8.14.2017

white blight

For the past several years I have visited my son's school to tell his classmates a little bit about him and his epilepsy and explain why he can't talk, doesn't walk well, still wears diapers and behaves so unusually. Then, I open it up for questions, offering to answer absolutely anything the students might want to ask. At the end of each conversation I encourage the kids to be kind to Calvin and others like him. I tell them that Calvin is the best person I know because he doesn't have a mean bone in his body and, most of all, he doesn't discriminate. Then I broaden my appeal, asking the students to show the same kindness to others who may look, sound, dress, speak, behave, dwell or worship differently from themselves.

"Because inside we all have the same heart," I tell them, reminding them that none of us were born knowing hate. I make sure to look into each and every one of their solemn faces so they know I am talking to them.

When I first heard of the mob of white supremacists descending upon Charlottesville brandishing torches, some wearing paramilitary garb and carrying weapons to protest the removal of a confederate icon, I cringed. I read that one of the white supremacists deliberately slammed into a crowd of counter protesters with his car, killing a young woman and injuring scores of others. I read accounts of black men being beaten and bloodied with poles, of anti-fascists being pepper sprayed, and saw a woman being sucker punched in the crowd. The gang was chanting, "white lives matter," and "we will not be replaced," and "blood and soil!" The latter made me marvel at their blatant ignorance and the irony of their words considering this nation's soil was never theirs; men like them slaughtered this land's native people by the millions, raped their women and torched their villages, wrongfully claiming the blood-soaked and sacred soil as their own.

Inevitably, when I hear of these kinds of atrocities wreaked by the least oppressed demographic in the country—white men (and by the way, some of my best friends are white men)—I think about how the Nazi's, prior to coming for the Jews, systematically murdered people like my beloved son who were deemed a stain on the Aryan race. I also think about some of the folks I've gotten into debates with about white privilege. Over and over, I hear the same flabby platitudes and baseless bootstrap theories—that they've worked their asses off for everything they've achieved. It's not that they haven't worked hard, but their success wasn't achieved in a vacuum. Some can't seem to admit that the color of their skin has given them every advantage in the playbook: the benefits of white-sounding names on resumes; the benefit of not being discriminated against by teachers, employers, loan officers and landlords; the benefit of not being pulled over by cops just because of the color of their skin; the benefit of not being suspected of breaking into their own homes; the benefit of not being seen as a threat and a menace, unjustly maligned by society. While I can't know why they hate—and perhaps they don't even know—I deeply lament their willful ignorance and inability to comprehend what it means to be truly oppressed, and I resent their militant tactics, particularly because they're not oppressed.

Photos of the mob in Charlottesville reveal angry white men, some ratty old-timers hiding behind masks and shields and guns, others who look like your average frat boy, each one essentially threatening that their privileges—the same ones that most of them likely deny enjoying—best not be taken away. It would seem that they fear being treated like the oppressed masses—African Americans, Japanese Americans, Native Americans, immigrants, Latinos, non-Christians, LGBTQ people, women and other minorities—have been treated for centuries in this land of white male politicians and policies, banking industry, criminal "justice" system, law enforcement, white prosecutors and jurors and wardens. Had these angry thugs carrying torches and semiautomatic weapons provoking peaceful protesters in Charlottesville been Black? We can be sure things would have turned out differently. In this nation, white terrorists carrying weapons—yes, this is what terrorism can look like—strut our streets with impunity.

And, yes, The Ass in the Oval Office has fueled their flames and incited violence time and again.

No doubt in my mind, the weakest in this country are white supremacists. Insecure and small-minded bullies, they scapegoat others in a feeble effort to feel better about themselves. They are so incurious as to fear other without first knowing what other is, and to baselessly discriminate, something that my sweet, innocent son Calvin doesn't do, and wouldn't if he could utter a word.

twitter screen shot

8.10.2017

open invitation

I'm bracing myself for a three-and-a-half-week stint taking care of Calvin mostly by myself. Today is his last day of summer school which, though it's a measly three-hour day, four-day week, one-month session, is something that helps sustain my relative sanity in that it gives me time to walk the dog, tend to the garden and write a little bit before my high-maintenance child comes home on the bus at 11:30 a.m.

Michael is working diligently on photo submissions and on his next publication (he is the most prolific artist I know), and is already busy with administrative duties as head of the art department at the college. Even so, he helps me in the early mornings and evenings, and cooks all of our dinners. But the days are long, monotonous, not altogether fulfilling, and perhaps even a little lonely. I'll do my best to take Calvin places he knows like the grocer, the health food store, the donut shop, the coffee shop and, now, the gelato store, which pretty much define the physical parameters of my entire world. I wish he enjoyed and tolerated new places more than he does and would walk further without balking and dropping down. I've got to continue pushing his boundaries . . . and mine; we've got to grow.

But in case we are housebound due to seizures and/or malaise, this is an open invitation for friends to drop in for a cup of strong coffee or an early-evening cocktail and/or to join me and Calvin (in his stroller) while I walk the dog. I make a mean cup o' joe, and the garden—though the lawn looks and feels like straw—is lovely this time of year, especially in the morning and early evening around five p.m.


Please come on by.

Photo by Michael Kolster

8.03.2017

(ship)wrecked

When I spend long spates of entire days taking care of my thirteen-year-old son Calvin, I'm apt to become testy at times. Monotonous as his care is, my patience sometimes wears thin enduring his drool, his shit, his manic fits, his restlessness, his incessant sun-staring, his sticky hands tearing out my thinning hair, his penchant for putting his fingers all over my face and into my eyes and mouth, his desire to butt me when he presumably doesn't feel well, his wont to drop down refusing to walk when and where I need him to go.

Add to those hourly irritants stepping in Nellie's diarrhea then nearly missing her pile of barf in the yard on a morning after having had little to no sleep because of Calvin's grand mal. I feel wrecked . . . and trapped and going nowhere fast and neglected and bored and exhausted and dirty and resentful of what often times feels like an utter waste of two lives.

And then I watch this gripping op-doc (also shown below) which brings me to tears, slaps my ungratefulness in the face, and makes me wonder why we all don't behave like the benevolent man at the helm, why we don't embrace all humanity in its gorgeous and various forms.

