Mother Nature's Son:
the story of Liam & my afterlife
This is my bereavement, as it unfolded. Liam, my sweet and missing son. And stars & talking trees, too.
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.
It was 3 AM. The moment I’d opened my eyes I recognized the sensation, that familiar heaviness. Bagfuls of marbles, as I know they get for me. But there’s liquid gold in them there marbles. Now despite everything I can be useful. I can contribute to healing instead of just going down there and falling apart.
My life has never gone wrong. 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. I’ve never had reason to speculate at why 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, determining boundaries, striving for comfort.
Looking down at him I feel it, ferociously. I should be grateful for any spark of life, life in any form. But love sinks into me, fuses to every fibre. 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 had to walk us through the risks, make us sign a waiver. She said there was a five to ten percent chance of a threat to his life. 'His blood vessels are the consistency of wet kleenex,' she said. 'We have to be careful.' Never has five to ten percent seemed so significant.
In the realm of preemies, this was routine. But it was the first intervention aside from the IVs and the medication and the stat-watching. The first time he was wheeled down the hall and away from us to a place where they'd breach his skin. It got the better of me, the thought of it. And still so long to go.
I think back to that night and want to scream at myself. I fantasize of time-travel episodes like those dreams of being chased, stuck in slow-motion. I’m screaming but she can’t hear me. Having more babies would be punishment by sheer intensity. Forcing my body into proving something to the world with a lifetime of offspring-amplified chaos.
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.
His TPN is at 6.4, lipids are on hold at 1.18. He's getting 1 cc of breastmilk every 6 hours, but given the triple-antibiotics we'll give the feedings a break for the next day or two. He sounds wet and crackly in his chest without suction, so we're on top of that. 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. Nothing these days is more magical to me than what appears ordinary to everyone else.
I burst out crying when it’s most inconvenient for whomever I’m with. I’m calm when it makes no sense to be calm, and I’m a mess when it makes no sense to be a mess. But please, please world: give me the space for that to be okay. I’m not like this all the time. 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, sleeves rolled up, 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 of healing: he is off the ventilator. He’s just Liam now, all-baby. He may have hiccups, backsteps. But it is such sweetness to see his face unobscured by complication. He is hoarse but he gurgled at me, and 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. In front of us was a man passionate about neonatology, and who is not accustomed to being proven wrong.
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 conflicted right now, 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. No flavour of support offends, and there is no right or wrong thing to say. 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 in the NICU, a blur of meetings and rounds and charts and highway driving and fluorescent lights and insatiable boob-sucking robots that tractor-beam me from one end of the hallway to the other, wheeshing FEED-ME-SEYMOUR! in-and-out.
I wish I could stop time-travelling. The last time I saw this person, I wasn’t even pregnant yet. Or in this picture, I was a few days pregnant but didn’t know it. Or the last time I was here, I was pregnant, and the boys were whole and safe. None of this had happened yet, and I was still just myself. It makes my stomach turn with longing, this unrelenting wistfulness.
I'd love to tell you about how Evan makes fart noises underwater now, in the bath, with a squeezy toy. And then looks up, beaming, to declare: "Dat's RUDE!" I wish that's all I had to say. But those reports are trumped by what else is going on. At this moment, 12:33 AM, a neurosurgeon is putting in a shunt to relieve pressure on Liam’s brain from excess fluid caused by 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 had a chance to look at his brain, and realized the damage was much worse than even 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. Shoulders unclench to music in the car, laughing at a joke, and I am instantly ashamed. 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 with such eerie intent, again and again. Knowing he was never meant to stay but hanging on as long as he could, 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. A puppy among babies, unabashedly peeved or curious or hungry or zonked.
The single, long alarm rings across the paging system. NEONATAL TEAM TO ROOM 311, STAT. NEONATAL TEAM TO ROOM 311, STAT. NEONATAL TEAM TO ROOM 311, STAT. Said once I could pretend not to hear, drift back into uneasy sleep. But echoing three times in the space of my own private darkness, I’m left boggle-eyed. They said that for us, once.
On the cabin deck in an adirondack chair with this view: a clear, amber-brown lake rich with tannin, wind in the poplars, a jewel sky and our canoe, its maker so legendary that some say it should be in a museum. 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, 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.
The woodstove is always on. Comfort, solidarity, and a safe space for bereaved parents. Any time of day or night, talk to each other in the discussion forums at Glow.