in the absence of words

When blowing out candles or spotting a falling star, I usually wish for Calvin's seizures to disappear. Michael, on the other hand, says that if he could change anything about Calvin, it would be that our boy could speak, mostly so that he could tell us the source of his misery. I can't disagree.

Last night, Calvin ramped up into a familiar and distressing episode in which he writhed in pain, screeching, moaning and screaming for nearly two hours. As soon as I saw it coming on, I gave him two pain medications, and when those didn't work I gave him extra homemade THCA cannabis oil. Taking turns in bed with him, Michael and I did our best to comfort and console him while trying not to get hurt ourselves. Calvin, who is nearly five feet tall, has no concept that his flailings can hurt others. To avoid getting bopped by an errant fist or poked by a rigid finger, I shut my eyes tightly, curled my lips over my teeth and pressed them together, then held my hands in front of my face attempting to absorb my boy's lunges and desperate, clawing embraces.

Ninety minutes into the episode, which I am fairly certain was a migraine brought on by a bout of latent benzodiazepine withdrawal, I was able to cradle him in my lap while resting my head against the end of his bed. Ten minutes after giving him the THCA, he fell asleep with his arms above his head wrapped loosely around my neck.

Afraid to move lest I wake my boy, I laid in the awkward position for an hour. There, in the silence of darkness, I thought about the film Michael and I had just finished watching, Eat That Question: Frank Zappa in His Own Words. In the film, which features excerpts from interviews with the prolific composer-musician-entertainer, Zappa muses on freedom and free-thinking. Some of the things he said struck a chord with me:

"I hate to see anybody with a closed mind, on any topic."

"Any sort of political ideology that doesn't allow for the rights, and doesn't take into consideration the differences that people have, is wrong."

I thought about Calvin and his inability to access in-person or remote learning during this pandemic. I thought about disabled Americans in wheelchairs who, for instance, still don't have equal access to train and air travel. I thought about how the LGBTQI+ community is treated by this administration and others in this nation, and how Blacks, Indigenous, Latinos, immigrants, refugees, and Muslims are treated on the whole. Zappa went on to speak about morality in a way that, as a non-religious person myself, deeply resonated with me:

"When you have a government that prefers a certain moral code derived from a certain religion, and that moral code turns into legislation to suit one certain religious point of view ... and if that code happens to be very, very right-wing ... well, then [whoever opposes it] is [considered] an anarchist."

One panelist challenged him on this assertion by saying, "Every form of government is based on some kind of morality, Frank."

In clarifying, Zappa replied, "Morality in terms of behavior, not in terms of theology."

Zappa's response had made me smile.

While still in my embrace, I mused on Calvin, a boy who is incapable of pondering any god or subscribing to any religious dogma, and yet is the purest being I know. He has no words to pray, no aberrant behavior which could be considered sinful. He can't hope for or contemplate salvation, or wish on a star. I thought about the righteous, honest, loving, accepting, charitable people I know who are not religious, then contrasted them in my head to some of the hideous, bigoted, greedy, deceitful folks I know of who insist on calling themselves Christians.

As I began dozing off, I went back to wishing Calvin had the words to tell us what is wrong. If only he could express himself so we could better help him. Despite that disadvantage—or perhaps owing to it—at that moment I felt grateful, as his mother, to be able to care for him from a gut-instinct, cellular level unlike anyone else can or ever could. I keep my mind open to what Calvin's presence affords me to see and learn about the world. He informs and shapes my views on otherness, bigotry, freedom of movement and speech or—as too many in this straight, White, Christian, patriarchy experience—lack thereof. Thank goodness for other strong voices which are resistant to White nostalgia, chauvinism and puritanism, and are fighting to bring about change.

Slipping back into bed with Michael, before drifting off to sleep, I imagined my favorite of Zappa songs—the wildly irreverent ones, the zany ones, the impossibly complex and bluesy ones—in particular one called Watermelon and Easter Hay. The song is gorgeous and, like Calvin, it doesn't have any words.

