staying safe

Calvin's final day of summer school was a sweltering one. When he got off of the bus, his mask was soaked with drool. Wiping his face as best I could with the corner of his bandana, I felt sorry for him; it must be near impossible to breathe through a saliva-soaked surgical mask, especially when it's ninety degrees.

As the world grapples with a runaway pandemic, our nation is approaching 640,000 deaths from Covid-19. To make matters worse, the more dangerous and contagious Delta variant is fueling a resurgence that is ravaging mostly unvaccinated communities, their healthcare facilities and workers. Regrettably, this predicament was unnecessary; some leaders haven't been aggressive enough implementing clear measures and messaging that could truly cut the virus off at the knees. Too many people still refuse to be vaccinated and/or wear masks, many of them led by mis- and disinformation they've gotten from certain politicians and rabbit-hole posts spread on social media. Tens—if not hundreds—of thousands of hospitalizations and deaths could have been prevented if certain so-called leaders hadn't downplayed and politicized the pandemic and things like wearing masks, and had we all been more deliberate and steadfast in protecting ourselves and our neighbors. It seems we're always playing catch-up with what is an ever-evolving and aggressive virus. Collectively, we haven't done what it takes to get ahead of it. We have been and continue to be reactive instead of proactive. This hot mess is of our own doing, though some folks get more credit than others for turning it into such a shitshow.

Despite these grave developments, there are those who remain staunchly skeptical about the need to get a Covid vaccine and/or wear a mask. Some are convinced that they are largely immune because of their youth, healthy diets and/or lifestyles, forgetting that in recent years they've been sick with the flu. Others aren't following the science about vaccines' overwhelming safety. Still others believe in wild and dangerous conspiracy theories, most of which can be easily debunked. Infectious disease experts explain that variants are more likely to emerge from the unvaccinated since the virus has more time to replicate and mutate in a body that doesn't have a vaccine in place to impede its progress. Also, unvaccinated people shed the virus longer than vaccinated ones whether symptomatic or not. Moreover, the Delta variant's viral load is 1000 times that of the Alpha strain. Unvaccinated people make it all the more possible for the emergence of an even more contagious, virulent and deadly variant which might prove resistant to vaccines. Then what?

My thoughts wander again to Calvin—my infant-toddler-teen whose seizures seem tugged into action by full moons, new moons, dips in barometric pressure, high humidity, and illness. Though all three of us are vaccinated, I worry about what might happen to us if we were to be infected by the Delta variant (the vaccines are highly effective in preventing severe illness, hospitalization and death, but we can still get infected.) I know what Covid can do to hearts, lungs, and brains, but the full, long-term implications of Covid are still unclear. I worry about Calvin; I have little doubt that some of his classmates this fall will attend school unvaccinated, not because they aren't old enough, but because of their parents' dubious stances on vaccines.

Please, for your neighbor's sake, mask up and get vaccinated.

skin in the game

Recently, I saw a meme asserting that the reason some people don't believe Covid-19 and racism are real or serious is because neither has affected them. I concur. As the mother of a significantly disabled and chronically ill child, I experience a similar dynamic: other's underestimation, denial or lack of understanding and empathy regarding the challenges we face in navigating and enduring the complex and often sorry world of our child. 

While walking Smellie at the fields the other day I heard a twelve-minute segment on NPR about a disabled woman's struggle to survive in a hospital where the doctors and nurses repeatedly dismissed the notion of her quality of life because she couldn't walk or talk. In doing so, they withheld critical medical care which led to her death. She was only 36. Listening to the story, I was reminded of how Michael and I sometimes feel when we attempt to advocate for our nonverbal, legally blind, autistic, incontinent, seizure-prone, intellectually and physically disabled, utterly sweet and defenseless child who can do virtually nothing by himself. Despite Calvin's struggles, he has a certain indisputable quality of life, and he touches people in meaningful ways. In other words, his life matters. And as his best champions who know him far better than anyone, so does our advocacy for him.

Beginning when Calvin was two, we met with neurologists whose virtuous aim was to eliminate his seizures, albeit seemingly at any cost. To achieve their goal, they prescribed highly addictive benzodiazepines and increased those and other drugs to debilitatingly and sometimes dangerously high doses, usually downplaying or denying the side effects caused by the drugs. That these physicians did not have children of their own suffering from medically refractory epilepsy allowed them to be somewhat divorced from grasping the drugs' heinous side effects. This led to what often felt to us like the cavalier prescribing of the medications. These doctors couldn't know the anguish of seeing their own precious child go berserk, become a zombie, careen, shriek, cry, stumble, regress, wither away, explode, panic, perseverate. In other words, their guidance was worthy of question because they had no skin in the game, (which is not to say their advice should have been utterly disregarded.)

Some of the best treatment we've received—and to be fair, we have gotten plenty from humble specialists who are the most sympathetic listeners—was from two emergency room physicians whose eight-year-old daughter had epilepsy. Calvin was eleven that time he was admitted to the ER after a cluster of seizures which weren't responding to emergency medication. Immediately upon discussing a plan to alleviate the spate of fits, the physicians, who worked consecutive shifts, let us take the helm. They allowed us to administer Calvin's cannabis oil to him, something that most hospitals prohibit. Their empathy was palpable. Their ceding to our strategies was clear and deliberate. Because of their daughter, they had skin in the game and could empathize with our situation and responded accordingly.

When Calvin was an infant-toddler, I was upset by a magazine article about a mother of healthy sextuplets. When I expressed my resentment, one of Calvin's in-home nurses responded, "You're not over that yet?" Apparently, my lingering grief, sense of loss and despair over having a disabled, feeble, seizure-racked child was unreasonable. Also early on, during some of Calvin's demanding in-home therapy sessions, various professionals told me that Calvin, my tiny, limp premie with his incomplete brain, would cry in order to manipulate me into picking him up. Upon hearing this, my heart began to pound. The truth was, my fragile child was in distress and simply couldn't cope with the colossal tasks being asked of him. It hurt me that they couldn't understand.

