holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.

to love life

We sat in the closeness of the sticky mid-morning heat, our bare arms and thighs touching. The rickety bench Woody gave me, one that dropped another screw recently, held us even as it swayed under our weight. I wrapped my hand around hers and kissed her cheek. We drank little rivers—she a sparkling citrus-scented water from a can, and I tap water held in a heavy green glass. We listened to a goldfinch sing as the wind swept through the trees. It felt as if we were the only ones in the world, and tears of sorrow came to us both as we contemplated life's tragedies.

During our walk earlier, she and I talked of mosquito bites, politics, running races, friendships, gardens, daughters, sons. Something flew up the open leg of her shorts and stung her repeatedly. I peeked into the back of her waistband and a bee—or was it a wasp?—flew out. She bent and plucked flat leaves of plantain, put them in her mouth, chewed them into a mash and applied tiny wads to the stings as a medicinal salve meant to draw the poison out.

"Everything we need is here for us," she said, meaning that nature is the original balm, then adding that we've just forgotten how to use it. I thought of Calvin's cannabis oil and how well it seems to help quell at least some of his seizures.

On our walk home, we stopped to cut—with permission—bunches of nodding sunflowers from our friends' backyard. Some of the smaller ones, which were still closed tightly like little fists as if reluctant to open to today's world, reminded me of my newly-born, four-pound, six-week preemie's apple-sized head and cinched brow. What a difficult yet extraordinary road it has been since then.

Later, when early evening came around and as I washed up dishes listening to my Calvin moan and rustle in his bed upstairs, I was again on the verge of weeping. My son is so often out of sorts or miserable, suffering from one thing or another inevitably brought on by seizures and/or their drug treatment. Though it had only been five days since his last grand mal, I could sense one coming by his bad balance, stubbornness, intensity, neediness, sour breath, eye poking, fingers in his mouth and mine, the new moon on the rise. I thought again about my earlier conversation with my friend. While strolling along a wooded path we had discussed abortion and the recent Supreme Court's abysmal decision to reverse Roe. I told her that, had I known for certain early on in my pregnancy that Calvin would be born missing most of the white matter in his brain which would cause him to be legally blind, uncoordinated, nonverbal, incontinent, cognitively impaired and—worst of all—be pummeled by thousands of uncontrollable seizures, I might have chosen to end the pregnancy to spare his suffering. To say that life for him is limited and presents major daily challenges, pain and miseries would be a gross understatement. Lamentably, there is so very little that Calvin seems to enjoy, mostly because he's been ruined by the drugs which cause him, at the very least, to be impossibly restless, making it harder, too, for me to live the life I want to live.

Just before my husband arrived home for the evening, I sat near the open French doors which look out onto the garden. There, while I reflected on my day and wrote this post, I came across this poem by Ellen Bass:

The Thing Is

to love life, to love it even

when you have no stomach for it

and everything you’ve held dear

crumbles like burnt paper in your hands,

your throat filled with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you down like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.

    It struck me that I'd come across a poem so fitting for me, for my life with Calvin, and for the day I had just lived. 

    

    Just as Michael and I were sitting down for another sublime dinner in the screen porch, I heard Calvin make a strange noise. In that instant, I thought again about grief—ours, his, my friend's, everyone's—as I bounded up the stairs to find my sweet, pure, innocent beloved son—the boy who rocks my world in the most terrible, lovely, heavy (an obesity of grief) and amazing ways—as he was seizing again. I stroked his thigh and Michael embraced him and kissed his face. We've done the same perhaps thousands of times before and will very likely do the same a thousand times more, because Calvin is our precious son, and because it is our life, and in most ways we love it, and what else is there?

 

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

wishing on stars

The weight of the world weighs heavily, sometimes on me, often on others, terribly so on the people trapped by disability, illness, poverty, hunger, and by war and its unconscionable and needless suffering.

Calvin, war and suffering are just some of the reasons I don't believe in god. Not the Jewish one, not the Christian one, not the Muslim one. Not any god of organized religion over which so much of the world wages its wars. I don't believe in the notions of heaven or hell—except the ones here on earth—or Satan, or religion's anthropomorphic and patriarchal architectures, or the Bible's stance on slavery and subjugation. It doesn't make sense to me to worship a static, anachronstic god when the universe is expanding and evolving. What I do believe in is the breathtaking interconnectedness of everything in the universe—the planets and stars, the rocks, the forests and seas, the animals—and how we all are a part of it and will rejoin it in a more literal and elemental way when we die, when we again become stardust. The 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 memories of those whom I have touched and in the soil and sea where my ashes might scatter. I will sink into and become earth and sky, wind and river. I am and will be universe.

