sheltering in place

Sheltering in place. Stuck at home. Missing school. In our current circumstance, we can't go to the movies. Can't browse our favorite stores. Concerts and birthday parties and day camp and sleepovers aren't options. Can't go out for family dinners at our favorite restaurants. Can't do play dates. Can't go to the playground to swing or climb on the equipment. Can't go on vacations or spend the night away while someone else babysits. Not yet, anyway.

Stuck at home for what is and will be hours and days and weeks and months on end—for the foreseeable future considering the state of things. We can listen to music, turn on the news, call friends, read a few chapters, write a little. We can do house chores, take naps and long showers, enjoy films, go to bed early. We can watch our offspring play alone. We can cook and eat and drink. Weather permitting, we can take walks in the neighborhood. We can go on long car rides. We can stroll through the woods. Mostly, though, we're stuck at home.

Visiting friends for family dinners isn't an option. Going to the grocer is a challenge. They're frequently out of what we need, often when we need it most. When we do go, other shoppers regard us with suspicion. We have to steer clear of touching certain surfaces, especially since some of us so often touch our face and mouths.

Times are strange. Life is hard. Welcome to our world.

As the parents of a non-verbal, incontinent, impatient, unsteady, severely developmentally-delayed teenager with autism and frequent seizures who is often loud, can't sit still or play with others, touches and mouths everything including his fingers, and who sleeps in a special safety bed, we've lived the way I've just described—stuck at home, mostly, with little else to do—for sixteen years. Thankfully, in great part because of the love and support of others, I've survived and remain mostly sane.

That's why I'm convinced, in this strange and scary time of coronavirus, you can too.

Call me if you need a pep talk. I'll most likely be at home.

Photo  (screenshot) by Michael Kolster

changeling

There goes my kid again—manic, shrieking, flailing, tossing his head back and forth, dropping down, drooling, rashy, agitated, spacey, fingering like mad, unrecognizable to me in so many ways. In my darkest, rawest moments of cumulative sleep deprivation, frustration, despair and fatigue—and when Calvin behaves like this—I sometimes think about what a freak he can be, especially under the cloud of a looming seizure.

Before dawn, my hand resting on his pounding heart, my little imp drifts back to sleep after his fit. My mind wanders. I think about our dear friend who took his life late last month; I wonder what misery plagued him. I remember the videos of Calvin in which he was calm and smiling, sitting quietly paging through his favorite board book, walking with his arms at his sides instead of circling wildly above his head. I revisit Michael's essay about changelings—children who, in medieval lore, were considered freaks having been born with mysterious diseases, cognitive or physical defects. The changelings' curious and abhorrent afflictions were blamed on being the offspring of faeries or trolls who were switched for healthy children at birth. Many of these changelings, too burdensome for their families to care for, perished in rivers.

Our boy Calvin, like the changeling, is certainly an enigma. We'll never know who or what or how he might have been had he been born with a healthy brain, had he never developed epilepsy, had he never taken ten antiepileptic medications, plus drugs for constipation, drugs for reflux, drugs for sleep, drugs for his gut. All I know is that he, a pubescent teen, is in many ways stuck somewhere between infancy and toddlerhood. I see his peers ride past on their bikes; it won't be long before they'll be driving. They play in bands, compete in sports, act in plays, learn foreign languages, read novels, write papers, consider politics and explore the stars. If they haven't already, they will hold hands and kiss sweethearts. In just a few years, they will be awarded their diplomas, will go off to college, perhaps travel the world, take care of themselves. Our changeling will remain here with us doing the same infantile, rote things he's been doing since he was two ... and likely seizing. And though it's painful every time I try to picture Calvin doing amazing yet ordinary things—even having a simple conversation or walking in the woods with me—I can't stop myself from imagining.

As Calvin recovered from this morning's grand mal, Michael shared with me a presentation he'll be giving today at the college. One of the first slides includes a quote from Diane Arbus who was photographing changelings in the mid 1960s before she took her own life:

There's a quality of legend about freaks. Like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they'll have a traumatic experience. Freaks were born with their trauma. They've already passed their test in life. They're aristocrats.

As I mused on her words and studied her photos of children and adults with serious afflictions, I saw in them—in their remarkable faces, expressions and peculiar postures—their utter humanity. I regard my boy and see the same thing in him. He's my little changeling, and somewhere inside his shell of tension, anguish and pain, is a boy who emerges as the best of any of us—warm, sweet, unassuming, loving, uncritical, faultless, pure and unmistakably human.

