the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

truth be told

don''t diss me. don't dismiss me. don't chide me. don't deride me. don't lie to me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry—those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

food for the soul

a big bunch of thick-stemmed sunflowers standing in a tall jar of water, and a quart of hot-off-the-stove chunky lentil soup delivered in person, masked-up, delightfully unannounced, on the steps of our side deck.

a large zip-lock bag chock full of homemade chicken, pork and shrimp wontons, a smaller zip-lock stuffed with fresh spinach, and a quart of savory ginger and green onion broth for steeping; four large home-baked crinkled molasses and spice cookies on a square of parchment in a white bakery box with a clear-cellophane window; a baggie of handcrafted pork skin dog treats for smellie; homemade squash, nutmeg, percorino romano and parmesan cheese tortellini with a jar of tomato basil pasta sauce; a freshly-baked pull-apart loaf of newfoundland white bread—all these carefully nestled into a shallow cardboard box and unexpectedly hand delivered, masked up, at our mudroom door.

kitchen-crafted caramel sea salt, walnut and bittersweet chocolate tart in a foil-covered aluminum pan left on our side deck bench. most regrettably, a critter got to it before we did—dammit!

a carton of pastel teal and tan farm-fresh eggs hung lovingly on our doorknob in a beige plastic bag.

a big box stuffed with styrofoam peanuts cradling a small box of artisanal walla walla chocolates, a zip-lock laden with thick squares of homemade shortbread, and two bubble-wrapped bottles of regional red wine mailed to us from southeast washington state.

a massive wedge of white birthday cake iced with buttercream frosting and white chocolate shavings set on our side deck after dark in a clear plastic container with a happy red lid.

thank you maura, seth, ann and kevin, collin, stacy, and jens, barbara, nate and gabriel. you nourish our bodies and souls just when it seems we need it most.

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.

an open letter to governor janet mills re: covid vaccines

Dear Governor Mills,

I've heard it said that a society—government, nation—can be judged by how it treats its most vulnerable.

My seventeen-year-old son, Calvin, suffers from multiple physical and developmental disabilities including cerebral palsy and intractable epilepsy. He is nonverbal, legally blind, incontinent and can do little to nothing by himself. His chronic epilepsy means his risk of serious illness or death from Covid-19 is three times greater than the general population. Despite his limitations, his life is precious.

Currently, it is unclear if children like Calvin are eligible to receive a Covid-19 vaccination as part of Maine's 1b vaccination phase. Nowhere on Maine's vaccine rollout plan are children with high-risk medical conditions mentioned. Though Calvin is old enough to receive the Pfizer vaccine, only adults with high-risk conditions are listed in phase 1b. Children age 16 and up are listed as the last to receive the vaccine as part of phase 2, which isn't expected to begin until June. 

Calvin cannot grasp abstractions, does not understand the existence or dangers of a pandemic and will not keep a mask on his face. He constantly touches and mouths surfaces and puts his fingers in his mouth with frequency. For these reasons we have kept him home from school since last March. Due to his intellectual deficits and the side effects of epilepsy medication which cause him to be restless, he is not capable of attending to a screen and therefore is unable to participate in remote schooling. I have no doubt that there are likely scores of children in Maine who fit this profile. Fortunately, I am able to take care of our son all day every day while my husband is at work, though it has been physically and emotionally challenging. 

Considering the fact that vaccines are not 100% effective and experts have not determined if the virus can be shed by vaccinated people, it is critical that vulnerable kids like Calvin and their family members get vaccinated as soon as possible. Needless to say, if Calvin were to get sick it would be devastating for our family. Moreover, if my husband and/or I were to get seriously ill or die, it could prove catastrophic in terms of providing for Calvin's care since he requires twenty-four hours a day of hands-on supervision and assistance with all activities of daily living. In other words, caring for Calvin while maintaining a household requires both of us.

If Maine is to pass the moral test of caring for its most vulnerable, it is imperative that children age 16 and up with high-risk medical conditions be added to the phase 1b Covid-19 vaccine rollout without delay.

To learn more about Calvin, I invite you to read my blog, which Dora Anne Mills, Senator Angus King and State Senator Mattie Daughtry follow.

Thank you in advance for your consideration,

Christy Shake

An abridged version of this letter was sent directly to Governor Mills.