But when a friend tells me they pray for me, I understand, even appreciate it. And when someone whom I've never met offers me this kind of solace on a difficult day in a way which resonates in my bones, I melt into her words and heal just a little bit. In reading this, perhaps 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

—Elizabeth C.

I, too, send my deepest gratitude and love to you, Elizabeth, and to all of you, dear readers—brilliant stars—who lift me up, fill my heart, dry my tears, inspire me, send your love in prayers and words and wishes and gifts. You make my world—my universe—a better place to be, a place where, despite my burdens and my son's suffering, I can believe in the power of wishing on stars, and in wishing for peace and love and wholeness for the rest of the world.

the kids are all right

It was the first rough night in awhile. Calvin was restless for hours before waking up around 1:00 a.m., then never went back to sleep. Michael tried sleeping with him. I gave him extra THCA cannabis oil, a few sips of water and a couple of ibuprofen. Michael changed a diaper. But our efforts proved futile, so—exhausted—we finally left Calvin alone in his safety bed with his toys, lights and music while we tried to get some shut-eye despite his banging and howling in the attached room. My guess is he is ramping up to a seizure, probably tonight.

Having said that, Calvin has had only three grand mals and one focal seizure in the past thirty-one days. That's the fewest number of monthly seizures in over a year, and the fewest number of days with seizures in a month's time. And though Calvin could easily have three or four seizures in the next day or two, I'll take it over having seven to nine grand mals plus a smattering of focal seizures in a month's time (though if he does have a bunch of seizures this weekend, you can be sure I'll be grieving.)

But if he enjoys another longish stint between seizures—say, nine-plus days—I'll begin to think the new drug, Xcopri, might indeed be working to lessen his fits. Let's hope so. We kids need a break.

In the meantime, when Calvin is in school or at home with Michael, I'm managing to get out a bit for long walks in the mist, sun and wind, and on slushy, icy fields and trails. I'm having fun capturing some magnificent landscapes and skies on my cell phone and Panasonic, plus taking shots of Smellie and the ever-changing, sometimes dramatic evening skies at the fields. Layers are coming off in the milder weather, and songbirds are singing from tops of trees. Tons of smiles and waves have been coming my way, as well as visits with chatty strangers (must be the springlike weather). I'm slowly editing and adding to my memoir manuscript, which at this point is over fifty-six-thousand words despite having been largely neglected during the first two years of this damn pandemic. I'm having fun hanging out with my husband in the evenings listening to and watching Led Zeppelin and The Beatles, dancing like a fool in front of the fire, making us both laugh, watching some nice films and reading some good books.

So, yeah, in the scheme of things and for the most part, I'd say the kids are all right. 

a good day for musing

it's a good day for musing: on crystalline skies and arctic climes; on bundling up and trudging down open roads; on icy patterns fanning across salt-blanched tarmac and pristine white ponds; on a twenty-something runner with thick-braided pigtails jogging past me, smiling and breathing in time with her rock star companion, steven tyler; on a place so calm the music still found my ears from half a mile down the road.

it's a good day for musing: on the beauty of a frozen tidal cove; on its greenish gash resembling a clownish mouth, white pancake makeup and all; on its vast flatness; on the footprints of those who dared walk across as it invisibly ebbed and flowed; on the marvel of ever-changing landscapes; on two huge birds perched atop a gnarly oak; on their wide wings and undersides white as snow; on a skinny dog who runs to my side from the middle of the road whenever i call; on the musky scent of weed wafting from an open window of a passing truck; on having—only minutes before—filtered some alcohol-soaked bud in the making of calvin's cannabis oil, filling the house with its rich aroma.

it's a good day for musing: on freezing cold fingers sheathed in polypropylene gloves; on unknown yet friendly ones which wave to me from behind windshields; on the satisfying click of my panasonic's shutter when i push its shiny metal button; on finding someone's running shoes which had been buried in the blizzard then unearthed by a passing plow; on who might be missing them: perhaps a pigtailed runner?