Photos by Michael Kolster

shitshows

Everyone needs something to laugh about, particularly in these days of shameless bigotry, of families being painfully separated, infants "defending" themselves in immigration court, White folks calling police on Black men, women and children for rightfully swimming in pools, barbecuing in parks, entering their own homes, mowing lawns and selling water in their neighborhoods on hot summer days, in these days of a POTUS eroding our alliances while cosying up to tyrants, his administration attacking our clean water, clean air, reproductive rights, human rights, health care, free press, and diminishing our standing in the world as a reasonable, ethical, dependable, faithful nation worthy of respect.

Yes, the cartoon below made me laugh, giving me a brief reprieve from the shitshow going on around us these past eighteen months.

Like politics, life with Calvin has its ups and downs and exacerbating in-betweens. I'll be the first to admit that taking care of him is the most difficult challenge of my life, and it tests me daily. Caring for our tiny teenager who in reality is much like an infant on the verge of walking—he's non verbal, still wears diapers, can't really feed himself, suffers poor balance, has occasional tantrums—has been hard on my mind, body, spirit, and psyche over the years. It turns out, for whatever reason, I'm up for the challenge. But don't tell me that it's because God chose me to be Calvin's parent due to my strength and patience. Don't tell me everything happens for a reason which, if you break down that theory, it means that some divine entity—the likes of which I don't and could never believe in—put Calvin here on Earth in the fucked-up and suffering condition he is in only to teach some twerp like me a lesson; I am not worthy of my son's suffering. No one is. And don't tell me that God doesn't give folks more than they can handle, because my response to that will always be, "if that is true then why do people off themselves?"

Nope. Calvin is very simply here. And I am simply the mom who birthed him. And his brain is messed up because something in nature went awry or simply didn't develop. And I choose to find purpose in the shit that happens to him and to us, in great part because I must've been born an optimist, I believe deeply in the power of gratitude, I am strong, patient and resilient, and I luckily inherited my mother's effervescence and my father's sense of humor and cynicism.

So, world, turn up that shitshow dial to eleven if you must. I—and the rest of us—can take it, even if we're sometimes weary.

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Photo by Elizabeth Aquino

short-term strategy

1. Monitor whether going back down on Keppra dose reduces partial complex seizures.
2. Get Calvin's blood checked, including yeast antibodies and low white blood cell count—possible symptoms of yeast overgrowth—plus low thyroid function and uric acid buildup, all possible seizure triggers.
3. Continue weekly 0.05 mg reductions of clobazam; last dose planned for February 25th, if not slightly before.
4. Make next THCA cannabis oil twice as concentrated for use during regular daily dosing as well as for nighttime dosing when needed (i.e. omit grain alcohol in making a nighttime oil, so as to eliminate possibility of inflammation.)
5. Investigate and purchase tart cherry juice for improved sleep, antioxidant qualities, uric acid elimination and possible seizure suppression.
6. If Calvin's blood test indicates a yeast overgrowth in the gut, treat with oral nystatin and/or saccharomyces boulardii and lactobacillus bacterium. Consider adding those two probiotics to his regimen nonetheless.
7. Consider switching from CBD oil to CBDA oil because my gut is telling me to.
8. Consider reducing Keppra in the future.
9. Hope that after the elimination of clobazam, Calvin will eventually improve in myriad ways.

Photo by Michael Kolster

stay fearless

"Stay fearless," she said at the end of the interview. The words of Kathrine Switzer, the first woman to run as a numbered entry in the Boston Marathon, stuck in my head along with images of her being chased and shoved by a race official in an attempt to rip the pinned number off of her chest.

These days, especially since Calvin was born, I try to live by those words. I try to avoid fear-based decisions. If I let fear grip me I know I'll be paralyzed.

Wednesday, when Calvin woke, he wasn't quite himself. I considered giving him an extra Keppra to thwart any impending partial seizures, but I decided against it, not wanting him to be too drugged up. Regrettably, within an hour he suffered the dreaded seizure after having become increasingly irritable and out of sorts. Later, I was loathe to take him to the grocer, but I remembered those words—stay fearless—so I gathered him up and drove him to the store.