Some years ago, I read that the cells of a fetus remain inside their mother's body—her tissues and bloodstream—for decades. I reason this might account for what is commonly referred to as the maternal bond, and might explain why the gut instincts of mothers seem so often right.

I recall too many times I wish I'd followed my gut rather than various specialists' recommendations. As one with the most skin in the game (besides Calvin), I should have patently refused to put him on that first benzodiazepine when he was three. I should have taken him off of the rigorous ketogenic diet when it clearly wasn't working. I should have questioned allowing a painful and bloody intubation when it didn't seem necessary; I should have been more assertive when asking for the best expert to insert Calvin's IV before he lapsed into a forty-five minute seizure, one that I had sensed was looming despite the doctors' and nurses' skepticism. I should have refused the piling-on of medications and the ratcheting-up of doses to harmful levels.

But, as with racism and at some level, Covid-19, there's an element of society that tells us things are not as bad as they seem. We're told everything will be okay. We're led to believe we are imagining or exaggerating things. We're taught to doubt ourselves, and to unquestionably trust and comply with authority. We're sold a bill of goods that experts undoubtably know our children better than we do. We are judged—for how we deal or don't deal with adversity, for our assertiveness, our demands, our expectations, our protests, our impatience, our tack—by people who have no skin in the game and by those incapable of fully understanding—despite thinking they do—what it's like to live with, love, raise, advocate and fear for a disabled, chronically ill child ... or a nonverbal loved one in the hospital with suspected Covid ... or a mother of a child with black skin.

February, 2015, Photo by Michael Kolster

present trouble

On too many days during the past three-and-three-quarters years, I'm reminded that if my son Calvin had lived in Hitler's Germany, he'd have been among the first to be swept up by Nazi thugs, then executed in the regime's first systematic "cleansing" of "undesirables." In the name of extreme nationalism, millions were rounded up like animals and slaughtered: the mentally ill and physically disabled, the elderly and infirm, homosexuals, Romanis, Jews and others.

Last week, I heard and read about the murder of yet another unarmed Black man at the hands of police, this time in Rochester, New York earlier this year. His name was Daniel Prude. He had left his brother's house in an erratic, psychotic, state. His brother called the police for help. Instead, Daniel became another victim in this nation's historic and present trouble of violence against Black people.

It was nighttime in March. By the time the cops arrived, Mr. Prude had taken off his shirt and long johns and was running around naked in the cold. The officers handcuffed him and put a spit mask over his head. Even as Daniel pled with officers to remove the mask, they held him down, his face pressed into the pavement, until he passed out and his pulse stopped. Though he was revived in the ambulance, he never regained consciousness. He died seven days later.

We know of dozens upon dozens of stories like this—unarmed Black men, women and children being murdered by police and vigilantes. Each account is sickeningly reminiscent of past ones—Jacob Blake, George Floyd, Breonna Taylor, Eric Garner, Tamir Rice, Philando Castile, Trayvon Martin. Unless we as a nation do something different—unless we reform the police and evolve as a society—these atrocities will continue.

Despite gains made during the Civil Rights Movement, Black people in America are still treated by many in law enforcement and others as subhuman. As if animals, they are falsely feared and made into monsters. They are regularly maligned as criminals. The Black Lives Matter movement is vilified as sinister, though their platform is righteous and inclusive, its simple goals dignity, opportunity and equality for Americans who, since slavery, continue to be exploited, terrorized, lynched, targeted, marginalized and abused. Some people's refusal to say, Black lives matter, serves as ample evidence of the need to underscore that very truth.

I worry about the well-documented infiltration of racism, White supremacy and far-right militancy into our nation's law enforcement, and its subsequent effect on communities. I understand what a privilege it is to have white skin and to jog, drive, jaywalk, shop, hike, play, loiter and prank with impunity. I know what it is to be the mother of a child who is misunderstood and undervalued by many. I read too many accounts of boys with autism and other mental health problems being killed by ill-trained police. I hear other's messages which are conveyed to me in real words and expressions of contempt and indifference:

Look at that kid. What's wrong with him? Shut that child up. Why can't she control him? He doesn't belong here. He's disgusting. I don't want to have to look at him. Pretend he doesn't exist.

I see a similar contempt for and misunderstanding of Black people and their movement. I hear people scapegoat and victim-blame African Americans, hear people regularly assign criminality to Blackness. I hear their message in words and expressions of contempt and suspicion of Black victims:

He must be guilty of something. If only he had complied. He had it coming. He was a monster. The officer feared for his life. He had drugs in his system. It looked like he had a weapon. Why did he run? He shouldn't have been there doing that in the first place.

Yesterday morning I heard an excerpt from a James Baldwin essay entitled, The White Problem. Though written in 1964, it still resonates today:

The people who settled the country had a fatal flaw. They could recognize a man when they saw one. They knew he wasn’t anything else but a man, but since they were Christian and since they had already decided that they came here to establish a free country, the only way to justify the role this chattel was playing in one’s life was to say that he was not a man. [Because] if he wasn’t, then no crime had been committed. That lie is the basis of our present trouble.

I consider, again, the state-sanctioned murder of innocents and "undesirables" in Nazi Germany and in this nation. I lament the dog-whistle politics of the current administration. I say a secular prayer for the men and women who are fighting for equal justice in a nation that still hasn't atoned for its sins or lived up to its original promises. I think about my new pen pal who is on death row, whose first letter to me was humorous, heart-rending and tragic. He doesn't deserve to be there; no one does.

