Everywhere I go, I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer, little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid, I would’ve responded sarcastically, “take a picture, it lasts longer.” But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.

At twilight several weeks ago, I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a turkey. I noticed a driver in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me, and then, when I caught her glimpse, I smiled. She didn’t smile back, just stared at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.

Then, there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hands as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes, hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often, they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s watery eyes sometimes, and it makes me love him that much more.

I’ve always felt different from the rest of my own family in most ways. Michael too. You know, the black sheep, the weirdos. And we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis, see life through yet another filter, one that if our child were healthy, normal, we might never have known. Each year living with Calvin strips back another layer—like some withered bark or faded, brittle skin—of what we thought we knew but didn’t. Though life is hard, it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.

There is a beautiful scene in the Terrence Malick film Tree of Life, set in 1950s Texas, where a mother takes her young sons to town. Crossing the street behind her, the boys pass a swaggering drunken man who tips his hat to them. The brothers mimic him laughing, cutting zigzags and bumping into each other as if inebriated themselves. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel, dragging one foot nearly on its ankle. They stare but do nothing, noting the peculiar but sad circumstance of his disability and, perchance—in their minds—noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Their mother lifts a drink from her thermos to his parched lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?

Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up being singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other.”


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.