When it was all over, when he was gone, he said to me: Look, mama. Can you see? I’m better now. This sick little boy lying on your lap, this poor boy, he’s not me. Not anymore. Look, and see.

That’s when I knew he was finally safe, whole and calm. Resting.

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.

That’s the doctor’s story. Here’s mine.

He died in my belly six weeks ago. They brought him back when he was born, aggressively, ten minutes of frantic work to get him to register an apgar score of one. That’s when my old-soul son said to himself:

Well, this is strange. I was there, and now here. Why? I’ll stay then, for a little while. For my mama, my dada, my brother, my twin. To show them how strong I would have been, how inventive, how patient. To give them smiles, to help them to know me. Once I do all that, then I can go. Not in an operating room, cold and surrounded by strangers. On my mama’s heart, surrounded by peace and light and love.

And so it was.

Shhh, lili. You don’t need to try so hard anymore. Please rest, sweets. Go to sleep, go back to that place you already know, and wait for us. Be high in the sky, be the stars and the trees and the loons waking us in the morning, and watch over your brothers, and wait. When I am old and grey, fates willing, I’ll find you and come to you. I promise. Even if I’m a hundred-and-one I’ll use my mama magic to turn back into this Me, right now, and we’ll pick up where we left off and I’ll feed you and hold you and we’ll cuddle forever. I promise. So please lili, please go. Please, for mama and for dada.

We held him, all of us naked, for twelve hours through the night. As it was meant for him, if not in my belly, the way his soul wanted to go.

Now we need to take his last gift, I think: permission to feel relief. Liam gave us peace by finding his own.

This morning on the way home we looked in on Ben, suddenly robust in comparison. As he passed through Liam stopped at Ben’s bedside, curled up beside him and whispered to him of patience and promise and inherited hopes and dreams. Then he was gone, and Ben lies with rosy cheeks, belly full, nasal prongs wrestled free, chest rising and falling in deep contentment, blanket kicked off and toes twitching languorously, ready for life to begin.

Then we left the hospital to recharge, to find our way back to being parents of two, to give our sons everything we have left.

Later today I stood at the ocean wearing two-day-old clothes, clothes I’d put on when my son was still alive. And I felt Liam in the sky, brushing my cheeks with breeze and crashing spray. A sapphire sky peeking out through portholes in the fog. I put my right hand over my belly where his naked, warm rump lay throughout that endless night, and my left hand over my heart, where he let go.

And I stood with him, remembering, just being his mama.

Peace, light, love for Liam, our son.

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.

Intubated again, back on the ventilator for a few days while he comes to. I'm told it went well. Now I go to sit with him, give him fingertips to grip, hope he can sense that I'm there.

Then off to Ben for skin-to-skin therapy. This morning, I need it more than he does.

Reading blogs like this are like slowing down for a car crash..

True. It's nice to just read about someone normal…

I know what you mean. I was like you, once.

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.

Taken away again to the operating room by a faceless crew of masked blue people. I appreciate and resent them, all at once. Or perhaps better put: resenting what they stand for, the fact that we have to be here at all.

As a healthy wound bleeds cleanly, free flowing, the zombie state of new mamahood is the way it's supposed to be. Awestruck but sleep-deprived, unkempt, squinting at the rest of the world for its sparkling unencumbrance. Shuffling along uneventfully towards contentedness. All along wondering, will I ever be just a woman again? Will I ever not smell of sour milk?

Above and beyond the mandatory shuffling, there’s a heavy sort of solemnness pressing down, smothering the me I'd otherwise expect to return to. After all this, I don’t even know if she'll exist anymore. Not as she was.

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.

Every morning I wake steeped in forgetful sleep, a gift for the first ten seconds before opening my eyes. Then the weight of the boys and their uncertain future presses down on me and I think dammit, it’s done, and it’s true.

