friday faves - wake up

I wake up in the morning, roll out of bed and stub my toe—the bad one that I jammed last summer that still isn’t quite up to snuff. I stumble to the bathroom and catch the door jam with my shoulder, eyes not quite open yet, brain still in neutral. I look in the mirror, and although I'll be fifty years old in the fall, I think I see a pimple on the end of my nose, though I’m not quite sure because I can barely see that close anymore without my reading glasses.

I go get Calvin out of the crib, set him on the changing table and undo his diaper. Like a water fountain, an arch of warm liquid gold hoses me down. He almost never does that. Oh well, there are worse things. I help him get dressed and we head down the stairs as he grabs my nose—right where the pimple is—yanks my hair out and pokes my eyes all with utter lovingness. It’s been too long since I’ve clipped his tiny razor sharp fingernails and I feel it, like when I used to teach swimming lessons to frightened little kids who'd dig their nails into my chest.

Downstairs, I plop Calvin into his high chair and pinch my finger in the tray locking mechanism that doesn’t even work anymore so I have to jam a knife into it to make it stay in place. If I’m lucky, making his meal is uneventful. As I feed him and give him his seizure meds, my legs straddling his chair, he extends a foot into my thigh and pins my skin between his rubber-soled slipper and the wooden chair. Then he kicks the bowl of fruit out of my hand, the blueberries erupt and scatter on the ground for Rudy to suction up in mere seconds—that is, if I were to let him.

After breakfast is over I brush Calvin’s teeth. He bites the plastic bristled brush like a pit bull then suddenly lets go and a spray of toothpaste splatters into my face. With stinging, bleary eyes I unbuckle him and take him to the bathroom to play with the shutters. I catch a glimpse of myself in the large round mirror. Good thing I don’t take myself too seriously what with my tangled mess of hair—some gray, some missing—and bloodshot (toothpaste-shot) eyes. I haven't had nearly enough coffee, I've got blueberry stains and yogurt all over my robe and a big raspberry on the end of my nose that I can see clearly now that the sun has risen and Calvin has made his very best attempt at waking me up.

Version originally published 08.31.11. Some things never change.

2011

the patience of ordinary things

It is a kind of love, is it not?
How the cup holds the tea,
How the chair stands sturdy and foursquare,
How the floor receives the bottoms of shoes
Or toes. How soles of feet know
Where they're supposed to be.
I've been thinking about the patience
Of ordinary things, how clothes
Wait respectfully in closets
And soap dries quietly in the dish,
And towels drink the wet
From the skin of the back.
And the lovely repetition of stairs.
And what is more generous than a window?

—Pat Schneider

photo by Michael Kolster

clover (video)

While surfing Facebook last Friday I came across two photos, one of a purple clover, the other of a beautiful little girl with the inscription, "In loving memory, Clover Dohman 6/23/09 - 5/23/13." Knowing that purple is the color for epilepsy awareness I Googled Clover's name and found this video, which reminded me some of the first year or so after Calvin's diagnosis, and is a testament to the often overlooked fact that epilepsy is menacing and can often be lethal.

My heart goes out to Clover's family and to all children and their families who suffer the scourge of catastrophic epilepsies. Do what you can to raise awareness and funds for a cure.

men i’ve met

Roger (his name has been changed to protect the guilty) came over with a bag or two full of groceries that I needed. He brought Puffins, avocados, milk, half ‘n’ half, bananas, almonds and—oh—a bottle of my favorite bourbon, a lemon and some bitters. He mixed me up an old-fashioned right there on the spot, on a Sunday night ta boot. We sat and shot the shit about beverages and family and aging and dignity and marriage and then he went home to his wife and kids. Calvin, sick and having had a long seizure on Saturday, was upstairs snoring as the clock stroke nine; Michael, out of town.

I’ve been thinking lately about the men I’ve met. Some, quite rare and wonderful, I’ve met on my own over the years. They live in places like San Francisco, Seattle, Corvallis, England, New York, North Carolina, Texas and Maine. Some are old boyfriends, some are the husbands of longtime or new friends, some are friends that I simply met in my travels or while in school. They know who they are, know that I love them. Others I wouldn't have met if not for my husband Michael, and I have to say they’re all pretty damn amazing, too. I’d welcome any number of them into my home to make me drinks while listening to music in worn leather chairs.

Besides Roger, Charlie is one of those guys. He’s rock solid and I love him way farther than I can throw him. He’s been here on several occasions when Calvin has had seizures. I’ve gotten plenty of breathtaking hugs from that guy, and a few back cracks, too. Then there's Macauley, who loves my man like a brother and always brings much needed calm. The others come to me—to us—remotely for the most part. There’s Ades who’s the greatest, and makes us cry with his empathetic words. There’s Herr Doktor Willey who’s so clever and silly and a whiz over a hot stove. The guy always spoils us rotten. Then there’s Wolf. He’s like no other, is as real as they come with his love and affection. Duffy is true blue, down to effing earth. What more can I say? And Andy, whose friendship is so long and strong and steady and Tom who lovingly follows my Story. And Arnd and Ivano, both who we’ve essentially adopted and who kill us with every kindness and love.

