black sheep, scapegoats and wild white horses

I’d been hired for my talent and experience. Little did they know I was not the yes-man—the minion—they’d been counting on. Once through the doors, I politely challenged their practices, disputed their logic, questioned their command—what I’d thought I’d been hired to do. It was clear from the get-go, though, that I didn’t fit the mold. Clad in denim, wild vintage shirts, and rugged western boots, I struggled amidst a sea of pastel and khaki and modest coifs. I became the thorn in their side, perhaps even a reminder of their own resentments. I was the wiry black lamb in a herd of lily white sheep. They bullied me, shamed me, tried to back me into a corner and shut me up. But I called them out, then fingered a hole in their design and freed myself without turning back except to acknowledge to myself that I’d been right to question their methods and the unfairness of their systems. I was ten weeks pregnant with Calvin; He and I didn’t need the shit they’d been shoveling our way.



If Calvin, who is now eleven and significantly disabled, could speak, maybe he’d tell me similar stories about being pushed around at school. It can happen to kids who are different from the rest. I’d believe him. If he’d gotten hurt fighting back, I’d have understood. I can’t ever know, but I doubt I’d tell him to stand there with idle arms and absorb their bully tactics. If he’d felt justified, or even perhaps safer by fighting back, I’d get it. And I'd have his back.



If a friend called to tell me she’d been sexually harassed by a superior, I’d believe her. If she’d resisted and had lost her job as a result, I’d say she'd done the right thing. I wouldn’t ask what she was wearing or what she might’ve done to provoke the jerk. I wouldn’t have advised her to comply and consent just to save her job or to save her skin or to save her life.



I feel similarly about Sandra Bland, the black activist who was pulled over by a white cop in a Texas town for ostensibly not using her turn signal. When asked to put out her cigarette, she at first did not comply, calmly citing her right to smoke in her own car. After all, she’d only been pulled over for a minor traffic infraction. When the officer quickly became agitated with her calm and confident dissent, he asked her to exit her car and when she questioned his authority, he escalated, began yelling, then threatened her with a taser shouting, “I will light you up.” The incident deteriorated from there, the cop leading her out of the scope of his dash cam, threatening to arrest her and roughing her up. Though she insisted on knowing why she was being detained and handled in such a vile manner, he refused to tell her. All the while Ms. Bland fought against the injustice, believing her rights had been violated. After she’d been thrown down, had her arm wrenched and her head knocked into the ground, she was cuffed and arrested for resisting arrest (though for what?) then died days later in her jail cell at the end of a noose fashioned with a plastic trash bag.


I posted video of the confrontation on Facebook, citing racism as its source. The backlash I received in comments from white readers astounded me. I watched the video more than a half-dozen times in case I missed something. Each viewing reconfirmed my belief that the officer had erred, and badly. My observation was validated by Texas public safety officials, who removed the officer from his beat for having violated protocol. One commenter, a stranger to me, posted this:

Sorry but why can't people follow directions. Just asking.

She went on to say that Ms. Bland’s cigarette had been a possible weapon. Other commenters reasoned that Ms. Bland's rolling through a stop sign, failing to signal and questioning authority were somehow grounds for her baseless treatment by the officer. I encouraged them to imagine their daughters meeting the same demise. They used racially-charged terms like “thug” and flabby platitudes chastising Ms. Bland and others who came to her defense for, “playing the race card.”

A friend, saying my post and many of the comments were “just plain wrong,” also insisted that Ms. Bland’s behavior, though completely within her rights as a citizen and in direct response to the officer’s escalation and improper, abusive handling of her, was the cause for her demise. By saying so, he’d reduced Ms. Bland—like so many other white people have done to African Americans who’ve died unjustly in the hands of the police or other armed civilians—to a scapegoat.

Watch the video. Study it. Mark the moment when the tenor of the exchange becomes truly, unreasonably heated.

