin's daytime seizures have all but disappeared. We can't be certain exactly why, but everything seems to point to the homemade THCa cannabis oil I've been giving Calvin during the day since late last February. The evidence is even more compelling considering we have weaned him off of over 50% of his benzodiazepine, clobazam, beginning last April.

In general, with the exception of dealing with a hysterical kid in the days preceding a big seizure—all of which are now occurring every seven to ten days in the middle of the night and/or just before dawn—Calvin is calmer, more well-mannered, more patient when he sits in our laps or when we ask him to wait, and is walking and attending to things far better than before starting the cannabis oil.

A little over two weeks ago, with the hope of eradicating Calvin's nighttime seizures, we began supplementing his regimen with a few drops of CBD cannabis oil at night and in the morning using, as a base, a honey-oil resin from our local dispensary to which I added MCT (medium chain triglyceride) oil. The oil is not fully decarboxylated (heated to eliminate the acidic compounds from the cannabinoids) so it is still rich in CBDa and slight in CBD (cannabidiol), the cannabinoid considered by some to be most useful in combating epilepsy. I figured I'd try giving it to Calvin anyway. Unlike pharmaceuticals, I'm not afraid to experiment with different forms of cannabis, particularly since I'm fairly certain the cannabinoids in them work best synergistically. The dispensary is working on more fully decarboxylating the honey-oil and when they do, we will likely switch to that.

In the meantime, we are watching and waiting. Today is day six since Calvin's last seizure. I'm hoping that the CBD is building up in his system and might soon work to thwart future ones. Only time will tell. If it does work, we'll resume his benzodiazepine wean hoping to get him completely off of the clobazam within six to nine more months, perhaps sooner.

Today, Calvin went to school happy. His morning was pretty relaxed, full of smiles, hugs and kisses for me and Michael. His balance has been amazing and yesterday he walked all the way to the fields—and then some—and back again before joining us at a crowded grocery store to walk some more and to bang and mouth the cold, glass refrigerator doors.

I'm feeling thankful these days, and I'm crossing my fingers.

Calvin waiting to bowl, photo by Mary Booth Scarpone

a sorry state

Epilepsy affects 65 million people worldwide and about one in 100 Americans, over 500,000 of them being children.

One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime. 

Each year, as many as 50,000 Americans die from epilepsy and related causes, such as drowning and head injuries—more than die from breast cancer.

Over 200,000 Americans are diagnosed with epilepsy each year.

For seventy percent of those with epilepsy the cause is unknown. 

Over thirty percent of people with epilepsy do not have their seizures controlled using medication.  

People with epilepsy live their entire lives tethered to the terrible side effects of anti-convulsant pharmaceutical drugs.

It's a sorry state when something so pervasive and damaging as epilepsy gets so little attention. Please give to CURE epilepsy at http://www.calvinscure.com

mother of exiles

The New Colossus

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
 
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!"

—Emma Lazarus

In 1903, the poem was engraved on a bronze plaque and mounted inside the lower level of the pedestal of the Statue of Liberty.

Like most Americans, my ancestors were immigrants, some making the long and treacherous journey to escape the perils of Ireland’s potato famine, others traveling from Spain and landing on Sir Francis Drake Beach north of what is now San Francisco. They left their families and risked their lives to make a better future for themselves and their loved ones in a land that was not theirs but that became home. Millions had come before them and millions followed, making this a great nation of immigrants, rich in diversity and in its stories of struggle, courage and hope told by immigrants and born of survivors of Native American massacres and of the ugly scourge of slavery.

Recently, I had a conversation with a woman about the decades-long wave of undocumented immigrants coming to this country to make better lives for themselves and for their children and as refugees escaping the murderous threat of drug cartels, child labor, human trafficking and hunger. They come to work hard and to contribute. They come bearing hope. She complained that these immigrants don’t pay taxes, so I pointed out that indeed they do, at the very least paying sales tax while many also pay income tax. Later, while discussing a different topic, she admitted to not paying taxes on the tips she makes at work. I tried hard to grasp her rationale, which to me seemed like a double standard, but I came away more perplexed than when we began, and it lead me to check myself for hypocrisies in my own behavior, which no doubt I have.

Lately, I've heard a rash of folks grousing about undocumented immigrants living in this country. It’s always the same list of gripes: they don’t speak English; they don’t work; (and yet) they’re taking our jobs; they’re on the dole; they’re criminal; they don’t pay taxes; they don’t contribute. I wonder if these protesters personally know any undocumented immigrants and where they get their information. Perhaps they employ them, underpaying them to pick their fruit, pack their meat, clean their homes, care for their children.

