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?

Family Assortment

If I had noticed them, standing there, standing by, I would have felt sorry for them. But I only had eyes for my girl. I should have felt sorry because, being my family, they couldn't run away. They couldn't pull that conjuring trick of disappearing for six months, a year. Then coming back with a forced smile and pretending that none of this had ever happened. That there was no other baby. Vanishing her with a slick sleight of hand. A grandchild, a niece. Here and then gone in a puff of smoke.

When I did finally look up, they were still standing there. Three decades of looking to them for succor, for consolation, for aid and I felt as though I had taken a hammer to them, smashed their bones, set a snare or a pit fall trap. "Come with me," I'd whispered in their ears. Luring them towards a place where they could only be hurt. Coaxing them along with me to a place of death and illness with false promises of chubby babies and matching outfits.

Until the day Georgina died I hadn't hit my younger sister for at least two decades. Our days of tussling and hair pulling long behind us. But that day, I felt as though I had delivered a sucker punch to that face, so dear to me. When I handed her the dead body of her niece with such maternal pride, I ripped at her flesh, pinched and pulled and bruised. In one fell swoop, I took all her security, all her potential pleasure and joy in her own pregnancies and babies, all her calm, all her peace and crumpled them up. I only hope that she has managed to smooth them out again and, whilst they will never be as they were, that they are still usable, that they will serve. And I am so sorry, more sorry than I can say. I was supposed to protect her, to show her that this was easy and lovely.  

But she didn't run, she didn't fall silent, she didn't refuse that body, its smallness, its deadness. She didn't flinch or look disgusted. And, if it were possible, that made me even sadder that my daughter had lost her own sister. And she'll likely never have another.

***** 

I sometimes feel that I was the bystander, the observer. As I watched my daughter's twin sister die. Because it is not in my generation that her absence will echo longest. After all, I managed to live nearly thirty years without her. I expected her to carry on living, long after I had died. But her siblings, they could have had a relationship with Georgina that lasted throughout the entire course of their lives, it could have been their longest connection, their most lengthy friendship. And nobody might have known Jessica better than her twin, kindled into being alongside one another, nervous systems and heart forming together. Georgina could have been a confidant, a supporter, a source of worry or trouble, a mortal enemy? I'll never know and Jessica will never know either. With luck I expected to fade out of Georgina's life at the half way point. But Jessica, she lost the potential of a lifelong companion. And sometimes that seems so much worse, so far greater a loss, than my own.

***** 

I have always been easily hurt. When I was a child, my father tried to toughen me up. It didn't work. I am, I have concluded, un-toughen-up-able. I am still what the kind would call sensitive and the unkind, a wuss. When Georgina died I felt as though all of my skin had been flayed off. That there was only the thinnest line of defence between the outside world and my churning, flinching internal organs. A couple of lines of cells perhaps. Not much of a shield. 

And then those words come. Those words. You don't need me to spell them out because you've all heard them already. People have said them to you, about your baby or your babies, about your grief, about how this all makes sense only you can't see it, about how you are too angry or too sad, about how you need to be like this or like that, about your self pity or self-absorption.

Like needles, piercing my onion skin remnants as I tried to clutch them around me, stabbing straight into my guts. When these words come from a nobody, a passerby, the needle jabs in and comes straight out again, a clean strike. But when they come from somebody close, someone you love, the needle can go in and explode. Like a dirty bomb. Spinning out fragments that scratch and remain. Thin pieces of metal that can encourage infection or which linger, healed over but never entirely integrated. Irritating your flesh. 

And I began to understand how family feuds begin, how people can chop those they once loved off like a diseased tree limb, never to be spoken of again, fit only for burning. Some of those words are not easy to forget. Sometimes I question whether, by forgiving them, I have somehow allowed my daughter to be set aside, considered less. Because I am afraid to make a fuss, to call them out, to say "no, you may not speak about her in that way. Do not dare." 

Photo by wwarby

But then I remember. All those other words, the words that wrapped me and my little girls up so tightly. That told me that she mattered. The dead one. The tiny, broken one. That I mattered. That what had happened was sad but that it was not my fault. The hands that held me and washed me and smoothed my hair. That cooked my meals and filled my car up with petrol and made sure that the mortgage got paid. And those binding, wrapping words, those kindly hands, are so much more important to me. 

