breakfast bourbon

This morning I could’ve used a breakfast bourbon, you know, to take the edge off. Having woken several times last night to reposition a restless boy, I was up for the day well before sunrise listening to Calvin bang and screech and holler from his bed only to continue until I sent him off on the bus at quarter of nine.

Yep, a breakfast bourbon might’ve done the trick, or perhaps some of Michael’s homemade bourbon eggnog or a splash of Irish coffee. On mornings such as these I’ve impressed and amazed myself that I’ve never dipped into Calvin’s ready benzodiazepine stash. I guess I’m just not an addictive kind of gal, nor one who is looking to become addicted.

But I’ve acquired a taste for bourbon of late, seeing that my old standby of red wine has begun to give me headaches the closer I get to fifty—years old, that is, not ounces. I’d been looking for a replacement drink for a while. White wine, though it doesn’t seem to give me headaches, is too cold. I wanted something warm to accompany me through Maine’s long, frigid winters. Bourbon always seemed to bite, (and screwed up my face some as it went down), so much so that I never made it to that second sip. Besides, it has ice in it, which gave me goosebumps and made me shiver just to think of.

One day, about a month ago, I took that second sip off of Michael’s bourbon. And when it went down? That was some kinda hot shit. It tasted so good that I had to ask Michael, “Do you think I could ever become an alcoholic?” to which he replied, “If you’re not already I don’t think it’s likely.” I understood his retort to imply that with an effed up life such as mine, what with this impossibly crazy kid of ours, most anyone else would’ve been hitting the booze pretty damn hard by now.

And so, it is—and with my doctor’s approval—that I can enjoy a glass of my choice, sometimes two, nearly every night just to take the edge off. And it’s not always bourbon; last night I enjoyed a scant glass of my father-in-law’s homemade pinot noir and it did the job just fine.

As far as breakfast bourbon goes, I’ll be dreaming of it for now and, come the holidays, enjoying it to the utmost in the flesh.

grief is

Grief, with its infinite faces, rises up then swallows me whole, pulls me under like a rip tide. Fight it and drown in its grasp; surrender to its tangled current then dissolve into bits which, down shore, wash up onto a sun-drenched beach. I know.

Grief, I’ve been told, is a suicidal daughter, a dying child, a cancer, an empty cupboard, a parent forsaking their child. It is a failed crop, a starving nation, an innocent captive without a voice. Grief is a stillborn babe, a failed marriage, a suspicious glance, endless rejection, a miserable addiction with no clear escape. It swims amongst the throngs in cramped subways, steps between pounding feet on cracked cement sidewalks, buzzes around drunken heads like smoke in rooms as dark and lonely as grief itself, follows us into the woods.

Grief is a blown-off limb, a child riddled with bullets, a failed or broken dream. Grief is war and exploitation and abuse, a sickening social condition, an empty pocketbook gaping at its hungry family, the stubborn stain of dirt under rugged nails. It’s a dark apartment, a hospital room, a burning building, a putrid alleyway, a silent god. Grief is the black hole we all fall into, frantically scraping its sides for salvation. But like the old mule who fell into the well and whose cynics endeavored to bury, each handful of soil we scour is earth upon which to step until we can finally emerge.

Grief is a broken home, a traitorous mate, a dead parent, a failed venture, a misunderstood child, a sick lover, a strung-out friend, a lost soul, a lifetime of lies. It’s a black laden sky, a harsh sunlit field, a dismal twilight, the clink and sour stench of another empty bottle tossed into the corner.

Grief is a life full of seizures, a child with no future, a mountain of medication, the lines cutting into my weeping face.

But one thing grief is not is hierarchical. Grief is our own, named by us, as unique as the look on our faces. And when grief comes to us in its inky, sable, starless night we can crawl into it like a cocoon. We feel its close embrace and, with no denial, settle in for a time: a day, a month, a year, perhaps longer. We wear our grief until its thin web breaks into pieces and falls free, when the sun’s angle, once dismal, appears promising and bright.

Associated Press

two steps forward (video)

The following video was captured three years ago when Calvin was six. He was on a different drug regimen than he is today, which sapped his energy. Nowadays he isn't lethargic. Instead, he's non-stop, crazy energy. And though three years have passed, his walking has improved little if any. For Calvin, it's two steps forward one step back. He continues to be thrown off balance by the dizzying effects of the three anticonvulsant drugs he has to take. I wonder if he'll ever be able to walk safely by himself. That remains doubtful, unless he grows out of the epilepsy or unless we find a cure.

do for others

What you do for yourself alone dies with you. What you do for others and the world remains immortal. 

– Albert Pike 

friday faves - sick. lovesick.