I never know how much to push Calvin beyond his comfort zone. He has rarely walked outside for more than a few blocks, particularly since last summer when he broke his foot and lost a lot of the progress he'd made. Every time I try to take him past Woody's house three doors down he has a tantrum and I never know if he is simply being stubborn or if there is a grand mal on the horizon. Other times, he is both wan and flushed, and I wonder if he is having some sort of mild seizure or if his complexion is an indication of an aura. Often, his balance and gait are excellent the day before a grand mal. All of these things were true on Wednesday, but I took him to the store regardless because it was only day five since his last grand mal and over two weeks since his last benzodiazepine reduction. More so, I thought to myself that if I don't venture out because of fearing a seizure or provoking one, we'd never go anywhere.

So we went. Calvin did great, walking well and being mostly compliant. The next morning he suffered a grand mal. We both survived.

Sadly, Calvin is having some kind of seizure several times a week these days, though thankfully his grand mals are still confined to the night. With regard to reducing the fits, I've still got a few options in my back pocket such as increasing the CBD or THCA cannabis oils or trying a maintenance dose of THC. I could stop the benzodiazepine wean, but that would constitute a fear-based decision that might not yield much of an improvement, plus we've seen his behavior improve immensely with each bit of benzo we remove.

So, I'll try to stay fearless in the face of seizures and drugs side-effects and the thought of losing my child. I'll keep pushing beyond my comfort zone, however little, and keep encouraging Calvin to step outside of his own. After all, this is our marathon. Though it is often painful and scary, we're in it to the finish, so we might as well try to shine.

Photo by Ann Anderson

patch of light

A miserable wind ekes its way through cracks in window frames and under doors. It was meant to be “warm” today, but at thirty-six degrees it has begun to snow. Most of what had dropped this season had already melted revealing dead grass, crumpled brown leaves and sidewalks strewn with sand and salt. Last week, purple crocus spears pushed their way through thawing mulch, the only color in a barren March world.

I sit at my desk on this gloomy day wondering what to write, and as I do my eyes wander to a photo that Michael gave me years ago, which sits in a corner window sill. In it, he and I relax in the sun near a favorite place called The Lookout, his head in my lap, our dog Jack at my side. Pregnant, I was in the initial weeks of my first trimester, and Michael fashioned a photogram of a single white dot symbolizing our unborn child, then set it adjacent to the shot of us three and encased it in a raw wooden frame.

The image of that single dot, that patch of light, had held so much hope, so much promise, and I’d ask myself: Will it be a boy or a girl? Will she be blond or he brunette? Next summer, will we be basking at the beach, our child playing with yellow buckets and plastic spades? What might his first word be?

Alas, life offers no guarantees. Our boy came six weeks early missing part of his brain and barely able to breathe, as if the reams of troubling medical reports, test results, endless worry and dread were pressing on his birdlike chest.

It was a day like today, twelve years ago, a month after Calvin's birth, that I was propped in the hospital bed holding him, gazing out a window into a forest veiled in snow, trying in vain, or so I thought, to get my son to nurse so we could finally take him home. He was so wee and frail. Michael held vigil while our dog Jack laid on his bed in the corner of our labor and delivery ward room. Outside, leaden skies leeched all color from the scene. Trees were black. Snow was white. Stones were ashen grey. My heart sunk wondering if we'd ever get to take Calvin away.

The days were long and lonely, the three of us being cut off from friends and family and home, living in an antiseptic room with a helpless child and no way of knowing the hardship that was in store. Winter seemed never-ending and I rarely left my boy's side except to venture out into its cold for a spell just to breathe and feel alive.

But as I look at this photo twelve years later, and think of my son who has come so far—walking and, though not talking, signing a few words, and able to recognize and love his parents and his home—I see the patch of light and in the glass a reflection of the outside world, and it makes me wonder again what promises it might hold.

problem solving

I don’t even know where to start, I’m so tired. I guess I’ll get right to the point and say that the one thing that is harder for me than taking care of my non-verbal, incontinent, unstable, legally blind, eleven-year-old boy who has medically refractory epilepsy, is taking care of him when he is sick. When he's ill, its just one problem after another.

Calvin woke at one-thirty this morning and vomited. He was crying, so I knew the retching wasn’t due to a partial seizure. Unlike some children, I can’t lead Calvin to the toilet or tell him to spit up in a bucket or bedpan. I have to crawl into bed with him and struggle to keep him on his side so that he doesn’t choke on his vomit and aspirate, because he seems to want to be on his back when he throws up.Then I do my best to try to catch his vomit in a towel. As he grows it’s getting harder to restrain him and it doesn't help that he doesn’t understand. Being in bed with him when he is sick means that I usually get puke in my hair and on my face. Thankfully, it doesn’t bother me, I suppose because I am his mother.