Calvin with one of his favorite toys.

riches out of misery

a reader asked me recently, how do you do it? how do i care for a significantly disabled child with all the burdens, including a chronic condition? in response, i cited the brutal years of extreme competitive swimming and how it steeled me. i cited my strict father's wicked work ethic which i inherited. i told her how much i adore my impossible son. i considered how much i love a challenge. i thought about my supportive spouse. then I reflected on mindfulness as both meditation and distraction. like focusing on the way this morning's layers of sleet felt as if i were trudging through coarse kosher salt or sand at the beach. how the sleet sounded and felt when it hit my jacket and cheeks. how the birds in the trees seem to be announcing spring. how being the only human in the trails and on the road can feel both liberating and lonesome. how the trees have a tinge of silver as ice clings to their limbs and needles. how their branches sag under the weight of it all as if in solidarity with me. how still pools of water reflect the surrounding world, sometimes with heightened clarity. how luxurious it feels to have my son linger in my lap peacefully, even though he's ailing. how all these seemingly insignificant things, plus gratitude—for family, friends, kindly strangers, good fortune as well as struggle, the ability to write for myself and for avid, compassionate readers—can make riches out of misery.

emotional landscape

There are days that are so dark that I wish my son would disappear into the ether, dissolve like a lozenge on my tongue, seep into the earth like so many drops of rain. And yet, I am without a doubt a better person having carried and cared for him all these years, and for that I owe him a debt of gratitude. But sometimes I wonder how long I can keep up with the intensity of care he requires, and I can't imagine others loving him, cuddling him, and responding to him—especially as he grows—in the way he needs to be happy, healthy and to thrive.

Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.

Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.

But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.

Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.

Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.

And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.

cries of anguish

If I told you that taking care of my disabled infant-toddler-teen sometimes feels impossible— emotionally, physically, psychologically—you'd probably take my word for it.

If I told you I know more about living with epilepsy than my son's neurologists—the drugs' heinous side effects, the manic ramp-ups to the seizures, the awful fits themselves, the fallout from them, the cumulative stress—you might concede.

If I told you there are moments when I want to punch a wall, nights when I scream my head off in sleep-deprived frustration, mornings when I want to run away from it all—the dirty diapers, the managing of medicines, my relative confinement, the traipsing around behind my wobbly son in mindless circles all day long, the blocking of his efforts to stare at the sun and smack me in the face and bite everything in sight and drool on every surface in the house—you wouldn't doubt me.

If I told you I have little to no time or space or freedom to do the things I want to do and that sometimes I resent my son, my husband, my life circumstance, you'd take me seriously.

If I told you that I live with the fear that my son will die in his sleep after an epileptic attack, you wouldn't deny me that anxiety.

If I told you that my son's future seems bleak, and that I worry if he outlives us that others might mistreat him and that no one else will love him when he's no longer cute and cuddly, you'd feel me.

If I told you we've been gawked at, scorned, cheated, avoided, ridiculed and neglected, though that might come as a surprise, you'd believe me.

If I told you all of these things on a regular basis and for years, even if I've never met you, I've no doubt you'd likely show me love and compassion and maybe even ask if there were something you could do to make things better.

And hopefully, few if any of you would respond to my cries of anguish by telling me I'm imagining things or blowing them out of proportion, that I'm too serious, too sensitive, playing the victim, that I need to get over it, or that our situation doesn't matter nor does it warrant telling.

With this in mind, it never ceases to amaze me that when African Americans decry racism, police brutality, oppression and injustice, there are still those who respond with deflection, distraction, condemnation, disparagement and denial. Even in the face of mounting cell phone videos showing innocent Black men, women and children getting harassed, brutalized and killed by White cops and civilians, there are those who will claim that the victims are playing the "race card," must somehow be deserving of their mistreatment or demise, or that the offenses are anomalies.

Despite frequent anguished pleas, those steeped in racial bias or animus—whether consciously or not—condemn the ways in which Black people peacefully protest their oppression and the violence waged against them whether it be by taking a knee, taking the stage, taking the mic or taking to the streets. Others cling to ignorant and dismissive platitudes like, "All lives matter," a tone-deaf and hurtful retort to the more urgent maxim, "Black lives matter," even going so far as to create, share and repeat tasteless memes while innocent Black men, women and children are murdered with appalling frequency.