Sometimes—often lately—I get sick of the whole damn thing. It all feels so ludicrous and pathetic while at the same time heart wrenching, tragic and miserable. I am sick of the seizures and the medicine. I get sick of Calvin’s idiosyncrasies; his incessant eye poking and staring at the sun, his wretched screaming, his constant drooling, his manic flailing and coughing. I get sick of him throwing everything on the ground as soon as we give it to him. I get sick of changing diapers. I get sick of his poor balance, of his inability to truly explore his world. I get sick of him trying to bite everything: tables, chairs, magazines, mullions and windows, his shoes, the car, the counter, the water faucet, the hamper, the bookshelves, his books and toys, the zipper on his coat, his glasses, his bed, me. Sick, sick, sick of it all.

And though Michael has helped me begin to understand that I may have some sort of superhuman patience and the ability to maintain calm vigilance over these things, I often don't feel like I do. At times I get so sick of it all I just have to scream at the top of my lungs at the whole sorry situation. While it doesn't seem to faze Calvin it does me little good but to feel wretched, but then—too late—I look at my beautiful boy who can't talk and is on massive antiepileptic drugs, and am reminded that he can't always help himself. In an instant all of my feelings of anger, self-pity, annoyance and tension dissolve into tenderness and love. For all of his peculiarities and quirks Calvin is a darling. He’s pure through and through, lovely and affectionate. There isn't a cruel or malevolent bone in his body, rather, he strives to do his best to please in most any circumstance, (though is developing a stubborn streak.) But I couldn’t ask for a finer son who shows me every day how I can be a better person.

Originally published 11.30.10.

June 2007

spread the word (video)

Isaac Asimov authored one of my favorite quotes, "Never let your sense of morals get in the way of doing what's right."

 
This amazing video demonstrates why we must urgently push for medical marijuana to be legal in every single state, bar none. There is no excuse to do otherwise, though big Pharma will likely use its arsenal to hire lobbyists and put money into the pockets of certain small-minded, power-hungry, fearful congresspeople.

It's a crime that our children have to suffer thousands of seizures and succumb to debilitating cognitive deficits because of those seizures and the heinous side effects of toxic pharmaceuticals, which by the way don't work nearly half of the time, and all in the name of ignorance, priggishness, greed and fear.

Do what you can, people. Spread the word. Educate. Do what's right. And if anyone in Maine wants to breed marijuana plants tailored to the needs of children with medically refractory epilepsy, please do!

whole ball of wax

Later today I am taking Calvin to get (yet another) X-ray. In his nine years he's had X-rays of his hips, his lungs, his kidneys, his bowels and of his brain. I declined the offer to X-ray the growth plates in his hands to determine if he was going to be a person of small stature. I didn't care. In fact, we hope he will be a person of small stature because we can't quite wrap our heads around taking care of a six-foot tall Calvin who we have to spoon feed, bathe and diaper or—worse—try to get out of the bath when he is having a seizure.

Today's X-ray will be of his chest to see if he might have developed a hiatal hernia, the possible cause of his excessive hypercough. After more than a year of his disturbing hypercough we have finally decided (we think) that it is not behavioral but rather some sort of acid reflux. But past efforts to treat the reflux have either induced seizures or have failed miserably or eventually. The only way to get a conclusive diagnosis of reflux—and/or to see if he has developed esophageal ulcers or cancer as a result—is to do an endoscopy and a 24-hour pH probe for which Calvin must go under general anesthesia, always a risk for a kid like him.

It pains me to think that my poor kid has been walking around for months suffering discomfort with no way of telling us what is wrong at the same time enduring all the other side effects from the awful antiepileptic drugs he has to take every morning and night. The drugs cause so many loathsome problems like headaches and nausea and constipation and dizziness and ataxia and memory problems and lethargy and hyperactivity and insomnia and double vision and lack of coordination and, likely, reflux. But with a kid who can't talk, pinpointing the irritant and its root are a guessing game at best.

Hopefully soon we will have some answers, even if we have to put him under. I regret not doing these tests sooner, but with Calvin we are always doing something—making some change or another—to his regimen in an effort to thwart his seizures or calm his nerves or protect his kidneys or enhance his attention or soften his stool or ease his sleep or recoup his appetite or heal his rash or curb his mania or boost his immune system or improve his balance. I always say, "If it's not one thing it's another," but truth be told, with Calvin, it mostly feels like the whole ball of wax all at once.

disparity

According to the CDC, as many as three million Americans and their families suffer from epilepsy. One in twenty-six will be diagnosed with epilepsy at some point in their life. Chronic childhood epilepsy can result in severe developmental deficits due to uncontrolled seizures and drug side effects. More Americans—including our children—die every year from epilepsy than from breast cancer. These are just a few of epilepsy's heinous statistics.

