hard hearted

I am grown hard hearted you might say.

Grief - which might have softened me and uncovered my humanity - turned my core to stone, you might say.

If you did not know.

Sometimes I do not know.

I think of him, wait for grief to rise up and bubble to the surface, tears to come, grief to reassemble, manifest in the centre of my soul - but nothing comes. I wait to be strangled by the loss of him, for my arms to lift themselves up, shocked and empty from the lack of the weight of him. Nothing comes.

I try to write, show the world that still I miss him, that my whole self is changed and nothing will ever be the same without him but the words seem bland and empty now.

I miss that pain. I hanker for it. I ache, in a way I never thought I would for a bottle of grief to take out and tip up on my sleeve to sniff the scent of loss and feel it fill my nostrils, freeze my brain. I want to huddle, struck to stone by the loss of him, the utter total disappearance of my boy. I want to stare at photos and feel tears stream down my face, flicking away from them as child or husband strays to my side. I want to remember when there was no way to make it through a day without saying his name. I want to be back in the supermarket, telling a horror struck assistant over frozen peas that my baby died and so I can't cook a proper meal just now. I want to be folding baby clothes and finding places to hide them, cramming crates into a cupboard and forcing coats and blankets over them, tears of rage and hollow pain pouring down my face. I want to be in sunlight, the world dark around me, furious the world is spinning, wind is blowing, sea crashes and days continue. I want to hear his loss in every song on the radio, pick up every book to read and find a Freddie in the pages. I want to flinch away from baby aisle and pushchair, avert my eyes from bump and newborn, shut the computer in despair as another pregnancy is announced, another baby born.

But time has moved on. The days that sparkled with over bright reality, harsh and glaring and scraping the surface of my skin till I was raw and broken are gone. I felt everything then - and I hated it. Longed for it to end.

My life has grown to hold this pain, pushed it small, forced the grief and disbelief to a tiny molten core inside me, encased and covered by a crust I cooled and grew to cover it.

I can ignore the core. I exist around it, function, smile, talk of my children and skip a beat as I describe them, choose to keep him private. I have learned to slide my tectonic plates over the places where the fault lines are, pushing the broken, ragged places beneath a smoother surface. What was once a brutal landscape has softened, moulded, eroded away, grassed over, become old and gentle.

And if you saw me, you might think me heart hearted.

You might think I do not care. You might think I learned to live without him. You might think I had recovered.

***

I watched one night a story of savannah; the dusty landscape, parched and bare and half dead itself with bare branched trees, empty river, devoid of food or greenery. The smallest elephant in the pack gave up, lay down, stayed down. His bewildered mother, on her knees, tugging at him, lifting at him, trying to pull him back to life and her desperate moan, her grief, her utter helpless disbelief to lose him broke through all the defences I had built.

It was her moan that broke me. It could hardly have been more human. I do not think there could have been an ounce more pain contained in it, not if she had had words to say to us.

I cried for her. Gasping, wrenching, sobbing tears.

That's how recovered I am.

In the early days I had a million triggers; it seemed as if the world was determined to bring me down at every turn. The triggers are more subtle now and often unexpected and in a strange way I welcome them at times. What triggers your grief? Do you have ways to manage them, have you learned to accommodate them in your life or have you had to change to avoid them? Do you, like me, ever welcome them?

gone

Four years. On Sunday it will be four years since I held Freddie in my arms while he breathed slower and slower until I could gently feel his wrist, that tiny, purple-cold hand already turning white and know that I could feel no pulse, that he was gone. That eleven days of fraught love, fierce hope, fluttering joy and brutal instinct had subsided into a quiet room, still bed, arms that held.

I've tried to remember how to summon the tearing pain I felt back then, honour him in some way with eleven days of memories, quiet time, thoughtful words. Tried to find some way to make meaningful the loss of him, the hole of him, the whole sorry mess of death and destruction and all the ribbons of grief that have tied themselves around the feet and limbs of our family.

I could find gratitude. Friends have surrounded me in community this year, making daffodils for him, posting pictures of them from all around the world as they dance and shine and call a little baby boy to memory. Gratitude I can do. I can be grateful for finding gratitude.

I could find rage. Rage that when one of my children changes school next month I will have to find the words to explain that yes, it was four years ago, but she is still affected by her brother's death and that everything they learn about her must be tempered with the understanding that she has this loss in her soul. Rage that when people can't find their way into the mind of my youngest daughter, they have to remember that she locked up sadness and hid it inside herself and learned to be impassive when she was just five years old. Rage to see my false jollity hurting my biggest girls, old enough to know I'm faking, not worldly wise enough to understand why. And wondering if it means I'm okay in there, behind the jolly. I don't want that for them. Rage that all I can do on his birthday is try to smile for as long as the girls are looking at me, that we go the day without saying his name, that we laugh and make the best of it - so British are we - and then I look back at the photos in the evening and there is sorrow written across the face of the man I love. And he probably didn't even know it was there. Would probably say it wasn't there. But I know his face and I know it was.

