11.13.2018

other's struggles

Back at the grocer. We go nearly every day. Curious kids with their indifferent mothers idly ogle my son. Heedless of my seeing. Clueless of his blindness. Ignorant of his seizing. Unwittingly oblivious of the missing white matter in his brain. Elderly, disabled and homeless folks display their keen insight and compassion. My son hugs them. They make my day a better one.

Between cellophane-bagged grapes and neatly stacked waxed apples, we meet a woman. She says her name is Jane. She's drawn to my son. Calvin knits his fingers madly. Gawks at suspended fluorescents. She's unfazed. He can hear their buzzing. Still, her greeting seems to fall on deaf ears. I tell her he cannot speak. I tell her he seems due for a seizure. Her apple blossom smile withers some.

She and I stand and chat. I keep my son in hand so he won't wander. She tells me of her love of kids and of two ectopic pregnancies. No babies of her own to cuddle, no sons or daughters to raise. Instead, she spent time in children's hospitals giving love and gifts to sick ones. Knowing the struggles kids like mine and their families face, people's petty complaints bother her. I feel her pain.

Aside the grocer's bakery, I envision raging fires scorching acres of my beloved golden state. See burned-out cars abandoned roadside, bleeding aluminum. Regal oaks still stand, though now as blackened skeletons. Charred bodies wrapped in cobalt tarps. Entire neighborhoods, homes, lives, reduced to charcoal, cinder and smoke. I consider immigrants working in the fields not far away. Tireless. Sweating. Picking lettuce, apples, grapes. Backs breaking for little pay so the rest of us can buy fruit and vegetables cheaply. I tell Jane there's no comparing when it comes to others' strife and struggle. Everyone has their burdens others can't always see. People with hidden scars and weights sometimes complain. It's okay.

I muse on humans. We are the same the world over. Love our children. Do what it takes. Hope for better futures. Flee dangers. Seek out food, shelter, water, safety, equality. Desperate and fearful, we migrate for our loved ones' sake. Americans would be no different if faced with famine, war, despots, gangs, murder, rape. Like from burning buildings, we'd escape. Complacency and dispassion lead some to pass judgement. Others follow fearmongers blindly and willingly into thoughts and acts of hate.

I think of prayerful people, certain that their god will save them. So sure of answers to their pleas. Staid in their faithfulness. Good and loving folks whom nature haphazardly and grievously incinerates. Fires can scale the walls that even prayful people make. In god's name, pious war over territory on our precious Earth that has birthed us all. Whose land is whose anyway? If there is a god—I think to myself between plastic-wrapped fish and meat—there is one for all.

My child and I stand in line and wait to pay. He licks the glass beverage case. I wipe and kiss his drooly chin. Pat his head. Run my fingers through his hair. The woman in the other lane glares then averts her gaze. The man behind me smiles and winks, says goodbye and waves. My kid is seemingly oblivious. I'm sure he hears everything. Perhaps he can sense the burning embers others feel, their need to douse or hide their pain.

Camp fire, John Locher, AP

11.12.2018

gut and gumption

It has been over three weeks since Calvin had a complex partial seizure. He has suffered two grand mals this month, the last one being eight days ago. Though October was horrible and chock full of seizures, I'm glad I've followed my gut, which keeps telling me to have faith in his Palmetto Harmony CBD oil. When we first started him on the CBD oil last June, adding it to his Keppra and my homemade THCA oil, it seemed to help Calvin go forty days without a grand mal—about five times longer than his average stint. Shortly thereafter, though, Calvin lost that seizure control, compelling me to take to social media for answers. Some parents advised me to do what is called a CBD reboot, to eliminate the CBD for a couple-few days before reintroducing it at the starting dose. The logic stems from the notion that the body's cells become saturated with CBD, thus rendering it ineffective. Against my better judgment, I tried a mini-reboot back in July, which produced no positive results; August yielded twice as many seizures as July.

In my hyper analysis of all-things-Calvin, I recalled that he has always needed high doses of most of the drugs he has taken—Keppra, Depakote, Onfi, Zonegran, Lamictal, Banzel, anesthesia—for them to be effective. I asked myself, why would cannabidiol be any different?

And so since the mini-reboot, I've continued to slowly increase Calvin's CBD oil every couple of weeks while keeping his Keppra and my homemade THCA oil at steady doses. Calvin is now taking forty-five milligrams of CBD oil per day divided into two doses. Some kids Calvin's weight (sixty pounds) take as little as fifteen milligrams while others take several hundred milligrams daily. The range is impossibly large, making it difficult to know what amount of oil is too little or too much. At Calvin's current dose, I have seen his behavior improve. He is more compliant and, on average, is sleeping better. And though it is yet a small time frame, he has seized less as I increase the dose beyond its previous high in August. I'm hoping this tinkering will lead me to the sweet spot, that silver CBD bullet my husband doubts exists, but one I know exists for other children. Why not mine?

So, I'll keep trusting my gut, using it to guide me. It has been right before. Besides, what else is there? There's no crystal ball, traditional pharmaceuticals haven't worked, we've been told brain surgery is not an option, I don't have faith in the VNS, the ketogenic diet was a stressful, horrible wash, neurologists don't have much to offer beyond increasing drug doses or piling on new ones, there are few solid studies about cannabis and none that I know of on its dosing, and all kids respond differently.