Epilepsy affects three times the number of people that have Parkinson's disease (nearly all of whom are adults) yet annual NIH funding for epilepsy research does not reflect that discrepancy.

The disparity illustrated in the colored graphs below is indefensible, and is likely due to a variety of factors including epilepsy's long and recent stigma, its myths and misconceptions, its lack of a celebrity advocate, and its lack of general advocacy due to discrimination, marginalization and ridicule that epilepsy sufferers and their families fear.

Please help level the playing field in any way you can. Share this story and/or give to CURE epilepsy at: http://www.calvinscure.com

summer crush

My summer crush was fourteen. I was old enough to drive. Our swimmer’s hair, like shining metal, laid against the back of bronze necks. A pair of young, toned bodies, lithe and smooth, we slipped through water like eels. Sometimes we swam close enough to touch, and tossed a yellow ball, each palming it after the other.

We never spoke about it, didn’t have to, my green eyes revealing a summer crush reflected in his warm gaze. It was our secret. We held hands when no one was watching, stole kisses in the trees. I never told him that I loved him, but perhaps I did. Perhaps he felt the same. I'll likely never know.

We gave each other gifts of toys and jokes and knowing smiles. He was smart, talented. I was confident, funny and artistic. We made a nice pair, I thought.

Some nights—now and again—I still dream of my summer crush, and it feels exactly the same—the fondness, the want. I wonder if he dreams it, too. But then I wake up to sadness and loss. I realize my Calvin will never be a boy like that, never be a boy who dives with such grace through an imaginary hoop in the water, never be a boy who has a secret love, never be a boy who feels the rush of young desire like a quick and exciting summer squall.

So much time has passed, but I'll never forget those summers when I was a youth.

These days, though, I feel that same, unmistakable kind of forever crush every time I look into my my husband’s eyes, which are bright and blue as a lovely august sky.

photo by Michael Kolster

wretched wave

It’s been coming, for three days now. I was sure it’d be last night. He writhed and pitched and screamed on its horizon. Outside in the still, the grass grew greener, the crows tossed tufts of it, stabbed mealy grubs and swallowed them whole.

And so, it came, like a gigantic rolling wave. I held his clammy hands as he knelt staring at a row of books, and I knew the wave was cresting. I looked into his face, frozen and pale as a winter sky, not like a child at all.

He turned blue as the wretched sea in which his brain was drowning. I called to him from afar though my lips brushed his cheek. I shouted, “come back to me, Calvin, come back,” but my boy was already under. I kissed the warm soft of his belly, told him I’d take good care of him, told him I was right there.

Salty tears rivered into my mouth when my boy finally took a single breath, and though the coral blushed back into his lips, his eyes remained mere glass pools. From the abyss he startled like a baby, hit me in the face with the back of his hand, looked as if he’d seen a demon and wanted me to save him, but I could not.

Slowly, the torrent calmed and he came to, rubbing sandy eyes. I carried him upstairs in my arms, my little merman with skin soft as an oyster and eyes as blue as sky and sea.

photo by Michael Kolster

zombies

Yesterday I walked around like a zombie, my eyes heavy and red, the burden of events both recent and persistent weighing on my soul like sagging flesh and soiled clothing. I spoke with my husband while trudging down the street with Rudy, tears in my eyes for a boy who for years it seems has been hyper and coughing and irritable and whose seizures are occurring with greater frequency, tears for never knowing why or how to make it all better.

I'd listened to all the talk on the radio of the young bombing suspect whose brother had been shot. Everyone—his friends, the journalists, the experts—were all speaking of him with such certainty of his guilt. Is the evidence that irrefutable? I wondered as a queasy feeling of disgust and shame churned in my stomach. Am I the only one who thought it strange that, after public officials had lauded Boston for being a tough, resilient city bent on preserving its freedom, they shut down the entire place because of a single man? What does that say to would-be terrorists whose actions can produce that kind of psychological impact?

At home my boy dropped to the ground, whined, coughed, poked his eye, stared at the sun and dropped some more, my frustration growing with each stubborn collapse. I sensed a seizure coming on at the same time knowing that there was absolutely nothing I could do, no controlling it. In a cloud of self pity I cussed and grumbled about my inability to go places with him, truly enjoy myself and feel free. I lamented my relative inability to take family vacations with him or with Michael alone. I dreaded my continued incarceration and thought:

Will I be caring for Calvin until I'm old and grey ? Be steadying him as he walks until I die? Be guessing at his chronic ailments and woes until the end of time (my time or his?) Be spoonfeeding him his seizure drugs and meals and changing his diapers for the rest of my life? Be watching his seizures forever? Be hemmed into this sorry existence for the rest of my dying days?