                                       Turn it up, close your eyes and have a listen ... and maybe even weep:

              

ridicule

When I attended elementary school in the late sixties and early seventies, children like my son Calvin were sequestered to a separate cinder block building across the parking lot. They rode the short bus. The rest of us kids rarely caught sight of them. Some students called them all the names you'd imagine. Today, my son spends most of his time in his high school's Life Skills (special ed) classroom at the end of the hall. He is seen in the corridors and cafeteria, though is understood by few. In part because he is nonverbal, most of his typical peers and their teachers cannot grasp how complex of a child he is. In this busy world, perhaps they haven't the time or inclination for true understanding. I wonder sometimes what disparaging remarks some students have made behind his back. Though I imagine most of his classmates are kind, no doubt there are a few who whisper insults and slurs, mocking his disability like a certain crude official who somehow got elected.

In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.

At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery. 

In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages. 

Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.

The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.

I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.

My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.

here and there and in-between

Tommy Orange. That's the name of the young Indigenous American who authored the novel I'm reading called There, There. I'm only a couple of chapters in, but already I'm engrossed with his artful storytelling of people and place. A native of Oakland, California, where his story unfolds, Orange references a quote by Gertrude Stein in which, on a return trip to her beloved Oakland forty-five years after first having left it, she describes with painful childhood nostalgia that "there is no there there."

Stein lamented that Oakland was no longer a place where a child “could have all anybody could want of joyous sweating, of rain and wind, of hunting, of cows and dogs and horses, of chopping wood, of making hay, of dreaming, of lying in a hollow all warm with the sun shining while the wind was howling.”

In Stein's mind and in reality, the place had changed, as all things inevitably do. But my sense is that modern Oakland's inhabitants, like the ones in Tommy Orange's novel, believe there remains much "there," there, though perhaps of a different kind.

I was reminded of Stein's quote when I read a meme a friend of a friend had posted on social media. The manifesto read:

Welcome

You came here from there because you didn’t like there, 

and now you want to change here to be like there. 

We are not racist, phobic or anti what-ever-you-are, 

we simply like here the way it is and most of us actually came 

here because it is not like there, wherever there was. 

You are welcome here, but please stop trying to make here like there. 

If you want here to be like there you should not have left there to come here, 

and you are invited to leave here and 

go back there at your earliest convenience.

The little blank box below the meme compelled me to comment. I first noted how ugly, poorly written, racist and xenophobic the manifesto is. I should've added that is it hypocritical. I protested the meme's perceived targeting of Black and Brown immigrants and refugees (Midcoast Maine is home to a growing number of African immigrants, particularly from Somalia). I went on to state that people come here fleeing war, famine, poverty, oppression, violence and genocide, not to seize this nation like its first colonizers did—settlers who sparked a bloody pogrom of its Indigenous. And I condemned the use of the term "what-ever-you-are" (tellingly, not "whoever-you-are") as a bigoted one.

The only constant is change, I said, the places in which we live in perpetual flux. I asserted that immigrants help us see the world through new eyes, challenging our assertions and our view of the status quo and, perhaps, encouraging us to see how we might become better people through love, compassion and charity for others who are different from ourselves. Diversity is strength, I added, variety the spice of life.

Regrettably, rather than engage in discourse, embellish, defend or concede their stance, the person who shared the meme blocked me. Initially I regretted that perhaps I'd been too harsh. 

After posting my comment to the meme, I learned it had been defended as simply a remark to people moving here from nearby states. The argument seemed flimsy at best, duplicitous at worst, so I did an image search of the meme to see what more I could glean. I found American flags posted in the footers of the memes along with warnings such as, No amnesty! Go back to the shithole! Go back to Suckistan! These sentiments confirmed for me the meme's intended target: those who are far from your average Vermonter.

Pondering it further, and looking to Calvin and his disability to inform, I'm reminded of the ways in which some strangers gawk at him. I remember the way I felt—and sometimes still do even after living in Maine eighteen years—like such a foreigner here. It's in the way some folks are watchful and guarded, the way we—as adopted San Franciscans—don't always fit into the literal and figurative landscape which, in certain time and space, can be sober and conservative. I realize that, even if the meme-manifesto were speaking only to people from other states, it's still an unwelcoming, protectionist, hidebound dispatch. It still says, "Stay away!" and "You're not like us!" and "You're not welcome!" and "Go back to where you came from!"—each caution a far cry from the road sign staked in the shoulder of the turnpike upon entering Maine which says to residents and visitors, "Welcome Home."