It doesn't matter that the hurtful and the helpful often came from different individuals, some consistently jabbing at me with exploding needles, others always handing out tea and scones. Because it is easier to deal with being wounded with someone's arm slung around your neck. And, having lost one, I didn't want to lose anyone else, even those wielding pointy needles. Or perhaps I was just too much of a coward to risk making a scene. 

But here's the thing about family, be they the family you call your own by blood or the family that chooses you and that you choose in return, when others run away, they might just stay. If you're lucky. When others are silent, they might continue talking. When I was walking around like an open sore. When there were no right words because the only words I wanted to hear were something along the lines of, "oh this has all been some major administrative error and obviously should never have occurred. Our apologies and please do reclaim your daughter. Just fill in this form." When they had to talk on a subject that was painful and uncomfortable to them for hours and hours because I would not countenance anything else? Well it's inevitable that somebody's feelings are going to get hurt. It's hard to talk about grief and death at length, especially with someone who is as easily jabbed as I am. 

I found this quote on the internet a while ago, my sources tell me it's a Swedish proverb. These words remind me of my family.

'Love me when I least deserve it because that is when I really need it.'

+++++

And your family? Your friends? Did they run? Did they flinch? Did they say the right things? Or the wrong things? Or nothing at all?

If they hurt you, did you manage to resolve it? Did you cut any family members or close friends off entirely? And how do you feel about that now? Regretful, remorseful? Or glad and relieved?

geography

"psychogeography - the study of the precise laws and specific effects of the geographical environment, consciously organized or not, on the emotions and behaviour of individuals." 

Guy DeBord

“No matter whether one is flying over Newfoundland or the sea of lights that stretches from Boston to Philadelphia after nightfall, over the Arabian deserts which gleam like mother-of-pearl, over the Ruhr or the city of Frankfurt, it is as though there were no people, only the things they have made and in which they are hiding.”

W.G. Sebald - The Rings of Saturn

My daughter was born in our local hospital, about ten minutes walk away from my own front door. She did not die there. She died in another hospital, in a different town, about fifty miles away. 

The first hospital is so physically close, so much a part of my life, that I have started to tune its presence out. I used to walk past and feel the air dense, a haze of hopes and fears emanating from the coarse render, as though my daughters and I were replicated in every room on every floor. Now it hardly registers, a grey rectangle squatting on the horizon. The memory of my daughters' births overlaid now with a dulling patina of time.

It is the second hospital that haunts my thoughts, the one where Georgina died. It is an old building, a former work house and then an asylum. A strange, twisty place, full of echoing halls and outmoded gadgets. 

My haunting started early, even before my daughter died. In the windowless NICU parents' kitchen, amidst the labelled pots of yoghurts and stained coffee cups, I phoned my friend to tell her what had happened. I suddenly felt myself whizz up to the ceiling and then higher still, saw from above my distress call emanating from the gizzards of the building, a flickering patch of bioluminescence amidst stone and cement, a synapse firing helplessly in an uncaring nervous system of concrete and discoloured gloss paint. Tap tap tapping. And I knew that this place was one which would not leave my mind easily.  

The room in which my daughter lived was a small one, a side ward with a blue linoleum floor. There were four bays, the twins were in the two spots closest to the door, Georgina to the left hand side as you entered the room. This place where my first born spent the majority of her life, where she took her final breath. A room I subsequently spent a great deal of time in. I failed to recognise the incubator in which she had lived when it came around again, or to locate the room where she finally died, where her heart stopped beating. My husband knew them, the incubator he pointed out, the room he would not, but they had already left my memory. This made me feel as though I had betrayed her, that I could not find these two small spots of contact between my daughter and the earth that remained behind her. 

