Saturday 14 December 2013

Blur

I own a pair of glasses. Glasses that I, for reasons that even I am not entirely certain of, rarely actually wear. Despite the fact that I know that I can see more clearly when I am wearing them.

The world often appears slightly blurry to me. More so when I am tired.

I go to see Jessica perform in her nativity play. I lurk at the back, standing up so that I can see sheep number 4. I can't help but think that this may be a part reserved for those whose speech is . . . not the clearest. But maybe I'm paranoid. And her 'Baaaa' is amongst the most convincing I've ever heard if I do say so myself.

I stand and my eyes blur. The green programme names 'Georgina Walsh' - perhaps as a sheep, maybe a star.

A narrator? It's doubtful.

But in that world where she lives? Everything may be different and Jessica's speech is as clear as a bell. Perhaps she is out front, telling the whole tale.

But Georgina? She isn't a star. Or a sheep. She doesn't speak. She doesn't live.

She's dead. Still shocks me. I miss her. I miss my tiny, first baby so very much.

And I curse my slowness. Why so slow Catherine W.? After all this time?

Is it because you refuse to see properly? Silly, blurry you.

Saturday 23 November 2013

Daughters

Alice Mary was born safely, three days overdue, on the 12th of November. The labour was so quick that she was born at home. My husband had gone to take Jessica and Reuben to school, on the agreement that we might think about going to the hospital when he got back. But by the time he returned, she had been born.

Having never had a spontaneous labour at term before, I don't think I realised how quickly progress could occur. I am so very grateful that Alice's birth was straightforward and neither of us any the worse for the amateur nature of her delivery.

A strange full circle completed as I caught her head and felt her body slip out, my own scream echoing around my own bedroom. I want to make it mean something, to go from technological innovations and medical interventions to just my own quivering, screaming flesh. But it doesn't mean anything at all, it is only the way things worked out this time.

An ambulance crew and midwives soon descended and the strange, solitary spell was broken.

***

She's always with me. Irreplaceable. Implacable. The constant at the centre of the equation as other things are added and subtracted. Georgina is the never changing 'c' - always. I'm always waiting for her, she is always dead and so we remain, in solemn stasis, whilst everyone else spins around us in unseemly haste.

I am reading a book, 'Far from The Tree', which is a reflection on how families cope in situations where children are very different from their parents. For instance, where the child is born deaf, with Down's syndrome or homosexual and thus, arguably, becomes part of a subculture that their parents cannot fully enter. It would seem that part of us wishes to, or believes that we will, simply perpetuate ourselves when we have children. That we will reproduce literally.

It seems to me that was never my intention. Perhaps it is the legacy of having a first child who is so very, very different from me? She is dead and I am alive. I will, one day, become like her and thus perpetuate her deadness. She will not inherit any of my qualities or failings. Not for her the dreaded shyness or self doubt. Instead I will inherit her single and defining characteristic.

I think that I take pleasure in the elements of my children that are most at odds with my own character because their difference is . . . . . delightful. Perhaps because I do not much like myself and would not want to see them become a version of me? But Jessica's gregariousness, Reuben's no nonsense staring down of the world and sharp toothiness, Alice's . . . well, who knows as yet. They delight me.

***

I am back in the strange echoing place of childbirth and newborn. Probably for the final time. I look into my daughter's newborn dark blue eyes and see her sister's. That far away look. And I wonder.

The small, scrawny limbs with their peeling skin, the ache of the fuzzy head and rolling eyes. The mouth that seeks and the hands that pat, pat, pat. She seems unbearably small but I know that she isn't. I wonder, fleetingly, if she might stop breathing. But put the thought from my mind as I can't even start to think it.

***

"Was she a single baby or a twin?"

"Single."

"How many other children do you have?"
"Two," he says.
"Three," I say.

He peers at us with some consternation, perky bow-tie suddenly seeming somewhat droop-ish. His hand poised over the keyboard.

"Three," I pipe up decisively. "If you look at the register you'll find three other children. Our eldest daughter died but her birth is registered as she died at three days old."

"Ok. Any stillborn children?"

"No."

I fleetingly wish that he had said that he was sorry. But I didn't really expect him to.

And this is where it ends I suppose. There will be no more babies. I am tired. I just hope to keep going, that I am not an absolutely awful mother. That I am not overly harmful.

***

Drifting in and out of sleep, I hear this song from the radio. It was written by Molly Drake, mother to the famous song writer Nick Drake.

