gratitude and happiness

Snow turns to rain turns to slush turns to ice. Walks at the college fields can be treacherous in February. Even the sidewalks that get me there can be risky. More than once I've fallen, though not since I got cleats for my boots. Glacial terrain is often rough and sometimes insurmountable. Again, I think of Mars. But the skies that draw me to the fields, with their breadth and magnificence, never disappoint. Gazing at them makes me feel so present, insignificant and humbled—just the way I feel I should. For Calvin, there's nowhere safe to trod outside until things melt. I wager we'll get outside together soon enough.

So many things save me from drowning in this molasses pandemic: writing and reading; listening to music; eating my husband's delicious meals by firelight and candle; watching good movies; receiving Calvin's frequent hugs; friends stopping by with champagne and flowers and homemade food; folks who check in from nearby and far; kind comments about my blog; daily car rides taking in spectacular and familiar vistas; the smiles, waves and nods from strangers who are out and about doing the things I'd like to do right now but can't.

As the sun shines through the upstairs window while Calvin takes a bath, I perch on the toilet seat in the warmth to write this blog. My son splashes and coos and sometimes goes nuts. He sounds like a monster, monkey or goat. Sometimes he's cute; at others, not so much. Sometimes he reminds me of a little Frahnkenshteen, teetering side to side with arms outstretched trying his best to capture his maker. Like Mary Shelley's prose, at times I feel we're both so misunderstood. As I type, I regard the the backs of my hands, the blue-green veins branching under the crinkly skin of age or dry winter, the simple platinum bands wearing ruts into two long, slender fingers. With time, these hands become less and more familiar. Still, they get done the work I need them to do, and for that I am most grateful.

Yes, it's all about gratitude—for the simple things, for each fleeting moment, for that which comes to us by sheer luck and not because we deserve it, for finding purpose in life's twists and turns and hardships. I heard gratitude breeds happiness, can make surmountable an impossible glacier, a darling out of a monster, riches out of misery. I've no doubt that's the honest truth.

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

cautiously optimistic

Lately I am feeling cautiously optimistic about the promise of Palmetto Harmony, the new CBD cannabis oil we started giving to Calvin a few weeks ago. We had discontinued a different CBD oil several months ago thinking it might have been exacerbating Calvin's complex partial seizures. But in a slight a panic over more frequent grand mals of late, I remembered hearing years ago that finding the right strain of cannabis can sometimes take a bit of trial and error.

Since Calvin's first dose of Palmetto Harmony, Calvin has consistently slept more soundly and had an easier time of falling asleep. He has also been calmer and is smiling more. The most profound effect I've witnessed was a couple of days ago when he exhibited almost every one of his seizure harbingers—eye poking, extreme agitation, mania, restlessness, dreadful butt rash, completely amped up behavior, repetitive humming, pacing, mad finger-stimming, dropping down, shrieking, warm skin. Suspecting an impeding seizure, I increased his CBD oil, which we give him only at bedtime. Calvin was asleep within half an hour; the seizure never transpired. The next day Calvin was back to baseline and has been a pleasure to be with since.

So, though it is still too soon to tell, I am cautiously optimistic that this new CBD oil is working to calm Calvin's brain and body. Hopefully it will help to reduce his seizures, but if nothing else, at least I can delight in a few days of a compliant, fairly calm, happy child.

With his Gpa last year ... Calvin's looking more like this of late.

tricks and treats

Last Sunday's storm put so many of us out of power that town's Halloween celebrations were postponed until last night. So when five o'clock rolled around, I dressed Calvin in his best camouflage and walked him down to Woody's with his buddy Mary holding his other hand. We visited three other neighbors where Calvin managed to grab pieces of candy from each bowl, then attempted to put them into his mouth, wrapper and all. Though we hit half as many houses as we did last year, it was his best evening of trick-or-treating in his three-year history of going door to door, even with a boot splint on his left foot protecting a recent injury.