I remember a conversation I once had with an American man who said that Mexicans—who make up the largest group of undocumented immigrants living in this country—are a bunch of lazy crooks. He’d come to the conclusion because he’d briefly visited a large Mexican port city and had either been pick-pocketed or had heard that pick-pocketing was rampant there. I pointed out that all major port cities worldwide are likely rife with con artists. I asked if he knew any Mexican people, had any Mexican friends, and he refused to answer. I asked why he thought Mexicans were “stupid and lazy.” He replied, “Just look at the state of their economy.” I asked him if he thought Depression-Era Americans were stupid and lazy. He didn’t answer and instead turned his back and walked away.

The stories I’ve heard of undocumented immigrants are of people no different than ourselves. They're hard-working people, men, women and children hoping for a better life, hungry people, ambitious people, good people, loving people. They risk their lives, just like our ancestors did, to make a better future for themselves and for their families. I imagine if I lived a life like theirs and if I were desperate enough, I would do the same for Calvin and for myself. I'd risk crossing that border and hope with all my heart that I'd be given a chance to prove myself, a chance to contribute, a chance to thrive in this place we once lovingly and proudly thought of as the Mother of Exiles.

underwater

If only I could breathe under water I'd dive in and drink the liquid like sky, stay under for a spell drenching myself in the cool dark spaces that lurk at my feet. Then, I'd ride the thermals in a deadman's float, my fingers and toes trailing through the reeds and silt making marks like claws.

Underwater I'd forget about my son's seizures, his screaming spells, our sleepless nights, my exhaustion, worry, angst, dread, fear, my despair. Underwater I'd drift alongside smooth wooden boughs, and let myself get caught in beautiful eddies, but only for a while. Somehow, there'd be music down there with me, marimba for sure and perhaps velvety brass and some strings, happily pinging away as I pass over rocks and between sunken trees that look to me like ghosts or skeletons or both. And from that music I'd cry invisible tears.

Perhaps I'd come face to face with a catfish or an eel. Maybe we'd kiss each other in solidarity of life's hardships, hers from the hunger and the hook, mine from the messed-up brains of my son and my mother, both of which tug and tear at me until I'm raw.

I read this to my husband and he tells me how strange it is that when he took this photo he watched a large fish serpentine its way against the current up the channel. I'm swimming upstream, I think, and have been for a while. Good thing I'm a strong swimmer, the water being my second home. I know when to fight it and I know when to give in and simply let it take me under, if only for a spell.

Rio Grande, photo by Michael Kolster

thanks y'all

Yesterday, he came through the mudroom door a month after I’d said a very tearful goodbye to him. He’s lost several pounds having survived a string of long, hard days photographing the Los Angeles River, the Rio Grande, The Hoover Dam and Lake Mead sustained in great part by a modest diet—not so much by design as by necessity—of avocado, cheese, sardines, bread and raman. He looks like he did when I first met him seventeen years ago, not an ounce of body fat on him. Complimenting him on his wiry physique, I joked that he resembles Jesus, at least the European version of the man. We laughed.

As part of his Guggenheim Fellowship, my husband Michael drove cross-country and back in a rental van packed with 220 sheets of spanking clean 8 x 10 glass, several jars of syrupy collodion and silver nitrate, gloves with which to handle the glass and chemicals, several gallon jugs of distilled water, trays and tanks and graduated cylinders, one dark box and its stand, one dark cloth, two large-format cameras, at least one tripod, a handcart and several homemade wooden cases in which to hold his glass plates after exposing, developing and fixing them.

During his trip he called me twice daily to tell me how many plates he’d shot, how long he’d sat in traffic, how tired he was, how great the World Series was, how nice his hosts were and how ready he was to come home.

Calvin, Nellie and I stayed home, but mostly not alone. A legion of friends and family came out to help me. Seti flew here from LA on a 24-hour trip from hell, and since I couldn't, Macauley picked her up at the jetport at eleven p.m. bearing a warm winter jacket and a burger for a gal he'd never met. A few days later he stepped in again to take my sick car to the mechanic, then took Seti back to the airport when she left. A week later my mother-in-law lovingly descended, but from Florida. Regrettably, both women witnessed Calvin have a bad seizure in the middle of the night. Both helped me manage it. Later, my sister drove up from Connecticut for a couple of wonderful days and nights. All of them gave me an abundance of love and support, helped make me smile and laugh.