it's a good day for musing: on juniors and seniors; on having known them and watched them grow; on infants and toddlers who turn into runners, skiers, skaters; on grade schoolers who morph into gawky tweens and smart, creative, athletic teens; on ellis, a sweet, curious and extraverted girl—calvin's first grade classmate, his first and only play date; on her mother, who stops by sometimes with flowers, jars of homespun applesauce or tins filled with herbal salve; on the bit of my childhood self who i see reflected in ellis—her effervescence, wit, energy, and unabashedness; on ellis' friend fiona, with whom i used to read books at school as calvin flailed, who now—all of a sudden—seems so grown up.

it's a good day for musing: on finnegan and his mother; on bringing the world to her in loving words and photographs; on our picnic and long walk one evening last summer; on reliving the feeling of jumping with her in the dark from a nearby bridge into brackish waters while wearing almost nothing; on the freeing feeling of trusting others; on laughter and weeping; on the sensuality of maine's extreme weather—heavy and sweltering at times, at others, clear and light with cold that cuts to the bone—all worth feeling.

it's a good day for musing: on my enigmatic child who never grows up; on the toys he's loved and chewed for years; on his wordlessness and seizures; on his peculiarity and fleeting moments of normalcy; on his steadfast and loving behavior; on having just had one of his best months, seizure-wise, in two years; on beauty in all its forms, understanding, forgiveness, gratitude and hope.

while alive

delight in the mundane. step outside—of doors, shoes, boxes, habits, expectations, comfort zones. dance like a maniac whenever compelled. sing until it hurts. scream until it swells and burns. let go more than once in awhile. marvel at the day-to-day. honor every emotion—bliss, anger, grief, sorrow. trust science and trust your gut. stand up for yourself and others. pursue truth. read books voraciously. explore new genres. try unfamiliar foods. keep your friends' secrets untold. jump pantless off low bridges into warm waters. eat cake for breakfast. hug others often as possible. damn all forms of bigotry. say i love you often. let go of petty obligations. question organized religion and its patriarchal architecture. embrace nature. befriend those who are wildly different from yourself. live simply. give to others. turn to music and film. breathe deep. love misfits and weirdos. forgive yourself and others. release regret and resentments. abandon fear and angst whenever possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. travel the world if you can, and if you do, get to know the locals, their language, their food. expect success. fail miserably—at anything. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. get lost. take risks while taking care not to hurt others. founder, but move forward with as much grace as can be mustered. listen well and live awhile in others' shoes.

looking into a chunk of ice i found on the side of the road.

secular blessings—there are so many

the free feeling of traipsing down the middle of a deserted road. the sound of snow and ice crunching underfoot. standing in the the center of that field alone. the shine off its glossy surface. thinking of the pennellville meadow sheathed in ice, its grassy tufts like waves in a frozen ocean. the hollow knock of a woodpecker disturbing the quiet. the sting of frigid air in my nose. friends calling and knowing they can cry on my shoulder. long good talks with sisters and brothers. post-booster, post-fever, post-seizure child spending most of the day napping in my lap, keeping me warm. seeing in-laws in their silly glasses on zoom. making a killer coffee oreo cookie irish cream chocolate fudge brownie ice cream cake for after christmas dinner. getting lost in the rolling flames of a fire in the wood stove. the sweet richness of bourbon eggnog topped with sugar-laced whipped egg whites and nutmeg sprinkles. friends and neighbors dropping by with goodies galore. smiles, gifts, visits and messages from once-strangers. so many beloveds. dream of our dear Arnd alive and well and among us. hearing from his parents the next morning. woody's kin dropping off a holiday care package in his absence. writing at the butcher block table as my husband busies himself in the kitchen. rosemary rack of lamb about to go in the oven. the roundness of a french horn with the charm of a harp. looking forward to watching the 1951 version of dickens' a christmas carol. all dressed up, no place to go.

on pandemics, mindfulness and mother nature

too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.

today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.

for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.

i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.

a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:

Pied Beauty 

Glory be to God for dappled things— 

For skies of couple-colour as a brinded cow; 

For rose-moles all in stipple upon trout that swim; 

Fresh-firecoal chestnut-falls; finches’ wings; 

Landscape plotted and pieced—fold, fallow, and plough; 

And áll trádes, their gear and tackle and trim. 

All things counter, original, spare, strange; 

Whatever is fickle, freckled (who knows how?) 

With swift, slow; sweet, sour; adazzle, dim; 

He fathers-forth whose beauty is past change: 

Praise him.