Happiness is like a bird with twenty wings
Try to catch him as he flies
Happiness is like a bird that only sings
When his head is in the skies
You can try to make him walk beside you
You can say the door is open wide
If you grab at him, woe betide you
I know because I've tried
Like a butterfly upon an April morning
Very quickly taking fright
Happiness is come and gone without a warning
Jack-o'-lantern in the night
I will follow him across the meadow
I will follow him across the hill
And if I can catch him I will try to bring you
Why yes, happiness
If I can catch him I will try to bring you
All my love and happiness.

Perhaps it is my imagination but to my mind there is a catch of weariness in those final lines. Because the following isn't always easy or enjoyable. But I follow him, that twenty winged trickster, on behalf of other people.

If I can catch him my dear loves. If I can catch him, I will try . . . . .

Because that is what I want for you all. Even my littlest one who has tried to foil me by dying.

All my love and happiness. Happiness.


Monday 14 October 2013

Enduring Love

I never meant to fall quiet.

But it shuts you up. As somebody far wiser pointed out.

It does. It simply shuts you up, it grabs your words away and runs off into the middle distance.

Whatever 'it' may be.

***

I bob about, broadening, surfacing occasionally from whatever heaviness it is that presses down upon me so. Guilt mainly. I think. I'm so clogged up with it that no senses are free to probe its precise identity. It is something that I press through, viscous and syrupy, I squelch along, my body like an ever expanding rock.

36 weeks pregnant now. But I find that I can't really think of her at all.
I can't imagine her alive, can't imagine her dead either.
Either the first or the last.

I try to speak. For my eldest daughter, my first child. But I find that it has  . . . .  shut  . . . me  . . . up.

Because I can't talk about her, or about what happened to her, in a way that anybody would want to hear. Or that would even make sense.

The quick phrase that I have prepared for occasions when I feel that I have to mention her, 'my daughter was one of twins but her sister died in intensive care' is as dry as tinder.
But it never catches alight.

Five years on and it is still only a howl that will do. Or silence. Which is the more acceptable option.

My silence peers at others. Where it sees a suspicion of a companion, sticking out around the edges of conversations and glances. Not properly tucked away.

I sigh and avert my eyes. Because what could I say? In places where there is no comfort. There is simply nothing. It shuts you up.

When people talk to me about this pregnancy, I want to change the subject. I don't want to draw any attention to myself, to her, to any of them. I don't even feel like I want to draw attention to Georgina. Which is daft - I mean what is the worst that could happen to her? Didn't it already happen? Well, one variant anyway. There are whole worlds of 'worst' out there, it transpires.

So it seems best just to quietly drift along, trying to remain inconspicuous, hoping to stay on the right side of the numbers.

***

Jessica selects a library book, 'Hello Twins', and I feel a slight stab, somewhere in a minor heart valve. We read the book, I try to explain that she was a twin. She looks at me, utterly mystified. And I lapse back into silence.

The same old battles rage inside, guilt and regret. Wishing that I were a better parent, a better mother. Perhaps none of this would have happened. I still expend a foolish amount of energy on simply wishing that it hadn't. No matter how many healthy babies I can birth, there will always be the first two. The unexpected and half finished twins. They look at me reproachfully, heavy with symbolism and meaning.

Although I don't believe in either of those liars, symbols, meanings. Not anymore. Doesn't mean I don't miss them from time to time however.

I plough on.

Struggles with homework and communication and toilet-ing. The slow, grinding acceptance that I am not a minor deity, that I cannot rearrange this world to suit the needs of one small child. Instead I am forced to assist in squishing her into a more socially acceptable shape instead.

Reuben bites me (unexpectedly as I thought this time had passed) and looks up, toothily satisfied. I can hardly blame him. If I had access to the being seemingly in charge of all this would I not be sharpening up my own teeth, ready to get my quick chomp in when an opportunity arose?

***

But, in the quiet, something still murmurs.
Despite my attempts to stuff it down into various holes, to stop its incessant, small voice.
It might have shut me up.
But it can't shut this up.

It won't let me forget.
It won't let me give up.
It won't keep quiet.
It chants.

I think that this un-shut-up-able element  . . .  might be love.

Wednesday 28 August 2013

Friday 2 August 2013

Mutterings

It is nearly five years now since Georgina died.

Like a slow tide, the grief that once turned me outwards now drives me inward.
Towards silence.

Jessica progresses. Sometimes slow. But steady.

"What did you say my darling? Try again?"
She repeats herself.
I fail to comprehend.
She sighs wearily.

We both stare out of the window or at one another in the rear view mirror, communication impasse locking us in place.
Toilet training grinds onwards into the middle distance.
Her kind eyes, her patient hands.
We will try again.