Arnd, who traveled from Berlin, though not expressly to help me, stayed four nights and, in true form, tried fattening me up on loads of breads and pastries from Standard Bakery. Nick came by—twice—and thoroughly entertained me with his ever-quick wit; he knows me so well. Ann, Kevin, Russ and Susan brought dinner one night, helping me put a dent into my lonesomeness. Ann returned a few days later bearing gingercake and whipped cream for breakfast! Jen and Madeleine checked in, hung out and slept over. Maura, Matt and Lauren looked in on me several times and stayed at least short enough for hug and/or a drink and long enough for dinner. Mary walked Nellie when Calvin was recovering, Connie did some of my shopping and my new friend Sarah treated me to coffee. Our good-ole homies Luke, Sarah and Matt sent my sleep-deprived blues packing when they stopped by for a spell last Sunday night and turned my kitchen into an impromptu party. Lorry brought me some donuts, hugs, laughs and a smile. Barbara kept care of Calvin several evenings so I could saddle up to the bar and dine out with a few of my pals.

They cooked and cleaned and walked the dog. They brought me bourbon and pizza, homemade tamales and lentils and called on me often to ask if there was anything I needed. Without them, I’d have been hard-pressed to have made it a manless month without totally losing it to sleep deprivation, loneliness, monotony or Calvin's mania. Aviva, Kim, Lucretia, Teresa and Viv, I'll be sure to catch up with you soon.

Thanks y'all, from both me and Michael. Here's just one of hundreds he was able to take because you were here helping me cope:

click on photo to enlarge

Rio Grande, photo by Michal Kolster

manna from heaven

Around me all the colors burn bronze and copper except the evergreens, which are as deep and verdant as they were back in spring. Fading splotches of blood-crimson spatter smoldering stands of trees that edge the fields. When a gust comes up, dead leaves fall like huge yellow snowflakes carpeting the ground in a crispy layer of gold. I stand in the center of a lea where the wind, not quite cold not quite warm, fingers through my hair.

Around me, the young athletes with their knee-high socks and neon jerseys, jockey balls across the turf with great skill. I think of my son, now ten, just beginning to walk well enough for me to, at times, let go of his hand, his harness. Then I think of my mother whose balance is becoming as precarious as Calvin’s once was not long ago and I imagine the crisscrossing of their paths, hers dwindling ... and his? I remember as a youth being spry and sure and thinking I could do almost anything—climb trees, scale mountains, ski black diamond, tackle brutal waves, jump off of cliffs—and that my body would oblige. For some, like my son and my mother, every step is a risk and, if they were cognizant, perhaps a leap of faith.

Last night was another rough one, Calvin rousing every hour after three-thirty. I wasn't sure if his awakenings were little seizures, partly because he’d turn and wrap his arms around my neck before falling back to sleep, which he doesn't usually do after seizures.

When I put him on the bus I told Cindie, his driver, that he had had a good morning and that I had started him on a second kind of cannabis oil, one high in cannabidiol (CBD).

“I don’t even know how much to give him,” I told her.
“Try anything,” she said compassionately, then shut the doors and took off while my boy patted the window as if waving to me.
"Bye Calvin, I love you!" I shouted, as I do every morning.

I’m starting Calvin's new cannabis oil at a microdose, far less than all but one person have recommended. Less is more, I think to myself, and I remember all of the pharmaceutical drugs we've thrown at this little boy of ours and how I've always been so cautious, dubious and reluctant to increase doses too quickly or too much at once, even in the face of a doctor's recommendation. I know that this tack I’m taking by giving my son homemade cannabis oils to control his seizures is a leap of faith to some extent. But, like when I was young, I feel confident, sanguine, and I try not to be deterred by fear. Besides, what could be worse than the drugs he's already tried? Nada.

Around me acorns drop from the trees and I crush them beneath the heal of my boot. With each cracking husk I release a little anger, angst, frustration, which I feel bubbling beneath the surface of my own shell. Above me the clouds roll in displacing the clear blue and I wish it would just rain, wish it’d pour, and if it did I think I’d stand right out in it and let it drench me to the bone. I just want a new start, want to erase the years of damage that the seizures and the drugs have done to my son, wish I could know what he would have been like without them.

