I’ve logged more experience than most with simplicity and the complexity you discover inside simplicity, minimalism and asocial behavior, endurance and landscape.
Here is the truth: I think some deep wisdom inside me (a) sensed the stress, (b) was terrified for me, and (c) gave me something new and hard to focus on in order to prevent me from lapsing into a despair coma — and also to keep me from having a jelly jar of wine in my hand.
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Names and some details have been changed to protect privacy.
I drop by on a Saturday. Your mom lets you answer my knock on the apartment door. The cap of your gastrostomy tube is outlined against your unicorn T-shirt.
“Madison, who is it?” your mom asks — pretending not to know I was coming.
“Is . . . Uncle Owen.” You hug yourself and sway back and forth.
“That’s right, it’s Uncle Owen,” I say. I take off my shoes and leave them by the door while you muster the courage to ask the big question:
“Uncle Owen wants to play . . . gorilla games?”
I can’t contain how delighted I am by this question. I’ve spent my week hoping to run into a girl who wants to play gorilla games, and now it’s finally happened.
“I would love to play some gorilla games. What kind of gorillas are we going to be?”
“You Big Gorilla. I’m Little Gorilla.”
Soon we’re crawling on the living-room floor, this latest rendition of our ritual. I drag my knees across the carpet and grunt: low, guttural, convincing. You trundle along, keeping your head down so the other gorillas won’t see you. We circle the coffee table with you in front, leading us into the wilderness.
You’ve become obsessed with the gorillas at the local zoo. You love how expressive they are, how they play with each other. When you stare up at them, they stare right back: considering your thirty-pound, three-foot body; your round face and blue eyes; your blond hair already beginning to fall out.
During your last visit to the zoo, the gorillas got into a fight, shrieking and slamming their bulk around the enclosure. You clung to your mom and screamed that you wanted to leave, then immediately demanded to be taken back to the gorilla house.
Today, when it comes time for me to change direction — for us gorillas to walk toward each other around the coffee table — you sit back on your heels and wag a finger at me.
“No boo,” you say, to ensure I won’t pop around a corner and scare you, like the real gorillas sometimes do. “Nice gorilla.”
After gorilla games you and I walk to the park. You head for the playground at a half run, lie across a swing on your stomach, then look up to read the worry on my face.
“I do hard things,” you reassure me.
There’s no arguing with this.
A moment later, as my phone buzzes and I reach into my pocket (Is it your mom? Is it time for your medication?), you do a front flip off the swing and land on the crown of your head. Suddenly you’re howling and I’m scooping you off the ground and there are wood chips in your gums and I’m a shitty uncle and a worse godfather, and years from now, after you’re gone, I’ll hate myself for not doing better while you were here. This unbidden thought grips me, holding me even more tightly than I hold you.
I stumble to a bench and try to clean the dirt off your face. A cluster of parents look on disapprovingly from across the playground, as if nothing like this has ever happened to them. A woman tiptoes over with a chocolate ice-cream bar and extends it to you without a word.
“Oh, no thank you,” I tell her over your screams, because it’s easier to decline than to explain that you can’t eat ice cream, or virtually anything else. I gather you up again and start speed-walking out of the park, worried the fall from the swing has given you brain damage. (Do you already have brain damage? What was the final word on that?)
Your parents often soothe you by softly repeating, “I know,” as they rock you back and forth. Now you try this technique out on yourself. “I know, I know, I know,” you wail into my chest all the way down Lawrence, believing there’s magic in those words, a comfort in understanding.
You don’t unbury your head until your apartment building is in sight. You take a deep, shuddering breath, a string of snot running from your nose to my shirt.
“Home,” you whimper.
When will you ask for the story of your birth? Who will the task of telling you fall to: Your parents? One of your grandparents? Me?
What will I tell you?
The messages appeared in our family group text the day after your mom and dad had brought you home:
Something’s wrong with Madison.
She’s not breathing right.
We’re going to the ER.
It’s amazing how the stages of grief can begin before we even know what we’re grieving. In those first ignorant minutes, confronted by something we couldn’t discern, your grandparents and I reassured, downplayed, denied. Your mom and dad were being overly cautious, we said. They were anxious first-time parents, still learning the ropes.
Within half an hour you’d slipped into a coma. Your reflexes stopped responding. The ER doctors were stumped. Suddenly every member of your family was wide-awake, phones clutched in our hands, waiting for news. I felt like it was happening too fast to be real. Someone would call if you were in real danger, right? No one narrates a tragedy via text message. Unless they don’t recognize the tragedy for what it is.
When the reality became clear, I bought a plane ticket.
A neonatal intensive-care unit is an unnatural type of quiet — a floor full of babies, none of whom are crying. It’s the mutter of prayers, the beep of timed IV drips expiring, the hiss of compressed air into tiny nostrils. The parents in the NICU don’t smile, and everyone avoids eye contact with me in the hallway, as if the sight of each other’s suffering is more than any of us can bear.