Afterwards, the poor kid was rubbing his head madly, so I gave him an acetaminophen suppository in case he had a headache. He went back to sleep for an hour then woke up and vomited again. At 3:45 a.m. he had a three to five-minute tonic-clonic (grand mal) seizure. During these, his body stiffens then convulses—every inch of it. Michael and I watched his fingers and lips turn blue from lack of oxygen. I held a bottle of lavender under his nose and the convulsing stopped.

Clobazam, the benzodiazepine we are gradually weaning Calvin from, has a long half-life (18 hours for the parent drug clobazam and over 50 hours for one of its metabolites) so we gave him his morning dose two hours early to thwart a second grand mal. This strategy has seemed to work in the past. Unfortunately, forty-five minutes later Calvin awoke to a complex partial seizure, one in which he does not convulse but instead is semi-conscious with a rapid heartbeat and shallow, if any, breathing. I took a rectal temp which was 100.3 degrees, so I gave him an ibuprofen which he couldn't swallow at first. Calvin’s complex partial seizures have been long these days—upwards of three and four minutes—and I always fear they will “secondary generalize” into a grand mal, meaning they will spread from an isolated part of his brain to his entire brain. With this in mind we decided to give Calvin the dreaded Diastat—rectal Valium—which usually does a good job of stopping clusters of grand mal seizures, but can wreak havoc with Calvin’s behavior and sleep patterns because of its addictive nature, short half-life and rapid withdrawal.

Calvin hasn’t had any more grand mal seizures so far today, but in all he has had five, long, partial seizures. After the second one I gave Calvin 8 mgs of THC rescue med, but it did nothing to thwart the others.

By mid-morning, I had a thought: what if we gave Calvin a temporary increase in his Keppra? No neurologist has ever mentioned this option, so I emailed Calvin’s doctor and he confirmed that the method is sometimes used to control spates of seizures. I have no idea why neurologists don't, as a rule, equip their patients with these helpful strategies; I’m just thankful that I am a problem solver. So, we gave Calvin a half tablet of Keppra and will give him another half tab between his lunch and bedtime doses.

So far, no additional seizures since eleven-thirty this morning, though he’s really not himself. So I ask myself some of the same questions my dear friend Elizabeth did about her child last night:

is he sick? is he suffering a withdrawal episode? is it puberty? is it the recent increase in Keppra? is he outgrowing his cannabis oil doses? is it the fever? is it the acetaminophen-ibuprofin-clobazam-keppra-THC-THCA-CBD combo? WTF?

As usual, I can’t answer my own questions. All I can do is have a hunch, which is that this rash of seizures is a benzodiazepine withdrawal/puberty combo, and there's not too much I can do but what I've already done.

Although, next, I think I'll research acupressure and epilepsy. You readers know anything about that?

Photo by Michael Kolster

tremors

Just as the aftershocks in Nepal were seizing the region, my son's mind suffered an earthquake of its own. Laying next to him as he slept in the seizure's wake, his mind awash in rescue THC, I wondered if all sixty-five million people with epilepsy had simultaneous seizures might the world's crust crack open and bleed.

We were lucky this time. Calvin only had one seizure, albeit a tonic-clonic (grand mal), rather than the twenty-four hours with scores of brief partial seizures of recent, or February's status epilepticus, which landed us in the emergency room wondering if they’d ever stop. It was day eleven since the partials occurred, and nearly two weeks since his last tonic-clonic, the only daytime one he's had in 235 days thanks to cannabis oil.

On nights like these it's often difficult for me to get back to sleep as I feel my boy's body twitch with aftershocks, which thankfully the cannabis dampens. This time, the images of Nepalese men covered in grayish dust, statues half submerged in the quake's rubble, haunt me. I wonder how the live ones breathe, if they can see or feel the bricks pressing in on them or if they’ve become numb to it all. I wonder the same about my boy when seizures plague his brain stunning him into human stone. I have little doubt he senses them coming, his neurons going berserk then seeming to align in harmony, so much so that he walks straight and strong and long. But all the while the neuronal tension builds and the stress becomes too much until everything snaps, his brain awakening into tremors, which leave him in a shambles.

