love and burden

Freud posits that any declaration of love masks some degree of odium, any hatred at least a trace of adoration. All that children can properly require of their parents is that they tolerate their own muddled spectrum—that they neither insist on the lie of perfect happiness nor lapse into the slipshod brutality of giving up. One mother who lost a child with a serious disability worried in a letter to me that if she felt relieved, her grief was not real. There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted—even in imagining another life.

—Andrew Solomon from Far From the Tree

photo by Michael Kolster

art

Art washes away from the soul the dust of everyday life.

—Pablo Picasso

photo by Michael Kolster

friday faves - notes from friends and strangers

From last June

I wanted to tell you that I dreamt of Calvin last night. It was one of those extraordinary dreams, in which strange things happen and you awaken wondering just what could have provoked that particular train of thought. He was happy and gave me floppy hugs and then looked in my face and said "glasses." I don't know what it means, and I don't think you probably believe that it means anything, except perhaps that I read your posts and think of you and Calvin often. I hope this finds you and Michael well, and Calvin seizure free today.
 

Hugs.

—Amanda

im sorry, i know u dont know me, but ... i just wanted to say i loved the birthday story about ur son ... im pretty sure me and u come from different backgrounds, but im here to tell you that your story made me cry with joy, even though i may be different from you ... my reason is because people take things for granted, and forget about being happy and the fact that we are all the same (JUST HUMAN BEINGS) under the same sun ... but i wanna say again thanx for that inspiration and ill take that with me on journey thru life GOD BLESS.

—Josh

i just want to say how humble i feel right now. when my gorgeous 19 year old was about a year and a half, i told his doctor, "he's into everything!" my doctor was a wise man who said, "trust me. you wouldn't want it any other way." sending you xoxxox and thanking you for the work you do and sharing with us. blessings to you and calvin and you family.

—kate

I was thrilled to see Calvin at the Botanical Gardens! He did seem tired, but I must tell you of a few moments of his happiness. Sadie (who ADORES Calvin) sat with him to take some photos and say hello. He was snuggling up with her, chewing on her hair, smelling her neck, and clearly enjoying it! She did too. As we walked away, she said, "I love the way you can always tell when Calvin is happy. He's the goofiest guy in my class, that's why he's the only boy I like." Im so sorry his happy day ended with a seizure, sucky.

—Elsa, Sadie's mom

Hope not to offend you if I tell you that from your blog I can feel all your suffering but there's also a kind of smooth beauty. I think it's the unending, unconditional, everlasting love for your son. Ciao.

—Federica

Oh Christy, I watched your video of one of of Calvin's seizures. It was beyond powerful—to watch your beautiful child endure this pain and confusion and then enter into a place of unfathomable quiet. I know I understand nothing in the grand scheme of things, but this was a window into some tiny understanding of some small piece of your life and Calvin's. Thank you for sharing it.

—Mary

I’ve got to quit reading these at work people are wondering why I’m tearing up.

—Greg

I often times try to imagine if I could live a life similar to yours ... and just that thought alone will travel with me throughout my day, my week, etc. The thought is constantly with me ... when I read about Calvin I feel like I know him and understand him ... honestly, I wish that you lived closer so I could come and play with Calvin and get to know him.

—Briana

I'm listening. Sometimes I cry when I read. I have nothing else to offer.

—Julia

ecosphere of kindness

And I don't accept subtractive models of love, only additive ones. And I believe that in the same way that we need species diversity to ensure that the planet can go on, so we need this diversity of affection and diversity of family in order to strengthen the ecosphere of kindness.

—Andrew Solomon, author of Far From the Tree

I was reminded of this quote yesterday when I heard of—and celebrated—the defeat of the Defense of Marriage Act. I thought of all the families raising disabled children, thought of single parent families, biracial families, of committed lesbian and gay couples who have had children of their own and who have adopted children and have given them a safe and loving home and an optimistic future.

It wasn't that long ago that people with epilepsy could not legally marry, that white people couldn't marry black people. As a result, these couples did not enjoy the same benefits that married folk did—something that the people of a free and just society should never be proud of. So I, too, celebrate this additive model of love. No doubt it's what helps make the world go round.

photo by Michael Kolster

out-laws

My out-laws are in town. They’ve wined us and dined us, chopped salad, skinned salmon, set up, cleaned up, watched me amp up, cool off and melt down. They’ve walked the dog and bought me flowers and ice cream and a haddock sandwich with fries. They've hugged us, kissed us, made us crazy while we made them crazy, humored my skepticism, perfectionism and political passions and painfully witnessed Calvin have a very long, shitty seizure.

Though the two of them are quite different from the two of us—like apples and avocados—we do have some common ground and I feel very fortunate to have them in my life. When my dad died, not long after my Pa stepped in. As my beloved mother fades away by degrees my Ma stands in. They love Calvin for who he is and they support us in all we do, even if they might not always agree or understand.

Here’s to you, Ma and Pa. I love you to the ends of the earth. And don't forget, Pa, it's all relative.

My out-laws with Calvin a few days before his epilepsy diagnosis, 2006

the fates

No matter that it was only day seven since the last one. It was hot, easily ninety, and wicked humid. Calvin had woken up sneezing again, his temperature subnormal. The blown glass barometer mounted on the wall gushed blue water from its spout onto the floor. Sunday's full moon had just passed overhead. The fates, it seemed, had conspired against my boy once more.