It’s early morning, mid-July. You are four days old and in a coma. When I walk into the room to meet you after my red-eye, your mom and dad are standing on either side of a baby-sized gurney. They try to smile, then point to a hand-sanitizer dispenser on the far side of the room.
I squirt some on my palm, gathering myself against what I’ve already glimpsed: a nest of wires and tubes so thick I can barely make out your body.
I move toward you, but I don’t know what’s safe to touch. There’s a pulse monitor on your left foot, an IV in your right thigh, more IVs in the backs of both your hands, two tubes running into your mouth and a third snaking up your left nostril. The machines above your head click and flash numbers, trace the metronomic spikes of your heart. Beneath you is a blanket patterned with teddy bears, each of whom is swinging from a star.
“This is Madison,” your mom says in a singsong voice quivering with grief. The two of us stand side by side, brother and sister, looking down at you with swollen eyes.
Your right foot is the only accessible surface of your body. I reach out and hold it between two fingers.
I had open-heart surgery when I was young and have had a handful of operations since. That’s one of the reasons I’m your godfather. When you’re older and need someone who knows the strange, liminal feeling of anesthetic pulling you under; when you stand before a mirror and rub the edges of your scars — the hope is that you can come to me.
As I worked up the nerve to write this for you, I told myself my vantage point lies in a sweet spot: more objective than your parents, but more involved than your grandparents. I’m not just someone who comes over to play on weekends and causes you to miss naps. In my mind I’m as primary to you as you are to me.
Unclehood is a strange landscape. You have other aunts and uncles on your dad’s side, all of whom are married and busy with kids. But not your single, childless uncle Owen. You loom large in my life. I moved from Oregon to Houston after you were born in order to be near you. I lit the baptism candle at your christening last year. I’m not perfect in the role, but I do my best.
A few weeks after your front flip in the park, your mom and I take you to a science museum. You feed plastic balls into a suction tube, marvel at the wave machine, patiently wait your turn to sit in the tractor. When you learn that there are newly hatched chicks somewhere in the building, you bustle through the main hall like a frantic stockbroker, waving your arms and exclaiming, “Baby chicks! Baby chicks!”
The chicks live in an exhibit on genetics, surrounded by displays that explain how DNA inheritance works, but you’re here for only one thing. You bounce at my side until I pick you up. We peer down at the yellow balls of fluff asleep under a heat lamp.
I’ve never seen you chew, but you’ve started to take some of your liquid meals by mouth. Even this small piece of good news is provisional; your progress could be erased at any time.
Your mom tries to seize this as a teachable moment: “Madison, you know how you have a tubey in your tummy, and we do medicine, and sometimes we talk about how you’re sick? It’s because of the things in this room. It’s because of genetics.”
“I not sick,” you respond matter-of-factly, eyes on the chicks. You know what sick feels like. You don’t have a fever or a cold, haven’t even thrown up today. I wish you were being defiant, acknowledging your condition but willing to stare it down anyway. The truth is, you just don’t understand what’s coming, or what’s already here.
A chick wakes, and you giggle and press a hand to the glass, feeling the incubator’s warmth. Your mom lets out a sigh.
“I just don’t know how to explain this to you,” she mutters to a hairless patch on the back of your head.
With other people I keep it simple. I tell them you’re deathly allergic to protein (although this isn’t quite right); that your disease is rare and incurable, and its effects are cumulative over time. If the person wants an anecdote to grasp on to, I tell them that when you were first admitted to the NICU, the amount of ammonia in your blood was more than twenty times higher than normal. I explain that ammonia is a neurotoxin — a primary ingredient in cleaning fluids, fertilizers, tobacco smoke.
How will you explain it, after you learn what “it” is? Your parents’ softened version will serve for now, but soon you’ll be old enough to look it up on your own. Your disease is so rare that in Houston, a city of more than 2 million people, your doctors know of fewer than five patients. Houston is home to more gorillas than it is to human beings with what you have.
Someday you’ll fall into the same Internet hole that’s already swallowed me, each search begetting others: developmental delay, brain atrophy, epilepsy, ataxia. Maybe you’ll find the study in which 85 percent of patients died within ten years of diagnosis. Or the UK study in which only one patient out of twenty-one was capable of living independently as an adult. Perhaps you’ll read about the direct link between hyperammonemic coma and a “significant” lowering of IQ. I imagine the moment you’ll realize how few patients with your disease live into their thirties. I picture your eyes and the set of your mouth. If I imagine this deeply enough, then perhaps, when I see the same expression on your face in the future, I’ll know what to say.