Every new mom doubts that she'll ever resurface from the hibernation. That she'll ever regain the time or self-acceptance to relish in herself. Deliciously impractical clothes (or anything not smeared with offspring snot). Girly shoes, wine, yoga. Unhurried conversations. Spring-in-your-step stuff. Any food other than that which is formed into bite-sized crocodiles.

The prospect of waiting to see where Liam lands on 'The Spectrum' — and to see that Ben is clear of it, simply by virtue of being a preemie — already exhausts us both. The pursuit of past-life sparkle is hopelessly distant, shallow in comparison to what's at stake.

But that doesn't stop me wanting it. To enjoy life again without the fresh sting of feeling betrayed by it.

++++++++++++

Today I walked into Liam and Ben's new home, the transitional care nursery, to find the nurse on break.

They’ve graduated not because their release is imminent, but because they’ve been upgraded from 'The #1 and #2 Sickest and Smallest Babies East of Toronto' to 'Very Small But Somewhat Less Complicated Babies Who Are No Longer Dire Enough To Require a $65,000 Bed In Critical Care'.

Progress.

Dropped my bag in the cubby, peered and whispered at both of them in greeting. Liam welcomed me with a fruitful grunt. Looked over both shoulders, wondering: is it okay if I just go ahead and change his diaper?

I feel like I'm shoplifting. Opening the greenhouse wall and taking liberties without asking permission, without a guide.

I want to get it right, this balance between mama and nurses. It's my baby, but it's their turf. I respect their work immensely, their sheparding of our mechanical wombs. I hear them when they think they're unobserved, hands through the portholes, working deftly while cooing at someone else’s tiny daughter or son. Oh! You little scrapper you. There you go, shoosh, shoosh. Goodness gracious, that’s some set of lungs. You’ll be full of beans, won’t you? Here now mister man, let’s get you all nested.

Meanwhile, I'm a bull in a china shop. I can never find the wipes and get tangled up in the wires and can only flip them back-to-front, not front-to-back. But I'm getting there. Today, all three of us strapped together skin-to-skin like kangaroos, Liam’s deep sleep stalled into several apneas, momentary lapses in which he forgets to breathe.

The alarms go off and I look up, assessing his heart rate on the monitors. I wait a moment, see if he'll come back on his own. Tap my fingers on his cheek, rub his back. By the time the nurse pokes her head around the curtain, all is well.

Satisfaction.

++++++++++++

Justin: Would you like some toast with your butter?
Kate: Hardy har.
Justin: I hope you don't put that much butter on anything Evan eats. His face will start beading in the rain like a freshly weather-treated windshield.
Kate: <hairy eyeball>
Justin: It looks like the Exxon Valdez collided with your toast.
Kate: <sigh>

It's moments like these that make me feel like things may get back to normal around here someday. You'd never heckle someone in the midst of lasting melancholy.

Especially before breakfast.

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.

We sweat bullets in front of a dozen –ologists, grasping for a prognosis on Liam where none exists. Talking odds and desperately picking apart words like 'delayed' and 'affected'. The short of it: from now on, we watch and wait. Years of it.

The critical aftermath was easier than this, this nothingness of time during which worst-case scenarios spin in front of us, all possible.

We’re so drained. Our skin still smokes and hisses, fresh from the brand of tragedy, to the point where I wonder if we’ll ever be ourselves again. The only respite is holding them, eyes closed and head completely empty, just clammy and breathing. When we all come to, shifting and murmuring, I put them back and straighten myself. Go to pump and POUF! the baby-spell breaks and the bloody perfect storm of possibilities slams down on my shoulders once more and I am filled again with despair and rage.

Ahh, screw it.

They’re both rearing up on four pounds now, almost twice their birth size. The nurses are already speculating about transitional care and open cots. They have explosive poops and they squirm and grunt and hum and sing. They think I’m terribly clumsy, but they like how I smell. They know each other, heart rates and oxygen sats matching, face-to-face.

They are wide-eyed and shut-tight, cranky and peace.

