new year's eve

Calvin and I spent New Year's Eve in the ER. It was the first New Year's Eve in decades that I've stayed awake past midnight! Calvin and I both got some sleep, but were interrupted numerous times at ungodly hours for exams, IVs, blood draws, vital signs, a CT scan, an X-ray, and an unsuccessful attempt at getting a urine specimen. Through all of it, my ailing, tired and uncomfortable child was a superstar.

Earlier that day, we went to see the doctor because Calvin had been experiencing waves of excruciating pain—pain so bad it seemed as if he were being stabbed in the gut repeatedly. The doctor ordered a blood draw. Later that night, she called to tell us that his pancreatic marker, lipase, was three times what it should be. She advised us to go to the ER immediately for possible complications of acute pancreatitis. The blood draw at the ER, however, showed a normal lipase level, and the CT scan indicated that his pancreas looked fine. The ER doctor noted, however, that there were a handful of gallstones she said we should keep an eye on.

The CT scan also revealed a case of aspiration pneumonia in the lower part of Calvin's left lung, possibly caused by regurgitation stemming from his case of viral gastroenteritis. They sent us home the following morning with a prescription for a two-week course of antibiotics. Still, my gut tells me that his pain may be stemming from the gallstone(s).

Despite the exhausting array of tests and interruptions, the care at our local hospital ER was amazing. Those folks work their asses off, only to be abused by rude and unruly patients (one man was screaming at them in the hallway in the middle of the night. My guess is that it was about wearing a mask. I feared he might get violent.)

Right now, Calvin is safe and sound in his cozy bed in hid dad's arms with his favorite toys. Since coming home, I've been able to go for daily runs. On New Year's Day, despite feeling like hell, I was grateful I could run out at my beloved Pennellville on such a beautiful, misty and balmy morning. As I ran, I thought about the hell we regularly go through with Calvin—some Hades worse than others. But in later recounting New Year's Eve to Michael, who had finally left us in the ER around eleven o'clock that night at my urging, I realized how amazing the whole experience was. With tears in my eyes, I related to Michael how the CT-scan technician, Matt, had put the lead vest on me as if he were helping me with my jacket at a dinner party. His concern for me and Calvin was palpable in the grace and gentleness he exhibited.

I went on to ponder our fortune at being admitted to the ER by my dear friend, Michelle, who is a nurse and whose daughter, a classmate of Calvin's, is very much like him. She gave me tons of hugs and assured me we were in good hands. Also, upon arriving at the ER, we were greeted by a kind, elderly gentleman. I don't remember his name, but while we waited with our limp and listless boy slumped in his stroller, the man approached to visit with us. He wondered, based on having heard me say our address, if we might be affiliated with nearby Bowdoin College. We told him that Michael teaches photography there.

"My son used to teach there," he replied, then told us his son's name, which didn't sound familiar.

"He died eighteen years ago ... from cancer," the man said, and as I expressed my sorrow, tears welled up in his eyes.

He went on to mention his daughter-in-law, who also teaches at the college.

"Yes, we love her! She has donated many times to epilepsy research on Calvin's behalf!" I told him.

Just then, a bed in the ER became available, and so I gave the man a hug goodbye, while wishing we could sit and visit longer.

Later, in reviewing the events of New Year's Eve, I realized, despite its myriad stresses, what a rich experience that night had been. I recognized, that while I wasn't touring Manhattan or Rome or Los Angeles or Iceland, I was having a profoundly memorable experience, perhaps more meaningful than if I were at a party with friends or traveling the world. It became clear that the strangers I met that night really meant something to me intimately, even if our encounters were fleeting—and maybe Calvin and I meant something to them.

Slowly, Calvin is recovering. He's drinking fluids again and taking a bit of food—applesauce, banana, dry toast and, today, nonfat yogurt. His bouts of pain have mostly passed. We will take him to see a general surgeon tomorrow to discuss his gallstone(s) and whether he needs to have his gallbladder removed. I hope not.

In the meantime, as I spend most of these days nursing Calvin—changing his diarrhea diapers, taking his temperature, giving him meds, offering fluids and food, cradling him in my lap as he sleeps—I'll continue to ruminate on the manner in which we rung in the New Year, which, no doubt, I'm not likely to forget, except, perhaps, when I run.

anniversary

Today marks the twelfth anniversary of my first blog post. In twelve years, and over 1,747,526 hits later (no doubt some of them from bots), scores of lovely people have joined in helping to fuel my journey, recharge my battery, and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of mothers, fathers, doctors, nurses, restaurateurs, therapists, ice cream scoopers, bloggers, children, ed-techs, in-laws, sales reps, grocery store clerks, photographers, chefs, brothers, teachers, flight attendants, runners, city councilors, dietitians, case managers, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, radio talk show hosts, chaplains, lawyers, actors, neuro-ophthalmologists, contractors, professors, nurse practitioners, marathoners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, writers,s founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all done something—whether unwittingly or not—to make our lives richer, more comfortable, happier, better, and for that I owe you each a debt of gratitude.