I finish watching the short video, wipe my eyes and breathe deep, having been snapped out of my pitiful brooding. Though it's hot as blazes, I step outside and manage to tug Calvin along to Woody's house three doors down. Calvin rings Woody's doorbell (as always with much assistance), then sits in Woody's rocker and eats the usual piece of chocolate which we regularly pilfer from his candy jar. After a typical three-minute visit, Calvin insists on making his customary stop at Woody's garage to slap and bite its vinyl siding in the same, drool-stained spot he has for years.

As I tug Calvin back home, I hear a catbird singing its heart out, and see all sorts of other birds bobbing and flitting by. I get a glimpse of a salty, floppy-eared black lab poking its muzzle out the window of a passing car. I hear the unmistakable racket of polyurethane wheels on asphalt and turn to see a handsome, college-age skateboarder (I love skateboarders) in a floppy hat, rolled-up summer khakis, white tank and sneakers, and a billowing shirt sail by flashing me and Calvin a Pepsodent smile. Once home, our friends' daughter Zoe comes by to walk Nellie, just as her brother Felix, who is six weeks younger than Calvin, had done the day before. Later, I see sweet Nellie—the best dog in the world who we can afford to feed and keep and who brings us immeasurable love and levity—eating her own barf, and at first I get angry. But then I think about that video—those suffering men, women and children who've been pushed to the very brink of existence and, having left behind virtually everything they know and own to escape war or rape or famine or massacre, risking their lives and the lives of their children to find a better way—and I have to laugh at my pathetic self and my handsome wreck of a child when I remember how extraordinarily lucky we are, and that compared to most, we are swimming in the calmest of seas.


7.30.2017

wanted: über nurse

Wanted: In-home nurse who has his/her shit together. Part time. Must be punctual, reliable, professional, intuitive, confident, helpful, conscientious, receptive, strong, patient, understanding, focused, observant, vigilant, respectful, transparent and honest. Must like children and dogs and tolerate watchful mothers who work from home. Must be well versed in the art of mindfulness and not averse to monotony or dirty diapers. Preferably available to work some Saturdays and some evenings in a comfortable home surrounded by beautiful gardens with an adorable, affectionate, non-verbal, on-the-go, significantly disabled thirteen-year-old child with intractable epilepsy named Calvin.

Calvin with his uber-nurse, Beth

7.27.2017

in the woods

I had a good cry the other morning, better than I've had in a long time, perhaps too long. It felt like olden days, back when Calvin was an infant and I was just beginning to understand how messed up he was likely going to be, back when his developmental gap was widening by the minute, back when I'd cry in the woods on most days.

Hot tears rained down my face, kissed by the cool damp of the surrounding forest. I let them flow. I was alone, my face a grimacing, dripping mask, my breathing more like gasps. Nellie waited for me on a knoll in the shade where I sat myself on a root. She licked the tears from my face. I lingered there with Nellie, the birds and trees, and I let my tears dry in the wind.

On the stretch home I lamented Calvin's inability to do most anything without at least some assistance, and most things not at all. He can't independently walk, talk, trike, eat, drink, pee, shit, bathe, dress, undress, run, play, climb, sing, dance, brush his teeth, comb his hair, play with toys appropriately, cover himself up at night or get out of bed. I grieve the loss of what I thought parenthood had promised—seeing my child engage with peers, talking with him about the ways of the world and about what it means to be a good person, going with him to the movies or out to dinner or on a hike or to a concert or go fishing or swimming or biking or shopping or walking in the woods.

Some of my pain rained out when I wept, and more so during a brief visit with my neighbor and dear friend, Woody. In his eighty-five years he has experienced his share of grief and loss, and he held me as I shed a few more tears.

"It'll get better," he said. Then, as if he knew my stance on these matters, he corrected himself by adding, "it might not get better, but everything will be okay."

My day improved after a visit from a friend and a successful trip to the grocer, the gelato place and the health food store with Calvin. But my boy soon wilted, becoming pale and spacey, omens of worse things to come.

That night, after dining out with my homie Sarah, whose boy Jacob is quite like mine, Calvin had two grand mal seizures in the span of five hours. After the second one, at two-thirty in the morning, he writhed in agony for hours. Acetaminophen and acupressure did nothing to assuage his suffering, which I think may have been a mix of migraine and gastrointestinal pain. The event was identical to bouts he'd endured when we first began weaning his benzodiazepine over three years ago. I wondered if it was due to the abrupt withdrawal of vitamin B6, wondered if I'd given him too much THC, wondered if it was the benzo withdrawal, even though we paused it over a month ago. In my inability to do anything else to help, and short of the loathsome idea of taking him to the hospital, I kept telling him soon he'd feel better; experience told me so. Finally, at dawn, just as the birds began singing in the woods, Calvin settled and went to sleep for an hour.

Today I read on social media that coming off of vitamin B6 can look a lot like benzodiazepine withdrawal. Indeed, its sudden elimination may have caused Calvin's cannabis and/or his benzo blood levels to abruptly plummet, causing a kind of withdrawal all its own. I also understood that Calvin's frequent tachycardia may be due to vitamin B6 toxicity and/or the THC rescue med I used twice that night. Next seizure—and there will be one—I'm going to try using only frankincense to stop it and prevent more. I'm also going to extend the pause of his benzodiazepine wean, holding at 1.5 milligrams per day for now because he's had eight grand mal seizures in the past thirty days, which is nearly double his monthly average. My hope is that once his B6 levels off the fits will calm down, and though I doubt they'll get markedly better anytime soon, perhaps everything will be okay, and maybe some day he'll step into the woods with me.

Photo by Michael Kolster

7.24.2017

love and gratitude

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

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

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

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

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

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

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

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

And Calvin made it through the night.

7.22.2017

conundrum

Two weeks have passed since we discovered Calvin's toxic blood level of vitamin B6 and eliminated it from his regimen. I felt its removal was warranted, though I wonder if perhaps its abrupt withdrawal has messed with Calvin's benzodiazepine and/or cannabis levels seeing that they all use the liver's cytochrome P450 to metabolize.

In the removal's wake, Calvin has been more lethargic than usual. Perhaps, as his white blood cell count indicated, he was/is suffering from some sort of virus. He has improved slightly with each passing day, and I haven't seen a seizure in a week, but his stubbornness, as manifested in his refusal to walk where we want him to, and his tendency to want to drop down in those moments—often in the middle of a crosswalk—has made taking care of him exasperating; there are few places we can take him where he is willing to walk more than a couple of yards, though he is fully capable of doing so (we know this because he likely walks virtual miles while at school).