When Calvin was done, Michael and I snuck out for a date. As dusk fell we made the ten-minute drive to our friends' young restaurant, Salt Pine Social. There, we sat at the bar imbibing under ornamental lights that reminded me of wrapped candies. I marveled at the gigantic ice cube in Michael's glass of bourbon, one of several dozen that the bartender had painstakingly carved from an entire block of ice. One by one, tasty plates emerged from the kitchen. First, we enjoyed a pâté of bacalhau—the Portuguese word for cod—resting in a spicy tomato sauce with crispy fried mini polenta cakes. Next to arrive was a platter of local oysters on the half shell accompanied by an exquisite glass of madeira, all compliments of the chef. In between dishes our hosts stopped over to visit and to bestow us with hugs and kisses. After we had gobbled down the mollusks, we supped on plump grilled octopus, poached turnip and shaved radish disks steeped in ovgolemono broth. As we were finishing that dish along came another comp from the chef: a parchment-lined basket of tempura-fried avocado wedges with lime and chipotle remoulade (my mouth is watering just writing this). We finished with a medallion of monkfish liver the color of yams or dark pumpkin, served with dainty pickled blackberries, fried rice crisps, pear nuggets, jalapeño, charred cucumber and a drizzling of tangy ponzu sauce.

As we dined, I expressed my gratitude both silently and out loud for our many fortunes in this life—for having gotten our heat back within two days of the storm, for the huge tree having missed our house, for having the luxury of drinking at a bar and eating scrumptious food in a handsome establishment, for lovely friends and generous hosts, for colorful light fixtures that look like candies or planets and stars, for Calvin's friend and caretaker Mary, for gauzy scarves from Paris and sexy shirts from Salvation Army, for reliable, comfortable cars, for beautiful gardens, for Calvin slowly coming off of benzodiazepine, for cannabis as his medicine, for a boy who is making strides and seems to be getting incrementally better by the day, for kind and loving neighbors, for a Halloween free from seizures or hospitals or accidents or surgeries.

Back at home, the large bowl of candy we had left out with a note asking children to "please take just one or two" was empty. Knowing full-well seventy children had not come by, no doubt someone had absconded with the sweets. Woody told me later that he'd seen a group of teenage boys lurking around the porches of those of us who had left candy in our absence. We had been tricked, even though we had offered them treats in return for mercy. In the scheme of things, though, and in recounting so many fortunes, I thought to myself, it's a first-world problem.

Photo by Mary Booth Scarpone

love and gratitude

Every once in a while life gives me a little bit of sugar.

After a trying Saturday during which Calvin was as stubborn as ever making it nearly impossible to grocery shop or do much of anything, the woman in line behind me at the grocer offered to fetch two limes I'd forgotten to get, and the main reason I'd gone shopping in the first place. Calvin had been so difficult—attempting to drop to the floor, turning on a dime nearly taking me down, planting his feet refusing to make any forward progress—that by the time she returned with the limes I was weeping from a mix of self-pity and gratitude. I thanked her and she smiled sweetly, seemingly pretending not to notice, perhaps to avoid making my despair any worse.

Later that afternoon, Michael and I dealt with what we thought might be a sick boy headed for a major seizure; the kid exhibited nearly every harbinger in the book: rashy butt, seizure breath, bouts of shrieking, dropping down, spells of spaciness and pale lips. An hour before his bedtime he lead us upstairs and patted on his bed, so we tucked him in early. Just then, Nellie began barking wildly at someone on the deck.

We were the target of a home invasion, and not the first of its kind by these particular culprits. Some dear friends, when they learned we could not join them for dinner, brought the entire meal to us. With Calvin seemingly asleep, we quickly retired to the screen porch where we sipped drinks, ate aged cheddar, and dipped blue corn and pita chips into a smooth red pepper coulis. It had been months since the six of us had gathered around a table together, and so we toasted to our friends' presence, thanked them for their generosity, then raised our glasses in honor of a couple of dear friends who, regrettably, had moved out of town the week before.

Living at the eastern edge of the time zone, we were bathed in twilight for quite a while. We sat surrounded by thirsty rhododendrons and azaleas, and day lilies flashing scarlet and yellow petals. One guest noticed that the string of hot weather and the long spate without rain had crisped most of the lawn into straw. We all hoped the heavy sky rolling in meant rain. And what with all the news about wars and despots and oligarchs and liars, it seemed the world needed a good cleansing, but the rain never came.