While meditating on my own captivity, I looked at countless shared snapshots of smiling friends and families traveling the world and enjoying the great outdoors. Then I thought of all of the families in Boston sequestered to their homes during the lockdown. Perhaps they, too, were experiencing cabin fever as I often do. Perhaps they were bemoaning their lack of freedom, their miserable mix of anxiety and boredom and worry and claustrophobia. Perhaps they were trudging around with desperate black stares and an insatiable hunger for life like we zombies are known to do.

Zombie mom at Massachusetts General Hospital, Boston

friday faves - get busy living

I was reminded of a saying the other day that I like a lot: “Get busy living or get busy dying.” Hearing it made me think about my parents and how they taught me, through their actions as much as through their words, to be productive, keep busy, make the most of my time, of this life.

When we were kids and were old enough to work my father gave us a choice, “you can get a job, do a sport or work in the yard.” Somehow we got roped into all three. I have to say that, though I pretty much detested weeding and gathering fir cones off the gravel driveway and hand clipping the grass around the swing set posts and trees, and though I loathed going to swim practice knowing the pain and suffering I faced, and though I might have preferred hanging out with my buddies instead of going to work, I followed the example that my parents set for me because I knew they were right, they made sense. They were no slackers, and I didn't want to be one either.

The six of us kids didn’t get an allowance, we were just expected to pitch in and earn our keep, which, once my father explained it to me, made a lot of sense. At a young age I learned that hard work paid off. When I turned eleven I bought my first bike, a sleek sparkly blue Peugeot ten-speed. It cost me $118 way back in 1974, purchased with money I had scraped together from babysitting for a wage less than a dollar an hour. When I was fifteen I got my lifeguard certification and soon after completed a course to teach swimming lessons. I put myself through college, with minimal help from my dad, by lifeguarding, teaching and coaching swimming. I’m very proud of that and I know my parents were, too.

So now I am the parent, and as Calvin’s mom my job has become physical therapist, occupational therapist, speech therapist, nurse, epilepsy advocate and blogger. And though these jobs are all-consuming, and though I have the help of my husband and a part-time nurse, I still find myself yearning for more hours in the day to do all the things I want to like gardening, walking Rudy the dog on the beach, being with my husband, writing more, reading, hanging out with friends and talking with my long-distance loved ones on the phone. But I do as good a job as any at packing in as much of it all as I can. And it goes almost without saying that Calvin is a workhorse just like his mom, his dad and his grandparents, putting in his best effort on days that he feels good.

I remember once, when I must have been in junior high school, asking my mom if she was mature. She told me that as long as you live—and if you consciously want to—you keep growing and maturing and learning new things. So I want to do it right, make the most of this life—not sit on my butt like some couch potato, some slacker—want to improve myself. Otherwise, I may just as well get busy dying.

Version originally published 09.13.11.

a world to wish for

I wish I lived in a world where hatred’s embers languish, where there are no bombs nor people who would want to ignite them, where little children don’t get blown away by a rash of bullets from ridiculous guns in the hands of disturbed boys and men (and perhaps even women) and where people understand that with time things change and so, too, should our attitudes and actions.

I wish I lived in a world where there is a cure for epilepsy and cancer and Parkinson’s and Alzheimer’s, where my child doesn’t suffer, where there are no seizures for people to make fun of, where folks aren’t neglected, ostracized and marginalized.

I wish I lived in a world where there are no prisons swelling with the nonviolent, the innocent, the targeted masses, a world where all people are treated equally, where education and healthcare and marriage are truly seen as civil rights, where corporations aren’t considered people, and where the poor aren’t unfairly regarded with mistrust and contempt.

I wish I lived in a world where those with abundance gladly share more with those in need, where there is no such thing as fearmongering, where no belief system is deemed more righteous than another, where greed, privilege, oppression and the lust for power dissolve into compassion and empathy and where we aren't stuck in the past living by antiquated rules and ideologies.

I wish I lived in a world where more leaders lead by courage and conscience rather than being pushed by fear and greed, a world absent of war and guarded borders, where women and minorities aren't harassed, where the underprivileged are given more of a chance, where bigotry doesn’t exist, and where “difference” is not merely tolerated, but rather, embraced.

I wish I lived in a world where my son could simply run and play and talk and dream and tell me of a world in which he'd wish to live.

photo by Michael Kolster

two wolves

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, and truth." 

The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Ghost Heart by Kirby Satler

still one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside looking in. And always, with regard to the world—the universe—I am forever humbled.

But when I heard of the bombings in Boston yesterday, not knowing whether the perpetrators were foreign or domestic, I thought of all of the hate that exists in the world and wondered, why? Then I was reminded of these quotes:

 How vast those Orbs must be, 

and how inconsiderable this Earth, 

the Theatre upon which all our mighty Designs, 

all our Navigations, 

and all our Wars are transacted, 

is when compared to them. 

