sleeping in the forest

I thought the earth remembered me,

she took me back so tenderly,
arranging her dark skirts, her pockets
full of lichens and seeds.
I slept as never before, a stone on the river bed,
nothing between me and the white fire of the stars
but my thoughts, and they flowed light as moths
among the branches of the perfect trees.
All night I heard the small kingdoms
breathing around me, the insects,
and the birds who do their work in the darkness.
All night I rose and fell, as if in water,
grappling with a luminous doom. By morning
I had vanished at least a dozen times
into something better.

—Mary Oliver 

photo by Michael Kolster

mother's day

Mother’s Day is often bittersweet for me—not a day to necessarily celebrate—what with Calvin’s disabilities and chronic epilepsy and my own mother’s slow decay from Alzheimer’s. So yesterday, as usual, I experienced a mix of emotions thinking back to the day when Michael and I learned that our unborn child had something terribly wrong with his brain; that for some unknown reason—despite the healthiest of pregnancies—he was missing a significant amount of white matter. Those days leading up to and including his birth were some of the most difficult days of my life and remembering them is painful.

Growing up, on Mother’s Day we all gave my mom funny cards, some store-bought, some not. My brother Steve once made her a wooden plaque in the shape of a shield sprayed green and gold with the words BEST MOM AWARD. She hung it on the kitchen wall for years. In junior high school shop class I made Mom a groovy plastic flame-colored envelope opener and a wood chopping block. She got flowers and plants and later Mylar balloons. Sometimes I drew her cards with birds and hearts and flowers that said, “I love you Mom.”

On Mother’s Day I know that none of these kinds of things will be mine.

But the first sound I heard yesterday morning was Calvin calling, “Uh-uh”—his way of saying “Mama.” I went to him, removed the netted canopy from his bed, unlatched and lowered the safety panel and crawled in with him. A huge smile spread across his face as he began showering me with hugs and kisses.

Cards and gifts will fade or be thrown out, get packed up into some anonymous cardboard box in the basement or be lost in moves. Flowers will wither, balloons will deflate or sail away, plants will one day die. But these moments with Calvin will last forever, if not always in my mind, then in my heart, in the marrow of my bones, and mean more than any bit of physical evidence I could glean from a son on Mother’s Day. At least that is what I tell myself.

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J.C. Leyendecker

mothers

My mother's mother, Sylvia

My mother as a child

Mom

Me and Mom

Calvin and me

brick and flower

My husband Michael and I watch a lot of movies, mostly at home. Not too long ago we saw one about a couple whose four-year-old son had died in an accident. The plot caught us off guard.

Throughout the film I found myself identifying with the grieving mother. I stepped into her shoes click-clacking down the grocery store aisle as she watched another mother argue with her child. I sat behind the wheel of her parked car as she mournfully watched young dapper couples headed to the prom, all neat and shiny and pressed. I saw through her eyes the boys behind the glare of school bus windows sitting straight and confident in their seats. I felt her tears run down my face as she watched happy moments of other parents and their children, her own having been buried with her child.

In a scene with her mother, who mourned the death of an adult son, she asks if the feelings of grief and loss ever go away. "No" her mother says, "but it changes." "How?" she implores, and her mother describes the transformation of grief and loss into something that can be held, carried, like a brick in a pocket that at moments you forget until you reach down in and there it still is. The reminder. The loss. The brick.

I hold a brick in my own pocket, for the things that are lost to me because of Calvin’s circumstances, the things that he can’t do now—ride a bike, talk with his dad, tell me his dreams, play with friends, read a story, run in the yard—and for the things Calvin will likely never do—live independently, go to college, have children of his own. This brick is heavy and rough, cold, bulky. But in my other pocket I hold a flower that is forever blooming—that belongs only to me. Its supple petals are the ivory silk of Calvin’s skin and its fragrance is beyond imagination. As time passes this flower changes like a chameleon, becomes more beautiful and interesting over time.  Most of all this flower serves as a reminder of the wonderful gift that is my son, and gracefully—thankfully—balances the weight of the brick.

Originally published 5.3.11.

jerry

Jerry doesn’t know everything—no one really does, except if they’ve lived it—but she knows a lot. She was there when we announced our pregnancy, then she and her husband, Ta, followed soon thereafter announcing theirs. She was there when Calvin was born six weeks early. She and Ta brought some yummy “outside” food into the hospital, but sadly couldn’t visit Calvin in the NICU since they weren’t family. Besides my brother-in-law who drove up from Connecticut (who also couldn’t see Calvin) they were the only ones to visit us at the hospital in the first few days after Calvin’s birth.