Despite cries for equality and reams of evidence supporting its disparity, there are still those who perpetuate rugged-individualist and bootstrap theories. They doubt, deny and turn a blind eye to the grim and profound effects of systemic racism, discrimination, and the maligning and marginalization of Black people. As a result of such offenses, African Americans are at higher risk of living in substandard housing, in food deserts, in cities with underfunded and crumbling schools and drinking water tainted with lead. And due to the fact that institutional racism exists at every level of government policy—education, housing, lending, healthcare, employment, criminal justice—African Americans are at disproportionately higher risk than White people of suffering from coronavirus and other diseases, infant and maternal mortality, police violence, arrest and incarceration.

The hardships raising my severely disabled son have never been questioned, even though most who claim to understand them cannot truly empathize. But somehow, the decades- and centuries-long protests by African Americans against injustices, fear and risk of bodily harm have historically—at least until more recently—gone unheard. Too many people remain entrenched in their denial of benefits they enjoy because of having white skin—a reality that in no way whatsoever discounts hard work and ingenuity and is nothing to be ashamed of. Perhaps fear or pride gets in the way of conceding that success isn't ever achieved in a vacuum. Maybe, like me, whiteness might have helped you get that decent education, that interview, that job, that apartment, that loan, that benefit of the doubt, that second chance. Maybe, like me, whiteness helped you skirt defeat, suspicion, catastrophe. And maybe—probably—whiteness helped you avoid the risk of getting stopped, questioned, arrested, your neck crushed under some cop's knee.

Protesting the killing of George Floyd, outside Brooklyn’s Barclay Center. Photo, Yunghi Kim/Contact Press Images

struggles

The snow hadn't yet begun to fall when I heard my son cry out at nine last night. I only half expected the seizure's arrival, this one in the wake of the full moon and a decent eleven days since his last grand mal. As usual, I crawled in bed next to him to make sure he kept breathing—the twenty minutes or so after a grand mal being the most risky to succumb to SUDEP (Sudden Unexpected Death in Epilepsy.) Just as I was falling asleep, Calvin clocked me in the face with his fist while he was shifting. I decided it was a good time to go sleep in the bed with Michael. Sadly, the extra THCA oil I'd given Calvin after the first seizure did not thwart the arrival of a second grand mal at 4:45 a.m. Perhaps it would have worked if I'd waited until midnight to administer it, but I was so goddamn tired I just couldn't.

By six the snow was coming down in gnat-like flakes, some of them floating upwards and crosswise as they neared the window. Like most everything in these coronavirus days, snow in May, even in Maine, is strange. Watching it come down, head on my pillow, I imagined it as some magical dust, some cooling off of the white-hot suffering, despair, frustration and anger many people are feeling during these essential shutdowns.

Slowly, I rose to see the garden, worrying that the young peony shoots might have been burned by the night's frost. Since yesterday, many blossoms have opened on the pink and purple small-leafed rhododendrons, a white one having already beat them to it. The garden is gradually coming into it's glory, even as deciduous trees are still mostly naked, save some tiny leaf buds emerging.

As if winter, today has been spent indoors trying my best to help my suffering kid feel better. He's not back to baseline, is more restless than usual, has clammy hands, stinky breath, foamy drool and no appetite to speak of. I'm tired and achy, and the sore throat I developed the other day is only slightly better. Still, looking out over the garden, the snow having finally given up without sticking, I'm feeling grateful. I have a house chock-full of windows, a gorgeous garden to devour and in which to wander, a sweet and loving husband who does all of the cooking, friends who leave delicious care packages on our porch, good books and films to lose myself in, and the privilege of not being a frontline healthcare or other essential worker during this pandemic.

But despite all there is to be grateful for, I'm still nervous about what is going on in this country, and ashamed of some Americans' behavior. It vexes me to hear that grocery store employees are being harassed by customers who do not want to follow state guidelines for wearing masks in public. I'm incensed at the ongoing lies, backpedaling, blame-shifting, cronyism and hypocrisy coming from the White House. I'm sickened by the news of hate crimes—so many still going unpunished—of innocent Black and Brown people who, amid their ongoing oppression, are disproportionately affected by this pandemic.

