Notes for the Everlost

by Kate Inglis

  * * *

  I don’t get it, a friend wrote once. Not only do I not “get it”—it pisses me off when people say there’s a god. People who would put more stock in some imagined higher power than in real people and treat that imagined being with more respect than they treat real people. If god’s so great, why did the Rwandan genocide happen? Why does random tragedy strike good and honest people? Why do people who sincerely think they’re good and honest do terrible and selfish things, still carrying on thinking they’re good and honest because they wave a bible around?

  (Friend: one. The gods: zero.)

  Bullshit, she continued. There’s no heaven and no hell. There is only now. As I age, I grow more sure of this, that my life will end when my body expires, that I will live only in memory, that I might support a tree or a berry bush when I’m gone. I find comfort in the continuity of my atoms.

  I would only, if ever, subscribe to a god who would fully endorse disbelief and questioning, recognizing we were explicitly programmed for it. Fossils and old-growth forests and the fascinatingly irrefutable age of our planet’s rocks negate any literal interpretation of the holy books, though they’ve all got poetry and gravitas. The problem is that religious organization of any bent corrupts itself into a parade of bullies and sheep, sustaining itself by making critical thinking the bad guy.

  I’d like to think there’s something out there, though. Something older. A spark. A flame. Millions of them reflected millions upon millions of times as we observe the energy and wondrous interplay of the natural world.

  So I replied Don’t you think there’s too much mystery to reduce it all to dust?

  Nope, she wrote.

  I tried to explain. The morning Liam died, something was in the room with us. I could almost touch it. It’s left me open to the possibility of a presence that’s a lot more complex and sensible and sad and more uncertain and more full of love than any religion would ever allow.

  And she replied, Not to dishonor that night for you, but don’t you think that was just your heart?

  Nope, I wrote, but not without a pause.

  I have wondered if I was unhinged, if I invented magic where none existed. I’ve wondered if the presence in the room that day was just the intensity of the moment. Perhaps he was just an egg and a sperm that divided and gestated into one of two human babies, and who was betrayed by his mother’s placenta, was born sick, and then died to be turned to ash and set loose on a lake because his parents are sentimental, thinking it would somehow make him free to come and go as he pleased. He did not watch our red canoe. He did not come to me in that special kind of light. He was not brave. His brain was simply so damaged that he was numb to the ophthalmologist who propped his eyelids open with wire spiders to prod his retinas while Ben screamed throughout the same procedure, as healthy babies do. He was not my resolute protector. He was just a baby we called Liam because that’s what popped into my head at finding out we’d need two names instead of one. Perhaps.

  Contemplating dust and the randomness of atoms doesn’t rob me, or him, of any grace. It is grace. Its energy granted me the most shocking moment of my life—a moment I don’t think I manufactured. But of course I wouldn’t think that, would I? For a long time, the question lingered like a stink. Was I grasping at straws? Had that moment been the impulse of my own desperation? Had Liam simply disappeared into nothing?

  I had to smile with my eyes as well as my mouth or else my living children would see. I decided to hang on to the gift I’d been given: to that very firmly felt, wholly unexpected lifting. The presence. I decided to stop studying it. When his struggle ended and his life left his body, something took him for me. I felt it. There was palpable peace, joy, and lightness. It wasn’t mine.

  * * *

  The mountain forests of British Columbia are the world’s most grand cathedrals. Hallways and altars and grand columns thousands of years old rise from rich, deep moss-velvet. We returned home to Nova Scotia, land of pirates and rumrunners and a meat grinder sea, to have babies near family and buy an old house with some land for cheap. For a long time, with no peaks, the horizon felt empty. The woods were a shag carpet of stunted and unassuming gnarliness. Legions of black spruce stood like matchsticks in comparison to the West, more determined than glorious.

  The day Liam died, we drove home for a rest after the nightlong vigil of his death, leaving his surviving twin in the nursery and longing for the sticky and oblivious toddling of their older brother. I rested my head against the car window and stared out at the blur of brackish Eastern forest. I had told him, as we lay through spells of breathing and spells of not: Climb in through my ear and sit down cross-legged behind my eyes. I’ll move my head back and forth and show you things.

  He had died that morning but the world still existed. Cars on the highway. People waiting in drive-throughs for double-doubles and Boston cream doughnuts. As we crossed into Lunenburg County, I saw a bog of threadbare jack pines. Look, Lili. Look how they’re proud of their prickly tuft. They get up to mischief with the crows.

  They were no cathedral, but with eyes for him, they were suddenly just as grand. For the year that followed he was inside me again, with all his voices that might have been. He sassed, a teenager. He sat for tea with me, a father. On darker days I snarled at myself that none of it was real. I don’t know it matters either way. We talked, and he stayed. That’s how it felt until the window closed.

  Lili baby. You would have loved all this.

  * * *

  I peered over the edge of the canoe and saw flecks of bone and ash swirling on the brandy-brown lake like stars in an upside-down sky. How did I get here, watching the remains of my son drift in an eddy?