—Gerard Manley Hopkins

thanksgivings (in no particular order)

lovable son. stovetop espresso with warm milk. time by myself. a wonderful husband who totally gets me. jammy eggs on weekends. good nights' sleep. seizure-free days. mild weather. justice. white birch overlooking a green lagoon. cooking with fire. smellie, our most beloved dog, and the levity she brings us. maine, for the most part. the ability, time and place to run. feeling ever-so-slightly lighter. walking the college trails. laughing uncontrollably (sometimes at my own jokes.) steely dan. blonde redhead. david byrne. school days. teachers, ed techs, bus drivers. gifted administrators. sunlit leaves yellow as daffodils. cozy old home despite cracking plaster and creaky floors. wood fires in the stove. ambient light, mood light, candlelight and dimmers. homemade pizza. cut flowers in glass vases. hand-me-downs. quiet drives on back roads. taking in the landscape through senses and lens. making ice cream cakes with cookie crusts in a dozen tasty flavors (come try some.) friends made from strangers. walks on pennellville road. clean sheets. long hot showers. tangerine sunsets. moving films and funny movies. crusty frost on a grassy field. ghostly mists hanging out. bourbon on the rocks (within reason.) michael's mashers. bear hugs. dry firewood. witticisms. this particular community. being able to write and draw. peanut butter and raspberry jam sandwiches. the smell of sautéed onions and garlic in olive oil. ten-buck chuck taylors in assorted colors. deep conversations. buttermilk-brined spatchcocked turkey. honey-glazed, sherry carrots. relative health. meeting michael's students. thanksgiving gatherings. pumpkin and pecan pie. finnegan and his family. friends who check in with me through the grieving. talking long distance. covid rapid tests and vaccines. côtes du rhône. sunlight glinting off of wavy windows. a gifted jar of homespun applesauce and a bag of fresh mussels delivered to our door. seussian-looking trees. kind strangers. trusted friendships. relatives. devoted readers. love. music. blue jeans. 

river sky

For the first time ever, I traveled the familiar back roads on foot. It was an all-together different experience than driving the same route. More intimate. More wide open. More wild. More of everything I desire. I wanted to lose myself, my angst and grief in it. Dissolve into the big blue sky.

Although I wasn't solo, the walk reminded me of backpacking for seven months through Europe when I was only twenty-three—back when my world first opened up—often hiking lonely country roads from bus stops and train stations to hostels and inns. Having been swept back in time, I closed my eyes for a bit and lifted my chin to better feel the sun on my face and to smell the salty breeze. I noted the new black asphalt under my ratty white sneakers. Wind softly combed the pines as if to whisper as I stopped briefly to regard clumps of wildflowers gone to seed. Puffy white clouds settled on a horizon made of vast banks of trees. In that moment, it was quiet and gorgeous. Under the big sky, I felt my own insignificance, while also hoping I offered the world something in return for its generosity. And, I thought of Finnegan.

Going slow motion in what has become one of my favorite spots in the world offered me a much-needed release—from relentless angst over my disabled, seizure-prone son Calvin, certain nagging questions, petty grievances, and intense sorrow after the accidental death of my close friend's child, Finnegan, who, despite not seeing him often, was also dear to me.

My back roads companion was someone I befriended this fall. While driving around with Calvin during the first year of the pandemic, I had frequently passed Lynn and her husband as they walked from their house near the point down a long wooded road. As she and I roamed the roads together, we talked about friendship rifts, parenthood, love, loss, grief, romance. It felt good to be in the presence of someone fun and new who buoys me and seems to get this person who sometimes feels misunderstood.

As Lynn and I padded along, my mind kept drifting to my friend's son, Finnegan. He died last week in a kayaking accident on a raging river. He was young, talented and vital. Full of love and promise. I remember his smooth, tawny summer skin and blushing cheeks. I liked his spiffy hairstyles. I recall him playing the fiddle for me and a restless Calvin in his family's kitchen, the music seeming to come to and from him so effortlessly. I remember his smile and warm embraces whenever I'd stop in to visit, which wasn't nearly often enough. Like his younger siblings, he was an old soul with a generous spirit whose humility might've been mistaken for bashfulness. And, like the rest of his kin, he was magnetic, but in a soft, warm, gentle sort of way. I've adored the moments spent with him and his family. Unlike so many others, they're memorable because the family is so welcoming, loving and real. Regrettably, I didn't—often couldn't because of Calvin—carve out enough time to be in his presence. And, just at the age when the larger world begins opening itself to young adventurers, nature's wildness took him. He was about to turn twenty-three.