Image taken from the Norman B. Leventhal Map Center at the BPL

I should like to go back into that room and stand there, now that it is empty of people, at nighttime perhaps? I don't know what it is that occupies that space now. An office? A different type of ward with larger occupants? I know that it is no longer a neonatal intensive care unit. That time has passed. The NICU is now located in another hospital on the other side of the town. I don't know what it is that I hope to find there, in that stillness, in the depth of the night. I always had a creeping sensation that there was something happening in the NICU, something hidden away behind the scenes. Because the plastic boxes and alarms surely couldn't be real. Too terrible and strange, surely a facade or a trick. Perhaps I hope that she is still hidden in the walls somewhere. Or maybe I am looking for pieces of her? Or shards of myself? Those that flew away with such force that pieces might still be embedded in the walls, those that crumbled away gently to such a fine dust that they could never be reconstituted, those I ripped out with my fingernails and cast away with a shudder of revulsion. Look, there's the part of me that cared when your boyfriend dumped you. That small pile of fluff in the corner, there's my certainty that everything will, in the end, be ok. That small translucent snippet of cellophane, a discard from some piece of medical equipment, the part of me that looked around eagerly for help, turned to higher powers for assistance and aid. 

There is only one other place where I can feel her so close at hand. Rather unromantically, it is the final toilet stall at my place of work, the one that adjoins the cleaning cupboard. In my dreams, the two places combine, to form a strange lurching amalgam of places where I might find some left behind pieces of my daughter. I turn away from her incubator to find myself in the toilet cubicle, although in reality these two places are miles apart.

I used to kneel there, by that toilet, clutching at the bowl, nausea roiling through my stomach. After she'd died, I walked back into the small, smelly cubicle for the first time in over a year and sunk to my knees again. I suddenly felt solitary and alone although it had been a long time since I had been a being in triplicate. I balled myself up amongst the cleaning supplies, laid my cheek down on the industrial size packet of toilet rolls and ached for her. "She was here," I murmured. "She was just here." And as I lay there, I momentarily felt that I could reach out, grab the empty air and twist it through ninety degrees, to send her hurtling away from her death and back to me. But, sadly, that proved to be just an illusion, although it is testament to my own desperation and craziness that I tried it. I had to check that it wouldn't work. 

 Are there any places that remind you of your baby or babies? Or where you feel a particular connection to them? How would you, or do you, feel about re-visiting these locations? Do you feel that you are looking for something?

Who was that?

When Catherine W. came into this community, I found her comments here and there, nestled amongst the others. Her insight and the haunting beauty of her words blew me away, and I wanted to know more of her story. It unfurled, moment by moment, through the months. Then, as though my prayers were answered, she began writing her blog Between the Snow and the Huge Roses. I think I speak for many of us when I say that it was as though her words were always here within us and around us, like the Poet Laureate of the Heartbroken. Her girls were born so early at just over 23 weeks, given impossible odds. One survived. One did not. She writes about that liminal place between lucky and unlucky, grieving and rejoicing and the intersection of all those emotions at the same time. I hope you join me in welcoming Catherine, as a regular contributor to Glow in the Woods. --Angie

One thing love and death have in common, more than those vague resemblances people are always talking about, is that they make us question more deeply, for fear that its reality will slip away from us, the mystery of personality.

From Swann’s Way -  Proust

I have to confess that I have not read any of the seven volumes of Proust’s ‘In Search of Lost Time.’ I don’t expect I will ever read anything that comes in seven volumes; life is short and time’s a-wasting. But my eye caught upon this quote in an interview with the novelist Francisco Goldman about his most recent book, Say Her Name. It is a semi-fictionalised account of the unexpected death of his young wife, Aura, in a freak surfing accident.

He summarised. The fundamental questions in death are: who was that person? Where did that person go? Who was that? And in love, it is the same: why does this one person, out of all the millions on the planet, suddenly merge with me so I effectively want to be her all the time? Why does this one person so enthral me? What is it? What was that? Who was that?

My mind, as it tends to when questions of love and death arise these days, immediately jumps to my daughter. Whose personality was, perhaps, more of a mystery than most.

When I have mourned the death of an adult, I have felt the tug of the specific. The particularness, the peculiarities of that person. And, when they have left, the question hangs in the air: who was that? I mull over characteristics and search through memories. With time, I have often gained some degree of resolution to that pivotal question, at least a partial answer.