A very fit consideration, 

and matter of Reflection, 

for those Kings and Princes who sacrifice the Lives of so many People, 

only to flatter their Ambition in being Masters of some pitiful corner

of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

Alex Churney, A Milky Way Shadow at Loch Ard Gorge

 

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

Boston Marathon bombings, April 15, 2013 photo by John Tlumacki, Boston Globe

rolly’s diner

Rolly’s diner kills me every time.

We arrived early and were seated at one of the few available tables, one in the far corner near the windows. We carefully threaded our nine-year-old son, Calvin, into an infant high chair next to Michael. I sat across from Calvin feeding him snacks as he banged and arched and squealed and coughed. An elderly couple was seated next to us, though within minutes—and not surprisingly—opted to move. The woman, wearing her Sunday best under a silver coiffure, got up to leave and told us, in a kind, French Canadian accent, that Calvin didn’t bother her, that it must be hard for us (with a kid like Calvin) and that she was sorry. Michael and I both smiled in appreciation.

As Calvin continued his antics, I fed him cut-up pieces of strawberries, breakfast sausage and almonds. I was glad my back was to the restaurant. I wasn’t in the mood to witness copious diners gawking at our crazy kid. Between bites, Calvin reached over to give his dad hugs. I glanced back to see where the couple had moved to and caught the gaze of another woman, probably in her late seventies or early eighties, with a tame, dark blonde hairdo that matched her ensemble. Within moments she appeared at our table, the soft scent of her perfume like rosewater radiating from her beige sweater. She leaned in to tell us what a wonderful father she thought Michael was then added, “and he's handsome, too.” She went on to ask Calvin’s age then we told her about his deficits, his epilepsy, the drugs he has to take which seem to make everything else worse. She said that her youngest son, now fifty-two, had worked for years with developmentally delayed children and adults at Pineland, a nearby facility since converted for recreational use. She mentioned how he has no children of his own because in his words, she explained, “he’s had plenty.”

Though her visit was brief we learned that she was twice widowed, has kept both of her husbands' last names, has four children plus three step-children who treat her as if she is their mother. She showered Michael and me with more compliments about our parenting skills, to which our eyes moistened and brimmed. Then she squeezed my arm and told me how lucky I was. I touched her hand, which was warm and soft as rose petals and I said, “I know.”

After we learned that her name is Irene, she left us to finish our breakfast. When the hostess came to warm our coffee she told us that our bill had been paid by someone who had admired our patience with Calvin, someone who had already left the restaurant. As the words came out of the hostess' mouth, we quietly wept then dabbed our tears away with Calvin’s ratty washcloths—not the first time we've cried at Rolly's.

While Michael finished his meal I scooted in next to Calvin and he turned his focus to me, wrapping his arms around my neck and slipping his little hands down my collar to rub my back. Out of the corner of my eye I saw the first woman standing next to me again. She leaned down and, in broken English, said how sorry she was for us and that she hoped that it would change. “I like kids,” she said, “even other people’s kids,” to which I smiled.

As we gathered our things Irene came over. I took down her address so that I could send her this post in the mail. She told us that if we are ever in her neighborhood we should stop by. “I have a big house and I live alone,” she said, then gave me a warm, motherly embrace and added, “I love you guys.”

On the drive home I asked how Michael felt having our meal paid for. He said it was nice, but then paused and described some slight unease being the object of someone’s pity. “Pity gets a bad rap,” I said, and went on to explain that feeling sorry for another’s situation and wanting to do something kind for them is nice. “Pity doesn’t mean that we are being looked down upon,” I added, then sat silently happy for the rest of the ride home smelling Irene’s rosewater perfume on my cheek.

photo by Michael Kolster

eye on the ball

If you’ve ever tried running a three-legged race you might have a bit of insight into what it’s like going about my day with Calvin. He and I are like a conjoined twins. Although we are not joined at the hip, we might as well be, tethered to each other the way we are all throughout the day.

Calvin, who is nine, cannot walk by himself without the risk of tripping and knocking his teeth out, running into corners and walls with his head or falling down stairs, likely due to the antiepileptic drugs he has to take that make him dizzy. So, I’ve got to keep my hands on him, or his harness reins, at all times. If I try to do two things at once, like pour myself a glass of water or hang up my coat, I risk dropping him if he tips off balance when I'm not ready. I’ve got to keep my eye on the ball, so to speak, like my dad used to tell me when teaching me how to catch a ball or how to swing a racket or bat.