the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

out of nowhere

call it what you want. a close call. an accident. incident. collision. crash. smash-up. main thing is we seem to have escaped unscathed. the motorcyclist got a gash on the sole of his foot. he was wearing sneakers instead of boots. seated on his machine, he must've come at us with some decent speed. he didn't slow or skid or stop, that is until he hit us. thankfully, he didn't smack us at ninety degrees. he hit at an acute angle and glanced off of our side panel. put a major dent in the back seat door. the impact rocked us. the three of us lurched sideways in our seats. i screamed.

it happened tuesday. calvin, smellie, and i had been taking an after-school drive along the same old beautiful back roads we often do. had stopped at simpson's point to take in the scenery, sun and wind, salt and choppy water. for whatever reason, calvin went bonkers. so we went back to moving. not long after, he calmed, so i decided to turn around. to go back and take a photo. that's when it happened. the crack-up.

after the accident, a kind bystander led me to the shoulder. calvin's teacher drove past and pulled over. he waited with calvin while i called and spoke with police. i asked the motorcyclist if he was hurt. i was concerned. he mentioned his foot. i asked him what had happened. asked if he was trying to pass me. he said, "don't play the blame game, lady." i assured him that was not what i was doing. just wanted to understand what had just occurred. as always, i had signaled before the turn. had more than ample space—200+ yards—between me and the oncoming car in front of him. i had taken the left turn safe and slow. the biker came out of nowhere. hit us as we were still curving around. i was still going slowly as one does in a turn, my signal still on.

in the end, he seemed to understand my questions. no reason to rewrite or malign. he wasn't a bad guy. i didn't get a ticket. didn't break any law. i was established in my lane. don't think i was at fault. but who does, after all?

in the wake of the mishap, i think about the what ifs (since calvin's birth, i've become good at it.) i shudder to imagine the outcome had he struck our side head on. what if he had been driving a truck? what if we had hit him on his cycle? the imaginations are sickening. it could have been so much worse. we're all okay. fortunate.

an outpouring of care and concern came in from folks who saw our smashed-up car on facebook. dozens of kind words and love streamed in. yesterday morning, while walking on the wooded trails with smellie, i ran into (not literally!) a runner i used to see often on my back roads travels. he paused his workout to ask if we were okay. i gave him the details. he seemed relieved. i expressed my appreciation for his kindness and concern. then, he sped away.

yesterday afternoon, i stayed home with calvin. we traipsed around the house and did circles in the garden. didn't venture onto the roads. calvin was in a good mood. no problems at school. i spoke with his teacher on the phone. thanked him for his role on the side of the road. i realized, that though the accident itself was jarring, i wasn't shaken. perhaps, since he was born, little beyond calvin can faze me.

this morning at four a.m., calvin suffered a grand mal. it had been nineteen days since the last one occurred. unlike the scene of the crash, it was grisly. calvin's little body was stiff and wracked with spasms. his face and fingertips turned ashen. after the attack, his airway was jammed. we rolled him on his side. he restarted breathing. i crawled in and cradled him while his heart was still racing. his eyes were wide open, vacant, not tracing. later, he turned to me and held my neck. pressed my head against his own, as if to lessen some hurt from his brain's wreck. i wish i had seen the thing coming. maybe i could have restrained it. but when it comes to things hurtling from out of nowhere, sometimes there's just no way of escaping.

Calvin going berserk at simpson's point.

the calm before the storm

the sky holds its own burden. the air is close and still. the tempest is on its way. it's coming up the coast. the bugs keep in their lairs. is this the calm before the storm? trees let go their dewdrops. from high up, one plops into my coffee. the forest reeks dank with mildew. smellie chomps deer droppings, then drags her paws on running trails. i wonder if she feels the storm drawing near.

the back roads are mostly deserted. no sightings of my favorite usuals. no runner. no dog walker. no nice couple from the point. been missing them lately. wish we could commune. at the point, the tide is high and choppy. the sky begins to sprinkle. two sopping swimmers come ashore, tethered to bobbing neon buoys. i think they might be my neighbors. smiling, i do a u-turn. at the edge of a stretch dividing fields, a gaggle of canada geese stop and stare. i stop and stare, too. they're hesitant. what the hell are we all doing? outside my window, a hawk swoops along at forty miles an hour. it's keeping time with me. in a blink, i've lost him. easy come, easy go.

in the back seat, calvin yanks off his shoe and chews it. he's not quite himself. his cheeks are flushed like during certain seizures. it's day nine. a full moon. i keep expecting the fit to fall. i was awake last night for three hours. ended up switching beds. didn't really help at all.