Outside, it's still below forty, though with winds at eighteen miles per hour it feels like the Arctic. But I'm sitting here at my desk with a view of the garden. Michael is home taking care of Calvin, who is doing slightly better and will be heading upstairs to bed fairly soon. I've just lit a fire in the wood stove and poured Michael and I a couple of early cocktails. Later, we'll warm up some ridiculously delicious chicken enchiladas with spicy salsa verde, and discuss the messed-up state of the nation. Then, we'll muse on gratitude, and I'll go to bed early and tired, though hopefully not pitying the situation with our own messed-up kid, but rather sympathetic for those out there in the world who are truly struggling.

collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.

truth be told

don't diss me. don't dismiss me. don't chide me. don't deride me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry. those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

strange world

It's a strange world when ice rinks are made into ad hoc morgues, when conference centers become makeshift hospitals. Strange to see movies depicting throngs of bodies packed together. Already, that seems so ancient and alien. Strange to feel alone in a place where so many good friends live within minutes. Strange to lie in bed and wonder if the virus will spare my kid.

These past few days I wonder if Calvin may be feeling the strangeness, the heavy-chested, desperate anxiety of it all. He's not going to school. His nurses aren't coming to work. Life is off-kilter. Maybe his craziness is "just" that a seizure is coming. But Jeezus, he's been off his rocker the past few days. 

A friend from my years in San Francisco wrote to me:

I just wanted to touch base with you, as I am growing a bit concerned. It may be my imagination, but my sense from your posts is that you are feeling increasingly desperate, depressed and isolated.

I wish I could be there to give you a hug—and a much deserved break.

I’m here if you want to talk :)

I wrote back telling her that she'd been sweet and not wrong, that I'd had a bad day yesterday but that today is better what with the sidewalks clear and the snow mostly melted. I said that it does feel more isolating to have lost the ability to do the few precious things we were able to do with Calvin. I added that our lives have not changed much compared with most people's, and that maybe our experiences are more similar now.

It's a strange world to know all your favorite cities and people are on lockdown. Strange to speak on the phone with a loved one in hospice while looking at him through his kitchen window. To avoid people on the sidewalk. To no longer gather with friends over dinner. To not want others to pet Smellie, to put her on the leash when someone is coming. To wonder who in our circle of friends might succumb to the virus.

It's a strange world when one mother's child or sibling or parent is worth more than another. Strange that the wallets of oligarchs seem to take precedence over the ability for some to put food on the table. Strange and lamentable that, in a pandemic, so-called leaders don't hold themselves accountable for past mistakes, for present missteps and neglect. Strange when others don't see through the charade. Strange when wars are fought in the name of gods. Strange when pious people worship the shockingly ungodly.

The hospital set up at a pavilion in Ifema, Spain convention and exhibition centre in Madrid. Photo: AFP

rhetorical questions

While I sleep Calvin seizes, both for real and in my dreams. After a grand mal at two o'clock this morning, I dreamt of him seizing and chewing the inside of his cheek until it was like a wad of ground beef. Ninety minutes later, I woke up to him seizing again. My angst around his suffering made me think of a recent conversation.

Earlier this week I met up with a woman, perhaps a new friend, who not long ago arrived on my porch sharing information about Jehovah's Witnesses. During that visit, I had let her in to meet Calvin. This time, we sat across from each other at a bakery, snowflakes beginning to fall outdoors.

Over coffee, and while I nibbled a blueberry muffin, we discussed religion, science, God, Adam and Eve, evolution, heaven, hell, mankind, sex education, eternal life. I spoke of Calvin, and of his rough beginning. I asked her, in all seriousness, how she thought Noah had managed to collect Arctic animals such as polar bears, plus every living species of insect and animal—indeed multiple millions—into a 500-foot-long vessel, and then handle the rapid and exponential procreation of vermin and others, the colossal amount of shit they'd produce during a forty-day deluge, not to mention how he'd feed them. Without dismissing the existence of Noah, his ark or a major flood, I characterized the account and others in the Bible as folklore—stories written by man to help explain the unexplainable and perhaps to invoke the notion of God's wrath to maintain societal order.

Our conversation proved fascinating and respectful. I told her that I wasn't looking for answers to or explanations for life's messy situations, explaining my belief that nature simply runs its course. Though I don't entirely rule out the possibility of some kind of a divine force or creator, I don't believe in hell or Satan or angels, nor that Jesus is our Lord and Savior, though he sounds like someone I could hang with. After referencing other stories in Genesis, she described the Book of Revelations, saying God would one day make Calvin whole, make him into the normal boy I pined for in my most recent post.