We stay at home more than usual, it seems, and even getting Calvin to stroll in the garden with me lately—a daily routine—has proved challenging. I feel our already small world closing in on us, and the places we can take him are limited to the grocery store, the health food store, the donut shop, the coffee shop and Woody's house three doors down. Often, he won't walk for more than a few steps before attempting to drop down, and I have to yank him along like a mule since he is getting too big to carry for any distance, in addition to my refusal to enable this behavior or play into his pranks.

Complicating an appropriate response to his behavior is that I never really know if his stubbornness is like that of a toddler exhibiting his will, or if it is because his bones or muscles in his hips or thighs or knees or shins or ankles or feet hurt or are numb, or if he is feeling dizzy or headachy or sickly, or is experiencing the effects of benzodiazepine withdrawal, or if a seizure is coming. And so I find myself swinging from patience to intense aggravation, and I feel the scowl carving lines into my brow.

In passing, friends ask us the customary question about our plans for summer.

"We can't really go anywhere with Calvin," I say, mostly not bothering to explain how we'd have no safe place for Calvin to sleep and great difficulty doing any activity with a non-compliant, non-verbal, incontinent, agitated, thirteen-year-old boy save strapping him into a thirty-five pound adaptive stroller which has major limitations and aggravations of its own.

And so, we find ourselves in a decade-long conundrum: spending most of our time at home moving about the house from bed to jumper to bathroom shutters and back again. I try, though not hard enough, to get us both out of our safe yet monotonous and psychologically ruinous comfort zone, which is the only way we'll both continue to grow.

7.15.2017

enigmas

The sound my son makes when his brain launches into a grand mal seizure is terrifying—blood-curdling really. It's a shriek and a scream and a howl and a moan all at once, and this morning's was one of the worst I've heard.

Since one-thirty a.m. I'd been responding to my boy of responding kisses, when he first woke to a partial seizure, his lips pale and dusky from minutes of the shallowest breathing. I squirted a tiny bit of homemade THC tincture under his tongue and waited, hoping, for the seizure to stop. When it was over, I crawled in bed next to him—yet again—exhausted from too many days and weeks and months and years of the chronic sleep deprivation epilepsy makes certain. When Calvin woke an hour later, I gave him his benzodiazepine early, aiming to thwart what is often the inevitability of a second, more serious fit. When he woke again at four-thirty, I gave him his morning Keppra early, plus an extra half tablet for added protection. At that point Michael switched beds with me so I might get some better rest having dealt with the sleepless nights of three grand mal seizures within the span of five days.

Despite my best efforts, Calvin woke to a grand mal seizure at six-twenty, his screech piercing the quiet as if he were being tortured. I ran to his side, grabbing the vial of rectal Valium I'd set out in preparation. Michael unfastened Calvin's diaper and, as my boy spasmed, I inserted the vial's tip into his rectum and pushed the plunger dispensing 7.5 milligrams of mind-numbing gel into his body. His convulsions began slowing until his body became limp, his eyes half-mast, dull and fading.

Back in bed with him, I listened to the birds chirping as the world around us awakened. Before drifting back to sleep, my arms around my son, I worried about the thirsty trees and shrubs in the back garden. At this hour I imagine I can hear everything—birds flitting and splashing in the stone and ceramic baths, squirrels scampering up trees, bees feasting on flowers, ants marching up rough, parched bark, pollen falling on the leaves . . . Calvin's heart beating. It's during this quality of sublime quiet, if not for angst, that I can best fall to sleep.

Today my child is pale and listless, his body having been riddled by violent spasms, his brain bathed in too many potent elixirs. Perhaps he's sick, or going through a growth spurt, or suffering a wave of benzodiazepine withdrawal symptoms, or maybe adjusting to the recent and abrupt elimination of toxic levels of vitamin B6. In any case, my non-verbal, legally blind, incontinent boy and his malady are enigmas. They leave me, in the most serene of moments—which in this advancing world seem to be retreating—to worry and wonder if we will ever enjoy liberation.

Calvin and his Gpa

7.13.2017

missing pieces

With Nellie on the leash I looked over my shoulder to see a dark sky rolling in from the north. Being from Seattle I know when rain is coming and can usually smell it. We walked along at a good clip, my rubber boots whapping my shins with each step.

At the fields I let Nellie off leash where she ran and dove and rolled in a lawn beginning to wither from too many days of hot weather. The leaves of trees flanking the field turned their silvery backs to the wind. I closed my eyes to better hear the rush of it and to feel its fingers caressing my skin. Finally, I kicked off my boots to stroll barefoot in the grass, something a foot doctor once told my twelve-year-old self I'd never be able to do.

From an open door I heard the voices of children singing songs from the seventies. A couple-hundred kids were seated in bleachers following along with a small band playing covers of Proud Mary and other pieces by artists including Helen Reddy and The Beatles. I walked over to the field house and peered in. Several young camp counselors in neon green tees were monitoring the children and cheering them on. I asked one of them how the kids knew the words in the absence of any booklets or projected lyrics. She explained that the lyrics had been simply taught by the band and then practiced daily.

"Amazing brains," I said of the kids' astounding capacity to learn and memorize so quickly. Then I thought about Calvin's frail brain and its missing pieces.

Suddenly, the girl cautioned me just as a throng of seven and eight year olds made a mad dash for the door. I had to shoo Nellie from the stampede and away from the table of snacks the kids were headed for. Above us a menacing sky opened up and a rush of emotion rained over me seeing the children gleefully wield popsicles and bananas, watching them laugh and skip and jump and run. I wept openly, grieving Calvin and all that he is missing, albeit obliviously, in and of the world.

Photo by Michael Kolster

7.09.2017

toxic heartache

As I begin writing this I am weeping—weeping for my child who I may have, in some sense, unwittingly poisoned with P5P, aka coenzymated vitamin B6.

Late last week, a nurse phoned to give me some results of a routine blood draw Calvin had done. He had given a total of seven or so vials of blood to test his thyroid function plus a customary metabolic panel, complete blood count, manganese, magnesium, copper, ferritin, D and B vitamins. Initial results came back normal with the exception of a low white blood cell count, indicating he might have a virus contributing to his recent spate of grand mal seizures.