Then there are the boys who we’d love to hear more from, though I still know they love us and I know we are on their minds a lot. There’s Garzeloni whose filthy mouth and incredible wit I can’t get enough of. There’s Seth whose voice is soft and smooth and whose guitar playing and genuine affection I miss very much. And Nick, for so many reasons. Where are you, Nick? Dammit.

These men I’ve met all pretty much get us to the core. It is difficult, if not impossible, to imagine my life having not met them. They’ve helped define me, to be sure, and help build me up at times when I feel I’m crumbling. Love you guys to the max. You know who you are.

photo by Michael Kolster

vigil strange i kept on the field one night

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

seven minute swoon

Lucretia has gone and all is calm. My sick little one is finally drinking some water though won't bother with food. His felted frog is water logged like the happy chew toy it is for my boy, and he smiles, yes, he smiles.

Outside the birds tweet. Their chirps sound so sweet, like my boy when he feels good. They've all left the nest and now are resting in the wind, the bitter wind. I worry over birds and boys and forgotten joys and of what tomorrow might bring.

I read about the full moon today, to which some seize and swoon, its pull so strong we belong to it and cannot flee its tremendous gravity.

At five o’clock everything stops and the seizure steels my boy like a thief. Our chests both drum to the sound of heavy rains coming down, down. Seven minutes he is in it and the swoon shows no signs of stopping. My heart throbs and I sob with feelings of sorrow, dread and fear.

Another drug, its vial unplugged. Inside his little body it goes and flows into his brain to stop the train barreling down the tracks. His eyes of glass are so far away. Will he be okay?

Then, out he comes, though quite undone. I carry my boy, this heavy load, down such a long road, alone at times it seems. Sleep, baby, sleep.

Twilight mist, the boy is kissed, and with eyes closed I hope he dreams of vast blue skies and clouds on which to drift. The chicks are gone and until dawn they'll brave the night and the rain, just like my tears, again and again and again.

tag teaming

The cardinals outside a downstairs window are working hard to feed three or four chicks nesting in the shelter of a large rhododendron. Rain comes down hard at times, and steady. I notice, out the window at the base of the stairs, that one of the chicks has flown the coop and sits puffed up like a ball of fuzz in the hydrangea awaiting its parents to feed it bits of food. The parents tag team, bright red father then brown mother with her day-glow orange beak. They seem to be trying to draw the chick from its perch, the little defenseless birdie with no tail to speak of.

Upstairs, and in Michael's absence, my lovely friend Lucretia minds my chick as he sleeps in my bed, dried vomit on his face and sleeves and on the towel I used to catch it. My robe is sour and stained, my hair tangled with the same pungent spit up. He puked up his seizure meds while in my arms not long after I gave them. I picked out the half-dissolved ones from the yellow, frothy, phlegmy goop, redosed them when he woke up and gave him an extra Clobazam just in case.

Lucretia arrived before eight. She hugged me and rubbed my back and brought me coffee and slept with Calvin and stripped the beds and made them up and hugged me some more and told me she could stay as long as I needed. I took a shower and put in a load of stinky laundry. We sat and ate warm oatmeal while Calvin recovered some in the jumper. My little bird still isn’t eating or drinking. The chicks outside are famished.

All parents work so goddamn hard, I think, harder even when their kids are sick, some impossibly so. Thank goodness for the tag team. Thank goodness for Lucretia.

me and Lucretia

graduation day

Graduation day approaches. All but the seniors have gone back home. In the fields enormous white tents have been erected awaiting literally thousands of hungry graduates, parents and siblings who will soon bespatter themselves with two thousand lobsters aside drawn butter, steak, chicken and corn.

Outside, rain falls softly as I take my evening walk through the backyard gardens with Rudy. In the twilight, rhododendron blooms glow against soaking bark. Under my feet lay a carpet of green and in the still I can hear the college chapel bells ring as they will on graduation day.

This is the time of year when I imagine what it must be like for the students’ parents—many who are my age—when they see their child, their own flesh and blood, accomplish something so great. Their hearts must burst, their eyes brimming at the image of cap and gown and diploma, of suit and tie and frilly summer dress and open-toed shoes and smiles and cheers and hugs and so much pride, enough even for me to leech.

No doubt most of these young adults will go on to do great things. They’ll become doctors and lawyers and journalists and philanthropists and teachers and mathematicians and scientists and  entrepreneurs and writers and editors and politicians. They’ll travel or start their own company or take over the family business. Some will fail and others will get lost. A handful may meet with tragedy. But most of these dapper, elastic college graduates will succeed, enjoy independence, become shining stars.

And though my boy Calvin is only nine, I’m already envious, find myself coveting what these parents and their children have, which is a bright future full of hope and opportunity. I imagine these mothers and fathers and their offspring standing in the serving line under the tent, their spiky heels and oxfords sinking into the lawn as they happily clutch plastic forks and cups, paper plates and napkins. I’ll stroll past the crowd pushing Calvin as he sits performing his usual antics. I’ll be trying to thwart his eye poking and hoping he doesn’t have a seizure. Then, one of those charming college boys will do what they do, which is to tip his head and smile, perhaps say hello. With genuine emotion I’ll return his kind sentiment and then, as we walk on, my heart will most certainly die a silent death.

photo by Michael Kolster

bitter acid

Acid: a word used to describe a substance that dissolves, corrodes. Something bitter, caustic, hurtful, venomous.