Jerry was there with Ta and their son Oscar and Joe and his twins at Nigel and Kellie’s when Calvin seized, when we called 911, when the children were ushered outside while the paramedics checked on our little blue boy then whisked him away in the ambulance. Calvin lay listlessly on my lap as I reclined on the gurney, Michael following behind in our car. I could see the others disappear around the bend as we drove away. Jerry was just down the road when, later, Calvin had a forty-five minute seizure as we sat at his emergency room bedside crying and kissing him goodbye.

Another time, she was there boasting a brown paper bag full of sushi after Calvin had landed in the pediatric intensive care unit again due to another scary incident of status epilepticus—repeated prolonged seizures. She was there with her hugs and her kisses and her offerings to do anything we needed—anything.

Jerry was there, holding me as I sobbed in her upstairs bedroom with my crying boy while the three March toddlers (Calvin was meant to be born in March) and their friends and parents were celebrating birthdays downstairs. She’s been there to see me struggle to give Calvin his seizure meds, struggle to feed him his food, struggle to get him to sit up, to walk, to stop crying, to stop poking his eye, to stop pulling my hair.

Yesterday, Jerry showed up in my backyard with a beautiful bouquet of lilies that she’d bought for herself but then decided, after reading yesterday’s blog post, that maybe I could use them instead.

No, Jerry doesn’t know everything about what it is like to raise a boy like Calvin, but she sure knows how to be a true friend (and Ta's not too bad either.)

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Give to cure epilepsy: http://www.calvinscure.com

Jerry with her son Nico

wrong side of the bed

Some days I wake up on the wrong side of the bed and the world is grayish-black. Today is one of those days. I’m not sure if I feel this way because of sleep deprivation, or being jolted awake by Calvin crying, which is unusual of late, or because of the worry of an impending seizure when he surprisingly fell back to sleep after crawling into bed with him. Perhaps my mood is the reflection of the dark sky’s unrelenting rains, my aching body that has been trying to stave off illness, or maybe I simply need coffee.

Whatever the cause, my funk is exacerbated by little things like Calvin yanking my hair, or his inability to use a spoon even though we’ve been practicing since he was two. He was better at it back then. Now he can barely hold the spoon and when he does he flicks yogurt everywhere, gets only some of it into his mouth and the rest of it all over his face and hands. Then it goes in his hair and on his sleeve. Goddammit.

Further ruffling my feathers is Rudy the dog whose face practically sits in my lap as I try to feed Calvin, his hot shit-for-breath wafting up from his needy face, and Neko the cat who, after already being fed, jumps onto every counter attempting to lap up our residual warmed milk, devour pieces of Calvin’s sausage or slurp up his yogurt with her prickly tongue. You’d think she had tapeworms. Come to think of it, when we found her she did—the vet saw them crawl out while she was being spayed—but perhaps the seemingly innocuous twenty-five dollar pill that we gave her to annihilate them didn’t work.

But now the house is quiet, Michael having gotten a chuckle or two out of me—as he is thankfully known for doing—and having encouraged me to get some more shut-eye, before heading to his studio. Calvin didn’t have a seizure. Rudy and Neko are napping. My tummy is full of warm steel-cut oatmeal, almonds and coffee, the sky is somewhat brighter, albeit still pouring buckets, and the writing has lifted my spirits some. But I think I need to go back to sleep so I can wake up again—but on the right side of the bed.

get my gist

I've got a gist and it needs getting.

Lately Calvin has done a lot of teeth grinding ... morning, noon and night, though thankfully not while he is asleep—not yet, anyway. The hair-raising sound leads me to think about these other side effects that Calvin has suffered—most of which we continue to see—amidst the various antiepileptic drug treatments aimed at thwarting his seizures:

Status epilepticus, increased seizures, emergence of different kinds of seizures, developmental delay, respiratory suppression, sleep apnea and oxygen desaturation, insomnia, somnolence, lack of appetite leading to significant weight loss, difficulty swallowing, difficulty administering seizure medicine (Calvin has been known to hold drugs in his mouth for up to 90 minutes before swallowing) headache, dizziness, pain, extremely poor balance, asthenia, decreased muscle tone, visual disturbances, gastrointestinal upset, cognitive blunting, poor coordination, mood swings, mania, extreme hyperactivity, screaming, drooling, dangerously elevated liver functions, hypercalcification in kidneys that can lead to kidney stones and/or kidney failure, and self-abuse (eye poking, pulling his hair out, hitting his head with his hands, grinding his teeth.)

If Calvin is lucky he’ll outgrow his epilepsy, though the chance of that is slim to none, which means he—along with FIFTY MILLION others—will live a lifetime suffering these sorts of side effects—or worse—unless, of course, we find a cure. Get my gist?

Please share Calvin’s story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com