Friday, however, she called back with some alarming results: Calvin's vitamin B6, a test which I'd requested for the first time and as somewhat of a fluke, was 144. Because the reference range for a child his age is a mere 3 to 35, the covering pediatrician suggested I immediately discontinue Calvin's B6 supplement. The nurse went on to inform me that vitamin B6 toxicity can result in things like flushing, tachycardia (rapid heart beat) and headache, all of which I've witnessed recurrently in Calvin.

For at least a year and a half I've been giving Calvin the B6 supplement, which was recommended to me by a functional medicine specialist, and signed off, reluctantly, by his pediatrician. The supplement, if I remember correctly, was meant to boost Calvin's immune system and perhaps to facilitate the production of GABA, which Calvin's brain is craving during his protracted benzodiazepine withdrawal. I was advised to initiate him on 50 milligrams per day, then at some point later I increased it to 100 milligrams daily when Calvin's seizures worsened. No one advised me to check his B6 blood level so, foolishly, I never had; I should have known better. Somehow, for whatever reason and perhaps subconsciously, this time I did.

After hanging up the phone, a million thoughts went through my head:

could his tachycardia and flushing be due to B6 rather than from seizures? could his tachycardia trigger seizures? could his tachycardia weaken his heart? has he had a persistent headache all these years due to B6 toxicity? are the symptoms i usually attribute to benzodiazepine withdrawal actually due to B6 toxicity? why didn't i research B6, its dose limits, its contraindications, its toxic side effects—like i have for years for all of his other meds—before giving it to Calvin? how could i be so reckless?

Just before writing this I went online to research B6 toxicity. I learned that Calvin's dose, according to his age, should be roughly one milligram per day; he was getting fifty to one-hundred times that for well over a year! I also learned that vitamin B6 toxicity can result in abnormal heart rhythms, decreased muscle tone, drowsiness or sedation, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, stomach discomfort or pain, sun sensitivity, and vomiting. 

I wondered if some of Calvin's finger snapping, and leg and arm rubbing are due to B6 toxicity. I went on to read that B6 toxicity can cause one to have muscle pain or trouble with walking, can interfere with one's proprioception, and can induce seizures. Is this why Calvin is stubborn and so often wants to drop down while walking? It can also interfere with the way that the body processes certain herbs and supplements which utilize the liver's cytochrome P450 enzyme system (e.g. cannabis, as does the benzodiazepine clobazam) and that, as a result, the levels of these may be altered in the blood or may alter the effects that they have on the body's P450 system. Having gained knowledge of cytochrome P450 during my research on cannabis over four years ago, had I investigated B6, I would have easily come across these factors—details that the functional medicine specialist and the pediatrician likely weren't aware of—and, with little doubt, I would have objected to giving the supplement to Calvin.

Since beginning this post, my tears have dried, having taken Calvin with me for a morning stroll through the garden. He was mostly compliant and seemed happy to be outdoors on this sunny morning, the birds chirping and flitting around us, roses and day lilies flaunting their brilliance. I sit here now wondering—hoping—that the discontinuation of Calvin's B6 supplement will result in the disappearance of any pain, tingling or weakness he's been suffering, and perhaps even result in the decrease of seizures. I also wonder how its absence will affect the levels of cannabis and benzodiazepine in his blood and how that might present in terms of seizure control, behavior and other side effects. It may prove impossible to know for certain.

My main fear and cause for great heartache, however, is that I've poisoned my child to the extent that the effects of B6 toxicity might be irreversible. He suffers so very much from one moment to the next and it pains me to think—in the absence of most of parenthood's joys that were spirited away two weeks before Calvin's birth along with much of the white matter in his brain—that the child I do have has been further damaged by the substances we've given him in some blind attempt to make things better.

Glimpse of a good moment: Calvin with Gma Kolster and Abby

7.06.2017

calvin at home

To see this sublime photo series by my husband, Michael Koltster, click here, then scroll right.

Photo by Michael Kolster

7.05.2017

the good, the bad and the ugly

the good:

celebrations with smart, funny, worldly people. calvin. phlebotomists who make house calls (one-stick-wonder lynn, and arthur, specifically). truth. naps with my boy. nellie. sleep. husband. shaomai burgers. empathy. rambling gardens. guacamole. walking barefoot in a grassy field. backyard fires. philanthropy. breezes. neighbors. birdies. flowers. sunshine. rain.

the bad:

seizures. the ass in the oval office. the ass's lackeys. their primitive, small-minded, exclusionary, hurtful and oppressive policies. manipulators. blood draws. headaches. viruses. sleep deprivation. white supremacy. liars. tax dodgers. benzodiazepines and their withdrawal. drunken students (presumably) hollering, and peeing (again), in the dark near our garden. tyrants. deceit. misogyny. poverty. war.

the ugly:

sleep-deprived me. the ass in the oval office. greed. excess. fear. drug-induced mania and other side effects. impatient me. white supremacists. the ass's lackeys. self-aggrandizement. angry me. the treatment, by some, of immigrants and refugees. racism. bigots. religious zealots and hypocrites. gawkers. bullies. diehards. whiners. fraudsters. jerks. apathy.

Photo by Michael Kolster

7.02.2017

how it goes

Calvin's brain squeezed off another grand mal seizure at ten p.m. on the thirtieth of June, bringing last month's total of grand mals to four, in addition to sixteen partials. Just last night he had two more—one at eleven p.m. and, despite having given him a bit of THC rescue med, another two hours later. After the second one, I was fretting about the Diastat rectal Valium which we gave him again, fearing if we use it too often he'll get addicted and it might lose its effectiveness. Dread washes over me when I think of that because it is not hard to imagine a seizure or cluster of them that won't stop, followed by a trip to the ER and ultimately, if no traditional rescue meds work, a medically induced coma. Sometimes, with refractory epilepsy, that's how it goes.

I'm not sure where to go from here. We are so close to eliminating Calvin's benzodiazepine all together (1.5 mgs per day down from a high of 35) and yet so far away (six to nine months or more to go). And though his grand mals still average just over four per month, his partial seizures during this benzo withdrawal, which is complicated by puberty, have for the most part gradually increased. My hope is that once we get him off of the benzo his seizure activity will eventually calm down. In the meantime, however, it appears we may have to wrestle with the reality of him suffering more.