at home, we traipse our millionth circuit between these four walls, making well-worn paths from room to room. little fingerprints smudge the walls. other surfaces are covered with drool. i try to wipe them down as i go. a window finally pried open gives neglected plants a chance to breathe. i've never seen their stems and fronds move. i guess they're alive after all.

we get outside before the storm. walk three doors to woody's old home. calvin tries dropping down. i brace him from doing so. lead him across the street. knock on bill and cathey's outside wall. they're home. they take us in. we teeter through their kitchen and living room. out the back door to their deck. there, my son looks suspicious, as if having a little seizure. cathey helps him down the steps. both with bare feet, she and bill escort us home. tell me to call them no matter what i might need. just in case. i feel taken care of. the world—this town—is my beloved home. in the calm before the storm.

weekend update

At noon, it's fourteen degrees out. Last night it got down to two. We're sick as dogs inside this lonely house. Sidewalks are icy. While walking Smellie yesterday the windchill factor was well below zero. I feared my jeans would freeze to my kneecaps. The dog has become a little bit gimpy and we don't know exactly where in her leg it hurts, or why. We think it's arthritis as the result of Lyme. Can't get outside today to walk her since I don't have a nurse to watch Calvin.

Michael is on his way home from being gone for nearly twelve days. I hope he brings Hawaii's sun and warmth along. The other night a friend asked if I resented my husband's travel. I told her only sometimes. It's his work, and it makes him happy and he misses home and wishes I were with him, with or without our boy. Alas, because of Calvin, it can't be so.

While Michael has been gone, his parents have been regularly checking in on me by phone. Several friends have walked Smellie when I can't, braving the wind and cold. A dear friend and his daughter shoveled my snowy driveway. One lovely dropped by some homemade spaghetti and cookies. Another brought me tulips, English muffin bread, tea, honey, Meyer lemons and Honeybell oranges. Still another showed up with a warm loaf of lemon poppyseed cake. I'm so lucky to be taken care of by friends in this small town.

Last night Calvin had a grand mal seizure. Strangely, I didn't see it coming. It was early enough in the night that I feared he'd have a second one like he did the past two times. So, I gave him a little extra homemade THCA oil and spooned with him. He didn't have another one.

I hope to get some sleep tonight. I feel wrecked, with achy eyes and a voice which is nearly gone. Thankfully, Calvin is in a mellow mood, thus has been pretty easy to take care of. Of late, I've seen his behavior trending toward more calm. From his room next door I hear him yawn. Time to try a nap of my own while Smellie is out walking with friends. Soon she'll be on her way home.

From the field behind our home.

landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.

the ice man cometh

This weekend, the current administration has plans to raid our communities in search of unauthorized immigrants to deport. This will inevitably mean that the families of some of our neighbors will be split and splintered. This means that good people who have integrated into our communities, who contribute to society, many who build our homes, care for our children, cook our food, clean our hotel rooms and homes, harvest our crops, package our meat, and who pay billions in taxes, will be torn from their loved ones and their homes. This means that people, some who have lived in this nation for decades, many who have American wives, husbands and children, and whose children are dear to our own, will be forcibly taken, put into detention and face deportation, their only offense having been to flee hunger and danger, to seek a better life for themselves and for their families, to have claimed asylum.

Keep in mind these ICE (Immigration and Customs Enforcement) agents will likely not be targeting undocumented European or Canadian immigrants. Why? Because this is a racist policy put in place by a racist administration targeting Black and Brown people who fled from nations south of "our" border. This is an example of White Supremacy. Beware, American citizens will also be swept up in these raids because of the color of their skin. Like this administration's proposed census question, its neglect of Puerto Rico, and its Muslim ban, racial profiling will be at work.

Once again, I am reminded of fascist Germany's Nazi raids of homes like mine, in the kidnapping and detaining of disabled, infirm children before going after other "undesirables"—Jews, homosexuals, Catholics, non-White Europeans. It can happen again, even in this nation, lest we forget our government's internment of Japanese Americans during World War II. Like some Jewish American activists are doing, we should be protesting these seizures and detentions of refugees. We should be shouting, "never again!"

And when it happens, these immigrant and blended families will be left in shambles. Their breadwinners and caregivers will be arrested, detained, deported. Their children will be orphaned. Their communities will be shaken. Their families may never be reunited. We should imagine their fear as our own, and condemn this administration's actions.

Keep in mind these immigrants and refugees who, study after study show, make our communities safer, have committed no crime by claiming asylum on land that was stolen from its natives by many of our White ancestors, its prosperity largely built by slaves stolen from their native lands. These immigrants and refugees are not "illegals." Ironically, their ancestors may have lived in what is now Texas, California, Louisiana. These people are human beings. They love and toil and grieve and bleed just like the rest of us. We have room for them. We'd do better, be better, if we welcomed them. Remember the quote at the foot of our Statue of Liberty:

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

Yes, the ICE man cometh. He will wreak havoc, tear wounds in our communities, rip apart families with his sanctimonious contempt for those he sees as threats to his privilege. But know that he is ignorant. Know that he stands on the wrong side of history. Know that his power is withering, his reign limited. Still, beware his acts of desperation. Shelter, if you can, these innocents from the ICE man's chilling grip.

