Notes for the Everlost

by Kate Inglis

  * * *

  DISCHARGED: cleared; dismissed; freed; fulfilled; detonated.

  * * *

  Pictures showed what I couldn’t see in front of me when it was happening. He bloomed as he graduated from the ventilator, almost plump in his stability. But a few days later, his head began to swell. On top of the flood in my womb, oxygen deprivation at birth, brain surgery, and heart surgery, he had developed hydrocephalus—water on the brain.

  Two weeks later, poring through the images, I could see with the same brutal clarity what the nurses must have seen. His face was a grimace. The shape of his head, the pallor of his skin…he was lost. Even as they wheeled him away for the surgery that hoped to save what was left of his brain, I hadn’t considered the possibility he would take a turn. I was placated by the fact that he looked so much better than he had at birth. I dared to hope he may not only survive but be unscathed. Almost like a healthy baby.

  Delusion can be self-protection. We walk beside our children and hold their hands as long as we’re able, even when we despair at their path. Especially then.

  * * *

  You might worry your heart is full of holes and that a heart full of holes can’t function properly. Now think of all the things that do exactly what they are meant to do thanks to their holes, large or microscopic: sponges, soufflés, the foam inside life jackets. Your holes are buoyant. So are mine. Your holes make you lighter than you look.

  * * *

  In the odd space between Liam’s death and Ben’s release, I sat one night at home, pumping breast milk for the next day’s hospital shift as Evan’s two-year-old voice echoed in the gurgling empty of his bath.

  “I show mama!” He careened around the corner. “MAMA!”

  He leaped into my lap and threw his pudgy arms around my neck, steaming-fresh. “I ha’ BUSY DAY! I see FWIENDS. I pway in a-pwaygwound, a-big TWAINS! A-dis way, mama. I a-jammies. Cuddle, pweeze!”

  “I can’t love. Soon! Mama has to make baby food.”

  Evan curled up and watched, his eyes fixed on the drip-drip- drip.

  “Mama make a-boobie milk,” he declared. “Aah…[as if deciding] a-dis one for Ben, a-dis one for Leee-am.”

  I decided it may as well be then.

  “Evan love, Liam doesn’t need mama’s milk anymore. He’s a star now, watching over you. He’s okay, he’s a happy baby now. But he won’t be with us.”

  He scrunched his forehead.

  “No mama. Dis one’s for Leee-am. Dat one’s for Ben. Dis one’s for Leee-am. Leee-am! Thomas. James. Skarloey.”

  He huffed off importantly to arrange his trains into parking lots. From the other room came a crash-bang as a basket was overturned.

  “Aah! Misser Toppem Hat. Liam. Twubblesome twucks. GORDON!”

  Gravity is randomly selective. The bare bum and wet neck of a warm two-year-old can fend off the pull for a time. Lots of other things can too. A cast iron skillet full of tomatoey French lentils simmered with marsala wine, the stirring of which gives you a twenty-four-minute reprieve from actively remembering your baby is gone. For a moment, things will be okay. You’ve made some nice supper. Gravity ambles off elsewhere to affect the mass of someone else.

  * * *

  People at a loss for words might say stuff like this to you: Your story makes me realize how easy we’ve got it / how insignificant my problems are / how lucky I am. I think my life is so hard but then I think of you.

  You’ll imagine taking them by the shoulders, pulling them close, and kneeing them in the groin. Wait. No. A falling anvil! A flaming bag of dog shit! A trip wire and down they go, and you have a SLOW-MOTION REPLAY button and you hit it again and again.

  They’ll say Thank you for reminding me to hug all my favorite people a little tighter today, because I can!

  You’ll say You’re welcome.

  You’ll stew about it for a few days. Then you’ll soften up and let it go because you’ll realize you might have once been, at best, at a loss for words. Or at worst, the justified recipient of someone else’s fantasy flaming bag of dog shit. We are a clumsy bunch when it comes to tragedy, especially in the West. We don’t understand it at all until we understand it too much.