While in bed with him I mulled over options in my head. I'll bring Calvin to the doctor to get weighed to see if he might have outgrown his Keppra dose. We'll also get some blood work done. I don't want to start him on a new pharmaceutical until he is off of the benzo, if at all. I'm loathe to increase his Keppra since he is already on a very high dose. He is taking no small amount of THCA cannabis oil, and though we could try increasing his CBD cannabis oil, it is expensive and not covered by insurance. I could try adding my homemade THC tincture to his bedtime regimen, but it is made from a hybrid strain, rather than a calming indica, and so not necessarily the best. Plus we hesitate to keep tossing more medication at our boy, and though cannabis is a plant, it is still a powerful drug.

This morning I had a thought: switch his Haleigh's Hope 20:1 CBD:THC oil to the 15:1 ratio; I've heard some children do better with slightly more THC in the mix, and it wouldn't cost us any more.

So, we'll hold off on the next reduction of Calvin's benzo, keep him at the same dose of Keppra to limit variables and try the lower ratio CBD oil (same dose) and see how it goes.

Photo by Michael Kolster

6.30.2017

points of light

There's some consolation to the fading and dropping of rhododendron blossoms which adorned the garden with magnificent splashes of color in May and June. Just when the landscape has reverted to a dark sea of emerald and jade, the fleshy faces of peonies and roses become points of light, especially on gray rainy days when the cloud cover makes everything glow.

Calvin is ending June having had only three grand mals, though sadly his number of partial seizures spiked to sixteen. I find myself conflicted, feeling gratitude for his relatively low number of grand mals these past two months, and worry over his increase in partials. To further complicate things, there is really no way of knowing if the increase in partial seizures is due to puberty, the reduction in his benzodiazepine or some other hidden mechanism. How to better control them is another dilemma; the intermittent addition of THC rescue med has seemed to help thwart his grand mals to some extent and keep large clusters from developing, though it is difficult to know for sure.

But like points of light in the otherwise dark landscape of living with a child who has chronic epilepsy, I remembered a conversation Michael and I had over four years ago. At that time, Calvin was having fewer seizures yet suffering incredibly bad behavioral and sleep problems due to the high doses of three anti epileptic pharmaceutical drugs. His bouts of mania—prolonged and occurring often—were so emotionally upsetting that I was in tears nearly every day wondering how I was going to make it through to the next without completely breaking down. In other words, Calvin's hysteria caused me far more angst than did his seizures. I hardly recognized my child.

In that conversation, Michael and I decided it might be better, perhaps even for Calvin, if he suffered as many as one seizure a day if it meant that he could be more calm and content and enjoy an improved quality of life; that's how bad he was. A few months later, Calvin was completely off of Banzel, then we started him on a homemade THCA oil. Soon after, we began weaning him from his absurdly high dose of benzodiazepine, clobazam, aka Onfi, which my gut and my research into the drug told me was causing his lunacy, restlessness and insomnia. The points of light I am referring to are the bright moments, amid a dark terrain of increased partial seizures, of a much quieter, calmer child. His shrieking is now more the exception instead of the rule. He rarely—as compared with before—flails, and almost never becomes the raving, grimacing, howling monster we used to know. His awareness of the world, and his interaction with it, seems to be improving. His countenance is like a peony, a flower I'd describe as staid and supple more so than jolly, but content to blossom in sun and rain and shade.

6.25.2017

bat shit crazy

For an hour and a half straddling midnight—Michael several hours north—my son sat up in his bed and banged his head on its padded side every few minutes. When he did, wearily and perturbed, I got myself up (perhaps as many as two dozen times) to lay him back down and cover him up. Each time I fell back in bed, Nellie came over so that I'd pat her on the head. Exasperated, I finally checked and changed Calvin's diaper, took his temp which was unusually low considering how warm his skin felt, then crawled in with him.

The past three days Calvin has been bat shit crazy much of the time—shrieking and hollering, flailing, manic in the bath, ridiculously restless, crying at times for no apparent reason. As I write this I understand that I, too, have been a lunatic of sorts—hollering and shrieking at times in response to his maddening behavior, his agitation, his immense stubbornness to do what or go where I want him to. His obstinance makes it difficult and sometimes impossible to pass a half-block radius when on foot. He has a mini tantrum every time I try to take him to the health food store or to the donut shop for a cruller and a cup a joe, even though he's been to these places several times before.

I wonder if, when he is free of his benzodiazepine, he'll evolve to a place of calm and compliancy. I wish I knew what impels him to drop down. Is he fatigued? Do his legs or knees or feet hurt? Is he dizzy? Weak? Confused? Anxious? I really have no idea.

Three years ago I wrote a post called dear dr. rx. In it I describe my frustration with neurologists' apparent cavalier way of prescribing benzodiazepines. Gradually, the more I read about adults' experience of the terrors of benzodiazepines and their withdrawal, the more I'm convinced of physicians' ignorance of their side effects, dangers, and proper withdrawal, and the more my frustration grows into outrage. We've been weaning Calvin's benzodiazepine clobazam, aka Onfi—which was prescribed, in part, to help him get off of another benzodiazepine, clonazepam, aka Klonopin—for over three years; we've got nine or more months to go until he's rid of it. I've little doubt benzos and their withdrawal are what have stunted Calvin's learning and cause his mood swings, his malaise and misery. I've no idea who my kid would be without having taken them for nine of his thirteen most formative years. Suffice to say I believe that very child has been stolen from me, and I'll never get to know him or see what he might have become.

Having said that, I have heard benzos work for some without causing habituation, and I am aware that they might be one of few options for some of the most serious epilepsy cases.

This morning, after having given Calvin a dose of THC around midnight when he was so restless, he woke to a grand mal at six. I've little doubt that if I'd repeated a dose of THC around two or three he may not have had the seizure at all. He's slowly getting back to baseline as the morning wanes. Michael is on his way home. Calvin has only 1.5 mgs of clobazam to rid himself of. The sun is shining. The peonies are fragrant and in full bloom. Friends are stopping in to bring me groceries, sit and sip coffee with me and walk the dog. The kid is calm and the bat shit crazies in the seizure's wake will hopefully take a hiatus for a while.

Photo by Michael Kolster

6.23.2017

good fortune

Though I'm known to kvetch about this and that, I try to be mindful of my fortunes: dear friends, an amazing community, a loving husband, cook and provider, a cozy home, a sweet kid, and the ability to celebrate often without having to worry about where I'm going to sleep at night or where my next meal will come from. Aside from Calvin's poor health and disabilities, his seizures, the treatments and their side effects, and his active benzodiazepine withdrawal, one could characterize my other concerns as first-world problems.