Maybe this cannabis is like a fresh start. Manna from heaven, I think, even though I don’t believe in heaven beyond the one I see in the night sky, in the amber, carmine and russet leaves falling around me, in my son’s blue eyes and the feeling of his fingers at the back of my neck, like the wind tussling my hair.

photo by Michael Kolster

batting a thousand

Unfortunately, of late I’ve been batting a thousand. As I expected, Calvin had a seizure after he went to bed last night. At three-thirty I awoke to his telltale raspy, constricted breathing, his arms and legs convulsing. I leaned into his bed and kissed him and told him it was going to be okay, then I ran downstairs to get his cannabis, both kinds. With a one-milliliter syringe, I drew up 0.25 mls of the new CBD oil that I'd made last night and 0.75 mls of my THCa cannabis oil. I crawled in next to Calvin and slowly syringed the oil inside his cheek, trying carefully to keep it from dripping out the side of his mouth. He struggled some, so I straddled him, cradled his head and embraced him for a few minutes until it seemed as though he was falling back to sleep.

I laid awake a couple of hours in the dim light coming from my bedroom; I'd left a light on so I could easily see Calvin's face. Just after five he startled, and by his chewing and swallowing sounds I knew he was having a second seizure, though this one not as bad. I gave him another 0.25 mls CBD oil. The seizure lingered then looked as if it wanted to become convulsive, so I grabbed the rectal Valium, which we’ve used just once in seven years, and I reluctantly prepared to give it to him just as the seizure was ending. Relieved, I put the cap back on the vial and set it on his dresser. Calvin woke an hour and a half later, but luckily not to a third seizure. I never went back to sleep.

I’m cautiously optimistic that this CBD (cannabidiol) oil, which is proving to be helpful to many children with refractory epilepsy, will also help Calvin. The THCa oil has already allowed him to go thirty to sixty-plus days without a daytime seizure while gradually weaning him off of over 50% of his benzodiazepine, clobazam. So, we’ll try giving him both oils since my gut and my research tells me that isolating a single cannabinoid might have a limited effect.

What seems clear is that we have to get Calvin off of his benzodiazepine. He probably isn’t at a therapeutic level anymore and his number of seizures, at least during a protracted withdrawal, have ticked up a notch. But, I’m leaving it alone while I titrate the CBD oil. One thing at a time.

In the meantime, it’s fifty degrees, sunny and gorgeous outside. I’m inside wearing sweatpants and a scowl on my face watching Calvin like a hawk and having to endure a replay of yesterday’s mania, which makes me wonder if we might not yet be out of the woods. The dishes are piling up, my hair is filthy, I’ve been awake since three-thirty and I have to deal with this kid by myself for the next three hours until he goes to bed. Quick, call the waaaambulance and make sure they bring a bottle of bourbon and a straight jacket. Make that two. Of each.

cbd here we come

Calvin is ramping up to a seizure tonight or tomorrow night. I hope this CBD honey, which I got from the wonderful people at our local dispensary, dissolves in the oil quick-like. He's a frigging lunatic as I write this—wound tight as an effing drum—and it's only day seven ... again. Ugh. Double Ugh. Figures, it's two days since the full moon.

Update: Calvin got some tonight!

somber day

Early this morning I woke in a groggy haze, still sleep deprived and worried more than usual about my son Calvin. He hasn’t been himself this past week having suffered a spate of seizures on Halloween night, a listless Saturday spent vomiting and several hours writhing in terrible pain the other night. None of it I seem to understand or have much control over. So, when I eventually sat down at my computer with a cup of strong coffee and read the news about yesterday's elections, I really felt ill.

Some of my friends are conservative, middle-aged or older white guys—good guys—but ask me if I like the fact that our diverse nation is mostly governed by them—our governors, senators and House representatives—and I'd say, hell no. We'd do so much better with a more diverse congress.

It is hard for me not to think about Calvin during political elections, to imagine what kind of young man he might grow up to be if things were different, if he hadn’t been born missing a hank of white matter in his brain, if he’d been able to talk, read, write and reason and all that goes with that, including being able to vote.

I like to imagine that he’d be no racist, no bigot, no sexist. He wouldn’t say appalling things about rape or call women whores like some die-hard politicians and talk radio hosts seem to enjoy doing. He wouldn’t be a fear monger or a hate monger. He wouldn’t be hell bent on restricting women’s reproductive rights under the “pro-life” banner then turn around and defend capital punishment. He’d support equal pay for women and the right of everyone to marry who they love. He’d understand and acknowledge his white male privilege and he'd give others the benefit of the doubt. He’d back common sense gun control policies which hurt no one and he'd fly in the face of fanatics who'd portray such as an effort to take people's gun rights away. He’d decry attempts to disenfranchise our poor, our young, our elderly, minority and female voters by condemning those bogus voter ID laws constructed on phony claims. He wouldn't believe that corporations are people and that money is free speech. He wouldn't hold the poor in contempt while voting to subsidize huge corporations and the likes of the enormously profitable NFL. We’d raise our son to be fair, compassionate and charitable. I truly believe he'd be all that.