I remember when a close friend came to our home for a visit. He arrived out of sorts. He went on to explain that the neighbor’s child, while holding his infant son in her arms, had accidentally dropped him onto the paved driveway. The baby had been squirming and simply got away. At the time, even though I could see his grave concern over the incident—his sickly expression at recounting the event—I couldn’t quite imagine what was so upsetting, because I had no children of my own. The fall was only a couple feet, after all.

Now, I know all too well what a tumble like that can mean, especially for Calvin since he's getting bigger. Taking my eyes off of him for one second can result in a bad fall. Years ago, when he was much smaller, while two of his nurses were chatting together, Calvin between them just at their feet trying to stand up, he suffered a bloody, swollen nose when he unexpectedly pitched forward, neither of them holding him as they were locked in conversation, and he slammed his face into the floor.

Luckily, Calvin’s bad falls are few and far between and it is because we—Michael, the nurses and I and his one-on-one at school—are on constant alert, our focus being on Calvin's safety, and little to nothing else, as he motors around the house like a little drunken sailor sporting a bobblehead. And all the while my dad's voice is ringing through my brain, "keep your eye on the ball."

Version originally published 09.08.11

love you so much

I love you so much ... I probably don't even know how much because you're such a pain in the neck ... but I do love you so much.

friday faves - good husband

Michael cooks, he cleans, he shops for groceries. He brings home the bacon and pays the bills. He finds the music and plays it. He pours me wine. He's an amazing dad to an impossible kid (though impossibly adorable.) He gives me loving smiles. He says “I’m sorry.” He does the laundry. He changes the oil. He looks good in an apron. He makes me very, very happy.

He plays vinyl records—loud. He takes me to dinner. He's my best friend. He has a great sense of humor. He gives me compliments. He's very forgiving. He laughs at my jokes and gets me to laugh when the world looks black to me. He takes incredible photographs. He's compassionate and generous to those less fortunate. He's a progressive thinker. He views the world in ever changing ways.

He works harder than anyone I know. He gives Calvin tons of hugs and tickles and kisses. Although he has an amazing vocabulary he likes to drop the F-bomb about as much as I do. He teaches me plenty and willingly learns from me. He recognizes his limitations, which in my estimation are few. He loves his parents. He loses at cribbage. He rides a vintage motorcycle in a cool brown distressed leather jacket. He fixes anything and everything. He is humble, yet confident.

He digs Frank Zappa. He's one of his students’ very favorite professors. He makes strong coffee. Kids and animals love him. He paints things. He reads interesting books. He has super friends. He enjoys simple pleasures. He wrote the music and lyrics for a song on his guitar and he plays it over and over. He loves me unconditionally. 

I couldn't imagine raising Calvin with anyone else but Michael.

Version originally published 4.27.11. 

photo by Tim Diehl

reasons my son is crying

To date, it appears that there are forty-two documented Reasons My Son is Crying, each accompanied by a pitiful, often blurry photo of a cute, snotty-nosed toddler. Not my son, mind you, rather the blogger’s son, neither of whom I know. The shared link on Facebook intrigued me, so I clicked on it and scrolled down through most of the photographs of the crying child, reading captions such as, “He is out of pretzel sticks,” and “He asked me to put butter on his rice. I put butter on his rice,” and “The milk isn’t juice.”

Thinking of my son Calvin, who had just suffered a five-plus minute seizure a day or two before, made it hard for me to find the humor most obviously intended by the blog's author. In fact, as I scrolled through the photos I realized that the child might perhaps cry seeing himself in such a state on the Internet, thus creating yet another photo op for his parent.

Calvin doesn’t cry much anymore, though that hasn't always been the case. As an infant he’d cry for hours and we never knew exactly why, though we figured it was either intestinal discomfort and pain or perhaps over stimulation of his partially formed brain. He has cried from falls and bumps to the head, and he cried when he knocked out a tooth. He has cried when needles prick him in order to draw blood. He has cried when he has had twenty-eight EEG leads glued to his head then peeled off a few days later. And he has cried after countless seizures.

Tuesday night shortly after I put Calvin to bed I heard him crying and sputtering. I leapt up the stairs where I found him strangled by the netted canopy that we’d fashioned to keep him from falling out of bed. Somehow he’d gotten his head stuck in a narrow space between the edge of the canopy, the footboard and the safety panel. He must’ve been trying to bite the netting because I found him gagged like a character in some Quentin Tarantino film, his frantic writhing causing the net to somehow wind around his neck. He was bound so tightly that with all of my strength I still could not release the anchor loop from its hook because there was no give. Frantic and trembling, I quickly unlooped the backup cord which was tethered to one caster, allowing enough slack in the netting to ease the noose around Calvin’s neck. As I loosened the cords, scooped him up and rocked him in my arms—this little defenseless kid of mine—we cried and cried until time eventually eased the trauma. Luckily, beyond suffering great fear and pain, he sustained only minor contusions at the back of his neck.