My friend went on to describe a time when he was nearly arrested for a felony crime he did not commit. He insisted that his cooperation with the officers was what had saved him, and that by the end of his ordeal, when the cops realized the accusations against him were false, the group of them were “standing around laughing and joking about how it all went down.” He would not concede the remotest possibility that, had he been black, things might have gone south fast. He failed to see that his whiteness, and the police’s trust of his whiteness against a backdrop of an armored white criminal justice system, perhaps had saved him from a worse outcome more so than his mere compliance. I’ve seen too many videos and read too many stories of unarmed black men, women and children being assaulted, beaten to a pulp, strangled and gunned down, and groups of peaceful protesters being doused with pepper spray and tear gas, to believe that blacks are treated the same as whites. The failure by some whites to recognize even a morsel of chance that racism is at the root of incidents like the one with Sandra Bland is a good example of how white privilege distorts reality.

Those who deny the existence of their white privilege, I believe, either do so consciously or perhaps because they are so steeped in its advantages, which pad every aspect of society, that they seem to find it an impossible notion to grasp and own, their families having benefited from its coddling for generations. So sheltered and buffered are they from any first-hand experience of centuries-long oppression, like that of Native and African Americans, of discrimination and racial hatred, that they can’t discern their privilege, as if trying to see white on white.

Unjust treatment of this kind I partly understand because I am a woman. In this predominantly patriarchal society, women are often victims of bias. We are catcalled and ridiculed, paid less and discounted, overlooked, condescended to, taken for granted, abused, and our bodies legislated by men. Societal cues tell us we are supposed to look a certain way, act a certain way and talk a certain way. We are often expected to be ladylike, made-up, shaved-down, in shape and dressed in heels. We are expected to sit with our knees together and yield to the man, the husband, even the colleague who is our peer. If we challenge authority we are labeled bitches or are told we must be, “on the rag.” If we prefer women, men boast that if we'd simply have sex with them we’d change our minds.

Think about it: if an entire race of people must create a movement called #Black Lives Matter, prompted by the gross injustice they face on a daily basis, not only by law enforcement, but in employment and housing and education and health care, we should know it to be true, besides the fact that there are numerous studies proving it. How many of us white folks have been strangled to death by cops for ostensibly selling loose cigarettes on the street? How many of us white folks have been charged more for rent or told the apartment is no longer available because of the color of our skin? How many of us white folks have grade school children who are in jail for minor misconduct? How many of us white folks get shot and killed for knocking on a white person's door for help? How many white kids get gunned down for playing with a toy gun or wearing a hoodie? How many of us white folks get arrested for trying to enter our own homes? How many of us white folks have brothers or fathers or sons or uncles in jail for decades for minor offenses? How many white Ivy League students are stopped and questioned simply for walking across their own campus?

Read some gross statistics about criminal "justice". This is not opinion. This is fact.



Some might say I am beating a dead horse by going on about racism and incidents like the one involving Sandra Bland. They’d be wrong. The horse is not dead. It is alive and kicking, wild and white and frothing at the mouth, bucking and prancing and hoofing black bystanders in the teeth. The wild white horse is racism. It must be corralled, harnessed and broken or it's going to wreak havoc with everyone and everything we all love and value. We can't keep saying the horse is tame when we see the wake of its disastrous path and the bodies it continues to bloody along the way.

And if all this talk of racism irks you, then perhaps you've got something to explore.

Sandra Bland, jailed for resisting arrest, but for what?

another rainy day in boresville . . .

but we survived.

refuge

It's Sunday, the clock just struck half past six in the morning and already I'm wishing it were seven p.m., wishing Calvin were snug in bed while we eat dinner with tonight's dear guest, Charlie. It's day seven and Calvin seems to be ramping up to his next seizure. I can tell by his high-pitch screeching and hypercough and the way he is mauling me, scratching my neck and pulling my hair as if to tell me what I know some verbal children with epilepsy say to their mothers as their seizures loom: Mama, make it stop!