Photographer unknown

alive and loved

It had been years since I dined with the neighbor-mother of a boy whose due date was within a week or so of Calvin's. However, Calvin, now fifteen, came into the world six weeks early, and from then on the trajectory of our sons' lives would forever be diametrically opposed.

Kathy and I sat in a corner table near the bar sipping beet yuzu martinis and wielding chopsticks to munch a shaved-cabbage, pea shoot, crispy-shallot, and roasted-peanut Asian slaw. My friend ordered pan-fried vegetarian dumplings. I got the ones with pork. We caught up a bit on our and our husbands' recent endeavors and shared worries about our children. We laughed and chatted with a friend seated next to us whose daughter, also fifteen, is in the wonderful thralls of what it means to be a teenager, just like my dinner-date's son.

I find myself hungry for stories of other people's kids even though they often trigger a bittersweet sting. My love for kids—their silliness and wit, their quirkiness and crazy antics, their world curiosity, fearlessness and old-soulness—is largely unquenched because mine is nonverbal and incapable of learning and doing so many of the most basic things. My child is just becoming proficient at riding a trike on smooth, indoor floors, while his peers are playing soccer and lacrosse outdoors. My child is still being spoon-fed diced, minced and pureed foods, while his peers can make their own snack foods. My child is relating mostly with adults—teachers, ed techs, nurses, while his peers are hanging out together and are beginning to show interest in having sweethearts. My child is still playing with chew toys, while his peers are likely already beginning to think about college.

Kristi, the woman seated next to us who I don't know very well, told me that she reads every one of my blog posts. She (needlessly) apologized for having not responded to any of them in written form. She wanted me to know how important she thinks my blog is for others. She went on to say that she even shares it with her children, encouraging them to think outside of themselves and into of the lives of others. I was most humbled by, and grateful for, her affectionate show of appreciation for what has become for me such a labor of love.

While Kathy and I drank and dined, a handful of Bowdoin College English professors filed in slowly and were seated at a nearby table. Three of them—Ann, Marilyn and Aaron—who are dear to me and whom I don't see nearly often enough, came over to visit briefly and to give me big hugs. Throughout my years of living in Maine, they've all been a source of strength, love and damn good humor.

When our drinks were empty and our bellies were full, we got the bill and Kathy kindly paid for our meal. Upon leaving, I gave each of my friends one more hug. As we left the cozy indoors, we were greeted by a cool and invigorating April breeze. I remembered what I'd said to Kristi before we were served our meal: March, which was so full of seizures, had been hellish for Calvin and me. But last night, having begun a new spring month, I left the restaurant feeling new and alive, loved and buttressed by so many kind, compassionate, generous, and wicked-smart people, many of whom are still kids at heart. No wonder I like them so much.

Asian slaw

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

snafu

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

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

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

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

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

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

tell it like it is

The pained looks on some of their faces made me sad. I wondered what they were thinking as I shot image after image onto the screen. Some of the still photos seemed to evoke similar responses to the video of Calvin's grand mal seizure from a few years ago. Did any of them have a brother or sister with epilepsy? Did any of them suffer from the disorder themselves?

This spring I was again asked by my friend Hadley to give a talk to her neurobiology class at Bowdoin College. It is a chance for the students, many of them pre-Med, to see a different side of neurobiology, one not seen through a microscope but through a distinct kind of lens—the patient one. I was also asked to give the same talk to my friend David's public health class, also at Bowdoin. I was most grateful for the opportunities.

Getting in front of so many sharp students and telling it like it is feels second nature, reminds me a little of my days of coaching swimming, looking out at the pool of bright faces filled with curiosity, hope and excitement—perhaps even a natural uncertainty—for the future. My hope is that my hour-long show of photographs and anecdotes of life with Calvin can somehow make a difference in how they see the world of health, medicine and disability.

I start by telling them about the white matter that is missing in Calvin's brain. I tell them about his premature birth, his first seven weeks in the hospital, his atrocious vision, his low muscle tone, his poor balance and coordination, his developmental delay, his form of autism, his incontinence, his inability to speak, his need for constant surveillance. Calvin, with all of his difficulties, I say, would be a piece of cake to handle if not for the epilepsy, the drugs and their side effects.

