Notes for the Everlost:
A Field Guide to Grief
September 18. 2018
When Kate Inglis’s twin boys were born prematurely, one survived and the other did not.
Part memoir, part handbook for the heartbroken, this powerful, unsparing account of loss will speak to all who have been bereaved and are grieving, and offers a beacon as we practice integrating loss into life.
Inglis’s story is a springboard that can help other bereaved parents—and anyone who has experienced wrenching loss—reflect on emotional survival in the first year; dealing with family, friends, and bystanders post-loss; the unique survivors’ guilt, feelings of failure, and isolation of bereavement; and the fortitude of like-minded community and small kindnesses.
Inglis’s unique voice—at once brash, irreverent, and achingly beautiful—creates a nuanced picture of the landscape of grief, encompassing the trauma, the waves of disbelief and emptiness, the moments of unexpected affinity and lightness, and the compassion that grows from our most intense chapters of the human experience. —Shambhala Books
The story of Liam & Ben: part one
Liam Stewart and Benjamin Peter were born on Saturday, May 5 after an acute case of twin-to-twin transfusion syndrome and a possible placental abruption. We are in hospital and will be living here with the boys in the NICU for a few months. They are with us, but barely.
3 AM: that familiar heaviness. Bagfuls of marbles, as I know they get for me. But there’s liquid gold in them there marbles. Despite everything I can be useful. I can contribute to healing instead of just going down there and falling apart.
I’ve never even been stung by a bee, I remember telling the doctor as he put the mask over my face. He smiled, even as I saw his eyes well up at what he knew was such a grave day for our babies. Why do bad things happen—chaos theory, karmic punishment, God’s master plan?
So far, time passes quietly. Both boys are on various degrees of drugs and ventilators and life support, and each day the doctors test their limits a bit more, coax major organs and body functions towards regeneration and independence. Tiny steps forward and backwards.
Love makes me greedy. I want the world to be as vivid and as accessible for them as it is for us, unhindered by disability. Is that too much to wish for, and to want it so badly? To wish for them to overflow with ordinary life, with school crushes and soccer practice and stinky socks?
They just took Liam into the OR for heart surgery. The doctors say there's a five to ten percent chance of a threat to his life. 'His blood vessels are like wet kleenex,' she said. 'We have to be careful.' Never has five to ten percent been so significant.
In the realm of preemies, it was routine—but the first intervention beyond IVs, medication, and stat-watching. He was wheeled away from us to a place where they'd breach his skin. It got the better of me, the thought of it.
I want to flip off the universe by having more babies. Healthy babies, a circus-troupe gaggle, and normal labours for once, for chrissake, to prove my worth and be absolved of what happened to the boys.
Many of you have shared stories of twin-life and NICU-life and survival and loss and faith. Others have simply sent one line: I’m sorry for you. This all just sucks. It's full of good-salts, like miso soup on a hangover. I can’t thank you enough.
TPN at 6.4, lipids at 1.18. 1 cc of breastmilk every 6 hours, but with triple-antibiotics we'll stop feeding for a day. His chest is wet and crackly without suction. No murmur, temp is fine. His chem strips were 7.6, 6.4 and 8.1. <blank stare>
Ben, the little spitfire, opened his eyes in the past couple of days. Black saucers, all-eyeball. At this point I'm no more than light and shadow but as I move into his line of sight he turns his head as if to address me. 'Okay mama. Here’s the way I want things to be.'
I’m calm when it makes no sense to be calm. I’m a mess when it makes no sense to be a mess. I change the diaper of my two-pound son. I screw it up and get poop on the bed, which is a pain in the ass for the nurses, but I’m in there, trying.
I could accept if Liam doesn't make it. 'Accept' as in rationalize. I would be forever gutted, but I could distill meaning from it. The only other outcome I can accept is that he will defy everyone, completely unscathed. What if he lands somewhere in the vast gulf in between? This is most likely, by a long shot.
It's a milestone: Liam is off the ventilator. He may have hiccups, backsteps. But it is such sweetness to see his face unobscured by complication. He gurgled at me, pulled faces in the nervy twitchiness of preemie sleep. Today, magic from both boys had me smiling all the way home.
The pessimist in me grumbles he’s blowing a little sunshine our way to soften the ‘brain damage everywhere’ news. He’s cutting us a break, seeing no point in deflating us with an unmendable truth. But the doctor is genuinely puzzled, I'm sure of it.