I not only worry and despair over my son, but simultaneously feel strong notions of disgust at his manic vocalizations and spastic outbursts, which can endure for hours if not days. These emotions of mine are muddled together with a gnawing sense of guilt that he is the way he is because of something I might have done, even if only the mere fact that I am his mother. Add to the mix pangs of remorse for having not steered him away from the sippy cup he tripped on the other day injuring his foot, and the anger and fear I feel about the benzodiazepine we are trying to wean him from.

In these exasperating moments, which occur often, I must take refuge or I'll lose my cool, which isn't really a cool but rather a silent tension strung through my body, stitching ugly furls into my brow and, like a piano wire, if struck too hard might just snap.

Refuge. Mine is the garden. Wrapped in a blue robe, I kick off my ratty fleece slippers and don rubber boots caked with yesterday's dirt. I take as companions a cup of coffee and our dog, Nellie, making sure to shut the door behind me so that Calvin's rantings are, at the very least, muffled. Plodding through a dewy lawn sprinkled with white clover, my boots leave dark swaths in their wake as if to exclaim, like knifes carving into bark, we were here, but our presence is fleeting. Then, one by one, I step on stones through a corral of fragrant azaleas which fill my nostrils with candy spice. The Milky Way dogwood, with its hundreds of creamy moons, smiles down on me as I stand under a silver birch and, if I wanted to, I could touch a pair of cardinals nesting in the burning bush I've lovingly pruned into a Seussian orb.

Refuge.

Beyond the magnolia, whose few leaves have already begun to bronze, two perennial beds brim with yellow and rose glowing lilies, lipstick bee balm crowns, sprays of white feverfew, swords of purple salvia and flaming pink and peach echinacea suns whose spiky golden cores fat bumble bees orbit, land and mine.

By this time, I've forgotten my crazy kid and his unnerving antics, having drenched my senses in my own backyard reef amidst a sea of greens, where my body can be calm, my mind clear and somewhat free.

Photo by Michael Kolster

morse mountain

A white sky belied the warm morning as Calvin and I rode third in a caravan hugging the winding road to Morse Mountain reserve. There, a pod of fifth-graders spilled out onto the dirt parking lot and gathered around their teacher, Mr. Shea. He introduced two new children to the class, one of them being Calvin, who sat in a stroller chewing his blue plastic football, at times shrieking and laughing.

“Please say hello to your new classmates,” he asked of them.

Only slightly nervous, I gazed into the crowd of children dressed in brightly colored garb and ready to embark on their midsummer expedition. They had turned their attention toward us and from the center of the solemn mob a cute boy sprang, approached Calvin smiling and, leaning over with his hands pressed together as if in prayer, said, “Hi, Calvin!” before waving to him. Weak in the knees due to the boy's gesture, I thanked him for his unreserved kindness, then several other students echoed the greeting to my son who is incapable of saying hello or waving.

“Calvin hears you, he just won't respond, but he knows you are there,” I assured them, patting my boy on the head.

After patiently listening to the park rules, the group set out with their backpacks, bug spray and water bottles while I remained to change a wet diaper in the back of the car.

“I’ll catch up!” I called to the stragglers who had turned to wait for us.

Our old three-wheel stroller handled the path with little trouble, bouncing a cackling Calvin along what had over years become more rock and rut than pavement, as if a dry river bed. It took no time for me to break into a sweat pushing sixty pounds up a rough hill through muggy air, but I soon caught up to the back of the happy flock.

Trailing them through the wooded serenity, I felt grateful Mr. Shea had included us in the trek, just as I'd been grateful when he—being one of few teachers to do so—invited me into his classroom to tell his students about Calvin and about epilepsy. I felt grateful to get out of the house with my gimpy boy, a jaunt I'd likely never consider doing on my own. I felt grateful for the worry-free feeling afforded me by the cannabis oil which has kept all but one of Calvin's daytime grand mal seizures at bay for over 300 days. My buddy Kim was there with her daughter Zoe, so I enjoyed the comfort and company of a woman who seems to appreciate my crude sense of humor. A couple of the other mothers who went as chaperons, Beth and Becky, introduced themselves to me, as well as the grandmother of the sweet boy who had first said hello to Calvin. Becky and her daughter Peyton paid great attention to me and Calvin and I was sad to hear that they'd be moving away. All of these things made me glad I hadn't chickened out.