  Trees and clouds and blades of grass throbbed with the same presence that had brushed up thick and vivid against my cheek as he died, but they said nothing. Later, in the cabin, I sat as close as I could to the fire, staring at embers until my face flushed hot.

  Fuck you, death.

  Thank you, death.

  Death smiled in a tired sort of way. It always does.

  * * *

  People saw us and lurched. Some turned away. Some asked, staring at their shoes, how we were doing. I learned how to respond with a nonresponse.

  It’s been rough, but we’re okay.

  The more we find out about just how injured he was, the more we realize he couldn’t stay.

  We’re just trying to focus on what we have.

  I had spent Liam’s life wandering hospital hallways and nursing stations and pumping rooms with rat’s nest hair, red eyed and puffy faced. Those six weeks brought more tears, terror, and panic than I’d ever felt in my life. Then he was gone, and sometimes in conversation I’d slip into the clinical highlight reel because I couldn’t handle one more We’re okay for the sake of keeping the room comfortable. I’d either make people cry or stare at their shoes. I’d like to think I didn’t mean to, but maybe I did.

  Alone, I’d smell antiseptic. I’d hear the machinery, the alarms, the chilling squirt of the line into his scalp. I’d feel his skin on mine. For years, I would meet people and think: Ask me how many children I have. Ask me so I can tell you three, but only two. Ask me what happened.

  What I wanted was a lapel pin: I HAVE AN INVISIBLE SON. And more rooms that didn’t mind. I wanted people with the fortitude to hear his name. And when I found rooms and people like that, I didn’t need to say much after all.

  * * *

  As she took Liam’s body away, our nurse had pressed a ceramic heart on a string into my hand. It had a hole in the middle of it. He will have the other piece, she whispered, as she wrapped his body in a blanket, carrying him as though he were still alive. You will always be connected.

  She left the room with the bundle that was him. I wouldn’t see his body again. The next time I held him, he was inside an urn. I didn’t know. I don’t know what I thought, but
I didn’t know. Why didn’t I follow her down the hall? How could I have done that? I passed him to her the way you pass a baby around a dinner table, like I needed a break to fill my plate.

  Take it easy, Mom. His fifteen-year-old voice. You were tired. They had to do it and so did you.

  I wore the ceramic heart around my neck until I caught it kissing someone else under the high school bleachers. At my friend Bon’s house, months later, I peered closer and startled when something caught my eye in a photo of her son Finn’s urn. Around the neck of it rested a little heart. It was the center of the empty one given to her the night he died. It matched mine.

  I had been cycled through the steps the hospital takes when a mother loses a baby.

  Did the fact that it had been procedure make it any less genuine or meaningful? Instinctually, in that moment: yes. I had been deeply moved. I had hung on to it sometimes, feeling the smooth warmth of it against my breastbone where his head had been. In some boardroom, a committee had decided a ceramic hole-in-heart would be line item number twelve on the Infant Mortality Response Strategy. I had fallen for it, a bureaucratic trinket.

  Suddenly I wanted to take it off. The empty heart didn’t connect me to him at all.

  This was just a contrivance. But how will I have Liam with me, if it’s not this? Dammit, I just gave him to her and she took him away, and I didn’t know that would be it, and that was it.

  He was gone all over again. My stomach turned. I was desperate for something to hold, but I didn’t want it to be from the lobby gift shop of the building where he died. I put the ceramic heart into the sailmaker’s chest where I keep all his things: a three-inch-wide diaper from the NICU stack, oxygen leads, the blue tape that held it all in place, the daily journals the nurses wrote to us. I never wore the heart again, but I’ve forgiven it. It means something different now. The empty heart was never a match for Liam’s. It was a match to other mothers and fathers who fell into this pit, stayed there a while, and eventually climbed out.

  * * *

  Two months after he died, on the eve of our release, I sat in the transition nursery feeding Ben. A young nurse sat in a rocking chair next to me, resting for a moment. After a long span of quiet, she made a confession.

  “I was there, you know, when they were born.”

  Her name was Julie. I had been walking around with staples in my belly, and she’d been there when it happened. On the night everything went wrong, she’d seen my guts all sprawled out. I hadn’t known. She continued, almost in a whisper.

  “It was the scariest thing I’ve ever seen.”

  Thinking they were pulling up bootstraps, some people would say the most awful things. They’d say Count your blessings or Everybody hurts or You’re not the only one that’s gone through pain. It was cruel, maddeningly so. I wasn’t pornographically sad. I was a mixed bag of dark days and decent days. I tended to regular things, hiding what spun nonstop behind my eyes. In flashes of misguided vulnerability with the wrong person I’d share a small piece of the sadness and they’d say Why do you think you are so special? I’d stare slack-jawed, in shock.

  In a parallel universe, I stood up for myself: You are the one who isn’t brave. I am the giant.

  Every now and then, a different sort of person—someone who wasn’t afraid—would look right at me and say I am so upset this happened to you. I would crouch over it hungrily like a bear with a carcass. It was sustenance.

  It was the scariest thing I’ve ever seen, said Julie, who had been with us all along.

  “Thank you,” I said, which is as much a strange thing to say as it is the only thing.