Everyone tells me how important it is to think positively. Then, daring to, I am clearly a deluded fool. We're being managed by the doctors, I think, because they just want to finish this shift and go home. I wish we could just go home.
We are torn between despair and optimism. No matter what you say—whether it's I'm sorry for you or Hang in there—we drink it up gratefully. I just wish we could choose one camp and stick to it. To feel this way, both drawn to faith and abandoned by it, is to feel completely rudderless.
One month down. Two months to go, as the optimist flies. I am on auto-pilot, a blur of NICU rounds and charts and highway driving and fluorescent lights and boob-sucking robots that tractor-beam me from one end of the hallway to the other, wheeshing FEED-ME-SEYMOUR!
I wish I could stop time-travelling. 'Last time I saw her, I was a few days pregnant but didn’t know it.' Or 'Last time I was here, I was pregnant, and the boys were whole and safe. Nothing bad had happened. I was still just myself.'
Evan makes fart noises with a squeezy toy in the bath. "Dat's RUDE!" he giggles. But everything normal is trumped by everything else. Now. at 12:33 AM, a neurosurgeon is putting in a shunt to relieve pressure on Liam’s brain from hydrocephalus.
He is out. Bandaged and flailing a bit, surely feeling like he's been put back together backwards. I remember how that feels, if even a little bit.
Liam died this morning, our sweet and miraculous son. It was all just too much, the doctors tell us. Birth asphyxiation, the bleed, hydrocephalus, the shunt, a collapsed lung. During the operation they realized the damage was much worse than the worst of ultrasounds. He was breaking down.
We drove home today from the hospital, from one boy to another, and I rested my head against the car window, stared out at this land-borne ocean of brackish green. And suddenly there he was: Liam, the blur whizzing past him, full of amazement.
Pictures show what I couldn’t see in front of me. He bloomed as he graduated from the vent, looking almost plump in his stability. But then, a few days later, he began to falter. I can see that now, tentatively venturing into the ancient past of two weeks ago.
Now he's gone and I am tapped of grief, exhausted for the time being. In ordinary conversation I slip into recalling the clinical highlights of the most difficult night of our lives, which happened just over a week ago. Then I walk away feeling callous and cheap.
'My mama is a birth warrior' says the tiny t-shirt, one of two. Sent from a distant friend to say 'be proud.' But a while back, several days before we lost Liam, it felt fraudulent to be on the receiving end of such a sentiment.
I rolled him down the hallway in his crib-cart, stomach butterflying as I looked down at him in his nest. I’d picked out something for him to wear, the first time. No more nubbly PROPERTY OF N.I.C.U. sleepers for us. From here on in, he’s an all-stripes boy. I guess this means he’s finally ours.
Liam would squeeze my finger, giving us time to fix him onto our souls. Reflex? I'm choosing not to buy it. Ben still doesn't grip like that. Compared to his old-soul brother, Ben is shiny new, a face-value boy.
The single, long alarm rings across the paging system. NEONATAL TEAM TO ROOM 311, STAT. Said once I could pretend not to hear, drift back into uneasy sleep. But echoing in my own private darkness, I’m left boggle-eyed. They said that for us.
On the cabin deck with this view: a clear, amber-brown lake rich with tannin, wind in the poplars, a jewel sky and our canoe. It took us through everglades past friendly turtles and lilies and beaver dams to the gnarly old maple that now stands watch over the resting place of our son.
Community, reading, resources, and love
Community, resources, and reflection for parents of lost babies and potential of all kinds. One of us, only half-joking, said this will be a place where us medusas can take off our hats, none of us minding the snakes. Babylost mothers and fathers, this place is yours.
I founded Glow in 2008, a year after Liam's death. It was and still is a safe space and a warm room. Here's a distinct set of writing that dives into the after-life of loss, beyond what's here: shared bumps, reckonings, and turns of the kaleidoscope.
An award-winning writer, Kate Inglis's TEDx talk reminds us that we are not alone. She emphasizes the power of support for those feeling isolated in times of depression and despair. —Tedx Talks
From poetry anthologies to gripping memoirs, advice, and reflections on healing, Glow's library is a comprehensive, ever-growing selection touching on parenthood, medical aspects, and rationalizing loss for young siblings.
We touch on universal comforts and helpful practicalities. Friends experiencing loss will need your ear, love, and patience, but it's a trial ahead. We hope our perspective will help you better navigate their needs.