The day you learn the truth will be one of the worst days of your life. I both dread it and beg for it in equal measure, because if the day never comes, that means your brain has been too badly damaged for you ever to understand your disorder. Or it means you’re already gone. And so I hope for what is cruelly the best-case scenario: that you live long and well enough to learn what your family already knows.
It’s Christmas Eve, and the nurses are wearing Santa hats — a sadly heroic gesture in this place. Your mom is eight and a half months pregnant with your baby brother, and you’ve just emerged from another coma. You were on this floor less than three weeks ago, after you caught a cold that spiked your ammonia levels. Now it’s happened again, except this spike is worse.
Each hyperammonemic episode damages your nervous system, liver, and brain. We try to keep our minds off what the long-term effects might be. We’re just grateful every time you open your eyes.
On Christmas morning your grandparents and I bring the celebration to you. We ride the hospital elevators with armfuls of presents so many times that the receptionist stops making us sign in and out. Your little room is cold and antiseptic, but this day will be festive, so help us God.
You lie on the bed in a tiny hospital gown, eyes at half-mast from the drugs. You know today is special, and you’re fighting to stay awake. The IVs in the backs of your hands are covered by plastic protectors that look like a pair of clear boxing gloves and make your fingers too clumsy to unwrap boxes. Your parents, grandparents, and I unwrap everything for you, then parade the funny outfits and stuffed animals around the room.
Before you fall asleep — and before the nurse returns and wakes you right back up, making me want to scream into a pillow — I ask you who brought all of these presents.
For a moment your eyes open all the way. “San-ti Claus,” you whisper, brimming with belief.
Benjamin arrives when you’re two and a half. Your mom and dad have taken no chances. He was conceived by in vitro fertilization, a healthy boy, and I don’t love him as much as I love you. (A parent could never admit this, but I’m not your parent.) Your mom always wanted a big family, even when the two of us were kids, yet I can’t shake the feeling that your brother is an insurance policy. He’s here partly so that, if something happens to you, your mom and dad won’t be left with an empty nest. Maybe I just resent Benjamin for what he and I have in common, standing as we do on opposite ends of the contingency spectrum: a godparent in case something happens to the real ones; a second child in case something happens to the first.
But who am I to pass judgment? I shouldn’t question the motives of those who love you most. I’m not a parent — to you or anyone else. I’m just the wacky uncle, a tourist in the world your mom and dad struggle through every day. I can’t imagine how much every choice they’ve made has cost them. But I can’t help the way I feel: How dare they bet against you? How dare they replace you while you’re still here?
Except in the frantic days following your birth, your parents and I have hardly spoken of your disorder. I know how much it hurts your mom that she never got to breast-feed you; I know your dad only cries when he thinks about the life you face. But each of them still moves as though walking off a bullet wound, and I don’t know what right I have to press for information. The questions pile up: What did the doctors say at your last visit? When do they think you’ll need a liver transplant? Have they read that article I found? I’m tired of living in a malaise of uncle-fear, scared of what your parents aren’t saying.
Months pass. You have none of my hang-ups about your brother. You kiss Benjamin on the head every chance you get, grab choking hazards from his hands.
“No, Baby Benji!” you scold. “Keep you safe.”
Today Benjamin sits in his high chair, slamming pieces of potato against his tray with a strength you couldn’t match at twice his age. He’s in the midst of an experience you’ve yet to enjoy: eating solid food. Your meals consist of someone opening the cap on your G-tube and injecting a special liquid formula into your stomach. There are arguments over how this should be done. Behind your parents’ backs, your grandpa — my dad, who also moved to Houston to be near you and has aged twenty years since you were born — mutters that your mom and dad feed you too fast. He claims that if they’d do it slowly, like he does, you wouldn’t vomit so often. He likens their pace to stuffing a goose for foie gras. I wish he’d find a different analogy.
Soon you’ll start drinking your formula, and our family will argue over that instead: admonitions to not make you drink too much, because that could condition you to hate “eating”; to stop letting you listen to Taylor Swift in exchange for taking good “bites,” because feeding you is life-and-death, the timing and amounts precise and not something to bargain over.
“Show me a gorilla gulp,” I’ll coax, wiggling the green mixture in your face as you sit on my lap.
You’ll turn to look up at me, doleful and hopeful at once.
“Uncle Owen so proud?” you’ll ask.
I’ll think of the neuroses our family must be fostering in you. I’ll wonder how much emotional damage we’ve done, fixated as we are on your physical health. And then I’ll tilt the bottle against your lips.
Gorillas are one of the few animals besides humans who possess “theory of mind” — the ability to speculate about the thoughts and emotions of others. They laugh and grieve, and there’s mounting evidence of their capacity for spiritual belief. It’s possible they, like us, believe whatever is necessary to get them through the day.
Gorillas also think about the past and worry about the future. The latter doesn’t have a tight grip on you yet. In this respect you have the gorillas and me beat. You are one of only two people in this family who live even occasionally in the present, and both of you are less than four years old.