Trip up, keel over, fall down, poke eyes, go crazy, walk in circles, whine, fuss, refuse water and food; he did all of it and wanted none of it. The nurse I was training told me that she didn't have a good feeling, said she thought he might have a seizure soon, that she just felt it in her gut. "Are you clairvoyant?" I asked, to which she answered, "Sometimes I know who is on the phone before I answer it."

Later, the house was abuzz. Michael cooked soba noodles with lemon, garlic and pine nuts and browned cumin seed for the salmon. We opened up the house to let in the early evening air. Calvin spun in his johnny-jump-up with one finger stuck in his eye while I quickly ran downstairs to finish the laundry I'd had no time to deal with all day. I was in the cool of the basement no longer than two minutes before coming upstairs to find Calvin slung in his jumper, his limp arms and legs jerking in time. Suspended there, he appeared like a marionette dancing on the end of a puppeteer's wand. "He's having a seizure!" I called, and Michael and I raced to release him from his tether.

Gma and Gpa, visiting from Florida, stood quietly and helplessly at our sides as they watched their grandchild seize for six more minutes, perhaps wondering, as we were, if he'd come out of it on his own. I knew they'd not seen a seizure quite like this one—so eerie, so long—perhaps didn't remember having seen one before.

"Shitty," my father-in-law loathed, referencing the seizure, the whole sorry state of affairs that is epilepsy, and I put my arm around him and gave him a hug. And I thought about the hundreds of seizures, the mountains of drugs, the relentless side effects, the pain, the stress, the frustration, the worry, the burden, the loss. I thought about Calvin and his brain and wondered if the fates would ever in our lifetimes cease to conspire against my little, defenseless boy.

savannah and her mom (video)

I can't help but shed tears of sorrow, gratitude and hope every time I see this video. Many thanks and much love go to my friend Tracy Dixon Salazar—and to her muse Savannah—for her efforts to uncover the causes of epilepsy so that we can find a cure. Please share. Give to CURE epilepsy here.

If you cannot view the video please click here to see it on You Tube.

into the trees

From last July

 I must allow myself simply to
wander into the trees

That is where mystery lies

sometimes dormant, sometimes teeming

I must step through mist that
wraps round my ankles

without fearing what might lay in my path

I could fall into an abyss
—I have before—
but I am strong, I can pull myself out

I might bruise my bones, bloody my palms
but I will heal

Or as dew drops pat my face

I might happen upon a gleaming river 

just beyond the parted trees

I might rest on a large stone and
melt into it

I might lay myself down into a
bed of moss

and listen to wind finger through the leaves

to bird songs
to rain and crickets

and forget all the rest

I must feel the bark chafe
against my face

I must sink into the mud from whence I came

I must wander into the trees 

and very simply

get lost

photo by Michael Kolster

out in the world again

Last night I went out into the world again. I found myself in a sultry sweat amongst a jumping, swaying, cheerful crowd of young and old who had come to see David Byrne and St. Vincent perform at the State Theater in Portland, Maine. I spent the entire evening standing next to Michael getting my groove on with a huge smile on my face. On my other side were two women who were younger than some of the songs that were played. Lights glinted off of a battery of brass: tuba, flugelhorn, trumpet, French horn, saxophone and trombone. When the woman next to me mentioned that she was hot I gave her a hairband. Her companion shielded her eyes from the strobes, which made me wonder if she had epilepsy.

Behind us a woman in her sixties got a full bottle of water dumped on her head by a shrew-of-a-woman who thought she was cutting in front. The rude act of self-righteousness and entitlement—at a general admission rock concert, no less—sickened me, but the music moved me out and into another place, one of fantasy and spectacle and harmony.

The musicians, all with big smiles on their faces, played until eleven, including two encores. Out in the crowd people went nuts with applause, stomping feet, whistling and calling, and I lost myself, if only for a few hours.

If you cannot view the video please click here to view it on You Tube.

friday faves - a lonely moment

From last November

“I think if Calvin was normal I wouldn’t worry about not having any bars,” I said to Michael as I glanced down at my cheap-ass 90’s Nokia TracFone. We were sitting atop Morse Mountain’s massive granite shelf looking down through the pines to the salt marsh below. Off in the distance open ocean met with sky in a parity of blues. I could feel gravity sinking me into the hunk of stone that cascaded down beneath my feet into a valley of trees, some felled, brittle and ashen, others like hundreds of outstretched arms.

Being far away from Calvin, not to mention being unreachable, sometimes unnerves me to the point of nearly feeling ill. I kind of get the jitters akin to drinking too much coffee, the caffeine (worry) gushing through my veins with such force I swear I can hear it in my head. And though it had been over seventy days since Calvin’s last obvious seizure (a record for him) the edge is always there, the cloud always casts its long, dark shadow on me, I still look over my shoulder and wait for what I can only believe—after seven years racked with seizures—is the inevitable.