As always, I muse on my son Calvin who, though nonverbal, autistic, physically and intellectually stunted and disabled, is as worthy and lovable as any of us. Then, I imagine those like Daniel Prude, whose lives were snuffed out in the street as if they didn't matter. No doubt they were worthy and madly lovable too.

dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster

regarding calvin

As my boy sleeps in my lap, in his bed, in our bed, on the couch, I hear the birds chirping outside. I feel the rumble of passing motorcycles and cars, see students strolling down the sidewalk. A week of school has come and gone, yet my boy remains sick at home. In my arms, we rest and pass the hours.

Yesterday, while on the couch together, Calvin looked right at me. This gift is rarely granted, and I found myself luxuriating in his pool-blue and yellow-flecked eyes. I did not take his gaze for granted; it's so rare that I see him look at me—almost never, it seems. But sometimes, when I put my face smack-dab in front of his, he does regard me. As a baby, if memory serves, he used to do it more often. I remember the day he got his glasses when he was a tiny eleven-month-old. It was like I could see the world flooding into his eyes—eyes which before had likely seen only shapes and colors.

Now, for whatever reason (autism, visual fields, seizures, drug side effects) Calvin usually disregards or looks at me peripherally. His eyes jerk and rove from his nystagmus. One eye often turns in, a phenomenon that, vexingly, his former ophthalmologist regularly denied, explaining it away as an optical illusion. No matter how confident I was of my son's eye-drifting or tugging-in (I'm the resident expert in observing Calvin closely) the doctor still rebuffed me.

Tomorrow, hopefully, Calvin will attend his first day of high school. He'll be greeted, fed, diapered, and escorted by a teacher and a staff who have rarely, if ever, worked closely with him. My anxiety is high, afraid he'll choke on food he doesn't chew well, fearful he'll fall off balance on the stairs or run into a door jam like he did this morning. Michael and I understand that Calvin, due to his poor vision (which glasses don't fully correct), his lack of coordination, and caregiver overconfidence or undervigilance, is a walking disaster, an accident waiting to happen. My hope is that the folks at school will regard him closely, will see what he sees and what he doesn't.

Calvin's first day with glasses when he was eleven months old.

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

never look away

Seeing the young woman forcibly whisked away by strangers, her family standing there motionless, paralyzed by fear, gave me chills. Though they were simply actors in a movie, it stirred something in me.

The film, Never Look Away, begins with the systematic kidnapping, sterilization and extermination of Nazi Germany's "undesirables"—the infirm, the mentally ill, the disabled—children and adults like my son Calvin whose life, as my friend Chris Gabbard describes in an article and in his recent memoir, is valuable beyond reason. In Hitler's regime, children like Calvin were guinea pigs, tortured in medical experiments and murdered in a state-sponsored effort to "cleanse" society of what Nazis deemed as stains on the Aryan race. Then the Nazis went after the Jews, likening them to thieves, rats and demons, instilling fear and hate in order to further their cause, which was to eradicate them.

These images are sickeningly reminiscent of what I see happening today. Refugees from war-torn, poverty-stricken, violent and corrupt nations are being portrayed by this administration as murders, rapists, snakes, infestations. Like animals, they are being crammed by the hundreds into spartan cages where their health and well-being are in jeopardy—little water, little food, no privacy, no basic hygiene. Their children are being forcibly separated from them. These refugees—our fellow human beings—are no different than most of us, except that they are desperate; they are good people, love their children, want a better life. We are not better than they. We can't lay claim to this chunk of earth stolen from its natives. We can't exploit their labor while neglecting their fundamental human needs.

Though I'm no Christian, I find myself asking, what would Jesus do?

Some people ask why we should be caring for refugees when we should be caring for "our own." Why does it have to be a choice? Can't we do both? I don't know how to solve this humanitarian crisis, though I have some ideas. But one thing for sure is that the current treatment of innocents is barbaric.

The other day someone characterized me as "pro-abortion." I corrected her by explaining I am pro-choice, then underscored the difference. I went on to point out, at least in my mind, the hypocrisies of many so-called pro-lifers—people who support capital punishment (state-sanctioned murder), and yet oppose food stamps, universal healthcare, same-sex adoption, basic care for refugees, a living wage and other measures that help vulnerable populations live and thrive and that contribute to a healthy society.

I think back on the film and on the Nazi regime it depicted, one in which its fascist leaders deemed some lives (Caucasian, Reich Church Protestants, healthy, cisgender) more deserving than others (Jewish, Romani, non-Europeans, the infirm, the disabled, Leftists, homosexuals, POWs, Catholics and followers of other religions.) I think about a world in which people, thanks to ignorance and propaganda, fear and hate others. I think about nations like ours whose so-called leader ridicules people like my disabled son, denigrates women, and maligns decent people who are Black and Brown and Gay and Bi and Trans and Jew and atheist and foreigner.

I think again about the atrocious conditions these refugees face in what epitomize modern-day concentration camps. I think about how so many Americans choose to avert their eyes. I consider the Canadian cartoonist who was fired for his depiction of a golfing POTUS playing through drowned refugees, Oscar Martinez Ramirez and his two-year-old daughter, Valeria. I am reminded that I must remain vigilant in protesting such inhumanity. I am reminded that silence equals complicity. I am reminded, when it comes to atrocities, we must never look away.

Photo AFP-JIJI

helicopter mama

I'm a helicopter mama, hovering over the natural disaster that is my non-verbal, incontinent, legally blind, autistic, cognitively and physically disabled, chronically ill son. Regular electric storms wreak havoc inside his skull causing him to writhe, twitch and convulse. Including this morning's, he's had nine grand mals this month. A recent electroencephalogram revealed brief, fifth-of-a-second epileptic discharges (not considered bona fide seizures) occurring—at their most frequent, during sleep—once or twice every ten seconds or so.