  Years later, Julie landed in the NICU with her own twins, one of whom died. It was almost poetically eerie, as tragic coincidences go. She wrote to me How did you get through this?

  I don’t know, I responded. But you will.

  * * *

  I had always assumed a certain life order: childhood, school, puberty, sex, career, taxes, marriage, gestation, birth, motherhood, gestation, birth, sweatpants, early morning hockey rinks, drugstore highlights, an empty nest, grandmotherhood, retirement, twilight, illness, death. I assumed nothing less for the ones I would love.

  For my son it was injury, death, birth, injury, cutting, a rally, more cutting, then twilight, then death again, all inside six weeks of climate-controlled antiseptic beige. Now, he is decade-gone particles of blood and bone and muscle burned up and scattered in a lake and churned a thousand times over in the bellies of a perfect and peaceful ecosystem. He is my darling but he doesn’t need me, and that’s not motherhood. It’s something else.

  As we age we collect spirit darlings. They rub together to form the heat of lost opportunity, unrequited adoration, hope, fear, tragedy. At first this heat sears and spits. Especially the first few times. It will happen again, and again, and each time we will absorb the lesson a fraction more until we learn it fully on our own deathbed: love is the only thing. There is no riddle, and there is no unfairness. All we can do is feel love and offer it without requiring it in return.

  That is what this is.

  * * *

  I am dreaming. Liam died. I am driving to the hospital to see Ben.

  Something took him, didn’t it? Or was it just me?

  The world splits in two. In one, the front end of my car is crushed, splattered in blood and fur. In the other I swerve, and the deer escapes, and so do I.

  CHAPTER THREE

  What Now

  Finding your way through grief after the first year, when you begin the work of integrating (a better word than healing).

  YOU’VE GOT to get up and make breakfast.

  You’ll lie there for a while resisting, thinking all kinds of insensible things people think when they get up to make breakfast after somebody dies. Especially after a child dies. Like how you don’t deserve to eat. Like how your jerk body just carries on, dumb and deaf and pumping like the meat suit it is, taking stuff in and processing it and making energy and pushing it out. Why does one soft machine work when another doesn’t? It’ll make you stare at a bag of bagels, sighing, for longer than you should.

  A few words about sighing. This is important.

  If crying is the body-wracking shrieks of a three-year-old separated from a bookstore train set, I didn’t cry every day. If crying is a face dripping silently while staring into space for a minute or an hour, then maybe it was every day, and for quite some time. This is how the bereaved follow their love. All other ways are closed. And as soon as we ease away from the sighing and crying and staring into space—who knows when—we’ll mourn the mourning.

  In trauma, the concrete that separates regular life from golden tickets and glass elevators and giant peaches thins to a veil. Through it, we can see and hear and sense the other side. When you cling to it, you’re not wallowing. You are integrating.

  Grief is not an illness, a diagnosis, or a constant state. Grief is the bruise after a blow. Blackening is normal. Swelling is normal. Then a rotten sort of putrid. Then it sinks beneath the skin, failing to mark you anymore, failing to excuse you, returning you to the masses before you’re ready. You’ll miss the black and blue because as soon as it fades, you go from “honoring” to—as your onlookers might say—“dwelling,” that damnable word.

  The losses that can follow loss—those of identity, personality, spark, ambition, humor, sex, focus, optimism, appetite, intimacy, faith, partnership, friendship, self-love, unconditional acceptance—feel irrevocable. If only we could lighten ourselves of the burden of counting what’s fair and what’s not. But we can’t. It’s the great cosmic prank: our inability to stop counting is the very missing link between us and our simian cousins. All the gods know it.

  * * *

  The pamphlet was a piece of paper folded twice, a photocopy of a photocopy. On the front was a line drawing of a woman in bell bottoms and a turtleneck sweater, her head i
n her hands. The title read, Booklet of Normal Feelings.

  At one of the hospital’s fruit-punch-and-cheese support groups for parents in the NICU, a social worker had appraised my glassy eyes. Reaching for the melon balls with one hand, she pushed the pamphlet across the table with the other.

  “You should read this.”

  I looked at it with a frozen face as the parents around me chatted nervously about jaundice and reflux. The room hung there, a study of two-bite muffins and Styrofoam cups. I stumbled out into the hall and she followed me.

  “You forgot your bag.” She pressed it into my arms. “Kate, I think we should talk about what you might need, you know, to get through this.”

  “Okay,” I replied. She gave me a ten-dollar gas coupon. Then she walked away.

  They provide the diagnostics, the pharmaceutical goo, the doctors trained in medical science as well as the compassionate art of saying We just have no way of knowing. That’s a big mandate. Often too big to tend to the emotional shrapnel for families as well. The hospital must triage, assigning degrees of urgency, and my feelings as the parent of a gravely injured or dying child are way down the list. Even if they weren’t, how might we better initiate new arrivals to this alien world? Is it even possible to mitigate the shock of it? How might we better protect and honor parents in the face of do-not-resuscitate orders for their baby?

  We, the suffering and the bereaved, can’t possibly be cut loose in a world where people still run for the bus like it matters. We can’t possibly.

  But we are.