I imagine Calvin's brain brittle from the whip of antiepileptic drugs, their toxic chemicals leveling his development, smothering his strength, toppling the progress he works so hard to make. Then along comes cannabis infused in oil, its medicine lubing Calvin's neurons, its protective balm bathing the precious cells of his brain helping it to withstand the shock of seizures, to mitigate the quakes, mend the breaks and heal. I wish there were such a salve for the people of Nepal.

Calvin in the grip of a seizure

all the little children

Though still icy and white outside, for some reason the world looked black to me this morning. Perhaps because it was so goddamn windy, the temperature still hovering around nine degrees. Or, perhaps because of Calvin, the reason I can never sleep in past five o'clock these days. Maybe it was because I hadn't had my caffeine or that I’m weary walking circles with my disabled boy, of spooning in his seizure medicines and of wiping away his drool.

When I finally sat down and read the news about seven siblings who perished in a Brooklyn blaze early Saturday morning, it made me think of what Michael had said earlier, hoping to ease my way: things could be a whole lot worse.

After Calvin left for school, I downed my coffee, had a bite to eat, then bundled up to take Nellie for a walk. I strolled slowly, studying the pitted frozen pools at my feet. I kept imagining all the little children, ages five to sixteen, and wondered how their parents and their sister are going to cope.

As I walked, I held a kind of silent vigil for them and for all the lost children whose parents I’ve known. I first thought of Kari, a bright, most beautiful girl whom Leukemia claimed when we were both teens. I thought of Jennifer, who at seven lost her battle to cancer, too. And of Rainier, who, in the wee hours after entering the world early, couldn’t hold on. I recalled Lily and Rose, flowers of girls who never breathed their first breath, and of little Katie, too. And of sweet Kelli who epilepsy took when she was just fourteen. At twenty-three my friend Martin went down in a plane along with his dad, and the maid of honor at a wedding I was in lost her nine-year-old girl to a bullet at Gabriel Gifford’s ordeal. Childhood friends lost their young son to kidney failure, others lost their children to drug overdoses while still others took their own lives.

When I got back from my walk I remembered last night on the futon when a smiling Calvin was smothering us both with hugs, Nellie by our sides. I had said to Michael that we have a nice family. As I cleaned up this morning’s dishes and hung sopping bibs to dry, I considered my boy Calvin, who, though he will likely never utter a word, is here now, and is as pure as the rain which I hope will soon be melting away this icy cold.

more forgiveness

On a recent rainy day I watched a film about forgiveness. Exiting the theater into blinding sunlight, I saw things anew. I saw how the clear skies forgave more than a days' worth of rain, how the wilting rhododendron flowers laced with rotting brown forgave the rain, too. Evergreen bows hung low forgiving the coat of droplets burdening them, then they forgave my sheers for cutting into their flesh hoping to spawn new growth.

A carpet of soft green forgave the heels of my boots, which sunk into its moistness. I forgave myself for lopping down the slightly sickly crabapple in exchange for a long view of the garden and the deep sigh of relief that spaciousness can offer.

The Cannabis Man came by and I forgave his long absence with a hug and a visit to the garden where the mosquitoes lunched on our flesh. But we forgave them because it was worth risking their bite to breathe the sweet vanilla scent of white azalea blossoms splotched with yellow, to see the delicate tips of iris and swelling peony bobbles.

Later, I forgave Calvin for pulling the hair at the nape of my neck, and he I, for the string of bitter words I pitched his way. I forgave him for his poor balance and for his intermittent lunacy, and he I, for my neglect.

I forgave the psychotic chipmunk chirping ad nauseam from one corner of the garden, and the crow for fouling the birdbath with the mushy white bread it gets from an unknown neighbor.

In hindsight, I forgave the bits of soggy movie popcorn because it was drizzled in real butter and tasted delicious. I forgave the drivers—all of them—the slow, the erratic, the ones who don't signal or allow me to merge. I forgave the man in line in front of me at the grocer who wrote a check in the EXPRESS lane.

And the earth forgave the darkened skies, its tender green spears thrust upwards like the necks of chicks to their mother. I forgave the bottle of bourbon holding barely a drop in its base. I forgave myself the cheese quesadilla for its burnt underside and the avocado for its brown spots.