Michael helped our dinner hosts bring out a platter of pork tenderloin medallions with jars of chutney, plus bowls of herbed rice salad, rustic tomato salsa and a salad with apple and homemade candied pecans. The evening began with a personal anecdote about a fart (not mine), that inspired two amusing stories about dog shit, which then led to more lewd comments and hilarity. Several weeks, if not months, had passed since I last laughed until I cried, so it felt satisfying to wipe wet lashes wearing a smile. We went on to discuss books and politics and films and the wedgies Wonder Woman sports (on her feet) in the latest movie. We mused on San Francisco and the Bay Area since all six of us lived there in our former lives. And we asked after each other's boys realizing, as if for the first time, that we are all parents of only-child sons.

As dusk turned to night, Michael lit candles and oil lanterns, and not long after came our dinner host's to-die-for lemon curd cheesecake, which was served on special plates, each painted with a different bird, that she had brought for the occasion. Relaxing there surrounded by my furiously funny friends and my beloved husband, I realized there is nothing that quite compares to communing over shared food and drink with wicked smart, zany, open, thoughtful, irreverent friends amid candle glow on a warm summer evening.

When I finally crawled into bed, my mind was buzzing with thoughts of the laughter and happiness that had dissolved the bitter difficulties of my day. But it didn't take long for the angst over my sleeping, epileptic child to creep back in. So, I helped myself to sleep by repeating, in my mind, the words love and gratitude to the tempo of my resting breath.

And Calvin made it through the night.

in good hands

Despite my penchant for kvetching, I want you to know that I do get out to celebrate with friends more than just once in a while. Here I am a last month with my homies Luke and Sarah, belly up to the bar, drinking a fabulous margarita at our local cantina while my husband was in Europe for three weeks taking photos, giving talks and putting up a solo show. During Michael's stint away, my buddies kept me (relatively) sane, entertained, and well stocked with flowers, firewater and food galore.

No matter how you slice it, I always seem to land in the good hands of neighbors and friends.

at the bar with lamar

We saddled up to the bar, my girlfriend Lucretia and I, and talked about Hillary and Bernie and their possible running mates and about how we wish we had a crystal ball. I touched her wavy hair, noticing how silvery it had become since I’d last seen her, and told her how beautiful it looked. Her eyes were bright and smiling and I draped my arm around her for a spell, happy to be out with my dear friend again.

We dined on Asian slaw with peanuts and hot Kung Pao chicken dumplings. Lucretia sipped on a Manhattan, a house-cured maraschino cherry nestled in the bottom of the glass, and I on a Pinot Noir. I’d gotten a jump start on her, having had two fingers of bourbon at Woody’s house before she arrived to pick me up, so I was giddy and happy to be out on the town.

Partway through our meal I leaned over and nosily asked the man in the seat to my left what he had just been served. He said the dish was scallops and potatoes. The three of us got to talking, first about the food—was it scalloped potatoes or scallops and potatoes? We told stories of where we all grew up, and I remarked on his sharp plaid button-down shirt and smart jeans, which got me to talking about my time at Levi’s, which segued into discussing his new job in human resources. We wondered where he’d traveled from, and if he was going to live nearby. I asked him his name and as he put out a strong hand to shake ours he told us, “Lamar.”

It was Lamar’s first night in town, having traveled from Detroit to work a week out of every month at a plant just up the road. He asked Lucretia and I how we spend our days, so Lucretia described the time on her farm and I shared about my writing and my boy. When I mentioned Calvin’s epilepsy, Lamar told us his thirty-year-old brother has epilepsy, and he asked how long Calvin has been having seizures. I said, “Since he was two.” I openly lamented knowing that Lamar had probably grown up taking care of his little brother. He nodded his head and bowed so I touched his leg lightly in accord.

For well over an hour Lucretia and I visited with Lamar, who is handsome and young, tall and lean, with a closely shaved head and nice brown skin. He told us of a recent break up and, in solidarity with our new friend, we agreed it was probably the right thing. We laughed and joked about this and that and vowed to gather again the next time he’s in town. As we parted we all gave each other hugs as if we'd been old friends, then Lamar said joyfully of our meeting, “This happened for a reason!” I replied that I didn’t believe in that notion and said I’d explain sometime.