On our car ride yesterday along the same backroads, Calvin spent most of it going berserk. As usual, I couldn't know the source of his misery. Regrettably, sleep deprivation had drained my patience for his mania, and I barked and cussed through his shrieking and flailing. As we drove past the farm where a few close friends were gathering around a bonfire to grieve the loss of our friend's son, Calvin continued to melt down. Just then, I glanced at the sky above the field. It was magnificent—moody in places, placid in others with large swathes of leaden darkness amid frothy patches of lavender-gray and blinding whiteness. It's a river sky, I thought, which made me focus on Finn and forget about Calvin's grousing. In that moment, rather than being self-absorbed and wretched, I was moved to be grateful—for my son and husband, my friendships new and old, for Finnegan and his family and their many friends, for those beautiful, rambling back roads and the big sky which, whether cloud-strewn and stormy, starlit or clear and blue, is forever breathtakingly beautiful.

a better place

this page had been half-filled. one quote jotted down. a few thoughts tacked on. an anecdote. one metaphor. a rare triumph. a common grumbling. a millionth banal account of traipsing around the house with calvin—my agitated, nonverbal, legally-blind, seizure-racked boy, so limited and afflicted. so often unreachable. in short, nothing i had written really mattered.

hours later—our son tucked into bed and mostly calm, though ramping up—we got some tragic news. the kind no parent wants to get about beloved parents and their precious kids. practically—perhaps wholly—unfathomable. the questions whirl. what? how? why? where? when? i ask myself, why not my child? his present is so limiting. his future so bleak and uncertain. but there are no answers. all we know is bad things happen to everyone. no reprisals. no need for extra angels. no divine neglect or intervention. no mysterious plan to someday be revealed. only this: mother nature rules. unlike other people's gods, she doesn't discriminate, judge or choose. she evolves. but in harrowing times, despite her glorious days of sunshine and mist, autumn colors, raindrops, clouds, stars and sparkling waters, it's hard to say she's beautiful.

the next day, i came across and read aloud some words written by a friend i've known and loved since my early years of swimming. as usual, lidia's kindred musings resonate to the bone. i see and feel our connection:

meditating on tributaries, streams, rivers as a way of being connected to larger waters. my imagination one tiny thread leading to others, making a braid.

i delete my half-filled page of stuff that doesn't matter. instead, i think about braids and connections. about what makes this earth a better place: friends who gift their neighbors homemade food; those who show up bearing flowers; folks who donate clothes and meals and time and cash when they have little; strangers who stop to greet a disabled kid and his weary mother; friends who mix cocktails and build picnics for each other; teachers who give students extra of themselves; friends who call to catch up despite months of silence; folks who give generous embraces whether or not they've been invited; friends who note the tender bones of other's struggles and the beauty and strength borne from the burden; peculiar and pure kids like calvin, their hugs and unconditional love; certain mothers, fathers, sisters, brothers; humble, loving, gifted boys who kayak, sew, strum and fiddle.

glorious morning

it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.

this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.

after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.

i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.

again again

i wish it would rain again. patter on the roof. soothe my sorrows. quench and cleanse. inside, the light is warm and dim. my sister sent me a photo of an old flame. i can't quite place his face. don't know it's him. but then. but then. i note a smile that's only his. like so many, it's unfading. some things hardly change from their beginnings.

outside, winds arise and finger through the trees. pine needles shed like rain. the ground below turns solid copper. clouds begin to break as soon as they close in. again. again. leaves turn gold and crimson from one day to the next. autumn's alchemy. someday soon, a withering frost will hit. the moon is full again.

i crawl into bed with my son for the umpteenth time. he has just had a little fit ... again. his face is pale. i syringe a bit of cannabis between his lips. change his millionth diaper. in his short life, i've given him unknown numbers of pills and milliliters of medicine. still he seizes. again. again. in so many ways, he's still like an infant—drawing his knees up to his chest. wrapping his little arms around my neck. i think back to the week he was born. hooked up to leads and tubes inside a plexiglass box in the hospital. michael got no respite from work. instead, he was asked to do extra. thankfully, he declined the request. for seven weeks, calvin never left the hospital. my days and nights were spent there in the room with him. before and after work, michael provided us sustenance. so did some of our friends. it was all so uncertain and exhausting. and then. and then. seventeen years later, we're still dealing with calvin's diapers. still spoon-feeding him. still dreading the next seizure. each day the same. few changes. again. again.