After reading the dismal headlines I lamented that one of the many female candidates who ran, though regrettably one of the few who won her race yesterday, was a Republican hog castrater who aims to go to Washington to, in her words, “make ‘em squeal.” I wonder who she has in mind and how she got away with such unsavory rhetoric about testicles. Me thinks she listens to too much Rush, Limbaugh, that is.

To me, today feels like a somber day for so many women, a somber day for gay people, for poor people, for black people, a somber day for immigrants, for students, for the unemployed and for many more of us. I heard one winning candidate say, “It’s time to take our country back!” BackWARDS, I thought, to a time before Roe vs. Wade when pregnant victims of rape and incest died from botched abortions, to a time before the Voting Rights Act when minority voters were discriminated against at the polls, to a time where millions of fewer Americans had health insurance, to a time of failed trickle-down economics, when the banking and housing industry bubbles burst due to unbridled greed and lax regulation, to a time when illegitimate wars were fought over false claims and oil, to a time when my son could have been denied health insurance because of his preexisting condition, to a time of greater inequality.

I’m hoping that President Obama, in the face of congressional foes who have publicly claimed their promise to personally ensure his failure, which in turn hurts Americans (duh), can continue to make progress on immigration reform, can tighten corporate tax loopholes and reform tax policy so that the fast food worker isn't taxed at a higher rate than the millionaires and billionaires who rely on his or her service to profit, can raise the federal minimum wage, legalize gay marriage, demand equal pay for women, elect more impartial magistrates, can deliver health care to all Americans even when some Republican governors refused, can promise a decent education for all children regardless of their economic status, can continue his work on climate change, clean energy, infrastructure, jobs, can work toward legalizing medical marijuana, can level the criminal justice system, eliminate racial profiling and reduce the prison population. I really hope he can.

Yep, it's a somber day for many of us, but I'm heartened by the fact that there are plenty of progressive-minded people out there who want to move forward, not back. Next time we just have to get them to the polls.

Calvin, November 2004, photo by Michael Kolster

bittersweet again

Since my son’s birth ten years ago Halloween, my former favorite holiday, has soured into a bittersweet time of year. Though over the years I’ve had some fun dressing Calvin up in costumes—a pumpkin, a cowboy, a hippy chick, a clown, a manwitch—I’ve never taken Calvin trick-or-treating, never joined in our town’s Halloween parade, never taken him to a Halloween party. Photos on Facebook and the swarms of trick-or-treaters dressed in elaborate costumes knocking on my door make me swoon with adoration and sorrow. I have a love-hate relationship with the holiday remembering the ghosts of Halloween seizures past, some that put us in the hospital, others that sent me to the door with a bowl of candy and black tears running down my face. I recall the urgent and painful circumcision he had when he was two, meant to curb recurrent urinary tract infections that triggered his first seizures, and the nagging sense of loss over mothering a child with a chronic health condition which causes great pain and angst and limits all kinds of freedoms.



This year was no different as I watched my son spiral into his pre-seizure mania, a carbon copy performance of just seven days prior. As my mother-in-law and I doled out candy to the neighborhood munchkins, Calvin sat spinning in the middle of the floor, obsessed with his snapping fingers and oblivious to anything else. I wrote in my journal that day:



INTENSE. seizure coming. crazy, manic, hysterical. good walking. rash on chin. seizure breath. CRAZY BATH. FINGERING LIKE CRAZY. CRAZY @ DINNER. SEIZURE COMING.


I’d seen it on the horizon a few days prior when I'd logged in the journal, expect seizure within three days.



Halloween night was full of them. The second seizure, which was very convulsive, ripped me out of a deep and beautiful dream of a different time and place. The fit was likely followed by a handful of complex partial seizures which are difficult to discern, especially in the dark when I’m half asleep. All night long as I slept next to him, I was woken by the happy sounds of werewolves and goblins prowling down the street in front of our house while being tormented by my son's nightmarish seizures bubbling next to me in bed, all brought on because of a simple virus.

In searching for a photo to accompany this post, I came across many with Calvin in costume. In all but the ones in the years before the seizures and the drugs Calvin looks the same. His expression might be mistaken for a smile, but it is in fact a grimace. It is the look of having a headache or an upset stomach or of general malaise. The photos are bittersweet in that at first glance they look cute, but then the reality sinks in as a grave reminder of what is so grisly about a little kid who must endure this scary, relentless condition called epilepsy.

Calvin, Halloween 2009