When Lucretia dropped me off we embraced. Inside, Michael and his friend Matt were sitting in front of a rolling fire, Nellie at their side. We chatted for a bit before I kissed Michael, hugged Matt and said goodnight.

Sleep was sound until four o'clock when Calvin started into a grand mal, just five days since the last. In the seizure's wake I syringed in his benzodiazepine, hoping to thwart any more.

Lying there next to my boy while he shivered and shook, I felt a little headache coming on and then remembered why. But, knowing that earlier I'd met a new friend named Lamar, made me feel a little better somehow.

Photo http://poco-cocoa.com

margaritaville

Yes, Michael and I do get out with friends once in a while, this time for some margaritas that were so frigging good, made by our host friend, Tim, that they've ruined me for liking any other margarita. The salted glass that held mine was so big that my head feels a bit ruined today, too, though—luckily—I only drank one of those bad boys, covering my glass every time Tim came around pouring his guests more, which was often.

That's me on the left kissing another Tim who just minutes before had said in jest, "You're dead to me," since we hadn't seen each other in so long. I told him I'd never let him live that one down. But forgiveness comes quickly when the offender is clad in skinny purple slacks, a viscose herringbone tweed bowler with a sharp plaid vest and a two-toned pair of nubuck oxfords. Yowza.

I'm thanking my stars for the bowl of homemade guacamole our other host, Stephanie, made, which was as good as any I've ever had before in my life, and for the big wedge of Humboldt Fog nestled next to a pile of seedy crackers and, too, for the handlebar mustache I kissed on the face of my buddy, John, and for the laughs with a multitude of other superb guests at both parties we attended and for the vanilla cake topper a couple of hours later, and for the aspirin right before bed and again upon waking this morning and for my cute husband and for a reasonably calm child on this very weary day in the wake of margaritaville.

Photo by Aaron Kitch

blue ribbon boy

My core competitive nature makes me very proud of Calvin for winning a first place ribbon (for the second year in a row, mind you) in the assisted-walk event at our regional Special Olympics. By the looks on their faces—watch lane 5—I think he and Mary had fun.

tone of voice

Much of the friction of life is caused by the tone of voice.

The sarcastic, cutting, resentful, discordant tone of voice is responsible for a large part of the unhappiness, not only in the home, but also in business and in society.

- Mother -

An entry from my Grandmother's personal Album of quotes.

back in time

Every weekday morning, after I put Calvin on the bus and slug down my cold coffee, I take our dog Rudy for a walk. Often, we head into the stand of trees that borders the vast athletic fields near our home. We amble along a wide path now muddy and strewn with autumn leaves, listening to the din of a lone woodpecker high in a long-dead tree. A loose chain of houses lines the path, their back yards spilling into the clearing, some fenced, others not. As we approach, one house in particular begs me to pause. The structure, a brick ranch style home with a dark shingle roof, reminds me of the house I grew up in, lived in from the age of two until I turned twenty. As I gaze at the house my emotions become visceral, as if I might witness my father walking right out the sliding glass doors onto the sloping lawn, or perhaps my mother, wearing her patchwork apron, ringing the patio dinner bell. I see this house and I become a kid again, a tomboy clad in dirty hand-me-down Levi’s, rubber-toed sneakers, a t-shirt and a worn out hoodie.

Living on a secluded lot with few neighbors, I considered my house and the rocks and trees surrounding it as my friends. I had named the twin fir trees flanking our gravel drive Huey and Louie. A born tree climber, I’d squirrel my way up through the spokes of their sappy branches and straddle myself far above the roof gazing at the Seattle skyline and, on clear days, the Olympic range beyond. On summer days I’d mow the lawn and feed handfuls of clippings and wormy apples to the neighbors' horses. I’d lay for hours on a threadbare towel worshiping the sun and surveying images in the clouds that passed overhead. I’d nap in the supple shade of a plum-colored Japanese maple as cherry blossoms floated  across my face. In the remnants of a rotted-out old cabin in the adjacent wooded lot I’d dig for old bottles and other treasures. What really captivated my attention was studying ladybugs, dragonflies, slugs and bumblebees. I’d fashion daisy chains with dandelions and buttercups or make a blade of grass sing between my thumbs. In the still of afternoon I’d braid my hair in pigtails, weave colored plastic strips into a square-ish lanyard, plait a bracelet of white string like I learned at camp, one I’d wear on my brown wrist for the entire summer and well into the school year until I had to cut it off it got so dirty. When it rained I made mud pies, stomped in puddles, hid in the hollow arch of trees, watched earthworms emerge from the grass only to be gobbled up by quick, red-breasted robins.