  Before Liam, I didn’t know how perilous and unlikely it was to be alive. I knew it, but I didn’t. His death was a total breakdown of every assumption I didn’t know I’d been assuming. What is good? What is love? Why everything? I had felt intentional in my life to that point, but I’d been bumbling along eating crackers, futzing over the way my belly stuck out. The conundrums we inherit as sentient creatures…I thought I knew. But I didn’t. Not to say you are unenlightened until you suffer deep pain. But that’s how it was for me.

  As the only animals who know we will die, how should we live? This is the sweet and futile agony. It’s where every inner monologue comes from. We obsess over happiness, completeness, and chemicals that gently cover gray hair. We buy heart-shaped rocks painted with Stand in Your Truth and Brave Is Free. Somehow, despite knowing loss will happen to us—and that our own ashes will someday be inside an urn on the lap of somebody who loved us—it’s still incomprehensible.

  Yet here we are. Still bumbling, but awake. Hello, you.

  In a dream you and I are wandering the streets. We’ve got black scarves over our faces and fistfuls of heart-shaped rocks. We are hunting for unbroken glass.

  * * *

  After the first year, I would go for the odd stretch of days—sometimes even a week—without thinking of Liam. Not consciously, anyway. Then at the end of April I’d be scrambling an egg and my brain would jump out of its chair and shout IT’S ALMOST MAY, and I’d remember.

  This time last year / two years ago / three years ago

  He was still alive.

  But it was all about to go wrong.

  I’d remember my stretched-to-bursting roundness and the gurney. I’d remember Liam spread-eagled helplessly, purple and swollen, Ben so tiny that a photograph needed visual context like the grip of a fishing rod next to a trout at the bottom of a boat.

  In that first year I spent a lot of time with my face squashed up against Ben’s, spitty cheek to mouth, mouth to ear, whispering and tickling, pressing up against his skin with mine because it soothed him. Or maybe I needed a little for myself.

  Nine years later, I shouted, “Kids, come quick! We’re doing the cake rocket!”

  It was Ben’s birthday. There was a thunderous scramble as a dozen sets of feet came hurtling into the dining room to land in skids on the floor, all of them watching the waiting match, their mouths hanging open in smiles or chattering to each other:

  Move over, you’re sitting on my foot!

  I saw one of these cake rockets once at my cousin’s house!

  What!? Fireworks! Did you get that at the Dollarama?

  After this I am gonna get you!

  Ha, ha no way!

  Why are you only wearing one sock?

  I wish Liam were here!

  I heard Ben’s voice as pssshhh the cake lit up.

  Later that night, watching him with a puzzle: “Ben, that was nice today, by the cake, when you wished Liam were here.”

  “What?”

  “When you said you wished Liam were here.”

  “I didn’t say that out loud. Did I?”

  “You did, love. It was nice.”

  He smiles distantly. He’s unbothered and cheerful and busy. I think about all the brothers and sisters, aunts and uncles and grandparents, and you and me, reaching, laboriously and privately, to find our way. Calling on today’s imagination to underpin tomorrow’s integrated world, months or years later, in which we remember, pause, wish, and then run outside to shoot our best friend in the butt with a nerf gun.

  * * *

  I still can’t believe she’s not alive anymore, wrote a friend of her baby gi
rl. That she was born so sick. That she lived for two months and then died. When does that stop happening, the disbelief?

  I replied, Probably never. But it changes.

  First, the child—or the potential of the child—is gone. Then you feel gone, too. You spit venom at anyone who would dare presume to either cross this gulf or heckle you from the other side of it. Death has draped one and then two silky-thin veils over you: one is anger, and the other is concentrated affinity, compassion, and longing. The resulting effect is disordered, unconvincing either way.