I sat quietly on the bluff with my eyes closed while Michael snapped off several photos. I focused on the meaty click, click, click of his camera’s shutter amidst unbelievable calm. It was beautiful, sunny and as clear as the eye could see. Two hundred feet below us a river snaked through mud and reeds leading to a long, wide beach hugging a grey and white surf. I was with Michael, but I felt lonely. I missed Calvin and, though it’s probably never good to do, I imagined him there with us, scampering around on the dry, rough rock picking up pine cones, chasing chickadees and clowning for his dad’s camera. There was an aching pit in my heart—my gut—yearning for my boy to then come sit in my lap and together spy the osprey floating on thermals. But the scene was starkly incomplete: no pitter-patter or scuff of little sneakers, no sweet voice expressing surprise or glee, no child exploring independently then returning to us like a wave to sand. The moment felt as if someone dear had died, and I held the memory of Calvin close, missing him while at the same time knowing he can never fill that particular and hollow void in my life, even if he was right there beside me.

But luckily for me, Calvin’s pure spirit seeps like juices into many of the empty spaces that having a disabled child who cannot speak, cannot walk by himself, cannot communicate and suffers seizures leaves. His love finds the smallest crevasses filling them with the kind of color and light that no camera can quite capture, and no lonely moment can completely escape.

some good news

Finally, we got some good news about Calvin’s health: the nephrocalcification in his kidneys has improved, almost to the point of looking normal to the radiologist and his nephrologist, who both read yesterday’s sonogram. It’s unclear why he had what they sometimes call sludge or brightness in his kidneys—little crystals of calcium that can form into stones. Perhaps it was due to the years on the ketogenic diet, perhaps it was the lack of citrus in his diet, maybe he wasn't drinking enough, perhaps it was all the goddamn antiepileptic drugs he has to take, or perhaps the culprit was his high protein intake that came on the heals of the ketogenic diet. But like everything with Calvin, no one knew for sure. The nephrologist wanted to put him on a drug to improve his kidneys' condition and to avoid stones. Another drug, I thought. Ain’t gonna do it. My hunch told me that his relatively high protein intake (what mother knows how many grams of protein per kilo of weight their eight year old eats? I do) and when we reduced the protein in his diet his urine calcium to creatinine ratio dramatically improved, sans drug.

While Calvin was on the ketogenic diet we had to check his urine twice daily for ketones. Since he wasn't potty trained (still isn't) we’d have to put cotton balls in his diapers to absorb the urine. Then we’d press the soaked cotton balls through a large syringe wringing the urine out onto a test strip. On top of those tests we did a complete urinalysis plus calcium-creatinine ratio every three months. Calvin has had several sonograms and twice as many visits to the nephrologist. Now, with this good news in hand, we don’t have to do any of it for two years! One less test. One less trip to the hospital for imaging. One less doctor’s appointment. One less reason to have to consider more drugs. One less thing to worry about, which is the best kind of news I can get.

photo by Michael Kolster

dark spots on a bright day

seizures. sleep deprivation. crazy kid. reply to all. bad drivers. stubbornness. wrong side of the bed. know-it-alls. out of milk, out of coffee. robocalls. drugs, drugs, drugs. eye poking. exploiters. bad movies. rudy bombs on the bottom of my shoe. busybodies. headaches. liars. a busting garden with no one to share it with. bad connections. hospitals. gawkers (sometimes.) wilting peonies. manipulators. doctor's appointments. no school, no nurse. dog underfoot. bad hair day. not being heard. cold motorcycle. complainers (including and, as you can see, most notably me.) the beach i can’t get to with calvin. cocktail hour oh-so far away.

squall

I stood in the still of a late afternoon garden, a bank of dark clouds crouched just to the north. Birds fluttered and zipped past, chipmunks chirped. Electric pink peonies hung their heads in the calm while others, still mere satin balls, stood erect as if on watch.

The squall arrived with little notice other than the foreboding sky, its winds whipping branches and sheets of rain in every direction. “Oh, the windows!” I called as I ducked inside, and my father-in-law—my Pa—closed the French doors while I ran upstairs to shut windows against the battering rain.

Within minutes the flurry had moved through and left strewn in its wake broken branches, maple fronds and a puddle of pollen swirling like curls of yellow smoke laid down flat into its surface. I watched the sky and the kitchen itself go from dark to eerily luminous as I began preparing Calvin’s dinner. He’d been sick for a day or two, suffering a stuffy, runny nose and a subnormal temp. I mentioned to his nurse Sandra, who was in the next room with Calvin, that I felt that a seizure was on the horizon.

Moments later I heard Calvin crawling behind me on the floor of the kitchen, Sandra pacing along closely at his feet. He was making an odd wheezing sound and when I spun around I saw his face flushed red.

“He’s having a seizure,” I cried out.
“But he’s still crawling,” she replied, perhaps somewhat perplexed.

We bent to pick him up then carried him to the green couch and by then all color had left his face save bluish lips. His eyes, like a doll’s, stared vacant and glassy in their sockets. He gagged a few times but didn’t vomit, didn’t breathe either. His body twitched as I gently pulled off his shoes. “What’s the time?” I asked his nurse, and she reported as the minutes ticked by.

We were all beside him—Michael and I close in and on our knees, Sandra just behind—when Rudy joined and nuzzled in between us near Calvin. We stroked Calvin’s skin, called out to him, “Come back, baby, come back,” but the seizure, like a storm caught in an eddy, whipped around in his brain and showed no signs of passing. But we stayed with him, waited it out, and kept calling for him to return. Finally, he whimpered and tried feebly to suck his thumb, the telltale signs that the seizure was over. And like the squall that had so stealthily pounced then retreated, the seizure had lasted seven minutes, leaving us broken and tearful in its wake.