Valproic acid, aka Depakote: a popular anticonvulsant used on adults and children, including my son Calvin when he was just two.

An Epilepsy Therapy Project email just sent out a teaser citing a recent discovery that valproic acid (VPA) lowers IQ in kids up to age six and is linked to decreases in brain volume. A friend pointed out that she thinks it occurs when women take it while pregnant, but if that isn't bad enough, whose to say it doesn't happen to infants and toddlers who take it? Regardless, for nearly fifty years it’s been in use as a first-line treatment for epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migranes and schizophrenia.

When Calvin began using Depakote for his seizures I questioned the neurologist’s decision knowing, from my own research, that Depakote is also known to cause liver failure, particularly in children under four, those who have intellectual delays, and who have uncontrolled seizures. Despite my concerns the neurologist prescribed it. Calvin became a zombie. He lost basic skills that had taken him months to develop. He didn’t smile or laugh. He sat like a blob in the middle of the room and took no interest in objects or people. After several months of increased dosing but no improved seizure control the neurologist decided to put Calvin on a second drug, Lamictal, that required weeks of slow titration in an effort to avoid Stephens-Johnson Syndrome and Toxic epidermal necrolysis, both dangerous, life-threatening rashes. Before adding the Lamictal I insisted Calvin have his blood drawn to check his liver functions. His results came back more than ten times higher than what is considered normal, indicating the likely beginnings of liver failure in my sweet little zombie kid. We took him off of the Depakote immediately and had to put him on three replacement medications, including one addictive drug.

I think about Calvin and the fact that the months on Depakote may have shrunken his delicate brain, which was already missing a significant amount of its white matter. I think about the skills he lost, the abyss he’d fallen into, the fear I felt in thinking I might never see him smile again. But then I think of all of the children who were born healthy—normal—with the promise of a bright future, of being educated, of playing sports, developing friendships, meeting sweethearts, marrying and of having children of their own. I think about Lauren and Sophie and the hundreds of thousands of children in this country who develop epilepsy for unknown reasons, who have taken Depakote and who have been robbed of so much of what life has to offer.

But the pain goes deeper, because I know in my gut that every single anticonvulsant drug my son has to take wreaks havoc with his development and well-being and yet don't stop his seizures. As far as I’m concerned they’re all brain acid, which is more than a bitter pill for all of us to swallow.

photo by Michael Kolster

tolerance

The first time I understood tolerance, of the technical kind, was when I learned the craft of designing and producing clothing. Tolerance, in the manufacturing world, is the allowable variance of any given product specification. A disparity beyond the tolerance (for example, an inseam that is too long or too short) is said to be non-compliant and can be rejected by the wholesaler.

Shortly after Calvin began taking drugs for his epilepsy, I learned there are also tolerances in the pharmaceutical world, which is a scary thought at best. This accounts for why some people with sensitive systems or fragile seizure thresholds like Calvin may not do well using generic forms of drugs compared with the brand name versions.

Recently, I faced this problem once again when I picked up Calvin’s synthetic thyroid medication from the pharmacy. I’ve made a habit of opening all bottles before leaving the pharmacy to make sure they’ve given me the correct pills since I’ve learned that this isn’t always the case. This time the pills, though they appeared the same soft lavender color, were a different shape. I asked why, and the pharmacist told me that a generic version had been substituted because the brand name pills were back ordered. She confirmed my fear about the tolerance, so I asked her if there was any other option. She suggested we might try a different brand name drug. At my request she called Calvin’s endocrinologist and pediatrician and the prescription was changed to an alternate brand name drug, ostensibly identical to the one he’s been taking for eight years. I remain dubious.

My fear in using the generic is multifaceted. First, Calvin is enjoying a long seizure-free stint of over thirty days. Calvin’s thyroid levels have been stable for years on the same dose of synthetic thyroid medication and I hate to upset this balance because who knows how that might translate in his body, in his brain. Also, changing drugs adds yet another variable to the conundrum of Calvin’s physical and behavioral symptoms and general well-being, which are difficult to ascertain, making them nearly impossible to assuage.

And, so, with no other acceptable alternatives, we will begin using the new drug in a few days, to be followed up with blood work in the wake of the change to ensure Calvin’s thyroid levels remain within the normal range. Cross your fingers and knock on wood.

Tolerance? When it comes to these drugs that I have to give my kid, I don’t have much.

motoring

"He's an outlaw, he's a One-Percenter, he's a rebel that gives good bikers a bad name.  He just wants to be free; free to ride without being hassled by The Man!"

—Steve Shake, Calvin's unceasingly humorous uncle, upon seeing a photo of Calvin riding his trike.

Oh, and he's really not the kind of one-percenter that you might think.

Scroll right or click on the photo to see entire image.

photo by Mary Booth

enough

There aren’t enough beautiful days, enough songbirds, enough sunlight, enough raging rivers with their froth and toss nor indigo seas to carry it all away.

There is not enough rain to drown these sorrows, melt the dread, distinguish the embers that burn hot and spike inside then spill out in icy stares and words.

There aren’t enough stars to wish away eons of bitterness and loss and despair, while moonlight brightens shadows scantly enough to see a path as lonely as the pines.

It’s impossible to eke out enough sleep, drink enough coffee or bourbon to sufficiently deliver a cool place of meditative calm where skies are so vast and white I go sublimely blind.