I tell them about the condescending physicians with chips on their shoulders. I tell them about the ones who dole out prescriptions for benzodiazepines like candy and yet don't seem to have a clue about how to wean them nor know the list of heinous side effects withdrawal can cause. I tell them about the neurologists who seem laser-focused on stopping seizures at any cost but seem blind to quality of life. I tell them about the doctors and nurses and technicians who placate me when I ask them to give Calvin their best phlebotomist or intravenous technician. I tell them about the neurologists who reject cannabis as medicine because of their fear and ignorance or perhaps their collusion with big Pharma. Then I tell them about the physicians who have partnered with me, who treat me as their peer, who aren't afraid to help a child even if it might cost them, who are open to new ideas and who aren't afraid to advance the treatment of epilepsy with cannabis.

After Calvin's sixth day in a row of seizures—thankfully only one of them being a grand mal—I began fearing daily ones might become our new normal and that I might have to cancel my presentations. But the spate broke the other night when I gave Calvin a small but concentrated dose of THC tincture made of cannabis flower, organic alcohol and oil. I've given it before, but in my best memory, never to stop a cluster of partial seizures at night. I can't know for sure, but it seemed to work two nights in a row.

Back in the classroom, many of the students were interested in the cannabis aspect of Calvin's story. They wanted to understand drug policy. They wanted to understand how I made the oil and how difficult it was to get a physician to recommend it for my child. One of them commented on how absurd it is that the government still prohibits cannabis use in the face of mounting evidence that, not only does it help, but that it is not as dangerous as other drugs. I began telling her about the reasons behind negative government propaganda from the 1930s and how the bogus racist argument fueling cannabis prohibition has shaped cannabis and law enforcement policy and has lead to the wrongful mass incarceration of African Americans, many of them innocent.

One student who had read a fair amount of my blog wondered why I wrote so much about politics. I told him that Calvin informs my opinions of things and that he has made me realize, more so than I did already, that marginalized communities suffer and face undue discrimination. I explained that if I could help folks understand the hardships disenfranchised people—the disabled, people of color, immigrants, LGBTQ people and Muslims, for instance—face on a daily basis, I might inspire empathy for them, and perhaps make folks think differently about public policy. I told him that since Calvin is non-verbal, I must be his voice, and that the same can be true of others of us who can advocate on behalf of people whose voices, because of fear and oppression, have been quashed.

In reflecting on my presentations, I realize one thing I left out: my little Calvin has emboldened me to speak more of my mind, to shout if I have to, to challenge authority, to voice frustrations, criticisms, and uncensored opinions. He inspires me to be evermore fearless amidst an oppressive, nonsensical, patriarchal, puritanical, often backwards world. Tell it like it is, he says to me in his singular kind of way. It may pain people to hear it, but how can I refuse?

Calvin, telling it like it is. Photo by Michael Kolster

in good hands

Despite my penchant for kvetching, I want you to know that I do get out to celebrate with friends more than just once in a while. Here I am a last month with my homies Luke and Sarah, belly up to the bar, drinking a fabulous margarita at our local cantina while my husband was in Europe for three weeks taking photos, giving talks and putting up a solo show. During Michael's stint away, my buddies kept me (relatively) sane, entertained, and well stocked with flowers, firewater and food galore.

No matter how you slice it, I always seem to land in the good hands of neighbors and friends.

out in the world again

For weeks, if not months on end, I’ve been losing myself, drowning in the mire of a disabled child's life, a human shadow traipsing around as Calvin makes endless loops around the house. I'm losing myself in the weariness of monotonous days, losing myself in loads of laundry, a sink full of dishes and bursting bags of dirty diapers. I’ve been losing myself in the whiteness outside, the prolonged cold, gritty streets and frigid wind. My circumference, as my friend Lauren said, is notably smaller in winter. 

When the mercury made it above freezing yesterday, Lauren rang asking if Calvin and I might like to join her for a trip to the Giant Steps. Calvin had had a good night and morning, and was in a rare mood, so I agreed. Within an hour I’d taken a shower, changed three diapers, drew up Calvin’s late afternoon cannabis oil, packed up some snacks, some juice, a bib, a rag, some diapers and some wipes. I loaded Calvin into the back seat of Lauren’s car—at thirteen, he’s just barely big enough now to ride without a car seat—for the scenic drive down Harpswell Neck to Bailey Island.

Halfway there I was able to look up from feeding Calvin to see the open ocean on one side of the peninsula and Mackerel Cove on the other. The scene was picturesque, like one you’d see on a postcard: a dozen or two boats hitched to their moorings floating in a sheltered cove, leafless grey trees, their diaphanous canopies like clouds resting on the horizon. My view reached scores of miles, far beyond the mere feet or yards I'm accustomed to seeing in town. I felt my chest expand and my spine straighten up like I do when I step off of a plane in the West. As we drove, I soaked in the view. Cedar shingle and painted red saltboxes and capes sprouted from snowy knolls against a backdrop of blue sky and sea. Clumps of sumac branched like frozen dancers along the side of the road. I felt as if I were in another world, and then I realized it was one I had simply forgotten existed so close to home.