The following video featuring one of Calvin's recent seizures may be difficult for some to watch.

what kind of kid?

What kind of kid would Calvin have been if not for the seizures, the drugs? It seems, from having heard a few recent segments on the radio, that the medical industry is finally fessing up to what I, as the mother of a child with medically refractory epilepsy, have felt in my gut for years: that short uncontrolled seizures perhaps can cause damage to the brain. Duh.

I remember a friend telling me that, back in the early nineties when his infant son started having hundreds of seizures each day, the common theory about seizures was that they didn’t cause brain damage unless they lasted over thirty minutes. He went on to say that, in what he perceived as some swift and arbitrary manner, the medical community suddenly revised that number to ten minutes.

If I had to guess, I’d say that neurologists don’t really know the full effects of seizures for sure. For the most part I feel like I instinctively know as much as they do when it comes to my son’s epilepsy. I live with him. I anticipate, hear, see, feel and grieve his seizures. I see the fear they incite in his eyes and feel it in mine. I witness the nuance from one seizure to the next. I hold my breath each time Calvin has one (they last between four and eight minutes, of recent, and during their initial stage he stops breathing.) I wonder, as I look into his vacant eyes, hold his blue hands, stroke his trembling body, what kind of havoc the seizures are wreaking on his developing brain. Do they rob his skills? Change his personality? Destroy his potential? I have little doubt.

Recently, I asked Calvin’s new neurologist if he backed medical marijuana as a treatment for epilepsy. He told me that he doesn’t prescribe it, so I asked him why. He said that there was no hard and fast evidence or double-blind placebo studies proving its efficacy. He also mentioned how, if his practice prescribed it for adults, there’d be a rash of people coming in for all sorts of (bogus) reasons wanting a prescription for it. I wonder if this conjecture stems from stigma, a rationalization that in turn limits access for millions of needy patients, perhaps because of an unproven fear of abuse by few. And besides, many of the anticonvulsant drugs used to treat childhood epilepsy have never been tested on young children and yet neurologists continue to prescribe them nonetheless. We are left with few options but to give these drugs to our children without fully understanding the short and long term consequences on their health and development.

I feel there’s something inherently wrong with this model. But I’m not sure how to fix it save advocating for the option of medical marijuana to treat childhood epilepsy citing convincing anecdotal evidence until we can get some double-blind placebo studies into motion. That, however, might take years considering the prudish and puritanical bent of some constituencies and the threat that the use of a simple medicinal plant might pose to drug companies.

Until then—and though I love Calvin just the way he is with every cell of my being—I’ll have to watch him age but not change much, watch him grow yet remain a child, watch the years go by, the seizures continue and the drug side effects torment, knowing that with each seizure and each dose of anticonvulsant drug my kid endures puts him farther and farther away from feeling good, from walking and talking and from being the kind of kid he might’ve become.

i miss you dad

I miss you Dad. It’s been a long time since I last saw your face, laughed with you, held your strong hand, gave you a hug as you hugged me back lifting my feet off the ground. I miss our wrestling matches. I miss helping you tend to your amazing garden. I miss tossing the ball with you. I miss watching you officiate at swim meets, so proud that the tall handsome starter in white was you. I miss eating your soft-boiled eggs with butter and salt watching you lean your hip against the kitchen counter, bowl and spoon in hand, reading the morning paper.

I miss you Dad. I used to love listening to your litany of jokes just to watch you crack up—crinkled up nose, squinting eyes filling with tears of joy and amusement, wide jumping shoulders, unmistakable hoarse cackle. I miss pouring you more wine when you weren’t looking, just to take your sometimes somber edge off. You liked relaxing. You didn’t do it enough.

Dad, you went away far too early, in the prime of your retirement, finally resting after thirty years of what became monotony at a desk job on a florescent-lit floor with hundreds of busy clones in crisp white shirts and ties, the token female always the secretary. You should have had many, many more years ahead of you the way you kept your body and mind in such outstanding shape. No man your age—nor half your age—could hold a candle to you. But that insidious cancer, your body’s own cells attacking, painfully eroding your very marrow, chemotherapy sickening you to the core.

I’ll always remember the pillar which was you. I feel we are so alike and am thankful that your strength and stamina runs through me like a steely rod. It’s in great part because of you that I can withstand so much of what life throws my way.

I miss you, Dad. I wish you could see us now. I can imagine you cuddling with Calvin, tickling him and kissing him and bouncing him hilariously on your knee like you did with me. He would crack up the same way we used to. You are part of him. The two of you wouldn’t need words, just time, just togetherness.

I miss you, Dad. I think of you every day.

Originally published 06.19.11.

Donald Murray Shake, February 20th 1925 - January 16, 1996

dream by day

Those who dream by day are cognizant of many things which escape those who dream only by night.