There aren’t enough pillows to beat or walls to kick or doors to slam or words to curse what seems at times infinite frustration, sorrow and regret.

There aren’t enough hours to pass—to sufficiently forget—from one niggling day until the next, and not enough words exist to keep asking for forgiveness.

There aren’t enough flowers to pluck and quench only to see them wither and drop petal by silken petal into an exquisite death as beautiful as their dawning.

There aren’t enough moments of peace and calm and hope where bright droplets cling like opals or tears or mercury—or the child I never had—to quivering limbs, but which gravity lures into dark reflecting pools.

There aren’t enough winds to whisk away the worries, to peel back bark as coarse as these thoughts, to strip aside layer upon layer of this callused soul until I am lying naked in a silent bed of moss, which is where I’d like to sometimes be.

But there are enough tears, enough smiles, enough grasps, enough pain from enough love, because it hurts, you know, it hurts.

sunday snapshots

 

captive

She sipped a Lemon Drop. Mine was a Gimlet. We sat close, our elbows propped on the red vinyl bumper and saddled up to the bar. We talked of kids and friends and school and work and sex while we melted into a happy buzz. We hadn’t seen each other for at least six months and we compared stories of our speechless, disabled little kids who have to take multiple drugs for their unrelenting seizures. She asked how I was doing and I said, “pretty good,” and then mentioned how much I miss traveling, how much I miss San Francisco, how much I miss being able to go to places I want to go. “It’s a little like being in jail,” and I thought how I felt as if I was a captive released on parole. Looking into her beautiful, dark eyes I knew she was my partner in crime.

I went on to explain that, not unlike some prisoners, I have access to ways of improving myself. I can read and research, I can write about my experiences, I can correspond with folks outside of these walls, I can live vicariously through the adventures of others, I can spend hours on end plotting my escape from incarceration and I can dream of the day I might be released. In my relative captivity, in order to maintain any semblance of sanity, I must focus on the simple things, on the sounds of birds outside my window, on the warmth of sunshine as I stroll around the yard. I savor each bite of food that I take into my body, each sip of wine or coffee or milk or bourbon that passes my lips. I meditate on the silence of the hours alone in my chambers and reminisce about times spent on the outside, moments from my former life when I strutted the streets of San Francisco, biked the trails of Marin, trekked the roads of Europe, motored the isles of Greece, Turkey and former Yugoslavia, explored the beaches, deserts and plains of Tanzania, Kenya, Egypt and Brazil.

And like a captive, in order to keep hope alive, I must remind myself that these places and the people who live in them are not gone. They await me, and perhaps one day I’ll be released from this relative prison where I must rise at the same dismal hour every single day of my life to begin the monotonous task of trudging around with my loving little ball and chain.

photo by Michael Kolster

friday faves - walking and falling (video)

Calvin embodies this song (or the song embodies Calvin) as does my relationship with Calvin and my relationship with life and all of its beautiful complexities.

effort and empathy

When we stop doing things for ourselves and expect others to dance around us, we are not achieving greatness. We have made ourselves weak.

―Pandora Poikilos, Excuse Me, My Brains Have Stepped Out

Yesterday, my nine-year-old disabled son Calvin and I did something we've never done before. We went grocery shopping using a cart ... but this time he wasn't in it. He was pushing it.

I positioned his slender fingers and thumbs around the bar, in the center of which I snapped two reusable shopping bags to prevent him from biting or bonking it. Then, from behind, I held my hands on top of his so that he wouldn't release his grasp and fall off balance. We shuffled like this from the berries to the apples to the bananas to the avocados. We were slower than the slowest of slow shoppers. My friend Tahnthawan appeared and kindly asked if she could help get some of our groceries—all of them, in fact. I told her no, that this was something we had to do, that I had to teach Calvin how, otherwise I'd never be able to go grocery shopping unless someone else came along. I saw her pained, compassionate expression in the form of a slightly stitched brow, and she came around later and lovingly commended me for being a hard ass.

Calvin and I began navigating slowly through the aisles from the coffee to the milk to the paper towels. He was the most obedient and patient that I've seen him for a while and we eventually managed to get everything on the list.

Then for five or ten minutes we stood waiting in line at the pharmacy, something I do all too often because of his epilepsy. Calvin whined and careened and scratched and pulled for me to pick him up. He batted my face and rubbed his head hard against mine clearly wanting to get going. I remained patient, a new promise I've made to him and to myself, and told him what a good boy he was being. The man behind us, while fishing into his pocket, asked if Calvin liked pictures. I replied, "not really, but thank you." Calvin squirmed and fussed for another several minutes as I signed for the drug then commenced our escape.

As I set Calvin's hands back onto the cart again, the man, a rugged fellow probably in his late fifties with rough-cut, short reddish hair and a gold loop earring, raised his hand in a high-five. As I slapped it he said, "I was in the military for years," no doubt in my mind a remark on knowing hard work. "I don't mean to be patronizing," he continued, to which I replied, "Oh, no, not in the least. I appreciate it." I went on to say that my father attended the Naval Academy, perhaps explaining my work ethic, to which the man tipped his head in solidarity. And as I steered Calvin and the cart away from the man while passing a line of gaping customers, I held back tears of pride and joy, sorrow and effort and the pleasure brought by a simple stroke of human empathy.

photo by Tahnthawan Coffin-Gartside

nobody need wait

How wonderful it is that nobody need wait a single moment before starting to improve the world.