I learned recently that Calvin's exome sequence came back absent of any genetic mutation that might explain his condition, which leads a mother like me to wonder what happened—what I might have done—to contribute to his demise. It could have been one of any number of things—those sips of wine or morsels of goat cheese, those swim workouts, the chlorine, the wall paint, the respirator. I can't know, and Michael insists it was nothing I did. But I must find a way to forgive myself, even if there is nothing to forgive.

before sunrise

Pitch black outside, frosty cold and damp, the sun not having come up yet. I sink my chin into the ruff of my winter jacket, fighting sleep, fists shoved deep into my pockets. In the back seat of Pam’s beater Nova, I’m nestled in next to my buddies, Lidia and Katie, tracing smiley faces on the steamed up windows. The dots I’ve made for eyes melt into tears.

We idle silently in darkness as other cars begin to arrive, each shining its headlights into our warm interior, square patches of light shifting and panning over our tired faces. We wait for Coach to arrive and unlock the door, secretly hoping he won’t show so we can go back home to bed because we need our sleep, which is perpetually denied. With boyish bodies, narrow hips and flat chests, we are fourteen, but on our way to making the change.

Undressing in tired silence, we strip down to the chlorine-bleached swimsuits we’d slipped on under our school clothes before dawn. The tile floor feels cool and slick. We dread what is about to happen—at least I do. One by one we saunter out to the pool deck, snap on our swim caps, tuck in our hair, adjust our goggles and peel off into the tepid water. The first plunge is a shock, but then we get moving, creating a swift eddy within each narrow lane. The water tastes like soda ash and sweat. Soon we feel the pain—the pain of burning lungs and muscles starved for oxygen, the ache of churning limbs gone miles given little time to rest and cling to the gutter. We watch the clock, which with its large flat face watches us—mockingly—its austere second hand mercilessly sending us off with only moments to catch our breath. We repeat this pain after school. We repeat it the next day. We repeat it the next week, the next month, the next year, and the one after, and the one after, and the one after. We are aquabots. We are jocks. We are mermaids. The water is our second home. It softens us and hardens us at the same time. We become it—malleable, forgiving, resistant, reflective.*

These days I experience much of the same, waking before dawn, sleep deprived, to see the sun just beginning to come up, dreading what is about to happen, shocked by the sound of Calvin's first whine. The clock labors along as we pace back and forth and back and forth between bookcase, shutters, table. I taste the bitter pill of monotony, worry, frustration, of what has, in great part, become my life. I repeat it all the next day, the next week, the next month, the next year. My boy Calvin softens me and hardens me at the same time, my dotted eyes sometimes melting into tears.

*Excerpt from a work in progress temporarily titled Memoir.

falling down

The greatest glory in living lies not in never falling down, but rising every time we fall.
 

—Nelson Mandela

photo by Michael Kolster

art

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

—Pablo Picasso

photo by Michael Kolster

into the trees

From last July

 I must allow myself simply to
wander into the trees

That is where mystery lies

sometimes dormant, sometimes teeming

I must step through mist that
wraps round my ankles

without fearing what might lay in my path

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

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

Or as dew drops pat my face

I might happen upon a gleaming river 

just beyond the parted trees

I might rest on a large stone and
melt into it

I might lay myself down into a
bed of moss

and listen to wind finger through the leaves

to bird songs
to rain and crickets

and forget all the rest

I must feel the bark chafe
against my face

I must sink into the mud from whence I came

I must wander into the trees 

and very simply

get lost

photo by Michael Kolster

little trooper

All of my favorite jeans have worn through in the knees. The tattered holes are not intentional, but rather the product of countless months teaching my son Calvin to crawl since he couldn’t do it on his own. The lesson was arduous, both of us down on all fours as I supported his torso with one hand and with the other moved each limb in sequence—right arm, left leg, left arm, right leg, and so on. We practiced hours each day from the moment when most kids learn to walk until he was just over two, at which time he was able to creep a few feet on his own.

Calvin was born six weeks prematurely with significant neurological deficits of unknown origin. Since before birth he has suffered the absence of a large portion of the white matter in his brain and, as a result, cerebral palsy, serious ocular and cerebral visual impairments, global hypotonia, hypothyroidism, slow gastric emptying and pervasive developmental delays.

Shortly after Calvin turned two he was diagnosed with epilepsy, which at the time I believed was a benign disorder for which you take a pill and everything is okay. I had no idea that it would eclipse all other adversity we had yet encountered. Calvin's first seizure was a four-minute grand mal seizure. He choked and stiffened, his face turned ashen-grey then blue and, with eyes bulging, he began to convulse. In a panic I called 911 and he was taken by ambulance to the emergency room. That was the first of innumerable visits there and to the NICU, the first of hundreds of seizures, the first of several intubations, of scores of drugs, dietary therapies, nauseating side effects and countless missed milestones.