So am I, for that matter.

I’m sick of it all, this dreary, institutional beige. The world is the colour of overcooked porridge. I hope that goes away, lets us laugh again someday. Right now we’re too solemn for everything — even the panty raid scene in 'Revenge of the Nerds' on late-night cable. That's how you know it for sure: you are a humourless zombie.

Crap

Here comes the Lact-Eze 3000

Noooo, not already

It’s got me

I am be  *&@$%)(&*%^*#%$

<END>

I’m sorry. You are not an oblivious asshole. This I know.

That’s just how it seems when I’ve thrown myself down the bottom of the well. Everyone else has it easy, our lives are over, I’ll never again be myself, a part of me has died... yes, that’s true. The part of me that was an oblivious asshole has died. Oblivious, contented, unaware that catastrophic events like this really do happen at 3 AM on a Saturday morning.

People say I’m so sorry for you. And I feel like snapping, take your sorry and stick it. Those are my sons in there, and they’re doing the best they can, and we’ll get through this, and we don’t need your sorry.

Then people say Hang in there! They’re doing the best they can, they’ll get through this. And I feel like snapping, take your optimism and stick it. You don’t know how bad it is. It’s not one grade IV bleed. It’s two, one on each side. There probably aren’t even statistics for that. You didn’t see all the white haze on his ultrasound. It’s like a bomb went off in there, shrapnel everywhere. It’s not going to go away, no matter how much we wish it. It is done.

It was the latter me who found the neonatologist’s blog (and the unfortunate comment, the second of a few of its kind on that thread). I turned off the computer after that but it stayed with me, the last word like a stink that gets stuck in your nose.

Hysteria and sense are oil and water. I’m sorry for snapping, for not leaving anyone anything to say. I wouldn’t know what to say, if I were you. But I will tell you that everything you say is perfect and pure, and we listen to it all, knowing even as we snap that we’re completely witless. You are all warmth.

Look at these boys. All the answers are right there, ordained, filling me with rage and surrender and ridiculous hope.

Met with him again, the doctor, to understand what he means by 'brain damage everywhere'. Before, he'd said it was damage that would cause gross motor skill disability, like cerebral palsy. But now he says everywhere - does that mean that the scope of the potential disability has increased?

The answer is yes. Liam could be retarded, or blind, and prone to seizures, plus the cerebral palsy, which could be viciously severe.

I finally take it up online, googling 'grade IV brain bleed'. And I find this:

Grade IV IVH children should NOT be kept alive, end of story. There should be no debate. It's wrong. It's wrong for the infant who is asked to suffer through this life, going through repeated surgeries and hospitalizations in attempts to try and fix all the consequences of neuro damage. It is wrong to force parents (particularly mothers) into a lifetime of caregiving, foregoing future children, foregoing stable marriages, foregoing careers... THIS is what should be presented to your parents of grade IV IVH preemies.

Life after is not pretty.

I wake up in a nightmare, unable to stop crying. We've just been handed a life sentence. I feel selfish for mourning Liam's potential effect on our family, but that's the reality of what we're facing. The odds are just too remote.

I'm furious. I want to throw things, punch someone. Punch every oblivious asshole blessed with healthy, normal children, flaunting them at us.

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 I could just go home.

The potential of mental incapacity... I had thought it safe to rule that out. I asked them, specifically, two weeks ago: just gross motor, right? Not mental? And they told me that's right. But now they say actually, retardation is a certain possibility, taking from me not only the body but also the soul of my son.

Whatever you do, don't tell me it's okay. Because it's not.

He settles into the rocking chair opposite us, Liam and I in the thick of a skin-to-skin cuddle. He straightens his hospital whites and clears his throat in a distinctly bad-newsy sort of way.

"So… on the latest ultrasound we could see damage everywhere, in every part of his brain."

I never know what to say when they tell us things like this. Especially when he is curled up under my chin, his chest rising and falling, mouth open contentedly, catching flies. All making me swell with denial. The doctor continues.