When it comes to my non-verbal son, his epilepsy and its treatment, gut and gumption are really all I've got.

11.07.2018

glowing

This morning, feeling mostly rested from last night's soaking rain, I woke to see the sun's rays reflecting off of a yellow maple onto a wet cedar deck. Everything nearby—the driveway matted with leaves, the lichen-encrusted fence, the garage, the dawn sky—glowed golden. When I got Calvin downstairs I was greeted with the good news that so many women had won their hard-fought races in yesterday's election—White women, Black women, Latina women, Native American women, Muslim women, gay women, republican and democratic women—and that democrats had taken the House. I felt myself glowing.

After a cold, wet, four-day weekend spent indoors with a sick and seizing child, I stepped outside with Nellie welcoming warm wind and sun. Under a sky nearly as clear and blue as the ones in the West, I mused further on the outcome of the election, on a congress finally beginning to reflect more people like me—women—as well as one beginning to mirror the rest of America's growing diversity. I felt hopeful.

Later, when I sat down at my laptop, I came across a photo my sister-in-law had taken of her eighteen-year-old son, Ben, who had just voted in his first election. In the photo he was providing his family with up-to-the-minute election-night results, the light from his phone illuminating the American flag emblazoned on his chest. And although Ben, who lives in Florida, may not be happy with most of the state's results, I see in this photo the afterglow of what was in so many ways a promising election. I was proud to see his civic engagement at such a young age, while lamenting too many so-called grownups who chose not to vote.

It seems in great part that Americans voted for much of what I had hoped for in my last blog post: love, truth, honesty, decency, justice, equality, brotherhood, sisterhood, unity, wisdom, humility, empathy, charity, diversity. Now, I hope those elected can make policy so that not one American goes without affordable healthcare, not one person is denied their human and civil rights, not one person is disenfranchised.

I was also heartened to see that another state, Missouri, voted to allow the use of medicinal cannabis. Perhaps our new congress will legalize cannabis so we can board a plane with Calvin again. Speaking of which, though Calvin had a horrible October full of seizures, and a poor start to November, I'm still hopeful that the Palmetto Harmony CBD oil will help quell them when we find the right dose.

In the afternoon, I took Nellie out for another walk before Calvin came home from school. At the fields I saw a college student—tall, handsome, thick dark curly hair, light brown skin—taking a photograph with a good old-fashioned 35 mm camera. I waved him over knowing he was probably one of my husband's photography students. I introduced myself by name and as Michael's wife. Shaking my hand, he told me his name—Nate—then went on to explain that he was redoing the first assignment, noting that Michael's class is his favorite at Bowdoin, so he wants to put in extra time. When I asked what the assignment was he said, "light," motioning with an extended arm to the sky at my back. I turned to see that cumulus clouds had moved in above us and at the horizon, their puffy edges skirted in blinding white—silver linings—from the sun passing behind them. Along with everything else today, the sky was glowing, which I took to be a good and welcome omen.

Photo by Lisa Kolster

11.05.2018

on voting

vote for love. vote for truth. vote for honesty and decency. vote for justice, equality, brotherhood, sisterhood, unity. vote for strength in diversity. vote for equal rights, opportunity and protection for all human beings. vote for wisdom and sanity. vote for humility. vote for empathy and charity. vote for democracy.

vote against hate. vote against deceit. vote against greed. vote against racism, misogyny, bigotry. vote against fearmongering. vote against divisiveness. vote against conceit. vote against ignorance, disenfranchisement, oppression, intimidation. vote against corruption, nationalism, oligarchy and autocracy.

11.04.2018

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.

10.31.2018

halloween past and present

On the eve of this Halloween we woke to a nightmare; Calvin had one of his night terror-pain episodes—an hour or so of screaming and writhing in what seems is excruciating pain. Not knowing the source of his misery, I first gave him an acetaminophen suppository. When that didn't work, half an hour later I gave him ten milligrams of Palmetto Harmony CBD cannabis oil rectally. I crawled in bed with him expecting him to continue writhing, but he fell right to sleep, his arms wrapped tightly around my neck.

Twelve years ago, on Calvin's second Halloween ever, he underwent a circumcision, with the hope of stopping the urinary tract infections that had triggered his first two grand mal seizures. We called that one—not endearingly—Halloweenie.

We've spent a couple-few other Halloweens in the hospital enduring 72-hour EEGs, and on others we spent upstairs nursing Calvin after seizures.

It has only been in the past three years that we've taken Calvin door to door trick-or-treating, and even then we only go to five or six nearby houses. Calvin is totally unaware of the holiday, cannot hold a bag, can't unwrap the candies, doesn't anticipate or delight in dressing up. If he is doing well enough, we take him nonetheless, just to feel some semblance of normalcy. We selfishly do it for our own benefit and because we think the neighbors enjoy seeing him.

Tonight, in light rain, we hit three homes around five o'clock; our other neighbors were still at work. Calvin rocked his manwitch (wizard) costume, on which I didn't spend a dime. He fared better, probably, than any trick-or-treat outing yet, though became weary quickly, probably from the nightmare on the eve of Halloween.

click on any image to enlarge.

10.29.2018

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