I'm a helicopter mama for which I sincerely apologize to no one. I know my son far better than anyone. He's on my radar all day and all night long—no further than arm's reach, mind's eye or earshot. I know when he is too warm, too cold, when he's having, just had, or needs a poop, even if he's not in the room. I know when he's apt to wet through, when he's hurting, feverish or seizing, mostly when others don't. On days when he's most vulnerable—in the wake of or lead-up to seizures—I know when a bath is likely too long or cool, or a walk in the sun with wind is too cold. Exposure to the elements can sometimes be stressful for kids like him. Because Calvin can't speak, I've had to become adept at walking in his shoes. I know when he's headed for a seizure hours before it occurs, can sense its omen's and feel in my gut the weight of possible triggers. And yet I find myself biting my lip, reluctant, though failing, to hover too much over others caring for him. Though I don't want to be, I'm good at stepping on toes.

Some say, you have to trust us. I respond, trust is something to be earned. Others say, I love your boy, then go on to verily neglect my son.

As other helicopter mamas of kids like mine will confirm, some folks—whether with empathy, ignorance, conceit, contempt or concern—make attempts to save us. We are told to relax, told not to worry, asked if we are tired (hahahaha!) and told to get some rest. We are told not to get upset in front of our kids lest our outward stress set off a fit. This unsought advice, though likely sincere but perhaps—even if subconsciously—self-serving, brings to mind a favorite quote from a song by Gang of Four:

Save me from the people who would save me from myself.

The rest of the lyric, which is deliciously irreverent and hilarious, but which I rarely quote because it it is also rude, goes:

They've got muscles for brains.*

Something helicopter mamas also hear often is, Everything will be fine.

One dear friend genuinely put it this way:

Calvin is not going to die (anytime soon) ... or maybe he will.

She did not sugarcoat. She did not dismiss. She spoke what I know to be the truth, which in a strange way gave me a sense of calm, knowing in that not-too-unlikely, worst-case scenario I'd have done everything humanly possible to keep Calvin safe. As a helicopter mama, I'd have done my very best.

*Yesterday I took this line out for fear it offended, but then I added it back in for full transparency and accountability, noting what I hadn't originally, which is that it is rude.

Photo by Michael Kolster

where to begin?

Where to begin? I guess by first saying that, since I decreased Calvin's Palmetto Harmony CBD oil from 145 milligrams per day down to 60 mgs nearly three weeks ago, (because I thought it might be triggering a particularly bad spate of seizures), he has had just one complex partial and two grand mal seizures. Furthermore, it has been eleven days since his last grand mal which, relatively speaking, is on the longer side of recent things. So, April is shaping up to be a decent month seizure-wise (again, relatively speaking), especially compared to the madness in March.

I use the phrase "relatively speaking" because when I dug out old calendars I was reminded that six years ago Calvin suffered just thirteen grand mal seizures the entire year in comparison to each of the last five years in which he had fifty or more. But I must also remember that in 2013 he was on high doses of three powerful antiepileptic drugs. I must remember that I cried nearly every day having to peel my psychotic child off of the ceiling regularly. My husband and I agreed that no amount of seizure freedom seemed worth that, really. Calvin's and our quality of life was in ruins, and so we began weaning his meds, which had heinous side effects despite rarely giving Calvin more than a few weeks at a time of seizure freedom. Then, in 2014, we began giving him a homemade THCA oil, which virtually eliminated Calvin's daytime grand mal seizures.

Last Thursday, we took Calvin to see Laurel Sheppard, the nurse practitioner in Dr. Dustin Sulak's Maine office. Dr. Sulak specializes in treating various conditions using cannabis; Laurel feilds the epilepsy cases. The appointment, though long overdue, was worthwhile, if only to serve as a validation of the knowledge I've gleaned by doing my own research. Laurel confirmed my understanding that the dosing range for CBD is vast, from as low as 0.5 mgs/kg of weight up to 30 mgs/kg. I learned that the range for THCA is wider than I'd previously thought. She said that many children are doing well taking both CBD and THCA oils, which doesn't surprise me. Others are doing well adding a little bit of THC. She recommended that our next step with Calvin, after seeing how the recent CBD reduction goes, might be to increase my homemade THCA oil, which I had reduced last fall, replacing the morning dose with CBD, and eliminating the late-afternoon dose all together to see if some of his late-afternoon agitation improved.

Laurel's suggestion seemed like a reasonable one, but I was thrown another curveball: the cannabis flower I use to make Calvin's THCA oil, Chemdog—one which I've been getting reliably for the past five-and-a-half years from our local dispensary—isn't available, at least not right now. Moreover, I'm running low on the oil. So, I spent all day yesterday and a good part of both weekend days trying to solve this dilemma. I contacted a bunch of my buddies in the pediatric epilepsy cannabis world. All of them did their best to help. Suffice to say I found no local caregivers who are growing the strain, nor did I find a consistent, concentrated and compatible THCA oil that I could use as a substitute.

Thanks to an amazing, thoughtful, generous woman at the dispensary, named Danielle, I found a solution I think I can live with, and I am actually kind of amazed that I'm not freaking out: I'm going to try using a different strain, one called Mandarin Cookies, to make my oil instead of good ole Chemdog. Mandarin Cookies is an indica-dominant phenotype said to be rich in linalool and mercene—terpenes thought to be helpful in suppressing seizures. Reviewers laud Mandarin Cookies for its potential to relax and uplift. I'm hoping it might be even better at controlling seizures than Chemdog was. If not, I may be able to go back to using Chemdog once the dispensary harvests it again.