"Based on these results alone, I’d say he should need a tracheostomy to keep from choking on his own secretions. I'd say this would be a baby without much of a future — at least not the kind of future you'd call healthy or happy. A baby with a brain that looks like that shouldn't be able to clear his own throat, and that's not good."

"But he does. We don't understand how, but he does. It's amazing. It's like he's rewiring — we can see that the parts of the brain that have been injured are being walled off, and presumably he's growing around it. He's making new connections — and not just in the brain stem which controls vital signs, but in the cortex, which controls complex movements and thinking. You can tell by the way he squirms."

<Liam gurgles, coos.>

"See? Look at that. He should not be able to do that, to make those sounds, to talk to you like that. In my career I've been wrong a few times about some babies, babies I've said won’t make it. Not often. He's one of the few. I don't want to give you false hope, but let's not base our assumptions on what we see on the screen. Because in this case, what we see on screen doesn't match what we see him doing. Clearly, he wants to be here, and he's going to chart his own course."

<Liam sneezes several times.>

"Wow. You know how complicated it is for the human body to orchestrate a sneeze? Diaphragm, nasal passages, lungs, mouth. That's cortex. This is why we should draw our conclusions from him rather than from the ultrasounds alone."

<Liam yawns.>

<Doctor gestures at us, pleasantly exasperated.>

"From what we see on his brain, he shouldn't be able to do that either. I don't know what else to tell you, other than we'll all just keep supporting and watching him. That's a very industrious little boy you've got there."

We wrap up our chat and the doctor walks away, still shaking his head in wonder.

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.

Apparently it's not only god who’s a tinkerer. It's my son, too.

+++++++++++++

"You okay here?" says the nurse, peering in around the edge of the curtain. The doctor has just left. "I'm off on break. When you're done cuddling, feel free to put him back in bed, and he'll need a change too. Okay?"

She whishes off cheerfully amid a flurry of beeps. Then it dawns on me: she meant that I'd be doing all that m-m-myself.

It cannot be delayed. I am the Dunkin Donuts baker: time to pump the milk. I tilt myself forward, grimacing, still a bit precious in what's left of my abdomen. Get him settled in the crook of one arm, draping sensor wires in a neat cascade off the end of his feet. Open greenhouse, one side at a time. Sneak him underneath the edge of the roof with one eye on the monitors: oxygen sat fine, heart rate steady, respirations normal. Lay him back in his nest, gingerly retracting my hand from under his clammy, floppy silkiness.

I scrub in again, douse with alcohol. Working through portholes I nudge wires out of the way, collect both feet between index finger and thumb, fold the dirty diaper under itself, wipe, slip the new one in place (ten minutes less to write than to do). Finally, tucked in, my Liam stretches and sighs.

Satisfaction finds both of us in this black hole of bewildered doctors and unfavourable odds and day-by-day mystery. Mamalove through it all, mamalove.

For Ben, the prospect of extracting nourishment from my bosom is akin to a hummingbird getting its beak around a pair of ten-pound cheeseburgers.

So what we practice is called Snorfles. More osmosis and familiarity than ingestion — the reinforcement and practice of Boob-As-Happy-Place. Not whatsoever expecting him to latch, or master the art of suck-swallow-breathe. Not quite yet.

I should have had him sign a waiver.

I, the Undersigned, do hereby acknowledge that the activity of Snorfling may or may not result in me being blown to the back of the room by a Fire Hose of Tasty Mama Love. I understand that my mama cannot be held responsible for any mishaps caused by aforementioned fire hose.

_________________
BENJAMIN PETER INGLIS.

Bless him, he was up for it — a teensy latch, but a latch nonetheless. It didn't last long, but it was a start. Snorfles to gurgles, we’ll find our way around each other. Then it will be Liam’s turn. We’ll be a trio, an ecosystem. And somehow that will make them mine.