the clock is off. it chimes four times at half past ten. it doesn't matter. its gong is comforting. smooth and round and soft like the box of wood that houses it. i think of the timepiece's beginning. a seed. a sprout. a sapling. a tree. a trunk. a log. a plank. a clock. i recognized my face in it when i entered the antique shop. i barely had a dime in my pocket. still, i knew i had to bring it home. it reminds me of getting through hardships. tick tock. tick tock.

as calvin rests, i see pictures of other people's kids standing straight and strong. they smile and wave and clown for the lens. i see photos of them running. playing sports with other children. watching movies with their kin. i'm fascinated. feel at once happiness and envy. i've learned to hold both emotions. it's necessary for understanding and survival. forgiveness. if only things had been different from the beginning. but then. but then.

the cast iron stove creaks with heat from a fire lit with paper and kindling. below the flames, a pile of embers glows and crumbles into chunks still reminiscent of their beginning. i hear my son up in his bed. he's rustling around in the covers. each time he moves his bed clicks. it triggers me. when i reach him, he's in the middle of another fit. those roving eyes and dusky lips. and i remember again when it all began. and how the fear and hurt and angst and stress keep happening. just like in the beginning. reliable, like the full moon and the rain and sun and wind. each week and month and year are the same. again. again.

dreamscapes and seizures

deep into another autumn. again we're trapped at home. after a string of seizures, calvin isn't feeling well. i'm attempting to be grateful. trying to stay whole. feeling a mix of sorrow, anguish and resentment, frustration and impatience. reminding myself i'm only human. striving to grasp onto grace and hope.

last night, calvin had two more grand mals. how can he go nineteen days without one, then have four over three days in a row? that hasn't happened before. at least we're not in the hospital. in-between the ones last night, he was agitated and clammy. awake and restless for hours. patting the bed. banging the wall. extra cannabis didn't help. perhaps the new strain is the culprit. it's near impossible to know.

i barely slept a wink. when i did, my dreams were mixed and vivid. a long and winding one featured me and my boy. as usual, a lot went wrong. details of the dream are soon forgotten. what's left are impressions, like footprints on a sand bar. suffice to say, it wasn't pretty. those ones never are. in the second dream, someone i wanted was falling for me hard. the feelings were so real. i have frequent dreams of being in love with people who love me. in these, and dreams of flying over land or breathing underwater, i simply will things into being. just rise up on toes or dive below. float in and out of clouds and kelp and making love. i think these dreams are healthy. inevitably, calvin tears me from them. sometimes when he's seizing, or in moments just before.

that is how these recent days have dawned. from deep in dream to cold, hard consciousness, however groggy. ripped from splendid dreamscapes into reality's harshness. hard to start a day like that two mornings in a row. today makes three. it appears we may be headed toward a fourth.

wide awake, i cruise through recent photos. of trees and clouds, shrubs and seas. rocky shores. the landscapes, seascapes, skyscapes are magnificent. their beauty, raw. their awesome presence humbles my significance. autumn canopies wild with color as if combusting. sable waters laced with whitecaps, wild and churning. mackerel skies stretching like an ocean to forever. i trust infinity and nature. must let them lead me to surrender. like certain dreams, they set me free. make me whole. melt my sorrowful embers.

calvin just had another seizure, this a focal one. his dusky lips stitched up as if he'd eaten something rotten. i gave him a different strain of cannabis oil. one with more thc. we'll wait to see what happens. see if we can sleep tonight ... and dream.

in the withering

the lilies are withering, their supple edges starting to darken and curl. their delicate petals drop like tears. stamens cling doggedly to the center of each blossom's throat. like tulips, their demise is gorgeous, something so worth witnessing rather than dumping them into the compost upon first fade or wrinkle.

in the garden, the black-eyed susans are beginning to shrivel. the phlox are going to seed. the peony leaves are turning yellow, red and purple. inside, because of my unintentional neglect, the fire in the stove is having a hard time getting started. as on most days, my son is a constant and annoying distraction. it's hard to get anything done when he's home. no reading, no writing, few chores. he tromps around the house and yard in purposeless circles, like some crazed, caged animal; sometimes i wonder. i spent over an hour trying to get him to do his business on the toilet—sit. suppository. wait. get up. walk. repeat. i have to stand in the bathroom to avoid disaster from happening. i won't go into the shitty details. suffice to say it's better than years ago.