Later, while taking a shower, I wondered what justification might be given as to why God would be waiting to make kids like Calvin healthy and whole. Why prolong Earth's miseries? I mean, if a merciful God exists, what's the holdup? Release the aid! We're fighting all kinds of battles down here! What has this alleged God got to prove or gain from withholding relief? He's not up for re-election. Or is this all some sick experiment? And as I watched the water spiral down the drain, I remembered what another friend had written to me recently:

If you could have seen the Florida skies at daybreak this morning, it would have given you pause to think about a Creator ... a mackerel sky that the sun lit up bright orange against a cerulean blue background. “The heavens declare the glory of the Lord, the skies proclaim the work of His hands ...”  (Psalm 19) 

As an integral part of this immense universe, I've seen a thousand blazing skies which astound and move me deeply. As I toweled myself off, I wondered how the majesty of nature's beauty is often declared as evidence of a divine creator, but the horrors of the world—famine, war, genocide, disease, poverty—despite infinite prayers calling for mercy, are not convincing proof of God's neglect or lack of presence.

Every day the impeachment trial, which I've been listening to intently, begins with the Senate chaplain's opening prayer. Monday, the chaplain prayed that God would lead the senators to do His will. What does that even mean? Will any outcome be proof of God's will? Is it God's will that children like Calvin suffer? Does God take sides in war and basketball? What makes one religion righteous and another counterfeit?

But I'm not looking for answers to these questions. They are rhetorical. I know what I believe in my heart, brain, bones and, if I have one, my soul. The sun rises and sets in infinite, glorious colors. The earth is quaking, drowning, burning as we speak. Human beings of all races and religions are good people just trying to survive. Some folks for whatever reason turn out to be corrupt, deceitful and threatening. Oceans and night skies glimmer endlessly. Nature can be unforgiving. Children are virtuous. Hatred is learned. Life is hard. People suffer needlessly. Prayers go unanswered. While I sleep, Calvin seizes. I'm not worthy of his misery.

Photo by Michael Kolster, 2015

on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

empathy and betterment

Though the grass is green, this dry spell has the shrubs curled up and thirsty. In their withering, I see myself, stressed and brittle. This journey as the mother of a child like Calvin—a teen who is legally blind, incontinent, nonverbal, physically and cognitively impaired, beaten by seizures and the drugs meant to thwart them—is a hard one both physically and emotionally. I'm chronically sleep deprived, burdened with worry, at times gripped by fear, anxiety and the shadow of devastation and despair. I wish I could somehow flee this reality. My mind is constantly buzzing with dour, unanswerable questions:

when will Calvin's next seizure be? will he choke on a piece of food? will he trip over a chair, run into a wall, fall down the stairs? do his bones ache from growing so fast? will he ever be able to tell us yes and no? will his various caregivers love him, keep him safe from harm? will he get good therapy at school? will he suffer another pain episode? will he ever be calm again? will he outgrow his seizures? will he die from one?

It appears that these burdens and worries most people don't fully understand. I see evidence in the scowls and puzzlement of strangers, in the way some folks avert their eyes when passing us, in the ways we have been dismissed or patronized by smug doctors, hospital nurses, and a handful of school employees over the years. I've little doubt that in my assertive, hypervigilant, helicopter mama-ness, I have haters and eye-rollers. There are those who don't take me seriously, think I'm oversensitive, inflexible, overbearing, unhinged. There are those who run when they see me coming, or who regularly assume the conspicuous and irksome cover-your-ass posture and pose. I wish all of them could walk in my shoes.

As is true with most of this nation's disenfranchised, misunderstood communities—the Disabled, People of Color, LGBTQI people, Muslims, asylum seekers, immigrants—Calvin and I are sometimes regarded with caution, mistrust and fearfulness, even perhaps contempt. I attribute this mistreatment to ignorance and a resulting empathy gap, an inability by some to more fully understand the struggles those on the margins of majority straight-White-Christian-able-bodied society endure, though all it really takes is openness and humility, to listen well and put oneself in other's shoes. But perhaps it's easier to avoid doing that, to stop short of admitting privilege, and less upsetting to avoid acknowledging ugly truths. But denial and indifference to the hardships of others gets us nowhere—as individuals, as communities, as a nation—on the path to betterment.