So, perhaps the passing of the summer solstice, which I spent at my friend Lauren's house wearing a shared garland, drinking mojitos and eating popcorn aside a crackling fire, seeing old friends and meeting new ones, can be for me a kind of reboot. Perhaps I can emerge from a place of slight guardedness and cynicism to one more welcoming of my changing surroundings, which is not to say that I'll surrender my passions, political or otherwise.

And, as I remind myself to be grateful, I'm cognizant that Calvin has had only two grand mals thus far in June, which is notable considering he had as few in May—a record low since before starting cannabis and weaning his benzodiazepine over three years ago. In return for that gift of sorts, I knock on wood, clasp my hands and bow my head in recognition of my good fortune.

6.19.2017

pure serenity

Again, four-thirty came too early on Sunday, especially having not fallen into bed until midnight. I had only half expected Calvin's grand mal, and though I was disappointed it came just eight days after the last, I was grateful that it waited until nearly dawn. As he seized, Michael and I lifted the netting covering his bed, unlatched and lowered its safety panel then protected his head from banging on the wooden lip of the bed. I grabbed the vial of lavender oil and rubbed it on the bottoms of Calvin's feet, then held it under his nose so that he could get a good whiff of linalool, a terpene thought to be effective in thwarting seizures. When it was over, I gave him his morning dose of benzodiazepine early, then crawled in with him as he drifted in and out of sleep for the next hour.

Lying in bed next to him, our windows open to the cool, humid air, I listened to the birds awakening. This time I think I heard a thrush, a catbird and a pileated woodpecker. Other than the birds, and Calvin's shallow breathing, my world was silent. The birdsongs have a strange way of echoing (or is it dampening?) in the morning fog, which I imagined lurking across the meadow that abuts our back yard. Similar to early evening, dawn is a gloriously serene time of day in the garden. Sometimes it is so quiet, especially in the wake of a heavy rain, that I can hear the river rushing over the falls a mile or more away. In the silence, I like to imagine the wing-flutter of butterflies, bees and dragonflies, or the sound of moist earth giving way to spears and sprouts and churning worms in the organic garden in the field behind our home.

The regrettable situation we find ourselves in—the seizures Calvin has, the worry over impending ones, clusters of them and trips to the ER, the shrieking he does in the days leading up to a grand mal, the relentless years of sleepless nights, the grief over losing what we thought parenthood might promise, the despair harbored knowing we will never be grandparents, the tension felt over every injury or close call, the resentment of folks who don't seem to or can't understand, the feeling of being imprisoned in time, space and circumstance—causes me, among other things, sometimes to unwittingly clench my teeth at night. I wake these days with an aching jaw, having pressed so hard as if unable to let go, like a hound dog with a bloody bone.

Later, like on most mornings before the neighborhood is awake and passersby in the back field begin to linger, come and go, I slipped into my green rubber boots and took my coffee outside. I strolled around the garden in the same pattern that I make with Calvin, over dewy grass and moss and stone, observing every shrub, bud and blossom, smelling fragrant ones, pulling weeds and errant clover. I gazed beyond our yard to the idyllic field which the college now owns, with its quaint antique schoolhouse, feeling immense gratitude for its openness and pure serenity. I hope with all my heart that promises are kept and that it can remain that way; it is so beautiful and calm in its simplicity. Sometimes it feels as though my secret garden is the only quiet space I know, the only place where my mind can be at ease, my body relaxed, my heart calm.

6.14.2017

seven days running

I hope having partial seizures every morning is not going to be Calvin's—our—new normal. Seven days running now. I can't recall that ever happening since Calvin was first diagnosed with epilepsy when he was two years old. Somehow, though, the kid takes a licking and keeps on ticking. Extraordinary child.

Calvin two years ago looking much the same as he has this past week.

6.12.2017

birdie

In this part of the country as we near the summer solstice, it starts getting light as early as four in the morning. With the windows open and my eyes closed, I can hear the birds begin their glorious racket. At times they sound far off, a distant echo, and at others I can almost guess in which nearby tree they're perched.

Calvin has had seizures five days in a row, though no more than one or two a day and only one grand mal. As a result I've been awake at least two nights for hours before the dawn. The fact that his seizures were provoked by a virus and a low-grade fever (and, perhaps, the full moon as it hovered overhead just as he had his grand mal) is some consolation to me, as opposed to being purely spontaneous. It seems as though the homemade THC rescue med is working well to stop his partial seizures while thwarting them for the remainder of the day. Sadly, it hasn't always prevented his grand mals.

Today, it is nearly ninety degrees outside, just slightly cooler than yesterday, so we are both sick indoors trying to stay cool and get well. I sit on Calvin's changing table as he rests and naps, bites his toes and plays with his toys in his nest of a bed. From an upstairs window I see what I think is a baby finch splashing in one of our birdbaths, flapping its wings and ruffling its feathers. I think of how much Calvin reminds me of a little bird: his small frame and quick heartbeat, the way he opens his mouth for me to feed him and, if he is very hungry, the way he bangs the table or claps his hands for more. The birdlike chirps and coos he often makes when he's most content remind me of some sort of feathered friend, as well as how he splashes in the bath, just like that finch.

And, like a baby birdie does with its mother, when I crawl into bed with him, he curls up under my wing into a ball smaller than you might imagine. As he rests his head on my chest, I can feel his little heart a-flutter.

6.09.2017

snafu

The acronym stands for situation normal: all fucked up, and it is an apt way to describe life with Calvin, my thirteen-year-old severely disabled, legally blind, non-verbal, incontinent, autistic boy who can't do much of anything by himself and who suffers from medically refractory epilepsy, which is to say that despite pumping him with loads of pharmaceutical drugs, he still endures seizures of various kinds at various times and with varying intensity. Oh, and he is also coping with a ridiculously protracted and brutal benzodiazepine withdrawal and its heinous side effects, which compounds any misery he already bears.

Thankfully, however, cannabis—three kinds of which we use to thwart those seizures—has seemed to help: a homemade THCA oil, a CBD oil, plus a homemade THC rescue tincture.