—Anne Frank

Anne Frank, June 12, 1929 – early March 1945

freight trains

I can sense the goddamn things. I can feel them, see them, even smell them on his breath as they approach from around a bend. It’s unnerving on several levels. He gets agitated, starts ripping at my hair and bonking my head with his own noggin. He goes nuts in the bathtub, the jumper, the high chair, the changing table. He’s wired and loopy and bound to smack his head on something or take a bad fall even though we are holding his harness tightly in our grip. He doesn’t want to eat or drink or walk.

I usually spot Calvin’s seizures from a distance one to three days prior. As if sheltering from a bitter wind, my shoulders cinch up around my neck. I can feel a dull ache behind my eyes and a hard, plasicky shell around my entire body that makes it hard to move. Inside I’m molten lava and nerves, feel like I’m trembling even though I’m not. And, so far, there’s not a thing I can do to save my boy from them even though I try.

Lately we’ve tried evening out one of his seizure medicines, the one with the long half life, to see if it curbs his stubborn dinnertime seizures. We’ve increased one of his other meds hoping for the same. We’ve taken away gluten to see if it improves his behavior, his rashes, his reflux, his immune response, his seizures. Today is day twenty-four since the last one, but I think I see it coming like a freight train in the far off distance. I want to lay my body down in front of it just to save my boy. But these freight trains cannot be stopped once they are set in motion. They just sail on through like a ton of bricks and wreck whatever is in their path, smash it to smithereens, then coast off into the distance only to come through again on their next round.

But I’m hell bent on derailing this epilepsy mother-fucker (excuse my french) and I’ve been known to be a formidable opponent in the past. I don’t give up. That’s the key. Never, ever give up. In my mind I’m like the cowgirl who rides up alongside the damn speeding train, jumps it, jams something steely into it’s gears until it comes grinding to a halt, frozen in its goddamn tracks. Watch out. I’m in a mood.

photographer unknown

ridiculously lucky

The house was packed with music fans, mostly bespectacled, white-haired and balding, though plenty of younger folk, a few students and one or two restless babies. They wore felted wool coats, silk scarves, silver and gold and gemstones, fashion denim, flannel shirts, cordovan shoes and sleek waterproof jackets with reflector tape and velcro. They’d come from cozy restaurants or from home where wine and beer might've been served alongside plates of warm food and glasses of cold, clean water. Perhaps they’d had dessert, perhaps not, but there had likely been a choice. No doubt, many had smart phones in their palms, watches on their wrists and money in their wallets.

A few arrived in leather scented cars with seat warmers to take the evening’s damp chill out of close fitting slacks or lycra leggings. Others walked through the mist under dripping pines and maples just beginning to bud. They were warm and dry, their bellies full, and ready to devour some extraordinary live jazz in a clean, comfortable, climate-controlled college theater. I happened to be one of them and, seated next to me, Michael was another.

The music, a quartet of piano, upright bass, drums and banjo, moved me both literally and figuratively. I cannot do it justice with words but to say that I lost myself, even if just for a moment.

Once home and in bed, I rested my weary head in a perfect spoon of down pillows, pulled the comforter up around my shoulders and closed my eyes. I fell asleep with the sweet sound of music still humming in my head only to be woken minutes later by a semi-conscious boy banging his head against the padded safety panel of his bed. Muttering a string of grumpy obscenities I scooted into the next room, unhitched the netted canopy, laid Calvin back down and covered him so that he could get back to sleep.

My wretched complaints followed me back to bed where I half hoped Michael was awake to hear them and half hoped he wasn’t. I stewed and steamed for a bit, then looked out into the night and thought about Ronan’s mothers sleeping under a New Mexico sky without her little boy because he died a few months back. I thought of the murdered Sandy Hook children whose parents and siblings were awake with insomnia or asleep in their Connecticut homes, the empty beds of those lost in the next room. I thought of the hundreds of garment workers crushed in the Bangladeshi building collapse and the difficult lives they’d lived up until then. I thought of the tented cities of Haiti, the Syrian crisis, the masses of people living in war, depression, squalor, oppression, fear, anxiety, threat, burden, loneliness, uncertainty. I thought of those living lives with no money, no food, no heat, no shelter, no water, no healthcare, no job, no freedom, no safety, no opportunity, no future.

Then I thought about how ridiculously lucky I am—we are—and that even though I have a disabled child with medically refractory epilepsy, I have nothing really to complain about in the scheme of things. And then my anger and frustration dissolved like water droplets into the lattice of pines standing stark black against what appeared to be a non-threatening, shimmering white sky.

for my mother

It is Yours

I wish you were here with me.
I miss your smile.
But I can see it every day
when Calvin looks up at me
with that toothy, dimpled grin.
It is an angel’s smile,
and it is yours.

I wish you were here with me.

I miss your hugs.
But I can feel them every day
when Calvin holds my neck
and presses his cheeks to mine.
His face is soft and warm,
and it is yours.

I wish you were here with me.
I miss stroking your hair.
But I can touch it every day
when I hold Calvin’s head in my hand
so gently when he sleeps.

His hair is fine and smooth,

and it is yours.