Turning down a narrow lane, we saw the ocean splayed out before us. Lauren dropped me and Calvin at the trailhead while she parked her car up the road. In an act of defiance, Calvin planted his feet, wouldn't move, and began expressing his disapproval of the cold and/or his inability to transition to the strange, new place. His tantrum included a mix of laughter and shrieks. I struggled to prop him against my knee rather than letting him fall to the soggy ground. Finally, I had to hook my arms under his and carry him to a wooden guardrail where I thought he'd be willing to stand. On approach, I misjudged the height of the railing, he lunged and pitched forward over it. Had he more momentum behind him, he might have plummeted over the edge and down the rocky escarpment, a demise that, for an absurd second at that exasperating moment, I imagined might have been fitting.

When Lauren joined us she took one of Calvin's hands and helped me walk him down the narrow trail to our destination. I was surprised at how well he did. Several yards ahead we found a spot to stop and rest. Lauren sat with Calvin so I could peer over the ledge to view the Giant Steps, a glacial rock formation I had never seen. The mammoth cube-shaped rocks looked as if they'd been placed there by Hercules. As I squinted out over the Atlantic I began to weep, realizing how confined I've been for so long, and grateful to Lauren for having lead me beyond my comfort zone.

On the way back, we had to wrestle with Calvin who, several times, struggled to stop and drop in the mud. All in all, though, he was very compliant and even walked the extra distance up the hill to the car.

Today, it's raining, revealing the green of things, and though I'm stuck indoors once more, I've been reminded that sometimes with a little help it's not too difficult, yet enormously vital, to get out in the world.

Photo by Lauren Catlett

larger than myself

It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.

We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.

Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.

Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:

my rights are not up for grabs

respect existence or expect resistance

feminism is the radical notion that women are equal to men

i’m not a sign guy, but geez

leave it to the beavers

1968 is Calling. Don’t Answer

I would not want to be the guy who pissed off all these women

We are the 51%

Make America think again

Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.

On social media the past week I fielded some questions about the marches. The queries, verbatim, were:

What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?

I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.

Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.

Photo by Connie Chiang

sorry truth

One of my deepest fears is waking up to find my twelve-year-old son Calvin in his bed, lifeless. To some, it may seem a foolish or exaggerated worry, but to parents of children with epilepsy, particularly the kind Calvin suffers, which is resistant to medication, it's the sorry truth. In a given year, Calvin has a one in ten chance of meeting this end due to SUDEP: Sudden Unexpected Death in Epilepsy, which I liken to SIDS, but for people with epilepsy.

What might be more vexing and emotionally complicated, though, is the thought that our severely disabled, non-verbal boy will outlive us. Before the presidential election, I read an essay by the father of a boy with autism. He implored his readers not to vote for Trump whose policies, he feared, might threaten the services and health care protections enjoyed by their son. He went on to explain that he and his wife hoped that they would outlive their son by just one day because of their deep-seated angst that no one would be able to care for him in ways necessary for his health, happiness and well-being.

Daily, perhaps, I have similar worries. What if I have a fatal heart attack or stroke or fall down the stairs and break my neck, particularly if Calvin were with me. Who would care for my precarious child in the fragile moments after such a malady? Would he fall down the stairs trying to navigate them by himself? Would he get distracted by the sun streaming in through the window and let go of the handrail? Would he trip on the carpet and crash head first into the radiator? Would he accidentally turn on the stove, grab a knife by its blade, accidentally put a hand through a window? Imagining his confusion, want and need in such a scenario makes me quake.

My angst treads deeper, though.

Who would love my boy? Who would delight in hugging and kissing him and accepting his many embraces? Who would let him curl up in a fetal position beside them, his arms tightly clasped around their neck? Who would endure his drool on their hands and face, the grating sound of his oft grinding teeth, his shrieking, imbalance, sudden manic outbursts, seizures. Who would know what medicines to give him, how much of them and when? Who would make his cannabis oil? Who would know when he needs to be burped? Who would know just where he is most ticklish, if he is hungry, thirsty or needs to poop? Who would change his diapers? Who would be tender and loving to my growing baby of a boy?

Calvin is one of the reasons I continue to mourn the recent election and worry about the most vulnerable and identifiable who are left reeling in its wake—the Disabled, People of Color, immigrants, Latinos, LGBTQ people, Muslims, women. I’m baffled that so many Americans still don’t recognize their Straight White privilege, and I fear others who assert their White supremacy. I'm dismayed that the worry and anger some of us are feeling about the prospect of the impending administration—one that is shaping up to be quite ugly and menacing to so many—is contemptuously laughed off by the small-minded as mere childish tantrums of sore losers. The smug notion and its authors sicken me.