And as I read and transcribed those postings, I recalled the same hateful rhetoric which spews and echoes from the White House. Those sentiments do not embody the America I love, nor the one I'm proud of. And I realize folks who isolate themselves, who are averse to change and who have qualms with others are fearful of the unfamiliar and unknown. But I'm grateful for this ever-changing nation, and of new neighbors from faraway places. I'm grateful for the here and the there and the in-between.

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

empathy and betterment

Though the grass is green, this dry spell has the shrubs curled up and thirsty. In their withering, I see myself, stressed and brittle. This journey as the mother of a child like Calvin—a teen who is legally blind, incontinent, nonverbal, physically and cognitively impaired, beaten by seizures and the drugs meant to thwart them—is a hard one both physically and emotionally. I'm chronically sleep deprived, burdened with worry, at times gripped by fear, anxiety and the shadow of devastation and despair. I wish I could somehow flee this reality. My mind is constantly buzzing with dour, unanswerable questions:

when will Calvin's next seizure be? will he choke on a piece of food? will he trip over a chair, run into a wall, fall down the stairs? do his bones ache from growing so fast? will he ever be able to tell us yes and no? will his various caregivers love him, keep him safe from harm? will he get good therapy at school? will he suffer another pain episode? will he ever be calm again? will he outgrow his seizures? will he die from one?

It appears that these burdens and worries most people don't fully understand. I see evidence in the scowls and puzzlement of strangers, in the way some folks avert their eyes when passing us, in the ways we have been dismissed or patronized by smug doctors, hospital nurses, and a handful of school employees over the years. I've little doubt that in my assertive, hypervigilant, helicopter mama-ness, I have haters and eye-rollers. There are those who don't take me seriously, think I'm oversensitive, inflexible, overbearing, unhinged. There are those who run when they see me coming, or who regularly assume the conspicuous and irksome cover-your-ass posture and pose. I wish all of them could walk in my shoes.

As is true with most of this nation's disenfranchised, misunderstood communities—the Disabled, People of Color, LGBTQI people, Muslims, asylum seekers, immigrants—Calvin and I are sometimes regarded with caution, mistrust and fearfulness, even perhaps contempt. I attribute this mistreatment to ignorance and a resulting empathy gap, an inability by some to more fully understand the struggles those on the margins of majority straight-White-Christian-able-bodied society endure, though all it really takes is openness and humility, to listen well and put oneself in other's shoes. But perhaps it's easier to avoid doing that, to stop short of admitting privilege, and less upsetting to avoid acknowledging ugly truths. But denial and indifference to the hardships of others gets us nowhere—as individuals, as communities, as a nation—on the path to betterment.

Wednesday morning, over coffee and a tasty blueberry scone at our favorite Dog Bar Jim cafe, a friend and I discussed the wave of asylum seekers from Angola and The Democratic Republic of the Congo whom our town has recently aided and absorbed. She recounted a conversation she'd had about the African soccer players who have joined the high school team, some who are quite good. Apparently, some parents are bemoaning the amount of playtime the asylum-seekers are getting (I can't help but wonder if their reaction would be different if the students were from Italy or England). When my friend's own soccer-playing son questioned it, she offered him an analogy: if he were to transfer to a new school with weaker players, he might get lots of playtime, too. A thoughtful kid, he understood.

My friend and I went on to discuss how helping asylum seekers is not the zero-sum game some purport is true. For example, we can also help our homeless neighbors and veterans, and we do. Furthermore, asylum seekers, once they're cleared to work, often fill the grueling, dangerous, tedious jobs many Americans don't want—harvesting crops, packing meat, caring for the elderly in nursing homes. My friend told me of a refugee physician who is driving a taxi just to make ends meet.