Twenty minutes into the hike and with a little effort, I hustled the stroller up a steep hill to the top of Morse Mountain—really more like a large hill—for a view of the salt marsh blanketed in a fog obscuring the open ocean. The kids gathered around Calvin’s stroller for a photograph before heading back down toward the beach. At the fork in the road I veered left to make my way back to our car and home in time for Calvin’s lunch and seizure meds. Having said goodbye and left the group behind, the walk was quiet except for the buzz of mosquitos and the haunting song of a hermit thrush. Even Calvin was calm. Relaxed and unwound on the day after Calvin had hurt his foot, I felt myself melting into the backdrop of salt marsh and sea, casting my worries into the breeze, if only for a moment.

Before long we were back at the parking lot where Don, the attendant, was braiding dreamcatchers, bracelets, key chains, bags and necklaces made with found lobster trap netting, bait bags, rope, driftwood, feathers and shells. He and I had a nice visit before I had to feed Calvin a snack. He told me a little about his craft and shared with me his website, Sagadahoc Tribal Arts.

“Sorry, Don, but I’ve got to run the car for a bit while I feed Calvin," explaining that the heat and mosquitos were too bad to keep the windows up without the air conditioning.

“No problem,” he called, and went back to making dreamcatchers, just as the sun began burning through the morning haze.

platitudes

They say it gets better. It doesn’t.

They say God doesn’t give you more than you can handle. They’re wrong.

They say everything happens for a reason. Things don’t.

These are the thoughts that pinged around in my skull when, the day after a three-to-five-minute grand mal seizure followed by twelve straight hours of partial seizures—at least one every hour—Calvin tripped on his sippy cup, which he’d tossed onto the hardwood floor, and hurt his leg. He cried and cried cradled in my arms while I told him I was sorry that I hadn’t caught him, hadn’t steered him away from the cup he hadn’t seen but that I had.

Eventually, he stopped crying, but it was soon clear that he’d hurt himself badly enough that he avoided putting weight on his left leg, turning red-faced and reaching out for me after only a few steps.

“Fuck!” I cried, hot tears burning my eyes, knowing I could have helped to avoid the injury and wondering how in the hell he’d be able to get around if he needed a cast or a special boot. He has enough trouble walking on his own as it is, I thought.

Calvin’s Superdoc squeezed him in between patients, examined his leg, noting the same slight puffiness to his foot that I had seen, then sent him to get x-rays. The radiologist saw no breaks, though it’s possible a hairline fracture, which might not reveal itself until the healing process begins, is the culprit.

Racked with guilt and dreading a bad outcome, I was restless worrying about my child, if he was hurting, how he’d get around, if we’d injure ourselves carrying his fifty-plus pounds of slack weight up and down the stairs. Michael assuaged my angst with soothing words of optimism and a shot and a half of bourbon on the rocks. He expressed his awe, at the same time reminding me, that Calvin, who is eleven and legally blind times five, has cerebral palsy, is missing a significant amount of the white matter in his brain, is non-verbal, still in diapers, has low muscle tone, recurrent seizures, was on a special diet that can cause osteoporosis and is on medications that can affect bone density as well as cause dizziness, lethargy and poor coordination—just for starters—has in the past tumbled down the stairs, fallen flat on his face, his elbows, his knees, his hips and square on the back of his head on a hard floor but has never broken a bone or hurt himself very badly.

Still, I was aching for my child and wallowing in self-pity. Then I read this short Facebook post from my friend Lidia:

really good things are going to happen to you. really hard things are going to happen to you. feel both all the way through, because they will each change you radically. then remember there is a deeper wellspring you need to replenish, the you in between life events, the you born of water.