Meanwhile, Calvin's seizure activity has calmed down these past two-and-a-half weeks, but his behavior has seemed to go downhill. He's been more agitated, loud, more restless, and seemingly more headachy. Calvin's behavior has caused me to rethink his Keppra dose, which was already very high before I increased it early last month to account for his recent weight gain and a bad spate of seizures. I fear I may have acted too hastily in increasing it.

So, I sat down at my computer to reacquaint myself with the drug. I was reminded that Keppra's therapeutic range for kids Calvin's age is between 40 and 60 mgs/kg; Calvin is taking 75 mgs/kg. I read that Keppra does not appear to yield much benefit over a certain dose. I am often reminded that most drug side effects are dose related, and that any antiepileptic drug, especially at high doses—including cannabis—can also trigger seizures in some people.

As I sit and listen to Calvin cough and shriek, watch him crook his arms and madly rub his fingertips together, see him clench his jaw, poke his eye, rub his forehead, hear him bang his head against his bed's side panel five or six times a night, I realize his behavior has worsened since increasing the Keppra. So I got his neurologist's buy-in (not that I need to) on reducing his dose in the coming weeks. I'd do it now, but I want a slightly larger window to determine if having cut Calvin's CBD yields meaningful and longer-term results, and I have to decide whether to initiate the new Mandarin Cookies THCA oil first.

And so you see why—between reducing Keppra, evaluating CBD and switching THCA strains—I did not know where to begin when starting this. Having laid it all out in words, perhaps I do now.

Making my THCA oil

love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

fallout

The night my water broke, an ice storm blew through Maine. Ice caked windows and froze shut doors. It sheathed leaves and needles and burdened branches. It glazed streets and sidewalks, treacherously.

I was only thirty-four weeks along in my pregnancy. A fortnight earlier, a bombshell had been dropped by a doctor who had shocked us with the news that my fetus had a brain malformation. Specialists in Boston, worried that a vaginal birth would stress our unborn child further, had arranged for a scheduled C-section to be performed at week thirty-five. Though I didn't feel any contractions, I quickly grabbed a few essentials and donned my down parka, zipping it up tightly over my basketball-sized belly. Michael kicked open the mudroom door which was encased in frozen rain, and we made our way, driving on desolate roads to our local hospital wondering how, in my condition, we'd get to Boston.

When the on-call obstetrician arrived at the hospital, we explained our predicament—our fetus' enlarged ventricles, his possible brain bleeds, the scheduled 35-week cesarean in Boston aside a team of pediatric neurologists and neurosurgeons, plus donor platelets readied if our newborn needed them. Unable to accommodate our serious case, she made arrangements for me to be transferred by ambulance to Maine Medical center in Portland. The ice storm had made it impossible for us to get to Boston; Medivac helicopters had been grounded.

Once at Maine Med, we explained our situation to another doctor, and a game plan was made. Without blood bank donor platelets in the case our fetus—who we had already named Calvin—suffered another brain bleed, I'd have to undergo a pheresis. In other words, I would be the platelet donor for my son if need be. Actively contracting, albeit subtly, I had to sit upright and motionless on a hospital bed for nearly an hour while my blood was syphoned, put through a centrifuge to extract its platelets, then pumped back into me. The pheresis left me with too few clotting platelets to safely undergo an anesthetic epidural without risking a spinal column bleed. Instead, I had to go under general anesthesia to endure the cesarean. As a result, despite my pleading, the obstetrician would not allow Michael in the operating room, which meant neither of us could witness the birth of our fragile son.

Sorrow and worry wrenched my heart. Everything Michael and I had hoped for, wished for and expected of our child's birth had vanished in a blink. Michael wouldn't hold my hand and offer reassuring words. We wouldn't hear our baby's first cries, wouldn't marvel at the sight of our beloved newborn. I would not clutch my babe to my breast, nor would Michael kiss my forehead as I looked into the loving eyes of a new father.

Instead, my body would become void of all senses. Neither of us would be participant, witness nor advocate. No photos, no videos, no memories would exist of the moment our son was born. I'd be left instead with the memory of kissing Michael goodbye and holding his hand as long as I could until we were finally broken apart. Of seeing him standing alone in an antiseptic room as a white-clad mob wheeled me under a tunnel of lights. Of the fear that I might never emerge from the anesthesia to see Michael's face again. Of perhaps never seeing my wee child alive and breathing.

Photo by Michael Kolster

godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

             

A typical grand mal for Calvin, 2011.

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.

Photo by Abduljabbar Zeyad/Reuters

the rest of us

Outside raking, I try to make sense of this effed-up world we're living in. In the cool glow of an overcast afternoon, I work up a sweat turning needles into piles of copper, all the while conscious that wealthy White Christian conservative men (and a smattering of their female counterparts) are brazenly cheating and lying, trying to control, disenfranchise, oppress and legislate the lives of the rest of us.

Who are the rest of us? I'll tell you: women, Black people, Latinos, Native Americans, Muslims, atheists, Jewish people, old folks and the infirm, mentally or physically disabled folks, young folks, students, union members, artists, journalists, teachers, scientists, environmentalists, public employees, poor people, gay, lesbian, bisexual and transgender people, homeless people, former inmates who have done their time and paid their debt to society or should have never been incarcerated in the first place, immigrants, pregnant women, and people who have preexisting conditions like my little boy.

My son Calvin by the way, because of his disability, cannot—nor will he ever be able to—vote; the rest of us must do it for him and for each other, or risk continued disenfranchisement by the powerful few who have nothing to do with the rest of us except to exploit. They have shown us what matters to them, which they will protect at any cost to their constituents and to the earth itself: money, power, control. They have proved incapable of walking in our shoes. Vote them out. Vote now.

fifty-five

Today I'm celebrating my fifty-fifth spin around the sun. Tomorrow I celebrate eight years of writing a blog that I never imagined could garner over a million hits while helping parents of kids with epilepsy wean from their benzodiazepines, navigate the world of medicinal cannabis oils, and understand that they are not alone.