My mother, Harriette, as a schoolgirl

this is water (video)

Words of wisdom to live by.

friday faves - to breathe

A short while after Calvin was diagnosed with epilepsy, when he was two, Michael and I escaped up the road a bit to have dinner with some friends. I remember the drive along a snaking route that hugged the river, worrying about Calvin who we’d rarely left behind and, though he was in the care of a nurse, I found myself tensely holding my breath.

The trip seemed forever, hard to get my mind off of our son, but we finally pulled into the gravely drive and climbed the stairs to greet our hosts. Inside, our friends cupped glasses of wine and champagne and before too long I had my own. Michael and I huddled up to the island on tall stools hovering over appetizers fit for a king. My friend Uli had fashioned hand-rolled tuna maki with sticky rice and spicy mayo wrapped up in dark wrinkled seaweed sheets. I felt the warm alcohol buzz melt over me, felt my legs get deliciously heavy and relaxed. I took a deep, refreshing breath and exhaled.

My lovely host and her husband, who we were enjoying getting to know, were pregnant with their first child. They kindly asked about Calvin so we filled them in a little about his challenges and his seizures but tried to keep the conversation short not wanting to incite fear into the minds of soon-to-be parents. She told me about a collection of essays she was reading, essays about mothering against the odds. In the book, she went on to say, was a piece by a mother of a disabled child that she thought was very good and that I might be interested in reading. Immediately, my guard went up, the brick wall of cynicism I’d formed like a shell around my delicate innards. She can’t know what I think or feel about my disabled child, I thought, she isn’t even a mother yet, much less one of a kid missing part of his brain. I feigned interest, didn’t take the book. “I’ll copy it for you and send it,” she said. “Thank you, that’s very kind,” I offered, sure that I had no interest in what the author might have to say but appreciative of my friend's kind—though, in my mind, naive—gesture.

We gathered around the dinner table for homemade pad thai with peanut sauce and huge succulent pink shrimp. Wine poured freely as the five of us laughed until our faces ached. Although we were sad to leave our happy hosts, and reluctant to step out into the frigid fall air, we were happy to be heading home to Calvin.

A few days later a large amber envelope arrived. I untaped its mouth, pried open the butterfly closure and fished out the stapled copy of the essay. “’Exceptional’ Mothering in a ‘Normal’ World” by Miriam Greenspan. I sat myself down on the couch and started reading. Throughout the essay my thoughts drifted to the friend who had sent it to me, to her angelic face and shining golden curls. Thinking about her made me cry, finally understanding her capacity for compassion, and for recognizing that the essay might resonate for me. Indeed it did.

The child in its pages was a lot like Calvin, the grief and hardship of her family a lot like ours. At once, reading the author's words, I realized I wasn't alone in the world—this bitter cold world—of seizures, ambulances, hospitals, sleepless nights, therapies, drugs, needles, x-rays, body braces, pneumonia, gawkers, fear, despair, stress, grief, loss, marginalization, disappointment, worry, uncertainty, heartache. Finally, I felt I could softly lay down my head—as if on my friend's shoulder—and finally begin to breathe.

Originally published 09.23.11.

detail, photo by Michael Kolster

because

This morning, not unlike many mornings, I found myself wanting to run away, this time to the South Seas with my friend, Eee (Elizabeth.) It’s because I've got an impossible (sometimes) kid, and because I can't run away with Michael because of Calvin, and because Eee mentioned it in her blog post from yesterday and because the idea sounded divine. I figured I'd just hitch a ride on her dream, because I could. We'd both be running away from our frantic mornings which flummox, frustrate, inflame, fret, infuriate and fluster because of mindnumbingly ridiculous—and horrible—reasons.

In said South Seas we'd sip mimosas on pristine beaches. We’d drape ourselves in a pair of sinking chairs yay deep in crystal water lapping at our ankles like the soft mouths of Labradors. We'd spy half-naked bodies as far as the eye could see, like jewels, glistening with sweat and oil and sand. We'd close our eyes to cool cucumber slabs then, with ears perked, listen to the surf and the gulls and the wind and the clink of melting ice. Because we could, we'd read all of our favorite books—without falling asleep—under the dappled shade of palms. We'd talk of love and life and art and music and hurt and absurdity and loss and dreams and of what our children would be without epilepsy. We’d stroll arm in arm clad in long flowing dresses under a moonlit sky where the sand appears like snow under our feet. Because we’d be in the South Seas, we’d sleep in a bungalow with a thatched grass roof and bamboo and banana leaf walls and, just because, there’d be no bugs. We’d wake up thirsty and toast to our husbands and to our children, grasping two large, sweating Bloody Marys in our fists. We’d eat some eggy thing with avocados. And as the dream faded we’d embrace, wondering when we’ll see each other again. Perhaps in another dream, because we’ve never met and may not meet for a long time to come.

Then, back at home, the frenzied fluster would be a little easier to muster, just because we'd dreamed it away.

special olympics

At today's Midcoast Maine Special Olympics, Calvin won his heat in the 10 meter assisted walk with the help of his totally awesome one-on-one, Mary, and his very competitive mother.

photos by Ann Anderson

walking in circles

Upon seeing Michael walking in circles behind Calvin—harness in hand—in the small, beige waiting room, a man seated next to his daughter says, (referring to Calvin), "He must do twenty miles a day ... I'm breaking a sweat just watching him!"