Shortly after I put Calvin back to bed (sans netting at that point) I had a resentful, though not completely justifiable, flashback of the photo blog. It made me wish for a child who cries about spilt milk, for one who cries about sharing his toys, who cries because he can’t eat candy off of the floor, who cries because his brother’s boots don’t fit him, and who cries for no apparent reason at all.

But later, when I had gained some distance and perspective, I went back onto the blog and was able to get a little appreciative chuckle for the trials of a typical toddler and his witty parent.

EEG 2006

I love:

the office nurse who offers to help when she sees I’ve got my hands full with a hyperactive kid.

the college kids who walk past and greet me with a smile and a hello.

the employees at the grocer who regularly ask after Calvin.

the teachers and therapists who love my son.

the doctor and the nurse practitioner who rack their brains about how to help Calvin feel better.

the man who walks past every day and gives old Rudy a pat.

the husband who always makes me laugh when I am grumpy.

my in-laws for their love and support.

the thoughtful messages from friends new and old, near and far.

the strangers who smile at me as I hobble past with Calvin.

Rudy.

my girlfriends and boyfriends, to the end of time.

the home healthcare nurse who is kind and gentle and loving to my boy.

the children who ask how Calvin is doing.

the bus driver and the ed techs who seem to feel my pain.

my family.

the people who have helped raise funds and awareness to find a cure for epilepsy.

my therapist for validating my emotions.

 the college community.

my mom who can still comfort me in my despair.

Charlie and Roger and Herr Doktor and the Diegos—and the scores of others like them—who show deep compassion and understanding for our family and who bring levity into our lives.

the women and men whom I’ve never met but have become kindred spirits nonetheless.

Susan and her colleagues for what they do at CURE.

my boy Calvin who makes me want to be a better person.

strange pull

Let yourself be silently drawn by the strange pull of what you really love. It will not lead you astray.

—Rumi

cold april day

As I walked into the open field with Rudy I began to cry. The diamond was flanked by fans dressed as I was in their long down coats, hats and scarves that belied the sunny April day. Behind the outfield barrier two boys no more than five or six tossed a ball and ran around an imaginary diamond of their own. I thought about my brothers' baseball games when I was a kid. I never watched them with my mother. Instead, I scampered around under the bleachers with friends making jokes about Seymour Butts and eating frozen MilkShake candy bars purchased for ten cents at the concession stand window. I could roam where I wanted. I was free. I was healthy.

As the two boys played tag, the littlest outpacing the older one in a burst of energy, I thought of how I'd been small and quick and how Calvin might've been too. And with that thought my throat thickened and ached watching the boys do little boy things with confidence, agility and freedom. Not my Calvin, I thought, never my Calvin, and I cried into the scruff of my jacket thinking of what a good mother, good coach, I'd have been for such a boy if he were mine.

My tears were as much for me as for Calvin who was at home spinning like a top at the fingertips of a new nurse who I'd spent the day training. I felt guilty leaving the house since, because of Calvin's increased mania, I'd been expecting a seizure for over a day.

At home I got Calvin into his high chair for dinner. As I chopped some chicken and Brussels sprouts I replayed the day in my mind—Calvin's quiet morning, his odd shriek at the end of a frenzied bath, his low-grade temperature, his raving, his pale face and flushed cheeks and space-outs in the car—all repeats of the day before. But after a decent dinner, a poop and a diaper change, I escorted a much calmer Calvin downstairs, walking down backwards in front of him holding his harness to prevent a fall. I praised him for his enterprise and was rewarded by his gleaming smile that dissolved orange-pink into my heart. But then something snapped. His eyes blinked and froze into an upward gaze as if he'd seen a ghost. Calvin stood paralyzed on the steps like a statue. I knew that what I'd been dreading had arrived, so I picked him up and carried him to the couch. He squirmed in vain to free himself from the seizure's grip as it took hold sending tremors from his head down to his little white socks.

No matter that I've seen my boy have hundreds and hundreds of seizures, I'm always surprised and distressed by the kind of violet that stains his fingers, hands, toes, ears and lips. It's beautiful and horrible. The shade of bloom and death. The color one fears will never fade to blush. The color no mother of a beautiful child should be reminded of when the tips of purple crocuses come up on a cold sunny day in April.

sacredness in tears

There is a sacredness in tears.
They are not a mark of weakness,
but of power.
They speak more eloquently
than ten thousand tongues.
They are the messengers of
overwhelming grief,
of deep contrition and of
unspeakable love.