After our coffee date, I imagined the asylum seekers playing soccer with my friends' kids—one of a million things my son will never be able to do. Some of them speak four or five languages, having picked up Spanish and English on their journey north from Brazil. Many, if not most, traveled thousands of miles through South and Central America having escaped life-threatening circumstances back home. On their trek they survived beatings, muggings, hunger, thirst, and five months of travel on foot, at times through dense forests dark as night, stepping over the dead bodies of other refugees who would not make it to the USA. The ones who made it here are strong, tenacious survivors who likely have what it takes to make the best Americans. And yet, because of fearmongering and ignorance, they are sometimes met with animus and contempt, perhaps even envy and hatred. With this thought I imagine Calvin and the folks who seem to see him—without understanding his purity, love and struggle—as a freak, aversion or contagion.

I wonder what would happen if asylum seekers had the chance to tell their stories. Who would listen? Who would understand? Will these refugees, like Calvin, inspire some of us to become better people, better members of society? Will some of them give rise to other, better soccer players? Who, upon hearing their stories, would feel empathy and embrace them? And who would stand their ground, unmoved?

Carolyn Cole / Los Angeles Times

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

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.

leaving home

Every day I hear or see something that reminds me how much we, as Americans, take for granted in this place we call home. 

Yesterday, the reminder was a social media comment about refugee and immigrant children being torn from their parents—even an infant suckling at her mother's breast—and being thrown in cages and behind detention fences. An acquaintance posted her opinion on the matter saying, "A loving mother would not put her child in the situation that would cause them to be parted. A selfish mother would play that game."

Her comment reminded me of those contemptuous folks who love to throw around the flabby platitude, race card.

I told her that if she spoke to some of the mothers fleeing other nations she would learn how wrong she is.

Later, while I was watering a parched garden, it occurred to me how spoiled some of us living in this nation are. We enjoy so many luxuries people in other countries only dream of—indoor plumbing, heated homes, fifty-seven million kinds of breakfast cereals, chips, wine, beer, coffee, tea, candy, cheese to choose from. Many of us have pets, cars, bicycles, warm clothes, cozy beds, doctors, medicines, computers, smart phones, jewelry, handbags, toys, sports equipment, table linens, gas stoves, porcelain sinks and bathtubs, pillows, wool blankets, shoes for every occasion, safe streets, good hospitals, nice restaurants, decent schools. Even so, we hunger for the newest apps, trendiest fads and latest gadgets.

What seems clear to me is the abysmal lack of imagination and compassion in the minds and hearts of those who condone the hasty and horrific separation of children from their parents—families who have left their homes and communities risking their lives to make it to a nation where life might be safer and better for their families. 

As with most trying situations, I think of Calvin. I imagine living in a country where Calvin has no access to medical care or treatment for his seizures. I imagine his epilepsy burning out of control and bringing him to the brink of death. I imagine a neighboring and prosperous nation offering great promise in treating his condition. What would I do? Might I risk fleeing to that land for the sake of my child's life? Perhaps I would. 

I then imagine living in a war-torn country where good people are extorted, children are regularly kidnapped and forced into sex work, gangs and militias, where mothers and daughters are raped, where food and water are scarce, where neighborhoods are gassed and shelled, where men are murdered, where homes and towns are burned to cinders. Might I leave home with my children to a neighboring and prosperous nation, leaving everything behind and risking it all for a chance at living free from fear and near-certain peril? Yes, I think I would.

When having a similar exchange on social media last year, a friend told me that he would not be a refugee because, "it is not in his upbringing or heritage" to do so. He went on to explain that he would not flee his homeland, but instead would remain to "make it better." Perhaps it is easier for folks to imagine this strategy having had no children. Or perhaps some suffer from an inability or unwillingness to imagine the grim reality of living in a war zone. Or maybe there are other factors which, though I've racked my brain to unearth, convince some that protectionism in the form of cruel and unusual treatment of children is how we as Americans should roll.

Today I read my friend's blog, a moon worn as if it were a shell. In it she posted a poem she'd read on another blog. She asked her readers to pass it on:

Home

no one leaves home unless
home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

~ Warsan Shire

I don't know what the answer is to our immigration dilemma. I do know it is wrong, harmful and dangerous to separate these children from their parents. And though I am not Christian or religious, I dig what Jesus preached and do agree with every word that Father James Martin has to say. We need to show humility, love and compassion for those fleeing the scourge of gangs, extortion, murder, rape and starvation in neighboring and faraway nations. They are our fellow human beings. At the very least they deserve loving kindness and dignity.

life sucks, except when it doesn't

At just past one p.m. it's sunny and thirty-five degrees. No school and no nurse means a long day with Calvin, who has been ramping up to a seizure for several days, albeit in the midst of his best month-long stretch in the past year and a half.