Benjamin pulverizes another piece of potato against his tray, pops it into his mouth, and cheers for himself. I imagine you two won’t always get along this well. When he’s older and wants to hurt you at mealtimes, he might chew in exaggerated motions, his eyes widening in mock ecstasy as you look on, your tasteless liquid medication (sticker price: $1 million a year) roiling in your stomach.
But it hasn’t yet occurred to you that the ability to eat is something to envy. Instead you smile and lean toward Benjamin and his pile of potatoes, your tiny chin in your hand like Raphael’s cherub.
“I allergic,” you tell him — the party line, for now. Then, as if following the same train of thought: “Silly Benji. We all have butts.”
“That’s true,” I concede. “We all have butts.”
“I have little butt, and you have big butt.”
“Well, I . . . yes, I guess that’s true, too.”
And just like that, you’ve brought me back to the present.
I prefer your gorilla games to the new games you’ve thought up. In fact, I’m partial to anything that keeps you active, since you’ve started to enjoy the park less and less. The last time we went, you sat against me on a bench and watched the other kids play, no matter how much I encouraged you to join them.
All your new games are calm, quiet, and heartbreaking; you play hospital and play sick and play dead.
You pretend your bed is the doctor’s office and insist that Dr. Uncle Owen put on the ratty hospital gloves from your medical play kit. You have the sequence of the exam memorized: first the blood-pressure cuff, then the thermometer, then a plastic needle pressed into the crook of your little elbow.
“Blood, blood, blood, blood, blood,” you sing, as I fight the nausea sliding up my throat.
You turn off the lights, and I draw the blinds. We lie down on our stomachs, and you reach to close my eyelids.
“We’re gonna sleep now, ’kay?” you instruct. “Sleep forever.”
I lie there and listen to you breathe. Sometimes you really do fall asleep, and I carefully place stuffed animals atop you one by one, waiting for you to wake up with a squeal and shake off the pile.
“I’m sick,” you declare with a smile.
I fuss over you, tuck you in with a soft blanket. I grab an empty amino-acid-powder container, left over from one of your formula batches, and stir a magical soup made of air. After I feed you a few hearty spoonfuls, we pretend you aren’t sick anymore.
One night, when your grandma and I visit, I take a turn feeding you your real formula, and you throw it all up. I used to take pride in the fact that you’d never thrown up with me, but now the streak is broken. The formula comes back up like a fountain, a sea-foam-green curve of pulsing liquid. Your parents kick your grandma and me out, saying we shouldn’t have stayed so late, that it’s too much excitement for you. On the drive back to my place, Grandma worries that your parents’ marriage is falling apart while I try to shake that last image of you standing in the sink, apologizing over and over while your dad rinsed you off.
There’s one game you play that I can’t stand. It’s the one where you put me in a closet or behind the blackout drapes in Benjamin’s room, then lean in close to whisper, “I’m gonna go, and you’re gonna be in the dark, and you’re gonna be sooooo lost. And I’m not ever coming back, ’kay?”
I can’t wait until you stop playing that game.
On nights when the worry that you won’t make it overwhelms me, I toss in the dark and try to picture you grown. I rehearse what I’ll tell you about this part of your life. It’s hard to imagine your parents being able to say much without breaking down. I’m the writer in the family; words are the gift I can offer. I imagine it will fall to me to share your story with you — some portion of it, at least.
Not too long ago I was visiting your grandma in Nebraska, and she wouldn’t let me buy a piggy bank for you. She was afraid you wouldn’t survive long enough to use it — said it was bad luck. I can’t live that way. I take the opposite tack.
I don’t write this to mourn for you, because you’re not dead. For now I refuse to believe you’re dying any faster than I am, with my chest full of cable and wire and mesh. I can’t let you read any of this until you’re a grown woman. I want to believe that if I keep writing everything down for the adult you to read, I can ensure that a day will come when you are that woman. This is my conceit, the game I need to play.
I’ve scribbled down many moments I’d rather forget, taken pictures of your unconscious body that make me shiver, all so I can capture what this was like. I want you to know the magnitude of what you’ve fought through and how strong you’ve always been. I want you to be as proud of yourself as your family is of you, every day of your life. I hope I get to pass this story on to you, and then it will be yours to tell.
But for now I’m Big Gorilla, and you’re Little Gorilla. I follow you into a future neither of us can see.
Owen Cason’s essay “For a Future You” [August 2020] moved me to tears.
I volunteer at a food pantry, and a woman came in seeking assistance one day because her teenage daughter’s situation was similar to that of Cason’s niece. The woman had quit her job to take care of her daughter, who could not have a birthday cake because she required a feeding tube to eat.
You never really know how crushing another person’s grief can be. Seeing it firsthand is a humbling experience.