In honor of the milestone, for which I'm most grateful—grateful to my parents for having "mistakenly" made me, grateful for being alive, grateful for being healthy beyond a few achy joints, grateful for, and humbled by, the many privileges I enjoy due to the accident of birth—I squeezed into a favorite t-shirt I haven't worn in years, one that has the number 55 emblazoned on its front.

My mother used to tell me that we never really reach maturity, rather we continue to mature as long as we are alive. As a youngster, I thought that sounded pretty wise and thoughtful, and I fully embraced the notion. Since then I've continued to enjoy getting older. I figure with age comes experience and with experience comes wisdom. At least I hope I'm getting wiser; Oscar Wilde said age can sometimes come alone—yesterday's regrettable senate vote on supreme court nominee Bart (or is it Boof?) O'Kavanaugh was a validation of said premise.

Over time, I've come to consider birthdays as opportunities to explore how I can improve myself and find new ways to contribute to the betterment of the world. This year, I'd like to get back into jogging with the hope of lowering my stress level and strengthening my body, and perhaps fit into my jeans and tops with a little more wiggle room. I also want to use my agency to change the stale political paradigm, want to smash the conservative white-male patriarchy into bits, want to support new faces and voices, and promote progressive ways of managing an ever-changing world. Conservatism and originalism be damned. Nothing is fixed. The only constant is change.

So, as I celebrate another passing year, I hope to remain open and brave, not fearful and closed. I hope to see each day with new eyes ready to explore the beautiful and awful unknown. I hope to embrace humility while remaining fierce in my fight against bigotry, and sturdy in my struggle for justice. Most of all, I hope to keep growing older for a long while, and I aim with my everything to evolve.

earth's oppressions

A blast of sky presses down on me, humidity's weight lingering in my lungs and limbs. Sweat gathers at the nape of my neck, collects under my breasts and trickles between my ribs. The morning air is sometimes white with moisture, its blades of grass beading up beneath my feet. At times I feel it's hard to breathe.

Plodding along I think of Earth's oppressions, not in terms of weight or mercury, but in time and space and lives: bawling babies hastily taken from their mothers' milk; frightened fatherless toddlers teetering between strangers, on the brink of depression and detachment disorder; refugees fleeing untold dangers crammed into rafts and trucks and tiny, frigid cells awaiting ... what?; young boys trapped in a flooded chamber, monsoons coming, oxygen waning; women and girls enduring, suffering, lamenting the control and abuse of sordid men—some they trusted; Whites calling cops on Blacks who are just minding their own business; truth and virtue under fire by diabolical despots and their cronies, here and abroad.

I hang with my boy Calvin who cannot speak, his monthly seizures holding steady just under ten. For now, he seems happy, is smiling a lot and sleeping well; a week ago, the reverse was true. I've been here before, the place where time and space expands luxuriously only to be compressed by increasing seizures. The new moon is coming, its gravity waxing oppressive.

I think of those stranded boys in Thailand, trapped in a cave, exhausted, feeble, unstable, afraid, by now blind as bats to light. What if one were like mine? He couldn't hold a regulator in his teeth; wouldn't know how to breathe. Couldn't swim or scuba dive, unable to escape the watery tomb alive.

And so, as always, Earth's oppressions lead me into weeping then to gratitude—grateful for my time and place, grateful for my non-verbal, incontinent, legally blind, uncoordinated, intellectually- and physically-disabled, autistic, enigmatic, epileptic child.

Calvin, photo by Michael Kolster

longest day

The longest day of the year was followed by one of the longest nights of the year for Calvin and for me and Michael.

A few hours after I had come home, giddy from attending my dear friend Lauren's annual summer solstice party, Calvin began to whimper and stir. I got up to give him his second dose of THCA cannabis oil having earlier expected an impending seizure. Within half an hour he was beginning to writhe, rub his head and cry. I gave him a tylenol, then when that didn't work, I managed to get him to swallow an ibuprofen. Despite my efforts to assuage his pain, he continued to thrash and cry and scream. In bed next to me, he pulled my hair, scratched my neck, pushed my throat, whacked my head, kicked my legs again and again and again. Somehow, I was able to maintain my composure as he flailed for two-and-a-half hours, promising him in whispers and kisses that he'd feel better soon and that I wouldn't leave him. 

It was then that I again thought about the Central American child refugees separated from their parents, some of them infants, others toddlers, left crying alone with no consolation, children who don't understand or speak English, don't understand why they've been marshaled away from their parents by strangers, children who might never be reunited with their momas and papas for weeks, months, years—if ever—the damage and suffering being done in haste by a president and his administration without a plan of action in place.

Yesterday, I heard an audio of young detained children, one of them crying "Papa!" repeatedly, until his/her little voice became hoarse. Hearing their cries made me weep.

Finally this morning, my boy calmed, though never went back to sleep. We eventually got him up, fed him some breakfast, packed his lunch and sent him off for his last day of school. A few hours after we had put him on the bus I got the dreaded call while paying for a special cake I was about to bring to his support staff at his school: Calvin was having a grand mal seizure. His ed tech's voice was trembling as she described how he had vomited during the seizure, fearing he might aspirate. I told them that I'd be there soon. 

On my way I stopped by home and quickly filled two syringes with cannabis oil. Thankfully, the junior high school is less than a mile away, so I was able to give him the oil within minutes of his seizure, a tactic I take aiming to prevent further seizures.

As Calvin slept, his teacher and aides sat with me in the dim Zen Den, named for its bean bag chair and strands of calm yellow lights strung on the walls. As we watched my boy sleep, I told them of past seizures, most notably the forty-five-minute grand mal he had when he was just two. I described how Michael and I had thought he might die that time since none of the emergency meds had appeared to be working, but that it had finally stopped when we began kissing on him.