I felt as if she’d written it for me, right then and there—perhaps she had—and reading it gave me great solace knowing she is right, thankful she isn't one to fling thoughtless platitudes.

Even so, this morning, I woke up in the grips of despair again only to view this harrowing short Op-Doc from the New York Times about the Nubanese ethnic cleansing in Sudan. Watching it smacked me back into the the reality that, even with a kid like Calvin, we are fortunate and should be so incredibly grateful for what we do have and for the horrors we don’t have to deal with first hand. There are so many wrongs in the world which, with my small voice, I can try to right, rather than whining about my life’s little incidents which, in the scheme of things, don’t amount to much. Then, I recalled the platitudes I was considering after Calvin tripped, and thought:

these innocent people of sudan, it doesn’t really get any worse. tell me god hasn’t given them more than they can handle, getting bombed out in a cobra-infested cave or a dirt hole, seeing their children riddled with shrapnel or set on fire, seeing their children's flesh burned off, hearing them screaming for help, seeing them burn to death or die later from tetanus, from maggots burrowing into their charred bodies. try to tell me there is some grand design in that. just try.

Platitudes. Though perhaps well intended, like salt in a wound, they can burn, because sometimes, life does give you more than you can handle and often, things don't get better and for no good reason at all.

A young Sudanese refugee cries for his mother. Photo by Stephen Morrison/EPA/Corbis

the impossibility of it all

In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child who was bat shit crazy for two solid days. Like the mounting tension between wrestling tectonic plates, the pressure in Calvin's brain seems to build until it quakes, and in the temblor's wake we often find relative calm.

The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin.

“I’ll have an iced coffee,” I said to a familiar smiling barista.

At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once, but twice.

“Okay Kid, one more time and we’re outta here,” Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.

Seconds later we were packing up only minutes after we’d arrived, a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, Michael’s coffee and my half-eaten cinnamon roll.

“Christy,” the cafe's owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”

We hugged each other and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie Nellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.

“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness.

She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior.

“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amidst the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal.
“Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.

Maria helped me clip Nellie to the leash and we said our goodbyes. Crossing the street I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.

Saturday morning's seizure didn't yield the usual long-term calm, and that night Calvin had several brief, partial seizures every hour after midnight until afternoon on Sunday. An extra dose of THCA cannabis oil and a dose of rectal Valium did nothing the quell the storms in his brain.

As I write this, Michael and I are holding vigil in Calvin's darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin's mini hospital. Inside the air is still and close. Outside the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the nineties, we should be taking our eleven-year-old son to Pleasant Pond to go swimming or for a walk with Nellie in the cool of the woods and perhaps to Cote's red shack for an ice cream cone. But that is the life which one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug he probably never should have been prescribed and whose dose never should have gone as high as it did, habituation and evenutal loss of seizure control one of its many heinous downsides.

Instead, as I watch my son sleep between fits of seizures, retching and painful tears and, with the shade drawn against the sun, I dream—through the impossibility of it all—of what one day might be mine again, but without really knowing how.

Calvin, yesterday, after we moved him into our room

hitched in harpswell

I'm not sure if I've ever had a dry eye at a wedding, and most definitely not when dear friends are the ones getting hitched, and the minister, of sorts, happens to be my husband. I say, of sorts, because Michael, who like me is not religious, got ordained online with The Universal Life Church Monastery, which promotes freedom of religion and the blissful idea that we are all children of the same universe. 

Yesterday, an eighty-some-odd degree idyllic summer day, our dear friends Meggan and Bob, alongside their daughters Nola and Lydia, got hitched atop a grassy hillside that spills into a protected cove of salty sea in Harpswell, Maine. There was a keg of beer, bride-and-groom margaritas, a cornhole game, a mob of babbling babies bouncing on their mothers' hips, fancy hats, lipstick kisses, wildflower bouquets, barbecued ribs and thighs, salads and sides, a sheet of red velvet cake and music and, of course, the happy couple.