—Edgar Allen Poe

photo by Michael Kolster

friday faves - the three of us in one bed

From last June

yesterday

five a.m.
the three of us in one bed
happy shrieks
sleepy coos
little snores
then at breakfast
hardly ate a thing
gurgling bowels and
grinding teeth
runny nose

noontime
napping in the car
glassy eyes half open
as if in some
catatonic state
this is what he
does when he is sick ...
or worse.

at home
manic giggles
staring straight at the sun
any chance he can get
stubborn legs refuse
to walk
pulling my hair
trying to tell me
something is wrong?
i just figure it’s
the drugs
wandering up the street
i call to a neighbor
he’s never done this before
i struggle to keep
him upright

soon
daddy comes home
i’m in the back field
with calvin
walking on moss
the sun at our backs
daddy brings me a
glass of wine
he has a cold beer
it’s saturday evening
the meadow is golden
spongy under our feet
calvin rolls in the grass
seems happy enough in this

idyllic moment

afterwards
calvin sits in his chair
slumped and sallow
patchy cheeks
this is the seizure
here it is, i say
i unlatch him, unbuckle him
carry his stiffening body
to the couch
like i have done
hundreds of times before
his lips turn blue
not a breath passes over them
i stroke and kiss
his sweet pale face
and hold his
little trembling hand in mine

three minutes later
it’s nearly over
he cries and i cry
a pained expression on his face
and i still have to
get his seizure meds in
somehow
he opens his mouth
to take them in
all six of them
sunk into yogurt
still crying still in pain
i cradle him
and take him upstairs
new diaper
more medicine
for his raging headache
still crying
rubbing his head
michael bundles him up

kisses his face
six-thirty p.m.
the three of us in one bed

photo by Michael Kolster

love, no matter what (video)

In 1989 I met a handsome Brit named Ian. He led the down-to-earth photo safari which my brother and I enjoyed in Kenya and Tanzania that year. Ours was a brief romance but we stayed in touch for years and I revisited him in Kenya a decade later. To this day we still correspond. Now, he and his smart, beautiful wife Maggie and their two young sons run Wheatland Farm, an ecotourism destination in Devon, some miles southwest of London.

Yesterday, Ian sent me this video, which features Andrew Solomon, author of Far From the Tree, (which is awaiting me on my night stand) along with a message that read, "This one made me think of you ... it's very worth listening to."

I hesitate to say much more about the video besides the fact that it is clear that my dear friend Ian knows me well and that the message in this video is beautifully, poignantly profound, particularly—perhaps—if you are a parent. I highly encourage all of you to watch.

Coincidentally, and especially considering the nature of the video, when I googled Wheatland farm I found a Virginia farm of the same name that caters to children with special needs.

Thank you, Ian. You continue to touch many lives.

If you cannot view the video click here to view it on you tube.

bright spots on a grey day

husband. smiles from my boy. slow dog. peony bobbles. nan’s garden. dark chocolate squares. birds in their bath. calm. wet black bark. new growth. rain on my face. lulu in the sidewalk. sudden downpour. little old lady behind the wheel of a porche. hugs. one incremental antiepileptic drug reduction. hope. cafe creme mini latte. radiohead. misty wind through my hair. quiet house. orange poppies and purple pansies. birdsongs in the forest. red cowboy boots. jeep wrangler with monster wheels. holding hands. michael’s silver ambrotypes. annie. clock chimes. thankfulness.

unforgettable

She says, with tears in her eyes, that he is unforgettable. I can tell that she loves Calvin. She tells me that he reminds her of our mother, something that I’ve thought before numerous times, although he’s got his father’s and grandfather’s clear blue eyes.

She's here to help and to learn and perhaps one day to watch our boy so Michael and I can get away for a night or two.

Her patience is long, longer than mine of late, enduring my grumpy cussing and sharp words, enduring Calvin’s hair pulling and occasional shrieking, his stubborn refusal to walk where we want him to go. In a swift move to avoid a catastrophic shit storm she grabs a wet washcloth and scoops up a handful of loose stool oozing out the top of his diaper and onto his pants, shirt and highchair and onto my knee. “Jeez, Caron,” I say, most impressed with her speed, finesse of the cloth and utter lack of repulsion.

Later, she gets on the phone with Mom, who lives three thousand miles away.

“I need you,” Mom says to her, and asks when she’ll be visiting.
“In a couple of weeks,” Caron replies, giving Mom her standard answer of hope, the endorphins of which will last in Mom’s brain for hours even as the memory of those same words fades.
“Goodie, goodie,” Mom pipes in a gravelly voice.

She hands the phone to me and I joke and quip to make Mom laugh while Caron plays with Calvin in the jumper. I ask Mom how the weather is and she does her best to tell me, “The windows ... the things are up ... and I can see there’s white up there.” I ask her if it is cloudy and she says, brightly, something like, “That’s exactly ... you know what it is,” and it’s clear that she knows and appreciates that I get what she is trying to say.

We say I love yous a couple of times over and as I hang up the phone I wonder, as I often do, if it might be the last time I’ll hear her tender voice.

Calvin is giggling in the jumper, wantonly pulling Caron’s hair. Before the moment is lost I grab my camera and snap a few, the results of which somehow remind me of my childhood days with Mom. And then I see a glimpse of my boy's smile and forget about my frustrations and lack of patience and think, like she, how truly unforgettable he is.

