There goes my kid again—manic, shrieking, flailing, tossing his head back and forth, dropping down, drooling, rashy, agitated, spacey, fingering like mad, unrecognizable to me in so many ways. In my darkest, rawest moments of cumulative sleep deprivation, frustration, despair and fatigue—and when Calvin behaves like this—I sometimes think about what a freak he can be, especially under the cloud of a looming seizure.

Before dawn, my hand resting on his pounding heart, my little imp drifts back to sleep after his fit. My mind wanders. I think about our dear friend who took his life late last month; I wonder what misery plagued him. I remember the videos of Calvin in which he was calm and smiling, sitting quietly paging through his favorite board book, walking with his arms at his sides instead of circling wildly above his head. I revisit Michael's essay about changelings—children who, in medieval lore, were considered freaks having been born with mysterious diseases, cognitive or physical defects. The changelings' curious and abhorrent afflictions were blamed on being the offspring of faeries or trolls who were switched for healthy children at birth. Many of these changelings, too burdensome for their families to care for, perished in rivers.

Our boy Calvin, like the changeling, is certainly an enigma. We'll never know who or what or how he might have been had he been born with a healthy brain, had he never developed epilepsy, had he never taken ten antiepileptic medications, plus drugs for constipation, drugs for reflux, drugs for sleep, drugs for his gut. All I know is that he, a pubescent teen, is in many ways stuck somewhere between infancy and toddlerhood. I see his peers ride past on their bikes; it won't be long before they'll be driving. They play in bands, compete in sports, act in plays, learn foreign languages, read novels, write papers, consider politics and explore the stars. If they haven't already, they will hold hands and kiss sweethearts. In just a few years, they will be awarded their diplomas, will go off to college, perhaps travel the world, take care of themselves. Our changeling will remain here with us doing the same infantile, rote things he's been doing since he was two ... and likely seizing. And though it's painful every time I try to picture Calvin doing amazing yet ordinary things—even having a simple conversation or walking in the woods with me—I can't stop myself from imagining.

As Calvin recovered from this morning's grand mal, Michael shared with me a presentation he'll be giving today at the college. One of the first slides includes a quote from Diane Arbus who was photographing changelings in the mid 1960s before she took her own life:

There's a quality of legend about freaks. Like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they'll have a traumatic experience. Freaks were born with their trauma. They've already passed their test in life. They're aristocrats.

As I mused on her words and studied her photos of children and adults with serious afflictions, I saw in them—in their remarkable faces, expressions and peculiar postures—their utter humanity. I regard my boy and see the same thing in him. He's my little changeling, and somewhere inside his shell of tension, anguish and pain, is a boy who emerges as the best of any of us—warm, sweet, unassuming, loving, uncritical, faultless, pure and unmistakably human.

Photos by Michael Kolster


  1. Utter humanity. Thanks for the glimpse at this elusive state of being

  2. Great pics. Lot of energy in this boy! I wonder if a small part of Calvin's actions are from frustration of not being able to do basic things, like have a conversation. Or order a nice warm & greasy cheeseburger. How are his sign language skills?

    FYI, I surf at a hospital cafeteria on occasion and their Hospital Wifi filter blocks me from calvinsstory.com. No reason. Just not on their list of filtered sites.

  3. The photographs, words, and humanity is gorgeous: you and Michael are aristocrats for sure. You are being tested and passing every. Single. Day.