Today is day ten since Calvin's last grand mal seizure, which began as a partial complex seizure and evolved into a full-on convulsive tonic-clonic. Yesterday and today he has suffered similar complex partial seizures lasting upwards of three or four minutes during which he breathes so shallowly it appears as if he has stopped breathing altogether, which is common though still unsettling. But both seizures stopped within about thirty seconds of giving him a squirt of THC tincture inside his bottom lip and rubbing it into his gums.

This is a good time to mention that I'm ever grateful for Calvin's teacher and ed techs who know Calvin well enough to contact me when he doesn't seem well. They've made some very good calls and have saved Calvin from having any serious seizures while at school. So, too, are we lucky to have a nurse who rarely, if ever, misses work, who loves Calvin and with whom I can leave him when I must go out to do errands or walk the dog or when I want to garden or look in on Woody.

And I would be very remiss to neglect mentioning what an awesome husband I have who is easy on the eyes and does the grocery shopping on days like today and who cooks dinner every night—literally—and who affords me the ability to stay at home, because I'd never be able to hold down a job or a career out of the home even if I wanted to, what with a son who has missed at least seven weeks of school this year.

But even for all of the wonderful things we have at our fingertips including our cozy abode, our kind, loving and generous friends, Michael's steady and absurdly amazing job in this beautiful state of Maine, our situation—our normal—is still seriously fucked up.

6.04.2017

broken flowers

This weekend, I spent time with a friend while she grieved the small and the not-so-small of life—the personal, the political, the theoretical dreads and disappointments we all face as human beings. While weeping, she apologized, describing how she thought her despair was somehow unbecoming. I told her, no, that mourning is one of life's beautiful expressions. Perhaps it was because of the time I'd spent with flowers that morning—the vibrant pinkish rhododendron blossoms fading to antique white with spoiling ruffled golden edges, the tulips held in a glass vase, their stems arching and bowing, their petals relaxed and splayed revealing delicate stamen before surrendering them to the earth, withered and crepey—that made me think that our response to life's tragedies, like a flower's gorgeous death, can be beautiful, too.

Often, I surrender to my deepest sorrow at times unexpected, like when I closed and latched the French doors this afternoon before I realized Calvin's pinkie finger was caught in the hinge. He was silent at first, in his excruciation, then wailed and writhed in so much pain I could not console him. When he finally calmed, I wept, sorry for having hurt him, sorry for all the pain he must suffer on a daily basis—brain, guts, bones—which we can't control, sorry for the gorgeous mess that is our life together. We are like broken flowers, exquisite, flawed, weeping.

As I finished this up, Michael and I heard a tremendous crack and felt the ground shake with a thump. We peered out trying to identify the source. Next door, a gigantic limb from a one-hundred-year-old maple had fallen, taking down power lines with it, having missed grazing our house by twenty feet, and now leaning into a neighboring spruce. The sound of splitting bark and flesh is like no other. The sensation of thousands of pounds of bough pounding earth felt in my heart like the bass at a rave. It is beautiful; it is awful. It is all the glorious stuff of life.

5.30.2017

boy of responding kisses

Yesterday, Memorial Day, the day we honor soldiers who died at war, I held my son as he seized. Because it was his fourth fit in little over an hour (thankfully, the previous ones were not grand mals), and because it was midday, and because it was a most violent one, I gave him rectal Valium. At his side, I watched and felt him convulse and wretch and gasp for air until the benzodiazepine finally bathed his brain and the spasms disappeared. When it was over, his body limp and his eyes half-mast, I gently doffed his vomit-sopped shirt and put a new one on. Then, I cradled him and lifted him into bed—sixty pounds of his dead weight in my arms.

Once in bed, as I covered Calvin with his blanket, carefully tucking it in behind his back and under his feet, I thought about Walt Whitman wrapping and burying his cold soldier son on the battlefield. I wondered what it must have been like for him to know that his son—"boy of responding kisses"—was gone.

Though it is only Calvin's fourth or fifth daytime grand mal in over one-thousand days (they mostly occur at night since reaching a therapeutic dose of THCA cannabis oil), I was still disheartened. But then I realized that in May thus far, Calvin has suffered only two grand mals; the last time he had so few in one month was over three years ago when he was on a ridiculously high dose of the benzodiazepine, clobazam, which we've been weaning for nearly as long.

The road ahead is still a long one; we've got at least seven more months of weaning the benzodiazepine before he's completely off. But if Calvin can have one of his "best" months with regard to numbers of grand mals in the face of an active withdrawal and on ninety-seven percent less clobazam, I should try to rest at ease a little, and focus simply on my boy of such responding kisses.

Photo by Mary Scarpone

5.29.2017

vigil strange I kept on the field one night

Every Memorial Day, I post this passage by Walt Whitman for its beauty and poignancy. While my mind is focused on veterans of war who have died on the battlefields, the images this writing provokes give me pause to remember and honor all of the children my friends and loved ones have lost. This goes out to their parents, as well as those lost in war:
Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

5.26.2017

knock on wood

Just a quick note to catch you up on things: spring has finally sprung in Maine; Calvin is on day nine since his last grand mal; though he projectile vomited on me while Michael was in Boston for the night, I survived; and—most notably—Calvin has had only one grand mal seizure so far this month (perhaps due in part to intermittent nighttime THC?). Knock on wood for us, okay?

5.23.2017

cityscapes

Sunday night I returned home from a long weekend in New York, having stayed with extended family and some longtime friends. My time in the city was energizing. It began with a train ride from Newark where I met a handsome young Venezuelan couple from Orlando. Upon emerging from Penn Station, the three of us promptly got lost as the mercury approached one-hundred degrees. But we were all so excited that the heat didn't matter; we simply feasted on throngs of humanity, buzzing traffic, screaming sky scrapers and the various aromas, both putrid and sweet, that make Manhattan what it is.

On my first evening, I languished on the steps of a Brooklyn brownstone with Michael's cousin, Lance and his sweet pup, Stella. We drank rosé and, as dusk fell, his lovely wife Valerie pulled up on her bicycle. Joined by their college-age son Merlin, we dined inside on a homemade eggplant Parmesan, shooting the shit, catching up on family and on recent events. I slept in an extra room on a twin bed, the cool breeze of a fan drifting over my hips.