I could find regret. Regret and resentment for a boy who had dark eyebrows and who never got to hold my face and utter the words his brother does - 'More! No! Here! Go! Again!' - that Freddie looked for me in need just once, when he crashed and they jerked him back and I saw him eyes wide and alarmed at the fuss and I was behind the mess of nurses and thoughtless registrar and couldn't ease him. Wasn't the person for the moment. I can find regret that four years have passed and family life is busy and sometimes the candles for each of his eleven days are not lit till late at night, resentment that his brother broke my thoughts of him by getting ill during those days and I had to wrestle my focus, look at now - not then - and I was angry at that. Angry at them both. At both my boys. Together.

I should be angry at them both for colluding to eat all the biscuits or for drawing on the wall, not because one is dead and stopping me from dealing with the others asthma and the other has asthma and is stopping me concentrating on the other being dead.

That's not how it should be.

But I couldn't quite find the babylost mother in all of that. She was missing.

Then the news arrived. A beautiful young woman lost. A daughter, a sister, a mother, a wife. Someone with it all before her, a family who had already suffered enough, a family broken to pieces from out of the blue.

And it all came back. I left the house one day and when I came back our world had shattered. A parent should not have to tell the world a child has died. Sisters should not sit, shell-shocked, asking again if this is true - how can it be true? How can life become death? No one who loved should have to pick up the pieces, carry on, make the best of it, fill the gaps, learn to smile again. Keep going because there is no choice and you cannot simply die along with them.

I can see them, in my mind's eye, just like I see every family who pitches into grief. The sofa still feels the same when sat on. Meals must still be cooked for hungry children. Deeds must be done, from the extra-ordinary horror of arranging a funeral, to the mundane of putting out the bin. Life stops and carries on and your head feels a million miles wide, light as air, deranged by the ordinariness of the bizarre.

One minute you are just a family and the next minute nothing will ever be the same again. Beyond pain, that other father said. And yes, I see the sense and madness in that. Losing a child is a place beyond pain and you learn to live there.

Four years. My boy should be four years old on Sunday. I've had long enough to know this happened to us, long enough to be back to happy days and a healed(ish) heart.

But he's gone - and I still do not really believe in it. Do not believe these four years have happened, that we've lived them and survived them.

Just... gone... just like that. Gone.

People talk about the stages of grief: denial, anger, bargaining, depression, acceptance. Is it a lineal experience for you or a cycle that repeats? How do you cope with your changing emotions? How do you cope with hearing about loss in the wider world since losing your child? Does it affect your emotions in anyway?

lost boy

"I carry you in my heart."

It's not a poem I enjoy hearing. I cannot find love or joy or hope or romance in it.

I find a dead baby, not in my arms, breathing slower, not breathing, carried away by gentle arms and leaving a torn and bloodied hole through my chest.

I don't know what it means, anyway, this platitude. I don't carry anything, not even love, in a pumping mass of artery and muscle.

My baby died and he took my romantic side with him. I can say that and twist my mouth bitterly.

"I carry you in my brain," perhaps?

Less romantic, far less palatable and hardly picturesque. I carry him in my seething mass of mysterious grey tissue, the very stuff that in him, sweet boy of the dark eyebrows and chubby limbs, was so apparently ineffectual.

Brains equal memories and memories are few and far between. Eleven days is not enough at best to make a pitcher full of memories and the pictures... oh the pictures... they stole all the others, superimposing themselves on the feel and smell and joy of you. My precious, blessed pictures, the handful I took, treasured, adored, that robbed me of everything else I might recall.

"I carry you in my stomach," might work?

Perhaps. I did carry him there, in my belly; there he was safe, mine, loved. There he moved, swished, grew, kicked, hiccuped and dwelt neither poked nor pinched nor jabbed or stabbed.

When the pain comes, it is my midriff I pull in; it swoops and clenches and cramps with grief that has nowhere else to go. I wrap my arms across it, fists clenched, tense, fuming. Grief lies leaden there, taking all the space that once was yours.

I do not carry him in my arms. This I know. I do not keep him in my sight, running ahead with sisters' laughing, I do not carry him on my back, save when I feel bent beneath the weight of another year without him. I do not carry him forward.