But three years after my daughter’s death, this question is still keeping me up at night. Scratching my head in bewilderment. Wondering. Who was that?

photo by quinn.anya

My daughter. My half made girl. Whose brief life was so tentative and flickering.  Supported by whirling, whispering machines that gasped and kept time for her. This person who I am so in love with that I have tried over and over to inhabit her body, to live her short life. Imagined myself into that plastic box. Sometimes I even feel that it was me lying there, our identities have become so confounded.

Who was that? This person for whom I have been in mourning for nearly seven times as long as she ever lived. Already disproportionate according to some. But I suspect that multiplier is only going to increase. 

My husband and I were the only mourners at our daughter’s funeral and we were early.  We walked around the outside of the crematorium before the service. There were labelled spaces around the pathway, for the flowers that we hadn’t thought to bring. A space had been laid out for ‘Baby Georgina W.’ I couldn’t help wondering why she needed a qualifier.  Nobody else being cremated there that day had a preface. No middle aged man Joe Bloggs, no teenage girl Jane Doe. Only their names. But the babies, they all had that descriptor, a capitalised Baby, pinned to their fronts.

This type of loss has a nomenclature all of its own. It has qualifiers. Not just simple death. Miscarriage. Stillbirth. Neonatal death.  A different brand of death.  I still can’t decide if these terms are dismissive, diminishing, acting as a kind of Death Lite, or if they indicate that a death so very terrible has occurred that it needs to be somehow singled out. Death Ultra Ultra Heavy – handle with caution and step away as quickly as you can, thankful that this one isn’t yours to deal with.

Because the mystery of personality, the question ‘who was that?’ has a slightly sharper edge to it when a person whose life was very brief is under consideration. Sometimes I think the world at large cannot decide whether the loss of a baby is rendered insignificant by the brevity of their lives. Or made even more tragic, rendering the whole topic taboo.

That sigh, the exhalation that often comes when I add the qualifier ‘at three days old’ to the opening statement ‘my daughter died.’ That sound of relief that always seems to say to me, “oh phew, three days old, well that’s ok then. That is not as bad as the death of a three year old. Or of a thirty year old.”

Those words that so many of us have heard, “it’s not as though you knew her.” From the mouth of my doctor, a few weeks on, “It’s not as though you lost your husband. It could have been so much worse.” But he neglected to mention how to quantify the difference between husband death and daughter death and I was too sad to ask.

I ask, who was that? They say, why do you even ask that question, you couldn’t possibly know the answer.

My daughter’s life was very short and brutal, existing between the hazy ground of late miscarriage and the shadowy life sustained by maximal intensive care. A few short months in my womb, where I had barely started to feel her movements, followed by three days in the desperate world of the NICU.  My husband and I sat, craning forward over the desk, foolishly eager and optimistic, opposite the hospital consultant. He gently explained that there was nothing more that they could do, it was time to stop.

As she was dying, I felt I knew her in a way that I have never known anyone else. Perhaps because her entire life was spooling out in front of me, nearing its completion.  But I felt that she was not only the premature infant, dying in my arms. Her corporeal form shed away and she was simply . . . herself. At all ages and at no age at all. Looking back, I’m not sure how much of this experience was fuelled by post partum hormones and shock. But, at the time, I felt we had met. In a way that I have still not met either of my living children and, perhaps, never will. I hope that I will not see their lives complete, come full circle, as I did their sister’s. Time stretches their limbs and works on them, changing them inexorably and mercilessly. But not on her. The child who is, simultaneously, both the eldest and the youngest in the family.

In other circumstances where I have felt determined to get things right, to respond correctly, to inhabit the moment, weddings, birthdays, surprises, I have felt a veritable agony of self consciousness. And death is one situation where there is no ripping up and starting again. I was going to hold my daughter, just once. She was going to die, just once. And everything I had to say to her, everything I could hope to glean about her, everything I would ever know about her, well, that was the hour. It should have felt terribly pressurised. But, as my daughter slowly died, observed by strangers, I held her. And, amidst that strange calm, I felt that I knew her.

Do you ever ask, 'Who was that?' How do you answer that question? In what ways did you feel like you knew your baby(ies)? Or do you cringe even thinking about that question? Does it feel impossible to truly know a baby? How has that affected your grief and the ways you see your baby? 

this cup pass from me

I am carrying a child who is almost precisely the gestational age her brother was when he was born.  And when he died.  And this is scaring the shit out of me.