"He gets it," I whispered to Michael who nodded in agreement. The room lit up with laughter. My nose stung and I'm sure I wasn't imagining Michael's moistening eyes.

Calvin doing his rounds at home

wishing on stars

I don't believe in God, at least not the God of organized religion. Not the Jewish one or the Christian one or the Muslim one. And I don't believe in the widely embraced beliefs of heaven, hell or Satan. What I do believe in is the beautiful interconnectedness of everything in the universe—the planets and stars, the rocks, the animals—and how we are all a part of it and will rejoin it in an elemental way when we die, when we become, again, stardust. These feelings I have for the sun and the moon and the far off galaxies and the pull they have on me, this wishing on stars I sometimes do, is powerful spirituality. My energy will not be lost when I die. It will live on in the memory of those whom I have touched and in the soil and sea where my ashes will scatter. I will become earth and sky and wind and river and sea and universe all at once.

But when a friend tells me that they pray for me, I understand. And when someone whom I've never met offers me this kind of solace on a difficult day, in a manner in which I feel deep within my bones, I melt into her words and heal just a little bit. In reading this you can see why:

each day when I light my candles I say the names of your family aloud, with the others I choose to remember in this daily way, and I pray for peace and healing and love for you all and I carry a ruby for grief and an obsidian for comfort and a tiny icon of mother and child and a small wooden angel and some other things which i carry in my pockets and find in my hands several times a day and though it is the way of a child to hold to such talismans i allow myself this touching home, these miracles of the universe, and i reach for my mother and father, and my grandparents, and dear friends i have lost and for my own lost self and for all those who struggle and all those in pain and like a child i wish on stars and hold my stones which once were stars and i feel the love of the universe and send some to you and to your small miracle and trust it reaches your family in some way, like sunlight on a cheek, like sea mist, like hope, like yes, like moonlight, like a small bird shaking her feathers, like a shadow of a tree bending just slightly in morning air, like bending on one knee, on both knees, like bending the head with hands forward pointing from my heart to yours

I, too, send my deepest gratitude and love to you, Elizabeth, and to the rest of you, brilliant stars, who have lifted me up—and continue to do so—and fill my heart, dry my tears, touch my spirit and who send your love. You make my world, my universe, a better place to be, a place where I can believe in the power of wishing on stars.

photo by Michael Kolster

once an athlete

Cyclers in their bright regalia whiz past us. I spot them out of the corner of my eye as Calvin stumbles around trees, careens into bushes, stares up at the sun, teeters and tips. When we are on the grass I let him fall with minimal support since it is soft and he needs to learn, though he may never, that when he looks at the sun he’ll tumble. His balance is for shit to begin with—you know, the seizure drugs and all—and the sun adds another vexing element to his complicated equation.

I think to myself, I’d be kicking some ass out there, as scores of toned athletes hunched over their bikes take me back to my days as an athlete. As a collegiate swimmer, in some circles I was pretty good while in others, like the PAC-10 conference, I was mediocre at best. Regardless, I’d have the advantage as a triathlete, something I’ve toyed with doing over the years since I’m also a decent runner and I know I’d do well at cycling if I had the right bike. But the four hours of training every day for years on end has soured me on the idea and has curbed my desire for getting back into the pool on a regular basis. And though my body has softened and my brain could use the regular dose of endorphins that swimming offers and, despite my age, I know my muscle memory will help get me back into shape quickly, I still find myself in a prolonged rut, making all sorts of excuses not to get back into the pool:

it’s too cold it’s too sunny i don’t feel good i’m too tired i have a headache i want to lose five pounds before i get into a swimsuit i think i'm coming down with something i want to garden instead i want to write instead i don’t feel like it i have too much to do today

And so it has been the same for nine years ... since Calvin was born. And I try to motivate myself by thinking of my glory days, of my once svelte body, of the ribbons and medals and trophies I’ve won and since given away, of the Most Inspirational and Team Captain honors which my teammates lovingly bestowed upon me in summer league and high school and AAU and college, of my All-American state championship relay in high school, of our men’s and women’s NAIA National Championship titles. Still, none of it rouses my desire.

So for now, instead of athlete, I’ll be coach and captain to my son Calvin. I’ll commit to his development and praise his triumphs and guide his progress and critique his mistakes and inspire his perseverance and set his goals and celebrate his victories and tend to his bumps and bruises, even as the colorful blur of athletes unknowingly speed past us and until one day I try again for myself.

circa 1971 when I was a couple of years younger than Calvin is today

no stopping

It does not matter how slowly you go as long as you do not stop. 

― Confucius

photo by Michael Kolster

friday faves - melancholia

It’s been haunting me for days, this Melancholia. I can’t seem to get it out of my head—not that I want to.

In the opening sequence, the film’s orchestral score sweeps me up then drags me under. Kirsten Dunst’s pained expression—eyes half-mast as if dead, hair dripping—ropes me in with the birds and dark matter falling from the sky. A Hitchcockian moment, the scene morphs into a series of super-slow-mo canvases—rich, surreal, botanical, like oil paintings—mingling with celestial panoramas. I feel gravity's pull, the essence of depression tugging at me like the grimy swathes shown entangling the bride’s wrists and ankles, and the weighty steps of a desperate mother hugging her boy across her chest. Just like I sometimes carry Calvin, I think, especially when he is having a seizure, trying to find some safe haven.