  A thousand and then a million things will call you into the world again, even if it’s fleeting. Proper Scottish oatcakes steaming fresh on a cooling rack. Street art on your way home. A boss who says Hey, you were great in there. Even children—those belonging to other people or to you—will tap hairline fractures in your rage. But it’s not the rage you have to learn to live with. It’s the way you’ll become ordinary again. It’s how you’ll become alright almost against your will. People will see you at a farmers market and whisper Look, her baby died but there she is with a basket of Swiss chard. Gosh. The poor thing. You’ll see it on their faces and you’ll feel a rush of betrayal, because you’d only been thinking Yay! I got the last Swiss chard. You weren’t thinking of yourself as a poor thing. You might have not been thinking at all. Which might be a miracle. A horrible, normal, awful, blessed, guilt-ridden miracle.

  On hearing the stories of other losses and illnesses and tragedies—some unfolding right now—I’ve found myself thinking I could not survive that. But I would, and you would. With bruises, with subsequent domino effects, with dreams of falling anvils and flaming bags of dog shit, with unexpectedly peaceful days or weeks that happen despite us; and then the tears come back and the wheel turns and turns. There is another side, sort of. We build a bridge. Every tear is a nail and every sigh is a hammer.

  Don’t go, my love. Don’t go, my grief. Stay a little longer.

  * * *

  “I just forgot. I keep them in my makeup kit, and there were three slobby days in a row so I’d blown that month. Then when it came time to start another month I…forgot.”

  I was staring at the floor.

  “Do you know what this is?” asked my doctor. She answered for me. “Subconscious self-sabotage. Please do not do this.”

  She pressed a refill prescription for birth control into my hand.

  “I have more pills at home. Probably.” I mumbled.

  “I’m giving you this to make doubly sure,” she replied. “I am sending you to the pharmacy with a police escort and porcupine-quill panties and a sandwich board hung around your neck that reads DO NOT IMPREGNATE ME: I AM EMOTIONALLY UNSTABLE.”

  Something like that, amounting to This is not the time. Not physically and not otherwise. I denied I’d even consider it, but I was lying. I felt urgently in need of punishment, and pregnancy would be that. Punishment, penance, a screw you to the universe. Ten years later, I remember the soft, immediately post-trauma Nope, nope, nope of my doctor as the loving shush it was intended to be. And it applies to everything. Open space comes back again. But not until a bagel is just a bagel.

  * * *

  For a while, I drove a minivan. Then one of three assumed children died and all I could see in the rearview mirror was an unnecessary void. With the third row permanently folded down, the back was a cube van. Runaway cans of chickpeas and spare diapers and half-eaten, fossilized snack remnants rolled from port to starboard like rats on a battleship. So we sold it. As we drove away from the dealership in a secondhand Volkswagen, I turned around in my seat to keep the offending Mazda in sight as long as I could. I don’t know why. I hated that thing.

  Except I do know why. I had started to embrace the inevitable spectacle of three kids, of twins. Two highchairs, two hats, two Jolly Jumpers side-by-side. And a minivan. After the NICU, we emptied our house of extras and with every trip to the secondhand shop, I’d think He never felt grass and He never heard music and He never tasted ice cream. I watched through the rearview mirror with tears dripping off my chin. I wanted to need that van. From a new back seat Ben farted in his sleep, one of those rich, healthy toots, and the spell was broken.

  * * *

  A wise friend wrote to me: Some think by expressing sadness or rage or self-pity, you are lacking in compassion by not remembering the suffering of others, or by making others uncomfortable. But by refusing grieving people the opportunity to pass through those dark emotions, we deny compassion to you.

  For a while, you may consciously or unconsciously deprive, self-medicate, self-isolate, or punish yourself. You may run away in small ways, or in big ones. There may be a jealousy of others you perceive to have been spared, and the guilt of feeling like you’re wishing ill upon others (you’re not). You’re likely to have little patience for women whose labor complaints amount to pissing a little each time they sneeze. You certainly won’t have patience for family members who make it broadly known you should get over it already. You may flee from pregnant women in supermarkets, one piece of hundreds in an instinctual jigsaw puzzle that also includes an intolerance for emotional chickenshits, public panic attacks with no apparent trigger, and lead-balloon cremation jokes at neighborhood potlucks. It’s necessary and normal, all of it. Hammers and nails.