Despite the gusty conditions, I decide we should venture downtown, so I bundle up the two of us and set out. Our first stop is Morning Glory health food, a small store wonderfully crammed with items leaving little room to move. Today, it's packed with shoppers perusing the aisles and waiting in line to purchase their goods. All I need is yogurt, but Calvin keeps trying to drop to the floor making it difficult to wait in line to pay. With my knee in his back to keep him upright, I notice our friend Daphne who, upon seeing me struggling with my stubborn boy, offers to let me cut in line. The two women behind her don't seem too happy at the notion, so Daphne buys the yogurt for me. I tell her that intend to pay her back doubly.

The main reason we've come downtown is so that Calvin can get in some walking beyond the small and repetitive loops he does inside the house. So although he's acting a bit obstinate, I choose to try him on the sidewalk. Flipping up his hood, I grasp his hand and begin walking into the frigid wind. Every few yards I wipe drool off of his rashy chin with the extra kerchief I grabbed before we left. At the end of the block we greet the same young homeless man we'd seen a few weeks back when the weather was springlike, and to whom I'd given a fistful of change I'd saved up in my purse for that very moment. The man looks to be no more than thirty. He is bundled in layers to ward off the cold, though still looks as if he might be shivering. I hope his beard helps to keep him warm. I tell him that this time I'm tapped out, but that it is nice to see him again. Then we bid him so long and continue on our way south.

Calvin walks four blocks to Local Market—further than he's ever walked with me downtown, and without balking once. We sit for five minutes to nibble on some wild rice, cranberry and edamame salad, and share a milk chocolate salted caramel. On our way back up the street we greet the homeless man again.

"I don't have cash but I do have a credit card," I tell him, "Can I buy you a sandwich at the Big Top?" referring to our favorite deli. "Come with us."

He agrees, folds up his cardboard sign and sets his plastic jug of water on top. When I ask, he tells me his name is James. I introduce myself and Calvin, explaining that James is Calvin's middle name, in part because we like it and it sounds good, in part because it's his dad's middle name, but mostly in honor of four James we know and love: Michael's dad, Michael's best friend in high school who died from leukemia, Michael's colleague, Muller, and our dear friend Garzelloni in San Francisco. Right then, Calvin attempts to drop, so I tell James about his epilepsy and how I am more than half expecting he might have a seizure tonight.

James tells me that someone very dear to him had epilepsy and died too young after having a grand mal seizure followed by a heart attack. Looking into his sunken eyes, I express my sorrow and ask when it happened. He tells me, and I can begin to imagine how difficult it must have been for him, wondering if it was what put him off track. I am reminded how the world should never judge folks who are homeless or struggling and asking for our help; we can never know their reality unless they tell us.

As we approach the Deli—my drooling, wobbling, nonverbal, incontinent, seizure-prone son toggled to me—James and I agree that life sucks, is hard, and that sometimes it is good. We express our shared contempt for the apparel line called Life Is Good, with its shitty little graphics of sun rays and flowers and Labrador retrievers and beach chairs and happy-as-fuck stick figures. He holds the deli door open for us and, as we squeeze by a crowd of other customers, I ask him what he wants to eat. The deli owner, our good buddy Tony, stands behind the counter and greets us.

"Can I have a bacon, egg and tomato on a bagel for James," I say, gesturing to my guest.

Tony, being one of the most generous guys I know, charges only two dollars to my card. Thanking him, I turn to James and say that I'd like to join him for lunch but that Calvin is pretty spent and not very good at sitting still. I pat James' shoulder and he smiles when I tell him it's nice seeing him again, to take care and I'll see him around. As I leave the deli, I wonder if I should turn back and try Calvin's patience; if I can find James again, next time I will.

Calvin makes it back through the health food store to the parking lot in the rear. When we reach the car he smiles (with relief?) and I praise him for what a stellar job he has done walking eight-plus blocks, and so willingly; six months ago he'd drop down after less than one block. My boy beams as I bend down to kiss his face repeatedly. Next to us, a younger woman—one who I think must be a mother—drives past in a minivan. Glancing out of the corner of her eye, she grins at us.