After the guests gathered, Michael started by reading a beautiful passage from the preface of Walt Whitman's Leaves of Grass before marrying Bob and Meggan, then enlisted the loving and exuberant crowd of friends and family to join in the declaration of their marriage. We ended with three heartfelt, hip, hip, horrays! And though Michael was its minister, it was a secular ceremony, short and sweet and at times funny. I wept throughout without wiping my eyes, letting my tears dry in the afternoon sun, thankful that, this time, they were tears of happiness for our much loved friends.

today

Today, my brother Scott forwarded an email to me. On first glance, it appeared to have been one of those chain emails that I loathe receiving, the ones that, at the end, tell you that you must forward it to others and something good will happen to you. But it was not one of those. Rather, it was a list of incidents relating people's humanity, empathy, gratitude and grace, and what made it even nicer for me was its absence of any mention of God; it was simply an account of the amazing creatures we can be if we are open, loving and mindful of others.

Thank you, Scott, for knowing that this was something I'd appreciate, even though I'm often cynical and despondent, and for sending it on.

Here it is for the rest of you. Enjoy:

Today, I interviewed my grandmother for part of a research paper I'm working on for my Psychology class. When I asked her to define success in her own words, she said, "Success is when you look back at your life and the memories make you smile."
 
Today, I asked my mentor - a very successful business man in his 70s- what his top 3 tips are for success. He smiled and said, "Read something no one else is reading, think something no one else is thinking, and do something no one else is doing."

Today, after a 72 hour shift at the fire station, a woman ran up to me at the grocery store and gave me a hug. When I tensed up, she realized I didn't recognize her. She let go with tears of joy in her eyes and the most sincere smile and said, "On 9-11-2001, you carried me out of the World Trade Center."
 
Today, after I watched my dog get run over by a car, I sat on the side of the road holding him and crying. And just before he died, he licked the tears off my face.

Today at 7AM, I woke up feeling ill, but decided I needed the money, so I went into work. At 3PM I got laid off. On my drive home I got a flat tire. When I went into the trunk for the spare, it was flat too. A man in a BMW pulled over, gave me a ride, we chatted, and then he offered me a job. I start tomorrow.

Today, as my father, three brothers, and two sisters stood around my mother's hospital bed, my mother uttered her last coherent words before she died. She simply said, "I feel so loved right now. We should have gotten together like this more often."

Today, I kissed my dad on the forehead as he passed away in a small hospital bed. About 5 seconds after he passed, I realized it was the first time I had given him a kiss since I was a little boy.

Today, in the cutest voice, my 8-year-old daughter asked me to start recycling. I chuckled and asked, "Why?" She replied, "So you can help me save the planet." I chuckled again and asked, "And why do you want to save the planet?"  " Because that's where I keep all my stuff," she said.

Today, when I witnessed a 27-year-old breast cancer patient laughing hysterically at her
2-year-old daughter's antics, I suddenly realized that I need to stop complaining about my life and start celebrating it again.

Today, a boy in a wheelchair saw me desperately struggling on crutches with my broken leg and offered to carry my backpack and books for me. He helped me all the way across campus to my class and as he was leaving he said, "I hope you feel better soon."

Today, I was traveling in Kenya and I met a refugee from Zimbabwe. He said he hadn't eaten anything in over 3 days and looked extremely skinny and unhealthy. Then my friend offered him the rest of the sandwich he was eating. The first thing the man said was, "We can share it."

summer camp

Oodles of kids are spending their summers attending lacrosse camp or soccer camp or swim camp or are camping and fishing, hiking and biking and/or boating. Hoping to get in on some of the action and to feel some sense of normalcy—whatever the hell that is—I called up an organization called Pine Tree which runs a camp especially for disabled children and their families. I was encouraged, because what I'd heard about it made me think it might be a place Michael and I could take Calvin where he'd share something with his peers and where we'd perhaps enjoy a lakeside cabin experience. While filling out the online application, I came across a page outlining eligibility. I read aloud some of the requirements, answering them in my head as best I could.