Somehow, standing there on the wooded path facing some stranger’s brick ranch, I yearn to step foot into the yard and go back in time, to a time when I hadn’t a care in the world save the burden of simple chores, back to a time when I didn’t fret constantly over a wordless, disabled child with a rampant seizure disorder. I want to bring Calvin back with me and introduce him to my father, my mother. With net in hand, I want him to chase butterflies with me—catch and release—and frogs just the same. I want to lay with Calvin on a ratty towel sinking into the grass and just be—still—not chasing around a boy on the end of a harness who never stops moving, not long enough anyway to gaze at the sky, not long enough to regard a bird or smell a flower or pause simply to soak it all in, a boy who I’ll never be sure can use his imagination at all much less consider the rocks and trees or the faces sculpted in clouds.

From last December.

jet streams

I shade my eyes from the sun and squint into the sky where he is pointing. “What do you think that’s about?” he asks, then goes on to explain that the three jetliners heading south, white trails like chalk marks in their wakes, are not commercial airliners, but rather a conspiracy dumping chemicals in the air to kill off all of mankind.

“We’ll all be dead in fifty years,” he calls to me as I casually saunter off, Rudy at my heels.
“I’ll be gone before then,” I reply over my shoulder.
“But your children won’t, and their children won’t,” he says in a raised voice and then adds, “Don’t you care?”

The sun beats down pleasantly on the back of my head as thoughts reel inside it, the stranger and his dog receding behind me in the field:

calvin might not live that long either and i won’t have grandkids to worry about and what does this guy know about anything but i suppose he could be right and maybe it’d be a blessing though today is not the day to consider the end of things and bacteria’s gonna take over the world anyway long after we cease to exist because we might just obliterate each other—or neglect each other to death—if these crazy extremists can’t give up their lust for greed and power and besides the sun feels so good right now and the air so fresh and i couldn’t care less about that loopy guy and what makes him think i should just because he walks his dog past mine on a sunny day at ten in the morning thinking i’m fair game and perhaps i should have listened but what the hell for because he’s not sound and i should have a healthy skepticism about strangers approaching me and chastising me about not caring what they think, shouldn’t i?

And so I walk home at a snail’s pace, my gimpy dog limping along. We stop to say hello to Woody who throws Rudy a couple of treats. Once home, I sit myself down in a cedar chair in the backyard and call Mom. Though I don’t think she knows me anymore I can tell she recognizes my voice as someone she loves, as someone she desperately wants to see. “When’re you coming to visit me?” she asks for the umpteen-thousandth time. I say, "Soon," before asking her if she’s happy. “Youbetch!” she replies, then I ask her if she is ever sad and she tells me, “I don’t think so.” We talk some more about the birds, the chipmunks and the autumn leaves then we hang up the phone with our usual I love yous, the sun still beating down on my head. For a moment all is right in the world, even Mom, three-thousand miles away, happy for now despite her Alzheimer’s, and I look up into a cloudless sky painted with the white streaks of jetliners and I’m content with the thought that someone is very simply heading home.

photo by Michael Kolster

the beach

warm august wind,
skies crystal blue and clear,
endless.
crisp white chalk marks dissolving
behind glinting chrome wings.

sea spray dewing thin wisps of hair
at my forehead.
moist sand between our toes,
rolled up denim cuffs chafing salty calves,
leaning into the oncoming breeze.

burnt sienna kelp heads glistening,
granite sand and shell
encrusted tails,
ruffled, tangled and entwined,
sweeping and drifting in the surf.

tiny polished glass shards,
seafoam, emerald, umber and milky,
sapphire too,
gathered in your strong hands,
tumbling in our gauzy cotton pockets

smooth twisting gnarled branches,
ashen grey and blonde,
sensually arched
swollen saltwater planks,
massive fallen timbers stranded.

brilliant cresting waves,
radiant heat massaging our backs,
shadows cast seaward,
strolling in each others arms,
sandals dangling from our fingers.

photo by Michael Kolster

pH probe

The kid, in my estimation of late, has been pretty damn happy. We've gone down—then immediately back up—on one of his seizure meds in a fit of indecision. Last night we reduced a different one, the one that has never shown any obvious efficacy, so why keep him on it?