Wednesday morning, over coffee and a tasty blueberry scone at our favorite Dog Bar Jim cafe, a friend and I discussed the wave of asylum seekers from Angola and The Democratic Republic of the Congo whom our town has recently aided and absorbed. She recounted a conversation she'd had about the African soccer players who have joined the high school team, some who are quite good. Apparently, some parents are bemoaning the amount of playtime the asylum-seekers are getting (I can't help but wonder if their reaction would be different if the students were from Italy or England). When my friend's own soccer-playing son questioned it, she offered him an analogy: if he were to transfer to a new school with weaker players, he might get lots of playtime, too. A thoughtful kid, he understood.

My friend and I went on to discuss how helping asylum seekers is not the zero-sum game some purport is true. For example, we can also help our homeless neighbors and veterans, and we do. Furthermore, asylum seekers, once they're cleared to work, often fill the grueling, dangerous, tedious jobs many Americans don't want—harvesting crops, packing meat, caring for the elderly in nursing homes. My friend told me of a refugee physician who is driving a taxi just to make ends meet.

After our coffee date, I imagined the asylum seekers playing soccer with my friends' kids—one of a million things my son will never be able to do. Some of them speak four or five languages, having picked up Spanish and English on their journey north from Brazil. Many, if not most, traveled thousands of miles through South and Central America having escaped life-threatening circumstances back home. On their trek they survived beatings, muggings, hunger, thirst, and five months of travel on foot, at times through dense forests dark as night, stepping over the dead bodies of other refugees who would not make it to the USA. The ones who made it here are strong, tenacious survivors who likely have what it takes to make the best Americans. And yet, because of fearmongering and ignorance, they are sometimes met with animus and contempt, perhaps even envy and hatred. With this thought I imagine Calvin and the folks who seem to see him—without understanding his purity, love and struggle—as a freak, aversion or contagion.

I wonder what would happen if asylum seekers had the chance to tell their stories. Who would listen? Who would understand? Will these refugees, like Calvin, inspire some of us to become better people, better members of society? Will some of them give rise to other, better soccer players? Who, upon hearing their stories, would feel empathy and embrace them? And who would stand their ground, unmoved?

Carolyn Cole / Los Angeles Times

unease

Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich

shadowcasting

On the last night of August, as we sat with new and old friends around a fire in the dark garden, Calvin was burning up in his bed. From the baby monitor in my palm, I heard him rouse. When I went to check on him, his skin felt hot. His thermometer read 102.4 degrees. I stripped him down, gave him an acetaminophen suppository, then, as I brushed my teeth, I quickly went outside to wish our guests goodnight. Soon after, in bed next to him, I felt the embers of Calvin's fever subside over the hours.

I'm grateful that August is behind us, and with it its five grand mals, ten focal seizures, one pain episode—eleven days of this misery in all. Today, I feel autumn, and I wonder what September will bring. Tomorrow, if Calvin is feeling better, he'll be off to the high school to traipse bobble-headed up and down its halls. He'll be mingling with students almost twice his weight and nearly half as much as tall, kids who are light years ahead of him developmentally, kids who can speak and read and reason and judge.

As I listen to the crickets, the early evening sun casting its long shadows on a garden which, due to my inability to control Calvin's condition, I've worked so hard to control, I am cautiously optimistic about the year to come. Calvin will have a new teacher and new ed techs at school. The administration and staff have already gotten off to an impressive start, meeting with me and Michael for over an hour, professionally and compassionately addressing each and every one of our concerns.

Meanwhile, the college students are returning. We see them in the field behind our home, hear their riotous joy through our open windows at all hours. Their presence is bittersweet. While I bask in their youthful glee, their physical and mental prowess ablaze in stark contrast to Calvin's, I am reminded that Calvin will never enjoy the autonomy of cleaving. Michael and I will never savor that chapter of parenthood. Instead, our son will forever exist in our and other caregivers' shade and shelter, much like an infant or toddler, no matter how big he'll grow.

But as I lie with him, his skinny arms around my neck pulling me in, I tell him how sweet and dear he is to me. And like a dark August behind us, I hope one day his epilepsy sunsets, casting only shadows, leaving only traces and faded memories of unpleasant events.

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing.

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. After a few minutes the spasms had subsided and he fell asleep on the couch.

That same summer, a Black man named Eric Garner and a Black man named Michael Brown also stopped breathing.

The seizures continue to batter my son every three to nine days, or so, though now they occur almost exclusively in the middle of the night.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our fifteen-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun! stop shooting! officers, why do you have your guns out? please don't let me die! what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath!