as i while away the hours beside my aimless child, everything piles up—the tending of the garden, the dishes, the vacuuming, the dirty laundry, the mounds of clean clothes. it's not that stuff doesn't get done. it's just slow. thankfully, my husband helps, plus does all the cooking.

yesterday, i was up at 3:30 a.m. caring for a shivering boy who has been on the verge of a seizure for days. his teeth were chattering madly from an alarmingly subnormal temperature, probably brought on by a haywire brain. i'm spent. and when he's like this, i wonder and dread if he's withering too.

when i'm inside this house alone with my son, which is often, i feel so disconnected. his presence is not always comforting. we don't converse (he's nonverbal.) he's often unreachable, seemingly looking right through me. he is mostly non-responsive to instructions. and yet, he expresses some of his needs. he searches me out, sits in my lap for five or ten seconds before getting up and motoring on. moments later, he does it all again. that's no exaggeration. it's disturbing. at times, he's so unsettled. tense. troubled. his behavior is often intolerable. i can't say how he feels. but this empty feeling he has carved out in me never fully fills or heals. i don't always hold it together. but i must forgive myself the unravelling. it's all a part of the process. survival and regrowth.

yesterday, i saw a young father at the grocery store. he was dipping his head into his tiny baby's carry-cradle. a stranger commented on the infant's cute face. i watched the baby gaze at his father and the stranger the way calvin never looked—or looks—at me. almost no one told me our boy was beautiful. at least that's my memory. maybe they would have if i had seemed more open and approachable. instead, i was beset by loss and grief because of his deficits. had become a shell of myself while feeling the weight of an alien world. that was a long time ago. back when i first began my withering. and yet, maybe the process of opening, coming apart, and emerging into something altogether different, if looked at in the right light, can be beautiful. like a fragile flower dropping its petals in a show of naked surrender.

one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

alone on the roads

Since Calvin returned to school early this month, I haven't been taking him on our daily, damn-pandemic drives on nearby back roads. I seriously mourn their absence; they were a great escape from these four walls, a kind of unwinding, and a chance to see the familiar smiling faces of a few strangers who have, in various ways, become friends. But a recent spate of spectacular weather inspired me to take a couple of rides by myself, one on my bike and another in the car.

I visited my usual haunts—Simpson's Point, Rossmore Road, Bunganuc, Wolfe's Neck Farm. The scenery didn't disappoint. It never does. And there were hardly any cars to distract me from my surroundings. I was quickly overcome by how liberating it felt to be alone on the roads and to be free of my seizurey, sometimes manic kid. I didn't have to glance at him every so often in the rearview mirror. I didn't have to hand him grapes, blueberries, cubes of cheese, roast beef and chicken sausage, some of them dropping to the floor and bouncing beneath the passenger seat, only to remain largely undetected and festering. I didn't have to reach back to grab the sippy cup from my berserk child whose juicy water streams down his chin soaking his shirt to the skin. I didn't have to suddenly pull to the curb during one of his seizures. I didn't have to lurch back and grab his glasses from his fist before he gnashed them between his teeth. I didn't have to jam a towel in the door to stop him from staring at the sun. I didn't have to hear him moan and shriek and watch him flail. Instead, I just traveled along at a leisurely speed, taking in the ever-changing landscape, which is breathtakingly beautiful in any season and in all types of weather.

In slow motion, I watched hawks and jays dip and soar. I gazed across splendid glens and meadows thick with goldenrod, wild aster, cat tails, Queen Anne's lace, meadow-rue and yarrow. I saw runners and bikers and skate-skiers mounting and descending hills. I saw folks mowing lawns and tending to their gardens. I saw fishermen and clam diggers working the shore. I saw bathers wading in both calm and choppy waters. And the skies. Oh, the glorious, cloud-strewn skies.

If Calvin can keep up his longish stint of attending school (he hasn't yet missed a day), I'll definitely be going back on the roads—very happily alone.

click on any image to enarge

treasures (i wish my son could know)

dragonflies. wildflowers. butterflies. bees. a bunch of neighbors from whom we can borrow an egg or two or three. cote de rhone and gigondas. blazing sunsets overlooking snaking rivers and salt marshes. homemade mini pizzas hot from a wood fired oven. friendships young and old, near and far, dear and informal. seeing a new friend smile when i call his name as he pedals down the road. clouds lit up and laced with silver and gold. starlit skies provoking awe and wonder. dipping toes and fingers into shallow waters. nostalgia. jumping off of bridges into brackish inlets. dancing with reckless abandon. dancing at all. david byrne. steely dan. kate bush. blonde readhead. the low spark of high heeled boys. cocktail hour. bicycle rides. the thumping sound and feeling of running on a wooded trail. visiting our friends' vacation rental. teenagers. floating docks. water dogs. loons parting a rippled pond. wind mixing up leaves and limbs. tiny pine cones clinging to waterlogged boughs. watching our pooch, smellie, swim. michael's fluffy homemade pasta noodles. getting a tiny little buzz. beauty. stories. hopes. memories of yesterday. dreams of tomorrow. possibility.