Calvin and Caron

the cove

The back roads smelled of lilacs, the sun high in the sky. Rubber met hot cement at fifty miles an hour then slowed to a purr as the road narrowed then crested before spilling into the mouth of the cove. Once there, I dismounted and wandered toward the water to perch myself in the warm, smooth hollow of a boulder easily twice my size. Wind whistled through my helmet, its gusts playfully shoving me around. I could swear the rock and the land beneath me were moving, felt as if I were on a ship out at sea.

Several yards off lay a wooden canoe, stranded, half of its green body dipped in water tugging at its belly. A breakwater cloaked in seaweed and kelp stretched into the waves like a golden arm. On a nearby beach a boy in shorts and sneakers crunched across pebbles and skipped rocks sidearm into the bay. The sky shined clear, scant clouds clinging to the horizon just above a thick band of trees. The clouds looked lonely and for a moment I wished for them that they could possess life. But as I began to consider what that meant—life's pain and struggle and hardship—I realized that they were better off simply floating then dissolving into nothing as if on a whim. Perhaps one day I’ll be like one of those clouds, I thought—I hoped.

As the wind picked up, tiny whitecaps formed like thousands of fingers crawling toward shore. Each had a voice of its own and they spoke to me in a hush as if a river falling over stones. Voices came to me, too, from the rustling leaves and the birds and a great calm embraced me as I closed my eyes to the sun. I hope my boy is okay, I thought, keenly aware of my fear of seizures or of injury from a bad fall or of some hurt that he can't voice. If only for a moment my worry, like heavy stones in my pockets, drown there in sun and wind and waves and clouds and leaves and birds.

I flared my nostrils and took in the salty breeze off the delta, which the tide had begun slowly reclaiming. The place reminded me of the clam flats and oyster beds of Hood Canal where I’d often spent summer vacations as a kid. Dad used to set me on his shoulders to hike the muddy trail from campsite to delta and back. Mom, crouched in a half-submerged folding chair shucking oysters into a bucket between her boots, became a perfect mental snapshot. Dad dug elbow deep for geoducks while the rest of us clowned around shoving each other into holes hidden by the murky water, which then filled our boots. My kids will do this some day, I'd thought—I'd hoped.

As I left the place, I glanced back at the boy who’d been tossing rocks. He and his companion were resting in the sun on their own boulders, clouds skirting around the edges of things and the voices of the cove whispering, hush, hush.

photo by Michael Kolster

apogee and abyss

To have dived deep with a thousand fish,
sailed mile-high steering a flying ship;
To have body surfed at the Golden Gate,
and cut black diamond in the Matterhorn’s gaze.

To have crossed the Danube, Seine and Nile,
touched Grand Canyon rapids and Kilimanjaro’s smile;
To have reveled in some grand hotels,
and huddled in the darkness where Maasai dwell.

To have eaten dim sum on Hong Kong Island,
ostrich in Kenya and chitterlings in Oakland,
Edam in Haarlem and kimchi in Seoul,
tapas in Madrid and in Rio de Janeiro.

To have scaled the Great Pyramid’s sacred steps,
and descended into its black depths;
To have slept and dined in Turkish homes,
and swum among Grecian ruins.

To have been lied to, cheated on, discharged and laid off,
robbed blind, psyched out, picked on and put off;
To have been overworked, hard up, in debt and at risk;
To have covered up, undermined, gambled and lost it.

To have dropped out, boozed up, dragged on, passed out,
thrown up, miscarried, broken down and cut out;
To have lost a brother, scattered ashes of my dad,
now to watch my mother melt away into sand.

To remember all of these things that I’ve felt and done—
none have raised me up or dragged me down like my son;
my little boy is both despair and utter bliss,
Calvin is my apogee and my abyss.

photo by Michael Kolster

save me

Save me from the people who would save me from myself.

—Gang of Four, from their song Muscle for Brains

photo by Michael Kolster

friday faves - edward scissorhands

From last June.

 

My niece Madison was in town for a long weekend visiting from Arizona. We had two days of glorious sunshine and two days of total deluge, which made for a variety of adventures such as kick-boating down the Androscoggin river fishing for smallmouth bass, lunching harborside on fried haddock sandwiches and lobster rolls, watching movies and eating plenty of ice cream.

One night, after Michael put Calvin to bed, we projected Edward Scissorhands on a sheet pinned up in front of the French doors. The film had barely started when my eyes began to sting watching Edward, played by Johnny Depp, living alone in a dark mansion on the hill. The mild boy had been orphaned after the sudden death of his loving father-inventor, played by Vincent Price, who died before he could give his boy hands, before he could make his boy whole. Instead, Edward lives his life with scissor-hands, which he uses to carve shrubs and towering blocks of ice into beautiful sculptures. Regrettably, though, his scissor-hands inadvertently cause harm, sometimes nicking his own face or slicing the flesh of others who Edward is simply trying to help. Like Calvin, Edward is kind and loving, though Edward is not well understood, Edward is disabled and Edward is alone.

The film made me think about Calvin and his various disabilities, about how alone he is with no real friends, no one to truly understand him, including me. I thought about how his disabilities sometimes cause him pain, like when he has seizures or when he falls or bumps into things because of his poor vision and balance. I also thought about how he unintentionally hurts others by pulling hair and butting heads, flailing fists and kicking feet. Perhaps he’s just trying to tell us that something is wrong, but we can’t understand, thus we often don’t know how to help him.