After almost an hour's sleep on a spongy floor mat, Calvin stirred and awoke. I gave him his lunchtime Keppra, chasing it with a couple of sips of water, then picked him up and carried him out to the car to go home.

Now, as I sit at my desk writing, I can watch him spin in his industrial-strength johnny-jump-up. He is poking his eye, humming, and bubbling up foamy drool. My gut tells me he isn't out of the woods yet, and I wonder if I'll ever get my seizure-free boy back from where these sinister meds and fits took him years ago.

Then I think again of those innocent migrant children separated from their parents, every day their longest day, every night too, their lives likely ruined by the mistreatment this neighboring and prosperous nation has subjected them to. I wonder about the hundreds who have epilepsy (nearly one in one-hundred of us do), wonder how they will fare without their meds, wonder who will hold them when they seize, wipe the blood trickling out of their mouths from bitten tongues, wonder who will whisper away their fear, their pain and tears. I wonder how the reckless president sleeps at night, he who has told his citizenry legions upon legions of lies, the worst of which, perhaps, denies the real grief and suffering these children are having to endure. The potus (the guy is not deserving of all caps) may not sleep well, but he doesn't sleep on a mat or a cot with a mylar sheet under banks of cold florescent tubes in a cavernous, cement-floored, fenced-in holding cell. But I bet he sleeps alone.

And as I wrap this up, my sweet innocent boy rolls into another grand mal, but in the safety and love of his mother's arms in a place we call home.

Calvin after a seizure

vigil strange I kept on the field one night

This year, when I returned to Walt Whitman's poem about burying his son on the battlefield, I tried to understand the cause his boy, and hundreds of thousands like him, made the ultimate sacrifice for: our freedom as Americans. Then I imagined those who have battled in vain for freedoms which never really came their way: people who, along with their families, have never been fully unshackled from centuries-long oppressions, many of which they still face every day in this nation, Americans who are marginalized by the ones in power who make policy, pass laws and enforce them.

I considered, perhaps more deeply, Americans taking a knee during an anthem which ostensibly symbolizes the land of the free. Their voices are stifled and condemned by so-called patriots for asking to be treated fairly, respectfully, humanely. Why do we send our sons and daughters to war if we do not all share in the same freedoms at home? How can one American feel righteous in denying another his or her voice, particularly when unarmed, often innocent folks are getting gunned down by cops in the streets? Their parents and loved ones have to bury and grieve the loss of their children not unlike Walt Whitman did.

This Memorial Day, my hope is that more Americans will finally see said inequity and have the courage to stand up—or kneel—for their brethren, thus honoring those who have died fighting for our most basic and precious freedom.

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

difference in an insular world

A sharp girl in the front row asked me how long Calvin's longest seizure was. She and some of her classmates gasped when I told them it lasted for forty-five minutes. I went on to describe how, because the emergency medications meant to stop the seizure hadn't appeared to be working, my husband and I had thought our son might die. Calvin was two years old. As I panned the classroom, what I saw looking back at me were fresh, young faces wrought with deep concern and empathy.

The sixth graders' other questions were varied, thoughtful and many, curious minds a sign of intelligence:

What was Calvin's first word?

Does anyone else in your family have epilepsy?

Will Calvin ever be able to have a job?

Does Calvin have any siblings?

Who helps you take care of Calvin and do you have a job?

How many kinds of seizures are there?

How do you make a seizure stop?

Will Calvin ever grow out of his epilepsy?

How does Calvin communicate?

I had come to talk to the students about disability and difference, and to answer their questions about Calvin and his epilepsy since he can't do so for himself. When I spoke about cannabis, telling the students how the oil I make from the herb has virtually eliminated Calvin's daytime grand mals while also helping him better endure and complete a four-year-long benzodiazepine withdrawal, one student asked me why marijuana is federally illegal.

There was not sufficient time left in the social studies class to go into much detail, so I summarized by saying that marijuana was outlawed a long time ago (in the 1930s) because of greed and racism. Had I time to explore the nuance I'd have mentioned the corrupt government officials who leveraged fear and racism to justify making marijuana illegal. I would have said that cannabis remains illegal because these same forces are still in play.

I wish I'd had time to delve deeper into marijuana's history and tell them the truth about the deceitful, racist head of the Bureau of Narcotics, Harry Anslinger. I wish I'd been able to tell them about the pressure and collusion from DuPont and Hearst who feared hemp as a rival to their plastics and paper. I wish I'd been able to explain how wrong the War on Drugs is, how hard and unjust it has always been for People of Color and their communities, how criminal it is for our government to falsely insist that cannabis is as dangerous as heroin, claiming it possesses no medicinal properties, while simultaneously holding a patent on cannabis for its neuroprotective and anti-inflammatory properties. I wish I could have told them that the worst people in government and the private prison industry are hell bent on locking up folks—particularly minorities—for low-level drug offenses like simple marijuana possession, and keeping the millions wrongfully languishing behind bars from getting out.

Though I was unable to school the students on the history of cannabis, I hope I may have planted a seed in their brains about an amazing medicinal herb that has gotten a bad rap. I hope, too, that I got them thinking about disability and difference. Perhaps I inspired them to go a step beyond tolerance—because tolerance is not good enough—by befriending and embracing those like Calvin and others who may look, act, sound, dress, speak, live, love and worship differently from themselves. I hope I sparked inside them the desire to stick up for the bullied and disenfranchised and to openly and unabashedly condemn the cruel, unjust and hateful whether they be adults or children.