Many wise people have said that a nation is judged by the way it treats its most vulnerable; no doubt Mr. Trump and his goons are already taking us to a failing grade: F for fucked up, and I don't mean that lightly.

As a woman, who as a girl endured bullying and ridicule by boys and men, who as a teen survived sexual harassment by a strange young man, who as a woman was grabbed in the crotch by a passerby, and was again sexually harassed by a perverted White guy, who’s been neglected, interrupted, steamrolled, mistreated, scapegoated and glossed-over by White male relations and peers, as the friend of Black men and women who have been maligned and mistreated, and of Muslim women, Jewish, Latino and gay friends who are scared, and as the mother of a severely disabled child with a chronic illness who has at times been gawked at, scorned, sidelined, misunderstood and neglected by professionals, I worry about what is to come under Trump.

Like the prospect of my son's untimely death, my worry for the most vulnerable of us under the next administration is not foolish or exaggerated ... it's the sorry truth.

Photo by Michael Kolster

underneath a sky that's ever falling down

Here we are

Stuck by this river,

You and I

Underneath a sky that's ever falling down, down, down

Ever falling down

The verse floats in an expanse of white adjacent to a similar page with only two typed words: For Christy. I wiped a tear away before it might have stained my husband’s newly published book, Take Me To The River, a heavy one splayed open in my lap.

The words seeped into me. I felt them ache in my bones. I do feel stuck ... in this town by the river. The sky does feel as if it is ever falling down—Calvin’s increased and relentless seizures, his many missed days of school, the recent election of a man whom I wager may never earn the respect I require to call him my president. Life feels bleak. No way out. This sinking feeling.

I woke up to the season’s first dusting of snow. Though I’ve relished the dry, mild days this autumn, the white was a welcome change to the drab drudgery of same. My boy is having seizures on average every couple-few days. The grand mals, albeit reliable, come slightly less frequently, though still too often. I wish I knew the culprit, and I find myself asking the same questions:

is it the moon? the barometric pressure? puberty? is it too much medication? not enough? is it the benzo withdrawal? a growth spurt? lack of sleep? constipation? stress of the election?

Never can I know. But whatever the culprit, we are stuck, Calvin and I. We are literally and figuratively going nowhere, spinning our wheels in this goofy little town in Maine, my boy and I treading in the same sorry circles that we have for years, forever within inches of each other.

Yes, the sky is ever falling down. As if the election outcome was not bad enough, last week I had a knock-down, drag-out fight with someone I love. He began by playfully needling me about the protesters, many who are from marginalized and vulnerable communities—women, Latinos, African Americans, LGBTQ people, the Disabled. At first I chuckled, then mentioned his White privilege. He bristled, stated the obvious—that people are born equal—then went on to say that folks simply need to work hard to get ahead. I emphasized that, although we are born equal, we come into this world in unequal circumstances, some of us with clear advantages and some without (I think of Calvin). He rebuffed well-documented truth that being White means enjoying better odds of avoiding stop-and-frisk, harassment, hate crimes, arrest, fines, incarceration, harsh sentencing and capital punishment. Being White means enjoying a greater chance at being picked up by a taxi cab, renting an apartment or securing one on Airbnb, getting that job interview, getting the job, getting the promotion, a better chance at being given a loan and being free to vote. Our White children enjoy better odds of avoiding corporeal punishment at school, bullying, detention, suspension, being hand cuffed, being shot by a neighborhood watchman for wearing a hoodie, or by the police for playing with a toy gun. When you are a Person of Color, especially if you are Black, it doesn't matter if you are a hard worker, a veteran, a student at Yale or a Harvard professor; to some, you're considered fair game.

During most of our conversation I remained calm despite his frequent interruptions; I pride myself on being capable of having an adult exchange even about controversial subjects. Partway through, though, he began raising his voice and barking, as he is sometimes wont to do—Christy! Christy! Christy! He began steamrolling over me. From there it escalated, because I wasn’t about to submit to such lame ass bullshit harassment. In the end, I was screaming at him full-throttle just as he was yelling, until I heard the line drop.

Stepping into the cold yesterday, tiny flakes falling over me like ash, I reflected on that conversation. What I saw clearly in play this time was the sexism—the bullying, interruption, false accusation—regrettably all too familiar and yet only now palpable to me. Nellie pulled me along at a good clip. I set her free at the fields where she ran like mad with the other dogs. I often marvel at the female creature—fierce, strong, confident, fearless. She could tear a male opponent apart; she receives no social cues deriding her gender, faces no imposed barriers or hurdles, isn’t defined by her features. In many ways, she and I are the same; I have lifted my weight in iron. In other ways she has the advantage; I was born into a patriarchy.