Even with powerful medication, Calvin continued to suffer seizures that came in large clusters and at times developed into status epilepticus, a prolonged seizure that can often lead to death. During one forty-five minute seizure when he did not respond to a bevy of emergency medication, we were left helpless at his side, terrified for his life and powerless to do anything to help him.

The medicines cause horrible side effects, many of which Calvin already suffers as a result of his neurological condition. The drugs can also have lethal side effects leaving us to wonder if the treatment might be causing as much damage and risk as the epilepsy itself. None of this he understands. Sadly, Calvin cannot tell us what is hurting. Though he is nine, he cannot speak, cannot walk without assistance and remains in diapers. I have no doubt that things would be different if it were not for the epilepsy.

But Calvin is a little trooper. After each attack he has bounced back, at least part way. His tenacity is formidable. Despite this battle we wage, Calvin has enriched our lives beyond measure. He has taught us to delight in simple things, to have patience and to take nothing for granted. It is because of Calvin that we persevere.

Epilepsy affects 3 million Americans and their families, about 1 in 100 people. One in 26 Americans will be diagnosed with epilepsy at some point in their lifetimes.

Epilepsy kills 50,000 American’s annually—more than die from breast cancer—including children. Even so, it remains a most obscure, stigmatized, underestimated, misunderstood and grossly under-funded disorder.

Epilepsy is the second most common neurological condition affecting more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Over a third of people with epilepsy do not have their seizures fully controlled with medication.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s disease enjoys more than four times the amount of funding from Pharma, nearly three times the government funding and at least ten times the funding from private entities as compared with epilepsy.

People with epilepsy suffer debilitating, sometimes lethal, seizures and/or heinous side effects from medication and most must remain on these drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions.

The only hope to end this suffering is a cure. http://www.calvinscure.com

Calvin at 18 months, 6 months before actively crawling

a hero is

I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

—Christopher Reeve

photo by Michael Kolster

bird by bird

For my friend Eee:

A few years ago my sister gave me a beautiful strand of cloth birds she’d brought back from Asia. The dozen or so resemble hummingbirds and are hand sewn, cut from colorful felt. Tufts of yarn serve as wings and tails—beads for eyes—and each is wrapped in a metallic gold ribbon harness. The cord itself is adorned with various beads and shells and a tiny brass bell tied at the bottom tinkles happily when disturbed. The string hangs from a tack beside Calvin’s bed just to the right of the light switch. When I turn the light on I sometimes jingle the bell—inadvertently or not—and it makes me smile.

When she gave it to me I pondered its symbolic meaning. At first I imagined it like a calendar, similar to the bird-themed oblong felt ones that my deaf, autistic uncle embellished with sequins then sent to us every Christmas when I was a kid. And then I thought of the book Bird by Bird, by Anne Lamott, that I’d read several years ago and from which this passage comes:

Thirty years ago my older brother, who was ten years old at the time, was trying to get a report on birds written that he'd had three months to write. It was due the next day. We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books on birds, immobilized by the hugeness of the task ahead. Then my father sat down beside him, put his arm around my brother's shoulder, and said, "Bird by bird, buddy. Just take it bird by bird."

We have to think of our life with Calvin in much the same way, taking each day, each challenge, each disappointment, each monotonous, worrisome, fearful minute one by one. To do it any differently would be too great a task, too daunting.

Sometimes I look back at past calendars. In any given month a dozen or more days are blocked with fading orange highlighter—like a quilt—noting Calvin’s seizures, marked with large black dots flagging tonic-clonic ones or strings of heavy “Os” for partial complex ones. Following are smeared inky descriptions of each; how long, how violent, if he stopped breathing, if we had to give him the emergency rectal Valium, if we called 911, if we went to the ER, if he was transported to the pediatric intensive care unit in Portland. Each month is stained with bright green or yellow swathes and scarred in sharp black letters tagging changes in Calvin’s multiple medications, doctor’s appointments, blood draws, illnesses, therapies and nurses’ visits.

And when the enormity of our situation becomes too much to bear—when I don’t know if I can change another dirty diaper, hear another manic scream, struggle to give another medicine, agonize over another seizure, endure another sleepless night—I run my hands down that colorful strand of plump cottony birds and think to myself, bird by bird, Christy, bird by bird.