26 weeks, 1 day is actually pretty decent for a micropreemie.  They told me Finn had at least a 75% chance of survival without major complications, statistically...even if he was a white male fetus, that most vulnerable creature of the species.

I have learned, more viscerally than any professor could ever have hammered through my skull had I actually braved such a subject in my studies, that statistics lie.  Or that only fools believe they will come out on the positive end of them, at least.  He did have major complications, ones that proved insurmountable, fatal.  Despite steroid shots, his lungs collapsed.  One so severely that they tubed him directly through his skin, through his tender, papery flesh and the tissue of his tiny ribcage.  I do not even know if there was anesthesia...I was ten rooms away, trying to recover some feeling in my legs and a blood pressure reading high enough to qualify as alive, to prove to the nurses that I could stand so that they'd let me hop in a wheelchair and go to him.  When we finally won that fight and were ushered to his incubator, the wounds of his own battle were already vivid upon him.  His little fingertips and toes were blackened from lack of oxygen, and his chest had been cut, his throat tubed.  Before his mama ever held him.  Before there was ever a gentle touch or a voice that spoke his name.

Then we did hold his hand, and he squeezed our fingers, and we stroked his little feet and marvelled at him, and in the end hours upon hours later when the outcome of the battle was undeniable we surrendered and unplugged him and held him and tried to fit a lifetime of love and comfort into one last hour, before he was gone.  We were lucky, beyond measure, to have that time. And he was medicated, probably more than I even realized, so I do not think there was pain for him at the end.  I allow myself to think that.  I need to think that.

But for the longest time the rest, those brutal early hours, were something I simply did not allow myself to think about at all, because there was this primal cry that would rise in my throat and choke me.  Because my baby, my tiny baby, had been born to a shock and suffering that even now I know I only know the half of.  Because that was the first of his brief hours of life.  And because it was me who enabled it to be that way, me who made the decision, at 26 weeks exactly, that we would rescind our previous "no heroics" designation and go all out to save the baby I believed by then could be saved.

I don't exactly think I made the wrong decision...that's not why I lie here in a cold sweat before dawn some mornings.  The odds were that he might have survived and thrived.  I would, I think, have felt worse had we done nothing and lost a baby who might otherwise have come through okay.  And I don't exactly feel guilt, because I made the decision without guile and on the basis of the best advice I could get at the time.   But owning that decision and the pain that it - that I - caused that tiny boy will sit with me, part of me, until the day I die.  It is, if I am honest with myself, the cruellest thing I have ever caused to happen to another human being, no matter my intentions, my investment, the depths of my love.  And what wakens me in the thin light of 4:30 am these days, heart pounding, is the fear that sometime in the next week or two I may have to face it again, to choose again.

Choice is often and in many ways a privilege.  When you have no real control over the outcome of your choices, though, it can feel like a mockery, like a bitter joke.

They ask me if I want the steroid shots and I say, i don't know and I cast my eyes around the room like a trapped animal, wondering hell, do i look like i'm writing this story, like i'm in charge here?  The truth is if my cervix is showing significant weakness of course I want them NOW and if it's not I want to wait because they are most effective when given within two weeks of delivery and preferably after 28 weeks but sometimes it's weak and soft and sometimes it's not, that tricksy cervix.  The truth is these same practices have taken far less significant decisions out of my hands in the past, in the crises of labour, so the fact that they defer to me on this Big Thing just leaves me wary, puzzled.  The truth is they don't know what's going to happen and I don't know what's going to happen and I don't want control of Big Decisions in this liminal boundary zone because I know it is a fool's game. 

I am chickenshit, burnt crispy.  I want to abdicate.

The little life that hangs in the balance...for my own sake, sure, I want her at all costs.  But for hers?  That is the road I do not seem to know how to walk this time, the road I wish I could close my eyes to and ignore until it is safely past and I get to believe, maybe, that I will not have to choose again whether or not my child's brief life will be one of pain and machines and invasive procedures, until we reach a place where I can breathe and hope that I will get to play mother this time, not hapless, impotent god.

I whisper, please.  give me a few more weeks, and i'll happily pretend that I'm bossing you around for the rest of my life.