Life sure sucks. Except when it doesn't.

A similar scene from four years ago.

cityscapes

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

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

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

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

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

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

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

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

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

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

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

Click on any photo to enlarge.

homebodies

From Wednesday:

Yesterday afternoon after dropping Calvin off at school, I was left with just enough time put tulip bulbs into the ground and walk Nellie before my boy came home on the bus. This morning before dawn, as I laid next to him after his grand mal seizure, I was thinking about those precious tulip bulbs—their smooth, almond flesh cupped in thin skins nestled carefully into Mother Earth dark and moist as coffee grounds.

Sadly, today we were homebodies again. Going nowhere.

In his post-ictal phase, Calvin shivered, his teeth chattered and his palms sweat. I ache for him. I wonder if he feels pain, fear or anxiety before, during or after these attacks. I can't know for certain, but by the look on his face sometimes, and by his behavior and the sounds he makes, it is safe to assume that he does.

But he slept a little, while I remained mostly alert next to him taking in the sounds of a waking town, of birds chirping, cars passing, of Michael shuffling around downstairs putting on the coffee.

It's impossible for me not to think about the election these days, especially in a darkened room while stone cold awake. Perhaps it's partly what has exhausted me, besides Calvin being a handful of late. I closed my eyes and recalled the humorous and apt Trevor Noah video explaining the outrage over Trump's offensive words and implicit crimes against women which were caught on tape. I recounted a recent exchange I had about said offense. I wondered how it would be if this narcissist of a man—one so utterly lacking in good character and humilty—were to lead our nation, a man who regularly and publicly denigrates women and minorities, name-calls, incites violence, stiffs his contractors and employees, endorses torture and war crimes, threatens adversaries, cheats, lies, and brags about sexually assaulting women.

From here, it doesn't look as though he's going to make it to the Oval Office; It seems as though all of the people who were silent for so long while he threatened to deny refugees entry because of their religion, called Mexicans rapists, mocked a disabled reporter and threatened to sue others, initiated and, until recently, perpetuated the racist birther movement, and who refuses to renounce white supremacists, are finally disavowing him over his behavior towards women. This disavowal is ostensibly on behalf of their mothers, daughters, sisters and wives; I guess these same folks must not know—or care about—any Muslims, Mexicans, Blacks or disabled people.

As I embrace my son, the light beginning to peak from behind the blind, I think of the boys I see riding bikes down the street. I think of the young college students who pass by and smile on their way to class or practice. I think of the children who will one day run this country. And though—most regrettably—none of them will be my son Calvin, I hope it will be those who are kind to strangers, who welcome progress, who love, understand and value people who are different from themselves, who want our world to be inclusive, open and benevolent, rather than exclusive, shuttered and suspicious. I hope our future leaders will be folks who understand the importance and pride in helping others less fortunate, and who truly embody our most cherished notion: that all of us are created equal, even homebodies going nowhere, like me and my little pip, Calvin.

Photo by Michael Kolster

in the same boat

A brown-haired boy in the back of the room raised his hand and said to me, “It must be hard.”

I asked him if he meant hard for me or for Calvin. He answered, “Both.”

“Yes, it is hard,” I replied, trying not to lose my composure.

I mentioned my sleep deprivation and the difficulties we face because Calvin can’t speak. I explained that it was hard seeing my son suffer so many ills and have seizures and have to deal with so many drug side effects. Then I thanked the boy for his thoughtful sentiments.

The group of students was the third to attend my presentation at the junior high school down the road from our home. I’d been invited back a second year to talk about Calvin and epilepsy and disability on their annual Civil Rights day. This last of three classes had just come from a presentation about the Holocaust given by an eighty-three year old survivor.

For forty minutes each, I projected photos of Calvin on good days and on bad ones, on the day he was born, nestled in his plexiglass isolette and hooked up to C-PAP tubes (continuous positive airway pressure). I flashed shots of my son swinging and smiling and signing for “hug” amidst too many photos of various drugs.