It means so much to feed my child the way I’m supposed to, without machines. Deep in my animal-self I’m buzzing with ancient recognition, ripe with mama-chemicals and physiological fulfillment.

I don’t need a new drug. I’ve got milk.

+++++++++++

This morning I walked into the NICU to see Liam’s nurse smiling broadly, waving me over. Come and see! She exclaimed. Come and see what’s different.

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.

I am a red thumbtack on the NICU map of parental distress.

It was a social tea: a fruit plate, muffins and a tableful of "Are You Stressed?" pamphlets. After some icebreaking chit-chat with the other parents I picked up the one in front of me, scanned a 'Checklist of Cognitive Disorders' that read something like this:

• Do you see unfavourable events as a pattern of defeat?
• Instead of recognizing that we all sometimes make mistakes, do you believe you are a failure?
• Do you feel the world has done you wrong?

Check. Check. Check. If I answer yes to all these, do I get a prize? They all chuckle. A sidelong glance from the counselor sitting next to me. Perhaps have a look at this, she says, seeing through my lame attempt at humour. This is our Booklet of Normal Feelings.

Inside my head I snort, ever the cynic. You can’t help me.

Then, the first thing I see:

• Grief at the Loss of a Normal Pregnancy

Suddenly I can't breathe. My eyes well up. Not here. Please no. I can share, but only when cloistered. Spoken words clog my throat. Written words put chaos into manageable packages — but don't require me to look into your eyes and see discomfort there.

I mumble a painfully awkward run-down of the prognosis of last week. With every word I am naked on stage in front of a thousand, then five thousand, then ten thousand people. What was supposed to be an offhand "Phew! Sorry, it's just been a rough week, never mind me…" has now become uncontrolled sobbing in front of a captive audience.

The other parents suddenly fixate on their shoes, regretting the joviality of just a moment before as they compared notes on their textbook preemies, relative hippopotami next to Liam and Ben.

Not to claim a monopoly on NICU stress. They don't need to regret. We're all in this together, and everything is relative. We'd all rather be home.

+++++++++++

Last week I dreamed you were sitting in the NICU at the edge of their bassinets, and there were these endless printer readouts of heartbeats or other bio-info cascading to you as you sat on the floor, and you and your older son were using large amounts of bright washable paint to paint pictures on the readout paper. Next I saw your older son again, lying down in a photo with Liam and Ben on either side of him, they were all smiling. Three happy boy-heads. The colors in the photos were phantasmically vivid, like in all your other photos.

Her name is Sara, yet another unknown voice that speaks to me of dreams I have to co-opt. I don't have dreams like this. I wish I did, but I'm blank.

I could accept if Liam doesn't make it. 'Accept' as in rationalize. I would be forever gutted, but I could distill meaning and reason from it. Conversely, the only other outcome I can accept is that Liam will defy everyone, completely unscathed.

What if he lands somewhere in the vast gulf in between, disabled? This is most likely, by a longshot. He'd have an identical twin without physical challenges. Cruel, so cruel that is. A mirror of yourself, only holding more cards.

Unfamiliar territory, when a child's life veers off the parallel of your own. Such a bloody complicated muck. Anyone could be hit by a bus tomorrow, they say. Having a healthy baby doesn't give you any guarantees. I know this. We've all seen it happen. But I'd much rather have him start his life with ability, not a lack of it.

It's shameful to put this out there, this darkness. But I have to put it in a package, label it, find a spot on the shelf for it. So that someday another newer, neater package can be placed in front of it, demoting it to the background, dusty and irrelevant. Some form of acceptance.

…Liam? He's beaten the odds, day in and day out, consistently surprising all the various experts who've poked and prodded him. Let him surprise you.

Anna said this after the last post. Another bell rings, cutting through the static.

Blindfolded, we are standing either at the edge of a cliff or the curb of a sidewalk, waiting for time to nudge us into the void.