It feels good to wallow in Calvin's good mood and impish grin, in his giggles and hugs, in his relative seizure-free stint of twenty days. But tomorrow morning I dread. We must take him to the hospital in Portland, leaving the house before seven, arriving for an eight o'clock appointment to get a nasal-gastric tube thread through his nose and into his gut without anesthesia and on an empty stomach. He's getting a pH probe to see, once and for all, if he has been suffering reflux.

I remember when Calvin was only a few weeks old, having to witness a similar procedure every few days while in the hospital. He was being partly nourished with my pumped breast milk through a nasal-gastric tube, since his weak little suck couldn't get enough on its own. Kathy, a nurse with neonatal intensive care unit experience, performed the task as I watched intently to see how she measured and marked the tube for proper insertion. One day, Kathy wasn't at work and the g-tube needed changing. Another, less experienced nurse showed up to do the job. I helped her restrain Calvin, who was just shy of six pounds, while she measured and marked the tube. I'd seen that she'd done it differently than Kathy, and as she thread it through Calvin's tiny nostril he began to gag and scream and tremble. "You're putting it in too far!" I cried, strands of tears and snot streaming from my face onto Calvin. "You measured it wrong!" and the nurse removed the tube as Calvin sputtered, shrieked and turned bright red.

Later, Kathy came in on her day off to replace the tube correctly. She did so for the remainder of the time that we stayed in the hospital until we took Calvin home when he was seven weeks old and had finally mastered the art of nursing. We'll never forget Kathy for her kindness and compassion.

So, I dread tomorrow morning. But perhaps Calvin will pass with flying colors like he did during the anesthesia for his MRI, for his necessary circumcision at the age of two and for his eye surgery when he was five. Perhaps he will impress us with his resilience like he did for the countless, scary, unpleasant, protracted EEG lead applications and removals, his painful and frequent blood draws and IVs with their needles and splints and the restraint needed for all. Perhaps Calvin will quickly forget about the tube taped to his cheek that goes up his nose and down the back of his throat that he'll have to endure for 24 hours, and maybe he'll manage, like my kid sometimes does, to be a damn happy kid nevertheless.

Calvin with his nasal-gastric tube at 20 days old

sitting here watching

I'm sitting here watching my happy boy. He’s feeling better today. Sitting here watching him smile and squeal and bite his rubber giraffe and play with his toes. Sitting here watching him pirouette, Joni Mitchell filling the space with her cool sound putting us all in a trance. How does he do it with such grace and coordination?

He’s getting so big, looking so good, yet still so much like a baby. Spinning. Spinning in circles.

Sitting here watching my perfect boy, save the dark circles under his eyes, save the missing hank of white matter, save the seizures, save the drugs, save their side effects. He is sweetness embodied. He’s a pony boy, those long legs capped in white socks prancing in the jumper.

Sitting here watching and wishing for so much more. But I’ll take today, with its happy pony boy, this goofy, gangly, giggling boy, though still hoping for more tomorrow. Always hoping for more.

kolster united

Salty dogs under foot. Misty mornings. Cold drinks. I love yous. Riotous games. Growing teens. Sharp minds. Twilight boat rides. Scary movies and movies that make you laugh and cry. Live with Mike on WBOR. Family dinners. Bugles. Champagne, bourbon, beer and wine (not to worry.) Time together. Time alone. Hugs. Sharing Calvin. Frosty's donuts. Late night conversations. Sleeping in (for some.) Cheese. Humor. Most wonderful niece and nephews. Smart-ass brother-in-laws (who I adore.) Lovely (in every way) sister-in-laws. Gorgeous views no matter the weather. Hosts with the most: Jimmy and Poopsie. Triple lobster. Three more cherished days.

 

 

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

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

special olympics

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

photos by Ann Anderson