They asked me things like:

What is Calvin’s favorite food? How does he communicate? Is he coming to school here next year? How do you know when he is going to have a seizure? Does Calvin have friends? What does he like to do? Is Calvin your only child? How did you choose his name?

Surprisingly, none of them asked me questions akin to the ones gradeschoolers have, such as:

Do seizures hurt? Can you die from a seizure? Can you have seizures before you are born? Will Calvin ever outgrow his seizures? Will Calvin ever be able to stop taking medicine? What happens if a seizure doesn't stop?

At the end of my presentation, two students, a sixth-grade boy and girl, told me quietly that they have epilepsy. The boy, in appreciation of my talk, gave me a fist bump and a thumbs up.

At one point, someone asked if people make fun of Calvin. I told them that I didn’t think Calvin was teased at school, but that at the grocery store I often see strangers gawk at Calvin and, in the past, I've had to endure scornful comments about my clamorous boy.

At various times during my presentations I spoke of the difference between tolerating people who are seen as different—like my boy—and embracing them. I went on to emphasize how we are all born as equals, how we all come into this world loving, and that only later do we learn to hate and disparage. I encouraged the students to be kind to others who are different from themselves, who might have different hair, different colored skin, an unusual accent, come from another country, live in a different kind of house, wear different clothes, practice different religions or have a disability like Calvin. Regrettably, I failed to include LGBT people and people with different gender identities. Then, I read a favorite quote by Martin Luther King, Jr.:

We may have all come on different ships, but we're in the same boat now.
Read more at: http://www.brainyquote.com/quotes/quotes/m/martinluth132359.html

We may have all come on different ships, but we're in the same boat now.

I went on to talk about advocacy. I urged them to not be afraid to challenge authority, but to understand, for instance, that they or their parents might know as much or more about themselves as their doctors do. I urged them to stand up for themselves and for others, to confront bullies on underdogs’ behalves.

It was at that point when one of the teachers recalled the earlier presentation by the Holocaust survivor. She explained to the kids that if it had not been for all of the wonderful people who had come to his aid before, during and after his torment in the concentration camps, that he might not have survived to tell his story.

I took her comment further, explaining that if enough people had rejected the rumors and lies about their good Jewish neighbors and citizens, had they not feared or had contempt for them, if enough folks had, instead, stood up for them early on, then perhaps there would have been no Holocaust.

Delving deeper, I appealed to the children, telling them that I hoped they would never judge someone simply because they were different. I hoped they would step out of their comfort zone and get to know and embrace people who are different from themselves and that, as a result, they might realize they share more in common than at first glance, and that they’d learn new things and grow and live a much richer life as a result.

Lastly, I told them that if someone complains of being bullied or mistreated, they should listen and believe. I said I hoped that if they heard someone—anyone—talking trash about someone because of their race or religion or disability, for instance, that they should speak up to call out the wrong, and go to that person's aid.

After three hours at the junior high school, I left thinking about the importance of our civil rights and the debates I’d had recently about the Black Lives Matter crusade. I became disheartened recalling the cascade of intolerant and misinformed comments about the BLM movement, which I believe is absolutely righteous and most vital to the health of our nation and our citizenry; if only more white people would get past their self interests, embrace their Black American brothers' and sisters' cause, and jump on board.

I began thinking of the Republican presidential nominee again, and his penchant for for hateful, divisive, fearmongering, accusatory, inflammatory rhetoric. I wondered if Trump has any close Muslim, Mexican or African American friends. I have a hard time believing so.

And then I smiled at the thought of the students and their malleable brains, and the compassion on their faces when I spoke of Calvin and the hardship he endures. I hoped I'd made a difference in how they see unfamiliar others who love and share their remarkable world, and who travel on the very same seas.

Banksy

lessons on war

Today I readied Calvin for his school’s Civil War day. The students were allowed to choose sides, to soldier for either North or South. I clad Calvin, no doubt as a Yankee, wearing a navy henley with metal buttons that I’d bought at Salvation Army, then put on his matching canvas cargo vest and rugged boots. Just before we put Calvin on the bus, Michael lovingly instructed Calvin to go kick some Confederate ass. As the bus pulled away, I wondered what the school might be teaching the students about the Civil War, about war in general, and wondered—doubted actually—if they'd be focusing much on slavery's part.