Originally published 01.23.12.

little ball and chain

Calvin's being sick is a strange mix of emotions—fear, dread, sorrow, frustration—and it pulls me back from the feelings I have when he is manic and nearly impossible to deal with. Those are the times when I selfishly wonder what it would be like if my little ball and chain wasn’t around anymore.

When he’s this sick and crying, coughing, vomiting, not eating, not drinking and feverish, he has a hard time falling asleep unless he wraps his arms around my neck. So, when he was in his bed, I leaned over to let him hug me. His whimpers trailed off and he fell asleep with my head in his grasp, my knees dug into the side of his bed helping to support my own weight over his body. I remained that way until my hand and leg started falling asleep.

Calvin can’t tell us what is wrong, so when he is ill we make a habit of taking him to the doctor to get him checked out. After an hour of waiting we finally saw the doc. She inspected his ears and throat, which looked fine, then informed us that croup is going around. When we got home I looked it up:

Croup: inflammation of the larynx and trachea in children, associated with infection and causing breathing difficulties.

This is how kids like Calvin die. F*ck. What would I do without him?

With my head resting on his hot forehead as he sleeps I peer over his little bird wing to his exposed ribs and his thin, knobby-kneed legs folded up to his chest like a newborn colt. He wears only a t-shirt and diaper to help cool his fever. He appears much smaller than he is, even though at eight-and-a-half he still wears clothing meant for a six-year-old.

Calvin has never really been a healthy child, since even before he was born, lacking a significant amount of his brain’s white matter for no apparent reason save a possible developmental blip. He’s had digestive trouble since he entered this world, has suffered more than his fair share of ear infections and pneumonia, and has endured seizures since he was eighteen months old. Even in the absence of illness he still takes a mind-boggling amount of anticonvulsant medication that would hurl any adult into a brick wall rendering them senseless. The drugs meant to stop his seizures cause him heinous side effects—nausea, drooling, visual disturbances, ataxia, lack of appetite, brain fog. Poor little kid just can’t catch a break.

All day I feared having to take Calvin to the hospital to treat dehydration, respiratory distress or—worse case scenario—a seizure that won’t stop. But he made it through like the champ that he is, took his nine evening antiepileptic pills in one fell swoop and kept them down, then eventually stopped crying and started to drink again.

Today Calvin is on the mend and it appears he’ll be gracing me—and vexing me—for the foreseeable future, which is barely past the end of my own nose, if that. So I'll just try to live in the moment while loving and coping and struggling with my one and only, irreplaceable, sweet little ball and chain.

photo by Michael Kolster

forty-nine

Despite the fact that eight years of raising Calvin has likely shaved a few years off of my life, in my mind, spirit and most parts of my body I still feel thirty-nine. But I woke up this morning entering my 50th year of life. And though my birthday starts with a head cold, a slightly sore shoulder and a middle a bit chubbier than at thirty-nine (but eating Frosty's donuts for breakfast anyway) from my perspective life still looks decently rosy.

That fact is a testament that we, as the refined humans we have evolved to be, are as resilient as shit, most of us able to handle the nasty curve-balls hurled our way at different times in our life. I'm not one to believe in the words I sometimes see and hear people quote, that God doesn't give us anything we can't handle, because if that were true why would some unfortunate souls off themselves? I am one to believe, however, that we can benefit from bad things that happen to us. We can find the generous pluses, for instance, amidst the scores of miserable minuses that a disabled child brings in the form of guilt, despair, anger, resentment, heartache, suffering, pain, sorrow, hopelessness, envy, frustration, doubt. My Calvin has brought me joy, love, patience, empathy and the rare chance to witness a life that, if it weren't for his physical pain, is as close to nirvana as any human might hope to get.

I have learned from Calvin how trivial material desires can be, how petty some quarrels are, and I am getting better at understanding how little it matters that he can't play on the Little League team, can't speak two languages, can't excel in math and science, can't work a computer, can't even trick-or-treat. Daily, I hear stories of children—and parents of those children—who deal with seizures or hunger or abuse far more heinous than Calvin's circumstance. And I think how grateful I am that Calvin is simply warm and dry and safe and happy and living with a forever-evolving forty-nine year old mom who feels ten years younger and is ready to take on the world, if not for herself, then for her son.

photo by Michael Kolster