It was only in that moment, ten years later, that I figured out why I did it. Why I circled the NICU like an animal, fending off every other lens. It was for Ben, for his ballast. So that someday, he might attach Liam’s humanity back to him, like Peter Pan’s shadow, despite all the rest.Read More
I am pan-searing salmon with lime and cilantro when he comes to the door on Friday night. My husband ushers him in to see the play kitchen while my surviving son folds paper airplanes. I show the gentleman how everything works—the magnetic closures which are difficult, at first, for little hands, the washer/dryer door that requires a little finesse to close, the sliding pantry door, the timer that ticks and dings, the gallon bags of play food, pans, plates, cutlery, kettle and teacups I've packed up neatly—and as I head back to the salmon, he hands me a wad of cash. Before I know it, he and my husband are on either side of the wooden kitchen, carrying it out of my house forever.Read More
The timeline of his entire life, all of the highs and lows, happened in the course of two weeks. The close proximity of the good and the bad times melds them together in a way that destroys my ability to compartmentalize them.Read More
They shed tears for the woman describing the miscarriages which devastated her. They stand, applauding as she breaks the taboo of silence around her situation. "She is so brave," they say, talking about this. "No one used to speak of this. Nature can be so cruel".
And it is right that she speaks and right that she is heard.
They shed tears for the woman who laboured to bring a silent baby into the world. They sympathise, imagining the pain without hope and the sound of silence at the final push. "So awful," they say. "I can't imagine. Lessons should be learned."
It used to be that a stillborn baby was not named, not spoken of, wrapped and taken without even time in mothering arms.
And it is right that we have changed this and the sound of silence is more readily acknowledged.
Hearts break for the child who left suddenly, inexplicably, horribly."I don't know how they carry on," they say. "I'm holding my child tighter tonight. I'd die if that happened to mine. How can life be so cruel?"
It is right we give our dead children a place now. It is right to see the space and honour it.
Then there are the heroes, the little fighters, the ones born too early or too sick, who battled on against the odds and through tenacity of spirit or luck, fought the fight and triumphed, made it home.
Their pictures, wire covered but surviving, festoon the walls of Facebook. "Such an inspiration," people say to still stunned parents. "I don't know how you did it."
It is right to have their photo on the graduation wall. Right that parents who survived the trauma can work out the pain and repackage it into a success story.
Medicine can be amazing when nature lets us down.
But what of me?
I did not miscarry.
He was not premature or known to be sick before his birth.
He was not stillborn.
There is no once occupied empty space inside our home.
There is NO WORD to describe us. There are no films for undiscovered damage and a baby carried to the morgue, not by midwife but by quiet faced SCBU nurse. There is no soft edged happy ending for my arms that screamed for him. He was born - and he lived (just) - and he was grabbed from me and all his days were outside of my control, more cared for by a nurse than by me, more chosen for by a doctor than by us. He died by my command and circumstance tore me from his soft and lifeless body far too soon.
Later, I had to register the birth of a boy already dead. We did the two certificates in one. How convenient.
Do you think the words "neonatal loss" do him justice? He was a person who died. He died in my arms, after 11 days of loving him, 11 days of SCBU terror, of decisions and fear and roller coaster highs and lows. But when they speak of heroes, they only speak of the ones who made it. When they speak of fighters, they don't remember the ones who fought and lost.
The lack of understanding falls in a gap between "at least you never knew him" and "thank goodness you had a little time together".
And I'm supposed to be grateful for both of those.
The truth is no one wants to know that a baby born safely in hospital might die anyway. No one wants to hear about dashing to SCBU and the medic-magic not working. No one wants to hear about the ones without a picture on the going home board.
I think the taboo of us - of mystifying early death inside the hospital but outside the womb - may never be broken.
And so the platitudes come and I, to be politic, suck it up and stay silent; I am the black widow at every birth story, the hovering witch shadowing every pregnancy. I am the spook and the death wish and the unspoken horror of the space between nature and medicine.
I am when everything fails. And no one wants to hear.
Do you feel you fit one of the loss pigeonholes? Or do you feel you fall between the gaps? Or is every situation so unique that in fact we are all in the gaps? Do we only see the pigeonholes that other people seem to sit in?
There are things which broke on that day which will never be repaired.
My ability to give a toss, for one thing. I walked out of the hospital wearing pyjamas, clutching a yoghurt. Less than an hour after watching my 11 day old son die, I left the building having forgotten to dress but feeling it was important to not waste the money spent on a breakfast yoghurt that my throat had been too constricted to eat.
A million times I have reconstructed that morning, imagined that I screamed and howled and refused to be parted from him, imagined myself cradling him - illegally outside a car seat - on the journey home. Imagined his breathless body in our home, loved by us all, for a few hours. Just a few. Long enough for all of us to hold him.
A piece of me broke when I laid the body of my child upon the bed, turned my back, walked away, left him forever. I went quietly. I walked with measured steps, climbed inside my car, composed myself for breaking the news at home.
I stared at the car in front of us, proclaiming in a jolly yellow sign "baby on board" from the back window.