The camper must:

Be able to interact with others, be cognitively aware that he/she is participating in a camp program, be able to participate in activities with other campers and respond to staff.

Be able to adapt to the group living environment of camp without disrupting others during sleeping hours, meals and program activities.

Be able to adapt to a staff supervision ratio of 1 staff to 3 campers.

Be free of emotional outbursts and capable of being able to restrain himself/herself at all times.

Be free of medical conditions that, in the opinion of our medical staff, may represent a danger to himself/herself or others. Each applicant will be judged on an individual basis, but as a general rule, A CAMPER IS NOT CONSIDERED A CANDIDATE FOR CAMP IF HE/SHE IS JUDGED TO HAVE A MEDICAL CONDITION ASSOCIATED WITH A HIGH RISK FOR COMPLICATION OR INJURY TO HIMSELF/HERSELF OR OTHERS.

Be on a stable seizure medication regime and not in the process of changing medication or altering the dose of current medication for at least one month prior to arriving at camp.

Sadly, my answer to all of these questions was, No.

It is not clear that Calvin would be cognizant of participating in a camp. Certainly, he would know he was not at home, but as for other activities and as for responding to staff and interacting with strangers, that would be a stretch at best. It's hard enough getting him to give our neighbor Woody a hug even though we visit him nearly every day.

As far as behavior goes, there is no telling when Calvin might go into hysterics, even if we paused his benzodiazepine wean, because side effects from the withdrawal are not linear or predictable and he's liable to disrupt other campers with his shrieks and manic laughing and flailing at any moment.

And when it comes to Calvin's medical condition, it is anything but stable and, again, because of his benzodiazepine withdrawal he can, at any time, go into status epilepticus, a serious prolonged seizure or series of hard-to-control seizures that can sometimes lead to death.

So I never completed the form and I resigned myself to yet another summer spent at home. And when I began thinking of it, rather than wallow in my sorrows, which I'm oh so very good at doing, I realized our home is Camp Hug 'n' Kiss, Busting Botanical Camp, Hubby Chef Camp and after about four or five o'clock its pretty much always Camp Cocktail. It's a place where Calvin is comfortable strutting the back yard and neighborhood streets, and where he can enjoy his johnny-jump-up and his numerous baths. It is a place, when Calvin is at morning school or is being cared for by his nurse, I can garden in relative peace and quiet, I can get a bit of writing done, where I can savor the amazing food that Michael cooks on a regular basis then hang out by the fire on star-studded nights—a baby monitor slung around my head—being forever grateful for what we have and knowing that Calvin is asleep in his safe bed and, if we need, a hospital is just minutes away.

inside and outside

Outside my in-laws rental cabin a few miles down the road from our home, a father played with his young children in the cool waters of the cove.

Inside, we sat with drinks in hand while our child, who is eleven, played with his baby toys in a pack-n-play three sizes too small.

Inside, we ate lobsters out of their shells and noshed corn off the cob as the sun slipped behind sea and land.

After dinner, we stepped outside to spot two great blue herons dive and swoop along the pebbly shore, their dark presence somehow ominous.

Inside, I had a sick feeling in my stomach, not able to fully enjoy my surroundings thinking about the carefree kids who were wading in the waters, mud seeping between their toes, while mine was inside recovering from a seizure he'd had that morning, holding his head in his hands rubbing his weary eyes, his brain awash in dizzying anticonvulsant drugs which send him who knows where.

Outside, the scenery is all the more painful for its raw beauty, within arm's reach but somehow unreachable to me.

sunrise seizures, benzos, birds and cannabis

I hear the clock strike five just as I’m drifting off to sleep an hour after Calvin’s morning seizure. I’d seen it coming yesterday—his warm skin, red ears, flushed cheeks, willful dropping down, perceived malaise, unmistakeable seizure breath. I listen intently for signs of a second one, dreading my boy’s seizure scream, the tensing of his body, the violent spasms that wrack his body. But none come, which might mean the rescue THC cannabis oil we gave him has worked.