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the White police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are White-privilege problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a Person of Color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by White law enforcement officers in a White criminal justice system, to live in a country where most White people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my Black and Brown friends, and it is a problem that is not simply going to disappear until White people start to acknowledge there is a problem, until, perhaps, White people start to feel uncomfortable, which is little to ask considering what Black people have had to endure in this nation for four-hundred years.

The night after the Grand Jury declined to indict the White police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am White, which is not to say I am proud to be White. It's to say I can go to our local cannabis dispensary and procure two ounces of the best bud which nearly fills a large mason jar. I can transport it home in its white paper bag never giving it a second thought if I get pulled over for a traffic violation. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were Black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my son's epilepsy? On the way home, would I be pulled over for, as some say, driving while Black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over being questioned and doubted by the cops, be seen as belligerent, be cited, be assaulted, be put in a chokehold, be arrested, be thrown in jail? Would they shoot me while I reached into my purse to get my son's medical marijuana card? Would my last words be, "I can't breathe"?

bigger picture

My husband said, "You have to forget yourself." He was describing what it takes to care for our son. It's a monotonous, tedious, sometimes frustrating job which requires laser focus on Calvin's every move lest he get hurt or make a mess out of things, namely his own shit, of which I have much first-hand experience.

In yesterday's post, helicopter mama, I describe some of the minutiae of Calvin's care, my bad habit of hovering over him and his caregivers and, in doing so, my tendency to step on toes. The post drew a number of comments, the first from my friend, Les, whom I've known for twenty-three years. He wrote:

You are the only woman I know that is strong enough and has the right personality to do what you do.

One of Calvin's former therapists commented:

poignant and insightful for those who hope to say the right thing ... but don't.

A friend and mother of a child like Calvin sent me one of two heart GIFs, and another simply said:

Yup.

One reader with whom my post struck a nerve, wondered for whose benefit I write the blog. I explained that I write it for myself and those in similar situations, with the added hope of engendering introspection, including in myself, and to offer insights into messy situations which are nearly impossible for most people to imagine or grasp otherwise. I said I hope the blog prompts readers to put themselves in other's shoes, to recognize their own good fortunes and perhaps inspire empathy, humility and gratitude. I should have added that I aim to reach people who find themselves in any kind of stressful, challenging circumstance, hoping they find solace in my words and perhaps feel less alone.

Another reader, a poet whom I've never met, sent me a personal email in which she said:

I hope most caregivers have grace and understand and allow room for what you need to do to be with your son. Caregivers have a difficult job too—but it is not the same thing as being you in your relationship to Calvin. True healers one hopes for—and the healing is in support of you too. It has to be. You and Calvin are not in isolation from each other, and I (can only) imagine this requires dedicated teamwork. 

She went on to say:

I have been reading your posts for a number of years now—I don’t know how many years. Your honesty about yourself and others—not sham “honesty” to excuse cruelty, but true and difficult honesty—is your integrity. You don’t make this shit up. You hold yourself accountable. I hope most of your nurses and other supporters understand and can be there with you.

Her words brought me to tears; I sincerely hope I live up to them.

While I digested the various comments yesterday, one in particular, I realized that my post was missing something. I needed to helicopter out to see the bigger picture rather than hovering at microscopically close range. I'm not saying caregivers shouldn't forget themselves and focus closely on the job at hand: my boy's safety and well-being. I'm saying that from a more generous vantage point I'm able to see that, for all of my complaining and frustration, most of our many caregivers over the years—nurses, ed techs, teachers, therapists—have been lifesavers of sorts. If it weren't for their assistance, their affording me much needed respite, who knows how I'd be dealing? And I'm not saying I couldn't take care of Calvin without them. I know I could. I did for the first two years of his life and for months at a time since then. But I've little doubt I'd be in far worse shape without having had them, (not that I'm in that good of shape now.) Caregivers have allowed me to walk the dog, romp in the garden, write my blog, research epilepsy treatments, do house chores and shopping, catch a rare movie and sometimes a much-needed nap, and grab a drink and a bite with my husband. But perhaps the most important thing of all that has nothing to do with me is that they have always doted on my son.

As I finish this post—one not unlike most others in which I begin writing without fully knowing where it will end up—I see that it has done what I hope my posts do. It has prompted (my) introspection. It has humbled me some, revealing my thin skin and pettiness. And it has helped me to be grateful for my own good fortunes.

Calvin and nurse Rita