I sensed that the world might end—planet Melancholia perhaps slamming into the earth—and I understood the bride’s despair that dampened and soiled her billowy white chiffon. But what I hadn’t understood was exactly why I couldn’t stop thinking about the film—its images, its characters, its music, its ending—kept rolling them over in my mind like a handful of stones.

A few mornings later, over a cinnamon roll and a perfectly round coconut cream moon, Michael and I revisited the film. We sat across from each other in a booth near the window of the little storefront donut shop. I told him that Melancholia had stayed with me ever since we’d seen it several nights before. I explained how I related to the character, Claire, as she carried her son alone across a field, each step sinking knee-high into soggy turf, trying in vain to escape obliteration. I wondered how I’d feel if I knew that doom was approaching with the ferocity of a hurtling mass, wondered what I’d do.

“But wouldn’t we know years in advance if a planet was headed toward the earth?” I asked.
“Yes, Michael replied, then reminded me, “but Melancholia had been hiding behind the sun.”

He explained that Melancholia was allegorical, and as he did I realized I’d foolishly missed it—its painfully obvious metaphor for despair, grief and loss that seem to come out of nowhere. “Just like Calvin,” I remarked, tears welling up in my eyes as I licked coconut glaze from my lips. I reached across the table to hold Michael’s hand whose clear blue eyes appeared moist and edged pink. “Yep, just like Calvin,” he added, and I cried for our boy—and for us—hit so hard with illness, suffering, debilitating conditions, epilepsy and its heinous treatments.

We went on to talk about how everyone has their own Melancholia that suddenly appears, bringing us to our knees. For some—like us—it comes in the form of an ill child. For others, it’s the loss of a job, the passing of a parent, sibling, spouse or partner, a terminal disease, a chronic condition, an abusive relationship, a divorce, the death of a child. We cannot escape, none of us.

And so I ate my last piece of donut in relative silence, then tasting nothing but a thin, greasy film on the roof of my mouth, thinking about Calvin's clear blue eyes, like two celestial orbs reflecting all of my grief, loss and fear, but also my salvation. We're two planets colliding, I lovingly thought, Calvin: my own little Melancholia, my moon, my star.

Originally published 04-30.12.

from Melancholia, directed by Lars von Trier

whole lotta trouble

At first, even before Calvin was born, the trouble was two enlarged ventricles in his brain and the absence of much of its white matter. Then it was his premature birth, his trouble breathing, his dangerously rapid heartbeat and respiration, his inability to keep his body temperature up and the absence of his suck-swallow reflex resulting in his struggle to nurse and relative failure to thrive.

Then, the trouble was his vision: 20/1000—five times worse than what is considered legally blind—along with his penchant for staring at the sun. From there we mourned his countless missed milestones, pretty much all of them. He was colicky and refluxy and irritable and floppy. Then, when he was eighteen months old, we had the scare of Calvin’s first seizure, but the real trouble came after his epilepsy diagnosis when he was just two, because that’s when he started having to take serious drugs.

He’s had eye-surgery and a painful late-stage circumcision and two nuclear medicine tests where he swallowed barium to check his bowel and urinary motility. He’s had blood draws and intubations and sonograms and MRIs and CT scans and X-rays and multiple EEGs and one sleep study. He’s been taken away by ambulance and been hospitalized more than I care to remember. During one forty-five minute seizure we thought he was going to die. I know I've said this all before. I lament it every day.

He’s knocked out a tooth and whacked his face on the side of the tub even while wearing a padded helmet. He’s bloodied his nose and bashed the hell out of his cheekbone and gotten strangled in the safety net of his crib and choked on food. He’s cracked a tooth in half and fell off of our bed and out of his crib, both once. It’s a minor miracle that he hasn’t sustained a major head injury since his balance is so godawful bad due to the dizzying drugs.

He's tried umpteen antiepileptic drugs and drugs for reflux and drugs for slow motility and  supplements for sleep and seizures and mood. We’ve tried troublesome dietary therapies and dubious cranial sacral manipulations and homeopathic tinctures and alternative functional medicine to eradicate yeast in his bowel.

He’s had trouble with sleep and pneumonia and urinary tract infections and ear infections and bronchitis and hypercalcification in his kidneys. His bowels have been impacted and recently we’ve begun to investigate more urgently the theory that perhaps he has been suffering from reflux, so he’s starting another drug for that tonight, and you can be sure I’ve researched its laundry list of side effects which about kill me to read. If that drug doesn’t work we’ll have to put Calvin under general anesthesia—again—to examine his esophagus for strictures and/or ulcers and then do a 24-hour nasogastric pH probe to test for the reflux once and for all.

And through all of this Calvin has to endure seizures despite taking powerful drugs and not be able to tell us how he is feeling or why, beyond simply coughing and screeching and whining. But he handles it amazingly well, far better even than I.

Yep, my son is a whole lotta trouble. But when it all seems more than I can bear I have to remember—besides never taking my health for granted—he’s a whole lotta love, too.

our little trooper

works of art

These are Calvin's recent works of art—which I think are beautiful—no doubt achieved with much help from his amazing one-on-one, Mary. What a joy it is to see him make a happy mess like I did as a child, though I'll always wonder if he has any appreciation for the venture or its result.