I carry him in my silence. I carry him in the construction of a sentence that leaves a space for the unspoken child. I carry him in my grammar. I carry him in my tolerance as other people expect babies and do not fear death. I carry him in my wordless hiding of the spectre I am, not speaking the caveats that scream in my head at others careless surety. I carry him in my being, this woman who watches herself from corners, bemused - still bemused - at the person she has become. I carry him in my flat expression as song lyrics twinge my mind and recall my loss. I carry him in a brittle smile and tearless eyes.

I carry him in the sudden silence, the choked lost words that catch me unawares when I tell someone, unexpectedly, that I lost a child. 4 years on and still I can find myself blindsided that there are people in my world who do not know. That I carry him - my son - so hidden, that he is not written on my face.

So this now, is grief, 4 years on. Living with it. Still mystified by it. Bitter, accepting, tolerating, adept.

There are days when I think Freddie dug depths in my soul and mined me so deep that I found a shining beautiful part of myself I might never have met without him. And there are other days when I think the loss of him made me so shallow, so brittle, that it is almost as if I do not feel at all.

What has grief done to you? Would you be without the pieces of you that have been unearthed by it? What feelings are you experiencing now, as you journey on without your child? Are you bitter, accepting, angry, blank? Do you have a sense of carrying your child in some part of you or in a place? Are there words, songs or music that hold you to your child or repel you?

the hardest thing

I have drawn landscapes with words in my journey through loss these past three years.

Baby lost, I lay gasping upon the scorching desert sand; clothes burnt from my back, undefended against the blasting rays of grief. I spread my hands and grains of a lost reality slid through my fingers. There was no shelter, no relief; time as it should have been marched ahead of me like a mirage; my lost boy, my lost life, my lost self.

The hardest thing I ever did was survive the desert. With my back to my boy, I stumbled on, the dreadful knowledge that I was stuck - forever - in the desert.

Damaged and raw I woke to find myself alive and sunken deep inside a sucking, cloying marsh of despair. To wake and find the nightmare still going, the jungle noises of life as grim and terrifying as anything I could dream, the weight upon my chest enough to press the life from me. I wished to sink, I begged to sink; to never hear the sounds that cawed from morning radio like a heartless mockingbird.

The hardest thing I ever did was gird my loins and shut my ears, throw back the blanket and live another day. Again. Again. Again.

The world tilted and we found ourselves on ice; reality biting at frostbitten, delicate extremities. To grieve a baby is to stand alone, perfectly still, balanced and poised awaiting the next tragedy. To barely breathe and await the cracking, yawning sound of deadly cold that will - must surely - claim all that is left of life and love.

The hardest thing I ever did was touch a fingertip to a small white coffin, say goodbye, be polite and brave and GOOD and bargain with the universe to leave the rest of us alone. Please. Just leave us be. Please.

A blizzard hit, my vision fogged and faded and all was obscured; cold, dizzying, grim and suffocating, wiping clean, covering tracks, bringing a clean, white slate with all the mashed and broken earth beneath it. Time passed. I do not remember it. I know each moment lasted lifetimes.

The hardest thing I ever did was live through New Year, leaving my boy behind, losing him forever.

Spring did not bring hope. Spring blossomed and hope faded and the landscape was not fecund and inviting. I found myself wizened, dried up, barren, scrambling over dusty plains and faced with unimaginable climbs. Thorns scratched, dirt stuck in my throat, breath was gritted, dragging.

The hardest thing I ever did was trying again. The hardest thing I ever did was live the months of failed conception, of bitter galling blood and toil.

And then... a precipice. Flat against the cliff, staring down, rock crumbling, skittering away with each weighted footstep. Uncertain, hope, fear, breathless anxiety, the ache of bones and mind. Inching along, one step, two steps towards an unknown summit. Eight months just moment by moment, a ticking time bomb, a waiting avalanche.

The hardest thing I ever did was carry another child and face the possibility of loss again. Such risk, such potential pain, for the hope of a glorious view.

The view. Spread below me, rolling, green, forgiving, gentle. Breathe in, fill my lungs, breathe out. Grasp the moment. Feel the sun upon my face and not be burned. My skin is strong now, strong enough to weather the sting of those grief rays when they touch upon me. But the view... glorious? I see the shadows that my journey etched across it. The dips and rolling valleys hide iced lakes and craggy cliff; grief and I have walked them as reluctant, sullen companions. The distant haze hides dust and desert - and hides my boy. He drifts in atoms of sun and dust and breeze across the landscape.

The hardest thing I ever did was learn to live again, be grateful for what I have, for luck and joy, like people say I should. But without him.

Without him.

What does your grief landscape look and feel like right now? What phases of your experience stand out, either because you weathered them in unexpected fashion or because they were particularly, perhaps unexpectedly, difficult? What is the hardest thing about where you are at this moment?

inside the broken

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.

I survived.

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?

the scbu legacy

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."

Flatly.

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?