In one of the film’s scenes Edward appears on a daytime talk show in front of an audience of frosted-haired, pastel-clad women. The host takes questions for Edward using a microphone. Upon hearing that Edward is interested in meeting a doctor who can help him with surgery or prosthetics, one woman stands up and says, “But if you had regular hands you'd be like everyone else.” She goes on to say, “Then no one would think you're special.”

The line stabbed me as I thought about poor Calvin who, like Edward, can’t eat with a knife and fork, can’t dress himself, can’t hold hands or embrace a sweetheart, can’t make himself understood. And though Calvin does not have scissor hands, it appears that many people find him difficult to engage with and most don't even try. I'd give anything for Calvin not to be special, not to be disabled.

Because once Calvin steps off of that bus at home, in a way he is alone. Calvin's aloneness is in great part due to his disability, his inability—our inability—to easily engage in activities and functions without disastrous failure, the risk of physical injury or deep psychological bruising. And so, oft times we find ourselves sequestered to our own little refuge—no dark mansion on the hill—just a two-story cedar shingle house with a red roof. And, like Edward, I spend my time out back in the garden where—unlike Calvin’s disabilities—I can control life with something as simple as a pair of shears, sculpting dreams of my own and hoping that somehow, some day, I can make my special son whole before I die.

girl time

I’ve been spending a lot of time with my girls of late while Michael has been out of town. They’ve made me sweet potato and parsnip pancakes and blueberry smoothies and have spent the night. They've helped me with laundry and mowing and grocery shopping and gardening and watching Calvin and cleaning dishes and making beds and walking Rudy and vacuuming and just simply keeping me company over gin and tonics, old-fashioneds, glasses of wine, take-away Thai food and lobster rolls at Red's.

Thank you Lucretia, Maura, Natasha, Ann, Lauren, Zoe, Akiko and my sister Caron, plus all of my other homegirls (not to mention Roger and Kevin and Elmer) who've checked up on me in recent days just to make sure we're okay.

Akiko

fill me up and keep me going

One of my beloved readers commented on a recent blog post. I know nothing about her save she shares my sister-in-law's name, Julia. The first time she wrote I begged the question and she explained that, no, she was not my sister-in-law but rather a random reader. At times she has signed, "Julia RR."

When I hear from readers I am often reminded of the deep fondness I sometimes have for those who are essentially strangers to me. At times I feel more compassion, empathy and concern—more of a connection—from these individuals than I do from some members of my own family. Their thoughtful comments fill me up and keep me going. This is what Julia wrote:

Yesterday you posted this: "Since then I’ve tried hard to put myself in others shoes, tried to walk just one puny mile in them, and yet can never fathom the marathon of their suffering. I try to make a difference in some small ways—do what I can—but it's never enough." This approaches an explanation of why I keep reading your blog, but it's not complete. It's missing something.

And then today, you posted this: "the burden, heartache and delight of a disabled child like Calvin," and that's the missing piece. The delight of ... Calvin. I don't understand it, I can't fathom it, but it's there, and you share it along with the heartache and burden. And by reading and trying to understand, I am stretched.

Thank you.

not-your-sister-in-law Julia

To know that what I write can "stretch" someone—something I aspire to do as much as possible in my own life—is humbling and deeply gratifying. To see those words written down in front of my own eyes and to know that this reader and a handful of others, some who live thousands of miles away, think about me and Calvin and take the time to tell me as much, simply warms my soul.

Thank you, dear reader(s) for your genuine devotion, your candor and your love. You take me from one day into the next.

on grief

Between grief and nothing I will take grief.

—William Faulkner, The Wild Palms

photo by Michael Kolster

the memory in things

There is a memory of people in things. Some came to me in bits and pieces yesterday morning. Briefly, I mistook Calvin’s chirp for the unmistakable whistle Michael gives me, like a canary to its mate. Then I thought I heard the floor squeak and imagined my father approaching as I embraced Calvin, holding his head in my palm. As seven neared, the morning light streamed in low and westward and I wondered if Dad would’ve been proud of me, wondered if he would’ve understood the burden, heartache and delight of a disabled child like Calvin. I sipped my coffee having never questioned, until now, if Dad liked his black or with milk or sugar.

These glimpses of people reflected in things feels sacred. The embrace of a friend whose fragrance is of lilacs conjures my mother wearing a patchwork smock speckled with flour. The smell of the neighbor's cookout takes me back to hot dogs and doughy biscuits roasting on the ends of sticks, which my dad taught me how to whittle. At night Orion hangs in the sky begging memories of Ronan, the boy who I never met and will never meet, of his mother who perhaps steps lightly between shadows of things that belonged to him, might pad across the same floors that she had with Ronan in her arms, maybe brings the coffee to her lips and thinks of the cup or bottle she’d brought to his lips not so long ago.

Sometimes, when I find one of Calvin's socks floating under the covers in my bed, I sleep with it clutched in my fist, its fluffy whiteness nearly impossible to bear when I think of his hardships. I imagine doing the same every night if he were to leave me. I think of my grandmother when I step into a neighbor’s closet which reeks of mothballs. He gathers up a pile of his dead wife’s sweaters and a garden cap for me to wear. Do wisps of hair trailing across my cheek remind him of her? And as I leave his house I glimpse a vase, standing just so, glowing in the rippled light of old windows and I think of my mother, now a shell of a woman and yet—as if that very vessel—she holds the entire universe within her.