—Washington Irving

AEDs

Recently, I spent part of a day reading through Calvin's journal—day by day—where I record things about his behavior in an effort to see if I might notice a pattern due to his various AEDs (anticonvulsant drugs). This is what I found:

On Clobazam alone:

eye poking

lots of inappropriate laughter

hands on ears

screaming in car & grocer

happy bath

sleeping well

decent seizure control

good walking

HUNGRY

space outs

flushing

fingering

crazy @ lunch and dinner at higher doses

On Clobazam with the addition of Banzel:

good appetite

manic after meals lunch and dinner

flushing

poor sleep

active baths

efficacy unclear. increased seizures at higher dose?

space outs

eye poking

fingering increased

SCREAMING

irregular sleep and hard going down

non-stop moving

gassy (burps)

poor gait

When the seizures slowly increased we added a third drug, Keppra:

poor appetite

HYPER

extreme weight loss

fewer seizures

irritable

no eye poking

improved sleep

WIRED

lots of seizures in March 2011

prickly rash on butt for weeks

HYPER

hands to ears

poor balance 

And, every morning and every night when I have to give Calvin six to nine anticonvulsant pills, I become sick to my stomach, too.

friday faves - life just is

Recently, in a conversation seemingly about spirituality, a man told me that my son's afflictions exist so that he and I can learn something for our next reincarnation. I took it to mean that Calvin's suffering is intended to teach us both some lesson. I debated with him and, as nicely as possible, told him that I thought his theory was bunk and that no child should have to suffer simply to teach someone a lesson. I went on to suggest that if he had a child like Calvin, or a child with a chronic or terminal illness, he might feel differently. He had no reply.

It’s not uncommon for people who meet me and learn of Calvin’s hardships to say, “everything happens for a reason.” I usually try hard to suppress my disdain for what I believe to be an erroneous, though well-intentioned, theory. My response is simply to tell them that I don’t regard the premise to be true, but rather, that I to choose to construct meaningful outcomes from life’s experiences, much like choosing to see the glass half full instead of half empty.

Another phrase I have heard often over the years is, “life’s not fair.” I never really cared for this assumption either. It has always seemed to me—even when I was a child—that life is neither fair nor unfair. Life just is, or as some might say, “shit happens.”

Some may hold fast to these beliefs perhaps to find solace in the presence of suffering, to somehow understand why suffering occurs at all, and to make sense of something so utterly senseless as a profoundly ill and debilitated child. And although I myself have wondered at times why Calvin is so afflicted—at the same time wishing he were not—I find no comfort or faith in the idea that some greater purpose has been designed that requires it of him. Rather, the knowledge and conveyance of this belief, especially by those who do not know what it is like to love and care for a child who suffers such extensive disorders, honestly turns my stomach.

I have no want for that kind of solace, in fact it's not solace at all. I need only to be there for Calvin and to put all of my effort into finding a way to lessen or stop his suffering. I could choose to wallow in self-pity over my sick child while trying to console myself with some feeble, perverse notion in an attempt to put it all into some sort of neat context that explains it away and makes it all okay. Instead, I choose to seek out and underscore all of the incredible things that I experience because of Calvin, and simply be content to know that he is who he is, not owing to some deliberate plan or design nor because he exists in this condition to teach others a lesson. And since life just is—which resonates deep within my bones—and while I am here, I will make the most of it as it keeps coming my way.

Version originally published 11.26.10.

photo by Michael Kolster

thank you dr. king

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

I believe that unarmed truth and unconditional love will have the final word in reality. This is why right temporarily defeated is stronger than evil triumphant.

—Reverend Dr. Martin Luther King, Jr. 

Forty-five years ago today civil rights leader Dr. Martin Luther King, Jr. was killed by an assassin’s bullet in Memphis. His message continues to resonate for all, but particularly for those who continue to be discriminated against, maligned, neglected, hated and/or suppressed: women, people of color, gay men, lesbians, bisexual people, transgender individuals, immigrants, veterans, homeless people, the poor and the disabled. Thank you Dr. King for your ongoing contribution to the betterment of society.

Image from the Library of Congress

seven weeks

 

photos by Michal Kolster

ask for what you want

Yes, I have hope. And I guess I'm some sort of an eternal optimist, sometimes seeing only small points of light but ones that vibrate and grow and warm my despair.

Michael warns me that there is no silver bullet when it comes to Calvin, but I have to keep looking for it because it just might exist.

There are some people who drive to an event in a busy city and park six blocks away because they think that’s the best they can do. I always look right out in front first and inevitably there’s a big fat juicy watermelon—you know, a primo parking spot—just waiting for me. In San Francisco my friends told me I had amazing parking karma. I always figured that—besides driving a sweet 1967 mustang 289—it was simply because I looked for exactly what I wanted instead of settling for second best without even trying.

The same might not be true with Calvin's health—with his epilepsy—but if I don't look for that silver bullet, I most assuredly won’t find it.

photo by Michael Kolster