  The anarchist in me says SCREW GRACE. The anarchist in me wants that bumper sticker. The anarchist in me, remembering how grief felt in its early years, feels ferocious in defense of you in your early years. To install as a shield onto the surface of your brain and heart, because we all carry enough pain without volunteering for more:

  Be an unnavigable hermit as long as you need to be. Acknowledging the pain is the only way to allow it to get on with its business, to scab over. Anyone who tells you you’re doing it wrong can eat shit for breakfast.

  Grief is necessary, honorable, and healthy. Ordinary will find you again when you’re ready. The people around you will either adapt and earn their stripes or they won’t.

  Grief is neither finite nor linear, but there is another side to it. You are already a bigger, more open, more powerful person than anyone who’s currently making you feel small. Despite not being reliably even-keeled, you are more compassionate now than you were before. You know how it feels to cradle an urn in rush hour traffic. Progress is knowing it’s not your fault some people can’t bear the taste of black licorice.

  * * *

  I lay there, said the soldier to the CBC radio reporter, and my legs were gone, and people were running and screaming, and we could hear gunfire. I looked down. The sand was a sponge where a pool of my blood should have been. I left myself there. Afghanistan absorbed me.

  Six months or so after Liam died, we were at the hospital for another of Ben’s preemie checkups: the usual hemoglobin scores, blood pressure, weight, length, head circumference, medication dosages, physiotherapy tests, kidneys, vision, hearing, developmental milestones. We chirped and cooed and he tracked with his head, responding. He was little, but viable.

  Next, down the hall, was a meeting to review the details of why his twin was not.

  The word autopsy—meaning analysis, debriefing, explanation—is a misnomer more often than not, unless the subject was (1) hit by a bus or (2) eaten by a tiger. Chances are good you’ll walk away unsatisfied. The doctors may be dutiful and deeply studied but when any human being dies “before their time”—before white hair, before a life is fully lived and neatly resolved—there is no why to be discovered. Often not physically, and certainly never cosmically. We like to think we know all there is to know about the human body, but we don’t. Our ability to measure and observe has advanced faster than our understanding of what we’re measuring and observing.

  “There was a deviation.” The specialist pointed to a screen, just like when Liam was alive.

  “What does it mean?” Somehow, I knew how this would go. But I asked anyway.

 
We don’t know.

  Why are we here, then?

  We don’t know.

  Was he in pain?

  We don’t know.

  Would he have ever been able to communicate?

  We don’t know.

  Will it be windy tomorrow?

  We don’t know.

  Why do you have to buy all the cable channels when all you want is HBO?

  We don’t know.

  Was there a deviation?

  Yes.

  “When I cut into the brain…” the doctor began.

  Yikes. Some preamble would be nice. A “Before I get into details, I want you to know we did the right thing” would be nice. I looked at his hands as his words reverberated through the room.

  “…it became clear there wasn’t much left,” he continued. “It was just gone, huge chunks of it. Much of it was just an outer film, a jelly on the inside. We still don’t know if it was the bleed or the oxygen deprivation at birth or the hydrocephalus. But what brain was there was highly compromised, and the rest of what should have been there…wasn’t.”

  The same doctor, during rounds, had once marveled at the birth of neonatology as a Coney Island sideshow called FETUSES OUTSIDE THE WOMB. In one breath, I nodded. In the next, I scowled. But I understood. First responders are the same way—firefighters, paramedics. Incidents anyone else would see as carnage are interesting for them. Carnage makes the day go fast. A great big disaster is a leap into action. To respond is everything they study and train for. It’s why they call medicine a practice. But in the NICU, responding is a particularly uncertain business. Its doctors have no choice but to be evasive because tending to premature babies is speculative at best. Some babies that aren’t expected to survive end up surviving. Some babies that shouldn’t die drift away. Irrevocable damage is reversed. Routine healing hits trip wires, dashing every hope. Surgeons who work in miniature are sympathetic, bless them, but they’re mute in the face of desperate parents who sob Please tell us everything will be alright. It might be. It might not.