As I sit here writing I look out onto clouds of white and blue forget-me-nots that drift between the rhododendrons and azaleas and iris. I remember when my mother met me in San Francisco and we traveled north to scatter my father’s ashes in a sylvan glen at the base of the Dipsea trail in Muir Woods. I asked her what kind of flowers were dotting the hollows between fallen trees, moss and rotting stumps, and after a moment's pause she said, “I think those are forget-me-nots.” And I understood how beautifully simple things can hold a soul, a memory, a moment, a life.

not just in the movies

Since Calvin was born, watching movies feels different. My senses have heightened and my nerves have splintered raw. I can still take most any genre—horror, suspense, drama—but now, it’s the occasional image I feel the urge to sensor with both hands over my eyes.

Shortly after we brought Calvin home from the hospital for the first time, when he was nearly two months old, we rented the film The Magdalene Sisters. A drama based on fact, it portrays the enduring hardship of three Irish girls having entered—against their will—an asylum for wayward teens and promiscuous girls known as the Magdelene Laundries. Some girls had been impregnated by their own fathers, others were deemed too flirtatious or too beautiful to be out in society. They were sent to the abusive institutions, which were run by the Catholic and Protestant Churches during the 19th and into the 20th century.

In one of the first scenes a teenage mother bears a child out of wedlock. The infant is snatched away by her parents and given up for adoption. Childless and grieving, the new mother is immediately cast into the asylum where she is forced to do hard labor in its institutional laundry. On her first night there, robbed of the child meant to nurse at her bosom, she suffers the excruciating pain of engorgement and the indescribable despair of knowing she’d never hold her child.

My heart hung heavy as I watched. I ached for the girl, knowing her physical pain—I’d felt it myself—grieving her loss, her despair. The scene reduced me to silent tears, its watery images skating across my vision like sharp sheets of ice. I knew it’s truths, and I knew of other such atrocities in the world that were ongoing just as I sat comfortably watching the film.

When Calvin was born he came unexpectedly early—six weeks premature. Because of his neurological problems we had planned to deliver him during a scheduled cesarean in Boston. There were to be a number of specialists at our side: pediatric neurologists, a neurosurgeon, neonatologists and donor platelets in case of a suspected brain bleed. But Calvin surprised us all when he decided to come on his own and therefore had to be delivered by emergency cesarean in Portland, Maine. Some of my platelets were hurriedly extracted in case he needed them. The result was a platelet count so low that, if given an epidural, I’d risk a spinal bleed. So they put me under a mask, pumped anesthesia into my veins and cut Calvin out. I didn’t see my wee boy until he was twenty-one hours old. Even so, he was just beyond my reach inside a clear plastic capsule under bright lights in a room filled with alarming buzzes and bells, busy nurses and masked doctors tending to several other preemies each boxed in their own isolettes. It felt like days before I was able to hold my precious newborn, albeit, for mere minutes at a time. My body literally ached for Calvin, day and night.

Often it’s a movie like The Magdelene Sisters that moves me to tears and provokes despair. But sometimes it’s a news story describing the victims of an earthquake or tsunami or genocide or human trafficking, that causes me to deeply reflect on the suffering others endure. I remember walking the streets of Addis Ababa, Ethiopia with my brother Matt on a layover from Egypt. We saw countless, hungry poor slumped on hot sidewalks wearing rags with their crippled, malnourished, diseased children propped at their sides, a few coins at their feet. Flies encrusted watery eyes as they held out their slender hands. I gave what I had in my pockets knowing it wasn't enough.

Encountering these hungry people reminded me of the first time I’d seen a homeless person lying motionless on the streets of Seattle as passersby nonchalantly stepped over him to get where they were going. I’d touched my companion’s arm to stop and ensure that the man was okay—alive—and was ushered to continue on. I worried for the homeless man and was shocked by such apathy.

Since then I’ve tried hard to put myself in others shoes, tried to walk just one puny mile in them, and yet can never fathom the marathon of their suffering. I try to make a difference in some small ways—do what I can—but it's never enough. And then I crawl into my bed at night and dream of my little boy, asleep in the room next to me, warm and dry and fed, a scene that—tragically—to some would seem real only in the movies.

Originally published 12.18.11.

photo by Paolo Roversi

the hierarchy of poop

In monitoring Calvin's bowels, a necessary evil in keeping him regular, I have developed a hierarchy of poop, for which Calvin's teacher and ed tech, Mary, helped with the visuals. It is tacked up in the bathroom at school, each BM fastidiously documented on Calvin's daily summary sheet. Because when shit happens, I need the details.

loose = watery, ketchupy, but can have some chunks:

 

 soft = thick applesauce or soft hummus. perfect poop:

 

sticky = just like it sounds, more like peanut butter or like dog poop:

 

firm = clay like, wad, does not stick to his butt but forms into a ball of sorts, like pie dough:

 

smudge = self-explanatory
small = 1/4 cup or less
medium = 1/2 - 3/4 of a cup
large = a cup or more