Once home, I bought an airline ticket to Washington DC for a flight the day after what's-his-face's inauguration. If Calvin were healthy, able-bodied and cognizant of such things, at just shy of thirteen-years-old, no doubt he'd be coming along. It grieves me deeply that I cannot bring him. I’ll be there not only to protest the inauguration of a miscreant—a dangerous man, a clown, a sexual predator, a bigoted, greedy, misogynistic, racist, xenophobic, tax-dodging, fraudulent white supremacist—but mostly to celebrate women, and our rights, alongside other fierce, strong, fearless humans. We'll all be there underneath the same sky that, of late, has been falling down, down, down. But we'll use our love for each other and our righteous strength in numbers to lift it up to where it belongs.

March on Washington, 1963

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

walking into walls

As many of you know, spring is the time of year I usually launch Calvin's annual epilepsy benefit. This year, however, I decided to put my energy toward Parkinson's awareness and the funding of the documentary film, Walking Into Walls.

Several years ago my brother Steve and our dear friend Coleman Hough, the performance artist and screenwriter making the documentary, were both diagnosed with early-onset Parkinson's disease. I have witnessed their struggles firsthand and have listened to their stories of anguish, frustration, uncertainty and hope in the face of this devastating, degenerative disease.

Coleman's film, which has beautifully evolved, brilliantly and poignantly explores the depths of her experience with Parkinson's disease. Now, in its final stages, it needs one more push to bring it to fruition. I'm stepping in to help that fundraising effort while she heals from the second of two deep brain stimulation surgeries.

I hope many of you, and those who have donated to CURE epilepsy in the past, will choose to join this rare opportunity to help in the making of such a compelling and important film.

This film must be made. It will touch countless lives, not just those with Parkinson's disease and their families, but those of us whose lives hang in the balance of human uncertainty, those of us who are struck by life's curveballs, sending us reeling.

I invite you to watch the teaser below and to donate what you can on Coleman's fundraising page before May 15th.

Thank you, in advance, for your generous support.

Sending much love and high hopes to you all, especially Steve Shake and Coleman Hough,
Christy

If you cannot view the video, you can see it on Coleman's fundraising page by clicking here.

                   

at the bar with lamar

We saddled up to the bar, my girlfriend Lucretia and I, and talked about Hillary and Bernie and their possible running mates and about how we wish we had a crystal ball. I touched her wavy hair, noticing how silvery it had become since I’d last seen her, and told her how beautiful it looked. Her eyes were bright and smiling and I draped my arm around her for a spell, happy to be out with my dear friend again.

We dined on Asian slaw with peanuts and hot Kung Pao chicken dumplings. Lucretia sipped on a Manhattan, a house-cured maraschino cherry nestled in the bottom of the glass, and I on a Pinot Noir. I’d gotten a jump start on her, having had two fingers of bourbon at Woody’s house before she arrived to pick me up, so I was giddy and happy to be out on the town.

Partway through our meal I leaned over and nosily asked the man in the seat to my left what he had just been served. He said the dish was scallops and potatoes. The three of us got to talking, first about the food—was it scalloped potatoes or scallops and potatoes? We told stories of where we all grew up, and I remarked on his sharp plaid button-down shirt and smart jeans, which got me to talking about my time at Levi’s, which segued into discussing his new job in human resources. We wondered where he’d traveled from, and if he was going to live nearby. I asked him his name and as he put out a strong hand to shake ours he told us, “Lamar.”

It was Lamar’s first night in town, having traveled from Detroit to work a week out of every month at a plant just up the road. He asked Lucretia and I how we spend our days, so Lucretia described the time on her farm and I shared about my writing and my boy. When I mentioned Calvin’s epilepsy, Lamar told us his thirty-year-old brother has epilepsy, and he asked how long Calvin has been having seizures. I said, “Since he was two.” I openly lamented knowing that Lamar had probably grown up taking care of his little brother. He nodded his head and bowed so I touched his leg lightly in accord.

For well over an hour Lucretia and I visited with Lamar, who is handsome and young, tall and lean, with a closely shaved head and nice brown skin. He told us of a recent break up and, in solidarity with our new friend, we agreed it was probably the right thing. We laughed and joked about this and that and vowed to gather again the next time he’s in town. As we parted we all gave each other hugs as if we'd been old friends, then Lamar said joyfully of our meeting, “This happened for a reason!” I replied that I didn’t believe in that notion and said I’d explain sometime.

When Lucretia dropped me off we embraced. Inside, Michael and his friend Matt were sitting in front of a rolling fire, Nellie at their side. We chatted for a bit before I kissed Michael, hugged Matt and said goodnight.

Sleep was sound until four o'clock when Calvin started into a grand mal, just five days since the last. In the seizure's wake I syringed in his benzodiazepine, hoping to thwart any more.

Lying there next to my boy while he shivered and shook, I felt a little headache coming on and then remembered why. But, knowing that earlier I'd met a new friend named Lamar, made me feel a little better somehow.

Photo http://poco-cocoa.com