The night before my presentations, Michael and I watched the film Son of Saul. From its first scene I was gripped and unsettled, witnessing a grim cinematic account of the inner workings of Holocaust concentration camps. I'd seen horrific photographs and films taken of the camps when I visited the Holocaust Museum in New York last May. In my twenties, while backpacking solo through Europe for seven months, I'd visited Dachau. And yet, scenes of Jewish men scrubbing the human mess that awashed the gas chamber floor nauseated me. Still, I clenched my teeth and fixed my eyes on the screen, feeling I should bear witness to their suffering, my own discomfort but a whiff of what Holocaust victims and their families endured. Had the sixth graders already studied the Holocaust I would have told them that children like Calvin were some of the first scapegoats to be rounded up and killed by the Nazis because they were deemed a stain on the Aryan race.

Frighteningly, this world is still rife with this kind of hate and savagery, our own nation led by an insecure man who incites fear, denigrates and scapegoats immigrants, dehumanizing them by calling them animals, a man who maligns People of Color, shows contempt for the poor, mocks the disabled, and enacts policies harmful to every kind of human save the straight, White, wealthy few.

For an hour I spoke to each class of sixth graders fielding their thoughtful questions, their faces gazing at photographs of my son on a dry-eraser board. At the end of the second session, a girl with dark braids and features which I took to be a beautiful blend of races, hopped off of her chair and embraced me. She hadn't asked me any questions, but it seemed she grasped my message, which was one of trust, love, worth and understanding of difference in an insular world.

Photo by Michael Kolster

freedom to move

I am you. —Anonymous

Never apologize for being human. —James, Florida

We love you and feel your long days and sleepless nights. —Barbara

Be well and know I do not send prayers, I send Sistah Strength from my tiny little heart to yours. —Tammy, Virgin Islands

I'm pretty sure I wouldn't even like anyone who would win a Miss Congeniality contest. —Lorry, Maine

Thank you for being real. —Nancy

These were just some of the thoughtful responses to my last blog post titled, my apologies. Several readers couldn't make sense of why I penned such sentiments to the world. The letter of apology was a version of one I had written to a few individuals at Calvin's school, expressing regret for some sleep-deprived, emotionally-spent irritability I had displayed, in part because of a newly installed, apparently malfunctioning security-door system at Calvin's school meant to limit access, ostensibly of any potential school shooters.

Last Wednesday, I'd taken Calvin to school a couple of hours late after he had suffered his now-weekly grand mal seizure at three the same morning. In my exhaustion, having not slept since then, I was easily vexed after finding out the junior high's new entry button didn't seem to be working. Frustrated, Calvin and I had to wait outside in the cold, unnoticed (Calvin is not the greatest at standing still; because of the epilepsy drugs, his body needs to move.) When I was informed that I was, purportedly, the only one having a problem with the system, I became further irritated. Then, when a kind and well-intentioned person suggested she show me how to press the button correctly (it's pretty darn straight forward; it's a button ... you press it) I grew more perturbed. These events—the seizure, the sleep deprivation, the button glitch—were probably what pushed me over the edge of congeniality. Having already been distressed by the recent papering-over of the nice large windows in Calvin's street-side classroom, I went on to lament the tragedy that some boys and men in this nation are troubled to the point that they shoot up churchgoers and schoolchildren. In my mind, what makes matters worse is the notion that teachers be armed, an idea promoted mostly by those with a twisted interpretation of the Second Amendment—that we all have a right to own semiautomatic weapons, high-speed and armor-piercing ammunition—and those who think the answer to more gun injuries and deaths is to have more guns.

At a dinner with friends on Saturday night I shared my frustration about the papering-over of Calvin's classroom windows. I stressed the fact that our kids don't get enough of the outdoors, much less having the sight of trees and sky blocked out at school. Besides, the vast majority of children who are hurt and killed by guns, I learned recently, are not shot in school massacres. Papering over their windows, in my mind, is akin to letting these terrorists and would-be terrorists win; Parisians and Barcelonians don't avoid going to markets, cafes and concerts in the wake of mass shootings, because they want to deprive terrorists of the power to curb their freedom to move.

The image of countless armed guards and gun-packing teachers, and the papering over of school windows brings to mind prisons. Will we do away with outdoor recess for elementary school kids, too? What happens when guns discharge in the classroom accidentally? We all know they do. What if an armed school teacher feels "threatened" by a student? I've no doubt that the presence of more guns in schools will lead to senseless harm and death, predominantly of children of color. One must simply look at statistics, at the legions of Black schoolchildren who are disproportionately and more harshly punished than others, and at the scores of unarmed and innocent Black men, women and children who are gunned down by police while their armed White countrymen are handled with kid gloves; we know that too many White folks, whether consciously or not, wrongly see Black people—even children—as bad, dangerous and criminal.

I think back to those moments at Calvin's school, to when I was called back in because his ed-techs thought he might have suffered a partial complex seizure, to when the principal kindly re-introduced himself to a haggard, exasperated me, to when the door alarm problem was deemed mine to own. In the wake of the events, I wish we didn't have the tendency to jump to conclusions. I wish we weren't driven by fear. I wish there weren't fearmongers and liars and gluttons and powermongers, misogynists, bigots, bullies, despots and creeps to prey upon our goodness and our failings. I wish teachers were equipped with higher salaries, with adequate supplies, and with smaller classes to address the needs of neglected students who might otherwise want to do harm.

I saw a meme recently, one that cleverly and simply debunks the favorite gun-rights' argument, "guns don't kill people; people kill people." The meme reads:

If guns don't kill people, they don't protect people either.

Makes complete sense to me.

I hope people begin to understand the statistically significant fact that they and their loved ones are less safe in homes where guns are kept. I hope folks turn in their guns so we can melt them down. I hope soon we can tear down the brown paper that makes walls out of windows and prisons out of our children's schools. My son already lives in a prison of body and mind that limits his, and our, precious freedom to move.

Learn some facts about school shootings here.

Photo by Michael Kolster