The next morning, on the way to see my friends Sofie and Steve, I had the pleasure of embracing—literally—Demetrius and Cory, a couple of handsome Jehovah's Witnesses who asked me to attend their bible study. Standing in the dappled shade of a sidewalk tree, I described to them my belief in pantheism—that God is Nature and Nature is God. I explained my trust in the interconnectedness of things, and then told them a little about Calvin. They no doubt agreed with the manifestation of God in nature, and as we parted they lovingly said they'd hold my son in their hearts.

Later, I sat eating an apple in the front seat of a taxi talking to my Middle Eastern driver about the unseasonably hot weather, about the goodness of fruit, and about bad passengers and worse drivers. He offered me one of his bananas to eat, then discarded my core in a brown plastic bag that he tied off carefully into a loose knot.

My friend Antoinette saw me wave goodbye to my driver then, with the sun at our backs and the wind in our faces, she and I sauntered across the Brooklyn bridge, soaking in the cityscape. Once we reached Manhattan, we paid our respects at Ground Zero, meditating at the edge of its magnificent reflecting pools with 2,606 names carved into their steely frames, the massive glass Freedom Tower watching over them like a parent.

We eventually made our way to Antoinette's Tribeca restaurant, Petrarcha, where her husband, Leo—pure Italian, once from the motherland—is the owner-chef extraordinaire. Leo brought me a glass of rosé and some fresh buffalo mozzarella with speck (smoked prosciutto) followed by an outrageous gnocchi, flourless chocolate mousse cake and the perfect cappuccino with a heart-shaped foam lid, then wouldn't let me pay the bill or the tip. Antoinette and I relaxed in our corner booth, begging intermittent visits from Leo, and whiled away the afternoon as the city and its glorious melting pot of people strolled by outside the glass.

On the long subway return to Brooklyn that evening, I sat next to a neatly dressed bespectacled woman, perhaps younger than I, with a glinting gold crescent cap on one tooth. She said she'd always lived in Brooklyn and I replied that I had come from Maine. We riffed about the weather, chewed our gum (we both had the same brand and flavor in our purses) and talked about children—mine and hers. I mentioned my blog, and before my stop, she asked me to giver her the web address. Using her pen and pad, I gave her my email too, then learned her name—Jacquline Williams. I've tried to find her on social media, but haven't had any luck thus far. We gave each other a squeeze before I exited the train. Jackie, if you are out there, please friend me.

Though I was still full from lunch, that night I managed to snarf one fried fish taco and a margarita on the rocks at a local bar in Brooklyn. Steve, Sofie (a friend from my days at Levi Strauss) and their nine-year-old son Dash—who, I should mention, is a pretty great kid and about Calvin's size—shared a picnic table with another young family. As we dined, I surveyed the happy patrons eating their spicy tacos and drinking beers. I nearly wept at how folks of so many races and ethnicities mingled in such harmony.

On Saturday, I took in a Broadway show called Natasha, Pierre and the Great Comet of 1812, which has been nominated for a dozen or so Tony's. Jaimie, who is a backstage dresser and another acquaintance from my days at Levi's, got me a ticket. The set and lighting were sumptuous and ingeniously designed. The show, its score and performers gave me chills and brought me to tears several times. Afterward, I grabbed a drink with Jaimie and we got caught up on the last twenty years. She got weepy telling me how cute she thinks Calvin is (she follows my blog closely) and so I held her hand. It was as if we'd been dear friends all these years.

On my last day, Sofie and I woke to strong coffee and breakfast burritos lovingly made by her husband. Steve, Dash and I watched an incredible Anime, Barefoot Genabout the bombing of Hiroshima, the selfsame title of the graphic novel their son Dash is reading. Watching the scene where the pilot releases the bomb that demolishes and burns the city and its inhabitants, I couldn't help but think of "our" current reckless president.

Shortly thereafter I said my goodbyes to the boys, then set off with Sofie for one last day on the town. We headed northeast to The Met to devour two splendid exhibitions: Comme des Garcons and Irving Penn. I ended my New York visit with a burger and malt at the Shake Shack before hugging Sofie goodbye, jumping on the train and heading back to the airport where, again, I visited with a kind stranger who ended up feeling like a friend. As the plane lifted off, I watched the New York cityscape disappear behind a vast sea of clouds. I was sad to say so long to the spectacular city, though eager to get back to Michael, Calvin, Nellie and my garden, and heartened in knowing I'll return sometime again.

Click on any photo to enlarge.

5.19.2017

imperfect world

In a perfect world, I’d be the span of a continent away this weekend celebrating my induction, along with a dozen or so of my fellow teammates, into my university’s athletic Hall of Fame. In 1986, the year they voted me team captain, my college swim team won the NAIA national championship.

In a perfect world, my husband and my son might have joined me on the uneventful, albeit long, cross-country plane ride plus a drive east from Seattle through the Cascade range to the arid wheat fields and pastures of central Washington state. However, a month or so ago, when I understood—and lamented—that I couldn’t bare to leave my oft-seizing boy to travel three-thousand miles and be gone no less than five days and at least a full day of travel away, I decided not to go.

But when Michael saw my disappointment, and since he'd cleared his calendar to take care of Calvin, he gifted me a ticket for a quick trip to New York instead. I’d not been back to the Big Apple, one of my favorite places in the world, for seven years, though I had promised myself I’d go every spring. He knew I desperately needed to get away, could sense my restlessness, exhaustion and despair, and if I couldn’t manage a cross-country trip, at least I could get away for the weekend to a place that I love that is less than an hour flight away. This, I could justify doing. And so yesterday, though it killed me to leave a sick, feverish and seizing boy and my loving husband, my blooming garden and the perfectest dog in the world, I pried myself from the safety and comfort of home and put myself on a plane.

During the flight, and especially when I finally saw the Manhattan skyline, anchored in a way by Lady Liberty lifting her torch above the horizon, I thought about a perfect world. In a perfect world, I thought, my child would’ve been born normal. In a perfect world he wouldn’t be suffering epilepsy. In a perfect world, he wouldn’t endure the effects of heinous medications and a protracted, painful and difficult withdrawal. In a perfect world my son would walk on his own and see well and run and play with friends and talk and tell us what is wrong. In an ideal world, perhaps, I’d be able to be two or three places at once.

But it is not a perfect world. It is imperfect at best. And so Michael is home with our sick little kid and I am here being coddled by loved ones and friends, and hopefully by Sunday when I'm heading home, I'll be rested, refueled, energized and ready to get back to the business of taking care of Calvin again.

Looking to Manhattan from the deck of the Brooklyn bridge.