With my eyes shut, I listen to the first sounds of dawn coming alive in the trees: the soft, round coo of a morning dove, chirping robins, tweeting catbirds and the trill of a cardinal. Somewhere nearby I hear the hollow knock of a woodpecker and I wonder what kind it is.

I drag myself out of bed and call to Michael to help me change Calvin’s soaking diaper, pajamas and bed sheet. Our boy, who mostly seems such a little thing, is getting bigger, and I wonder how much longer we’ll be able to carry him when it’s necessary. As Michael changes Calvin's pajamas I head downstairs to get his clobazam, the benzodiazepine, which I’ve decided to give him early hoping to thwart a second seizure. As I draw it up in the syringe I think about the article I read yesterday, Is It Bedtime for Benzos?, remembering a few exerpts:

Among the many discoveries to result from this mapping is proof that benzos induce reward prediction activity in the brain and increase dopamine release. Just like heroin and cocaine. And yet, many patients continue to be told by their doctors that these meds have little to no downside.

and:

For decades, doctors have been setting people on a road to dependency and addiction by ignoring or downplaying benzos’ well-known dark side. It’s a dark side their profession has had plenty of time and cause to acknowledge and understand, because it’s one benzos share with their predecessor, the barbiturate family.

and:

Following a sudden withdrawal or even too-rapid taper, the brain thinks it’s being injured, so it marshals all these other mechanisms to try and mitigate these reactions,” says Dr. Madill. “Fatigue, disorientation, malaise, severe panic and startle reactions, nerve pain, muscle aches, short-term memory loss.

and:

Benzodiazepines impair the formation of new memories.

Upstairs, Calvin struggles as I syringe his benzo into his mouth and chase it with a little water. This last bit from the article, about benzodiazepines' affect on new memories, is as troubling as their addiction. Calvin has been on two benzos, clonazepam (Klonopin) and clobazam (Onfi), which are meant only for very short term use, since he was only three years old. He's eleven now and we've been weaning his clobazam for over a year with at least six months to go. I loathe to imagine the retardation of his learning process—his development—because of the benzos. How can a child develop skills if they can’t retain the knowledge imparted to them? There is no doubt in my mind that the seizure drugs, in particular the benzos, have caused more harm to my boy’s development than the seizures themselves and perhaps even more than his brain malformation itself. And what’s worse is that Calvin's developmental windows for learning things like speech have likely already closed, so even if we are successful in getting him off of his benzodiazepine without killing him (benzo withdrawal can cause life-threatening seizures even in people without epilepsy) he’s bound to see little developmental progress in their wake and will likely remain a non-verbal, severely impaired toddler forever.

In our bed, Michael snuggles up to Calvin spooning him as I watch the two of them close their eyes and fall back to sleep. He's a beautiful child—especially when he's sleeping or smiling and feeling good—with flawless skin, full lips, big blue eyes and a mass of shiny chestnut hair. Looking at him lying so peacefully there, you'd never know anything was wrong. But, as if the missing hank of white matter in Calvin's brain weren't enough to ruin our boy's capacity for doing nearly everything, the benzos have definitely sealed the deal.

Luckily, we're pioneering cannabis oils to treat his epilepsy and, thanks to the amazing medicinal properties of an herb that the federal government has falsely demonized for decades, today we are celebrating 300 days that Calvin has gone without having a waking, daytime seizure. For years he had those seizures every week or two, usually in the bath or at the dinner table. In that same time span, with the exception of one naptime seizure, all other seizures have been when he is asleep in the middle of the night or in the wee hours of the morning when songbirds and the pileated woodpecker with its blood-red crest, as it turns out, announces the break of dawn.

For other posts about benzodiazepines, click here.

Calvin with his Gpa, eight hours after his seizure.