From our friend's deck in Georgetown, Maine.

red wine and adrenaline

her hair fell in wet, ropy waves over her shoulders. having just emerged from the water, she looked like a mermaid in the filtered gleam of a waxing moon. earlier, before sunset, a great blue heron had flown over. she said it was a good omen. so too, i thought, was the double rainbow which had arched in the northeastern sky from amid a bank of pines. 

we picnicked atop a slope overlooking an inlet. the smell of cut grass and cows drifted across our table. we splayed out a feast between us—baguette, homemade pesto, purple heirloom tomatoes, triple cream and goat cheeses, green olives, dry salami, salt. we drank red wine from clear plastic cups. exploring the nuance of everything, we talked about the pandemic, the variants and vaccines. we spoke of our children and about the saintliness of them. we laughed and chatted for hours, catching up on eighteen months of each other's news.

as the sun began to sink into a cloudy horizon, it glinted gold and silver. well sated, we left our provisions behind and, drinks in hand, began strolling around the nearby campground. we passed a man propped against his trailer singing and strumming his guitar. kids were riding bikes, playing tag and squealing. though dusk began to fall just as our path veered into the trees, we decided to keep going. as she stepped into the shady wood, the orange sun set her aflame. she was glowing.

the path led us down to a tiny lagoon where the pink clouds reflected in its pool. we continued on, passing more tents, trailers, cottages, and one yurt skirting the inlet. by the time we hit the dirt road near the farm, the sky had darkened and the rising moon shown through the clouds. we had walked nearly two miles. back at the picnic table, we gathered our things then tiptoed down the dewy hillside to put them in the car. our last stop was the wooden bridge spanning a narrow tidal inlet. she told me of her plan to jump from the little platform built on the back of the guard rail. she'd done it countless times before. years ago, i'd seen teens launch themselves from it on hot summer days. it looked to be about ten feet above the tide. in the ensuing darkness, the sun's warmth still radiating from the wooden planks and railings, she began undressing until she was just in her skivvies. in a blink, she leapt and disappeared into a froth.

upon surfacing, she exclaimed how magnificent the water felt, adding that it was not too cold at all. i trusted her. she wanted me to jump. only problem was that i was going cowboy (aka, commando, for you east-coast types) and two folks were approaching. but it was sufficiently dark, and she offered to shield me with her towel. i climbed over the railing, peeled off my shoes and socks, t-shirt and jeans until all i had on was my chambray bra, then i stepped to the edge. she assured me the water was deep enough to leap. i had every reason in the world to believe her, and i had leapt off of cliffs and bridges and diving platforms as high as thirty feet before.

flying through the air, crashing into the water, having it envelop me like a liquid glove, felt exhilarating. it had been years since i'd been in it. salt filled my mouth and stung my eyes, reminding me of summer vacations to pacific northwest beaches as a kid, and of body surfing at beaches in san francisco, hawaii, kenya, tanzania, and swimming in the waters off of turkey and brazil. the tide was strong, but not as strong as i, so it was easy making leeway to the rocky bank, which i then scrambled up, dripping with sea water.

back on the bridge, i toweled off as both of us smiled and giggled about our adventure. we walked barefoot to the car laughing so hard we could have wet our pants—that is, if we had any on!

on the drive home, windows open to the sultry air, we splashed through puddles from an earlier rainstorm which had completely missed us. the white eyes of a baby raccoon peered into our headlights from the shoulder, and a tiny frog leaped across the road. i was smiling inside and out. it had been one of the nicest evenings in recent memory, if not my entire life—a magical one, really. for the most part, i'd forgotten about calvin and his (our) miseries. forgotten about imposed limitations. forgotten about stresses and pandemics. and as we hugged goodbye, the afterglow of red wine and adrenaline still pulsing in our veins, we promised to do it again.