Calvin is borrowing a Union cap for the day. He’ll be all dressed up in his uniform just like the other girls and boys, and they’ll wage a fake Gettysburg battle. Unlike the others, however, he’ll be oblivious to the lesson. He won’t learn about the bloody conflict between the boys and men from the Northern states and the boys and men from the South, about the vicious clash over slavery, about the Confederacy's stubborn and greedy refusal to end the barbarous institution.

This morning as I dressed Calvin, I heard a story on National Public Radio about President Obama’s visit to Hiroshima, the first visit by a sitting President since the United States dropped atomic bombs on two Japanese cities in August of 1945 killing as many as 220,000 Japanese and Korean men, women and children. Yesterday, I’d heard an interview with Setsuko Thurlow, a survivor who had been a thirteen-year-old schoolgirl when the first bomb was dropped. She described the horrific event:

In that moment, I saw the bluish-white flash in the windows.
 
And the next thing I felt was floating in the air—obviously the blast of the bomb flattening all the buildings in the city. And the building I was in was falling, and my body was falling together with it. So when I regained my consciousness, I found myself in the total darkness and silence. I tried to move my body, but I couldn't, so I knew I was faced with death.
 
Gradually I started hearing faint voices of my classmates who were with me in the same room in the dark. They were whispering, mother, help me. God help me. I am here. I can still hear the voices.
 
Then all of a sudden, a strong male voice said, don't give up; I'm trying to free you. And somebody was shaking my left shoulder from behind. And he said, you see some sunray is coming through that opening; get to that direction as quickly as possible. Crawl.
 
So I crawled in the total darkness, and I got to the opening. And by the time I got there, the building was on fire. That meant most of the girls were burnt to death. Although that happened in the morning, it was already very dark, like twilight. And the two other girls managed to come out, and three of us looked around. And in the darkness, I could see some dark moving objects approaching to me. They happened to be human beings shuffling from the center part of the city to where I was.
 
They just didn't look like human beings. I called them ghosts, ghost-like people because their hair was standing up. They were covered with blood and burned and bludgeoned and swollen, and the flesh was hanging from the bones. Parts of their bodies were missing, and some were carrying their own eyeballs in their hands. And as they collapsed, their stomach burst open, intestines stretching out. Everybody was slowly shuffling. Nobody was running and shouting for help. Nobody had that kind of physical and psychological strength left.
 
Well, we three girls were reluctantly in good shape. We could walk. We could carry. So we went to the nearby stream and washed off the blood and the dirt from the bodies. And when the darkness fell, we just sat on the hill, and all night we watched the entire city burn.

Her story moved me to tears, and as I helped put Calvin's thin arms through his sleeves, I thought about war and about murderous bombs with names like Little Boy and Fat Man. I lamented domination, racism and bloodshed, demagogues and bullies, fearmongering, jingoism and powerlust, and I shudder to imagine a reckless, callow, bigoted, impulse-driven, insecure man like the Republican presidential candidate, Donald Trump, with his finger on the trigger of our nuclear arms.

Then I ponder my little boy, his missing white-matter, his seizures, poor vision, volatile behavior, protracted development, and wonder what it was that all went wrong. Was it some sort of chemical that blunted his brain? Something in the air, in the water, in the food we consumed? And I imagine his small body shivering in the wind today, out on a vast field where little kids re-enact a bloody war, my son an innocent bystander as miniature troops storm by, many dropping like flies, and I mourn those lost in innumerable wars and in places like Nagasaki and Hiroshima, Japan.

And then I was soothed by the memory of a passage from Leaves of Grass, written by Walt Whitman, whose dying son he held vigil for on a cold night during the Civil War. He says, in part:

Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people ...

And I realize that if we could live by these words, perhaps there would be no war, no battle lessons, no thirst for power by tyrannical men, no desire to keep some people out or to box others in, no fear of persons different from ourselves, no contempt for those who have little nor praise for those with more, no scorn for unfamiliar beliefs or hunger to oppress the weak, the poor, or those with darker skin. If we learned our lessons once and right, this place we call Earth could be one big loving world.

Photo by Mary Booth Scarponi