I didn't cry, or snarl, or instruct my husband to ram their smug, unknowing selves off the road with their sneering, crowing, baby sign.
I don't miss the drama queen, nor the woman who put her own needs and wants first and had a baby to suit herself. She broke. She is long gone.
The mother who arrived labouring and optimistic was not the one who walked out empty armed and brokenhearted. I wonder at what became of her on those haunted corridor days, the long nights hovering above a SCBU crib. I wonder at the mother who left, grief already put to one side, able to turn her back to a beloved but dead son and focus on the living.
I would not have believed that I had that in me. I would not have believed that my soft soul, so often such a shaken and shifting thing, would have hardened, frozen, stiffened and done the deed.
I am not sure if I want to be the mother who walked away. It does not feel honourable nor does the walking illustrate the love, or the desire to stay forever, suck him inside of me, curl up upon that bed with him inside my arms and keep him warm with my warmth until we both grew cold.
But the one who arrived home. Broken, yes, but strong. So very, very much stronger than anyone believed. Least of all me.
There are things that broke inside of me that day; faith, trust, patience and tolerance. Energy for the small worries, some measure of mercy for human foibles are long gone. I do not wish to be troubled by the minutiae of petty irritations. I do not suffer them gladly.
What was left, when all that cracked and fell away, was new, pressured hardened, solid, changed.
My son died, in my arms, under my gaze.
But I survived. I changed, changed deeply to my core, but I have survived. Sometimes, I rather resent that it is possible to do so.
Can you identify parts of your personality that have changed since the loss of your child? Are there changes you welcome in some way or do you resent them utterly? People talk about 'becoming a better person' as an aspiration after experiencing loss; is it possible for that to happen? Is it damaging to even try? In what ways has grief been a journey for your 'self', your character and how do you feel about it if it has?
There is a boy on my lap, ten months old, and he's been gasping for breath all evening and the antibiotics that should be helping are making a red rash creep up his cheeks. It's getting harder to breathe now and I'm looking at him and I know what the doctor - kind, understanding - is going to say next.
"I think we need to admit him."
I'm all on my own with a million screaming voices in my head and I don't know how to help him - or me - and a tear splashes down on his face.
I'm always raining tears on my boys.
And then she says:
"He will be okay."
Beat. Follows Beat. Follows Beat.
I look up and I can feel the look that I give her.
"I've been told that before."
Don't tell me this will be okay. You know nothing. You people can't save my boys. I don't believe you.
There is a boy on his lap, ten days old, and he's arching and gasping and the room has stilled to a horror struck silence. He's been stable - doing better - but suddenly the world has dissolved and a hiccuping gulp for air has become a desperate grapple for life and he's suddenly all ours, our responsibility and I can see that he's dying and it's going to be unbearable, painful, the cruelest and worst possible ending.
The antibiotics that should be saving him are doing nothing and no one knows why.
I know what she's going to say next. Kind, understanding.
"I think it's time to make a decision. If you wait, there won't be a decision to make."
Beep. Follows Beep. Follows Beep.
Damn monitors. Damn wires. Damn tubes that came between us and didn't save him. I don't know what to do to help him. Or me.
And then I do.
I look up and I can feel the look that I give her.
"Do it. One last chance. Only one. Give him till tomorrow to try to live."
Don't tell me this will be okay. I've been telling you for ten days that this won't be okay. And you can't save him. You don't know why, but you can't save him.
And I'm all alone, all night, with a boy who said no to his one last chance and who chose to give up on breathing and chose to reject the help that all the medics who wanted to save him offered and who left me, with a million voices screaming in my head, with the knowledge that I let him go because that was all the mothering I could give him. That was all the kindness I could offer. That was for the best, for him, for all of us.
We don't talk about the SCBU days. We don't talk about how the rhythmic beep of a monitor still sends us into silent meltdown. We don't talk about how each illness, erroneous blood test, each new health problem for our girls and rainbow boy forces us to silently confront the reality that our child died and when we needed them, the doctors couldn't save him. Didn't know. Can do so many brilliant things but couldn't save a little boy who lacked the fight to live. We don't talk about how one doctor said he would do well, that 24 hours later we crashed as another spelt out what 'do well' might mean for a boy who didn't want to suck. We don't talk about the peak as he opened his eyes and began to respond or the pit of despair that hauled us down as something inexplicable tore him away from us again. When our subsequent child is - repeatedly - admitted to hospital with breathing problems (and lives, I grant you) I go alone to care for him. Alone beats the companionship in terror of the SCBU parent bedside journey.
Just waiting for the balloon to go up. Just waiting for the hammer to fall.
Three years on, we do not let ourselves look at Freddie's 11 days and acknowledge how easily it could all happen again. And that means we do not look at his life at all.
They couldn't save him. They didn't know. And so how can we ever believe in "it will be okay" ever again?
How has the loss of your child changed your feelings to illness since? How has it altered your parenting to subsequent or other children? Are you stronger or weaker in crisis since? Do you see death lurking around every corner or do you thumb your nose at it? And if you experienced a SCBU (NICU) journey, what is it's legacy in your life since?