Reuben grows.
He issues orders, my tiny emperor.
Mildly unbelievable boy.
The unlikely child who did not die, who was not ill.
He looks like me, grey eyes, prominent ears.

Of the first (third) child, little mention is made.
The silver disc around my neck with her name engraved dangles, tarnished.
My naive expectations of kindness and comfort set aside, both for others and for myself.

Another baby kicks inside me. Just one. A girl or so they tell me.
Already bigger, already older than one of her sisters will ever be.

I imagine the flickering fused eyelid, the thin hand.
But not for too long as I cannot bear to.
I talk of her as though she will be born on her due date and live.
I do not claim her as the fourth child.

I stay quiet.
On the whole.

Monday 27 May 2013

All's Well

After nearly five years, the words have dried up.
Nothing left except a heavy heart that shifts inside and aches.

Surfacing from sleep, a voice sings to me.

'And though death draws near, I've nothing to fear today.
As the colours they fade, the colours they fade away
All's well . . . all's well.'

A voice that sounds certain. Sure. Quiet and dignified. Seeming to echo through time, at one remove.

A song inspired by Dr. Edward Wilson, who was the chief scientist and artist on Scott's doomed expedition to the Antarctic. The lyric is based on a letter he wrote to his wife, as he realised that he would soon die.

Dr. Wilson believed that everything that happened to him was part of God's divine plan. He repeatedly used the phrase 'all's well' in an attempt to convey this in his final letters.

I wonder.
A death that was avoidable, freezing, lonely. Only a matter of miles away from safety and life.

I wonder.
Georgina's death seems so strange and senseless.
To half form a little body only to cast it aside.
Every narrative I spin to myself frays apart at the memory of the blood running out of her tiny mouth, the laboured breaths, the little hands that squeezed.

Two deaths. One remembered by some. The other forgotten. Except by me.

But it matters very little how I think of it. In truth.
I can fight with it, I can howl at it, I can curse and spit and swear.
I can cry and think it unfair.

It remains there. Implacable and suspended.
In a time that I cannot alter.
As cold as snow.

Perhaps I should just attempt to believe that 'all's well.'
To let some of that quiet dignity seep into my tired old heart.
Maybe if I said it frequently enough, whispered it to myself in the night, I would come to believe it?

All's well.

You can hear the song here

Saturday 11 May 2013

Whispers from Billy and Samuel

I walked outside with you this evening. Into the dark, damp grass beneath my feet, grainy stone.
Cool air whistling into my lungs, inflating, ribs lifting, heart contracting.
Moon ponderous in the sky, waiting for introductions to be made.

Even here, in the dull British suburbs.
No pear tree or dark roses.
The Moon waits for a small child with wide eyes.

But I have no year-old child to carry out. Not in any world.
Only a weary thirty three year old body, tattered, to raise a blood shot eye aloft to your fat expectant whiteness.

My arms are full of imaginings, gathered to myself.
The soft, sweet heft of a child never-to-be.
The phantom weight settles comfortably into nerve endings, the old habit of making solid flesh from  air, the repetition of yearning that has altered their branchings and signals.

I wish that you could see her, old Moon.
I have carried her outdoors to be introduced, the nothingness of air shaped into limbs and lolling head.
My daughter, never in need of a tattered blanket.
Neediness is not in her nature.

You look blankly at a woman turning nothing into her shoulder.
No introduction necessary.
This is already familiar.

But, just briefly, I look through the eyes that might have been yours.
My daughter, tiny creature, with a mouth that never made any small cries.
Just whistled breaths.

Your eyes.
Wide.
Borrowed by your mother, to look at the Moon anew.
To make my cries seem small.
And I twirl about, clumsily, drunk with light and wishes.

***

whispers from here and here

Sunday 5 May 2013

Time

It's early in the morning of Reuben's second birthday. The house is quiet, calm grey light filtering into my kitchen window. The presents are wrapped, the food prepared.

Time rattles past. In a whirl of computers and spreadsheets, children, meals, strangely vivid dreams that leave me unsettled. Until there is no time left. I mean to read and write but there is nothing to say and no time to write it down in. Intentions dry out and blow away in the wind, desiccated tinder-like stuff.

"Play me the song about shooting," Jessica demands. I look up. Disconcerted. What the heck? She wants a song about shooting? Have I been playing her a song about shooting? Argh. Neglectful, bad mother.

After about ten false starts, I finally tumble to the fact that she wants the track 'Titanium'. We dance around together, slightly grimly on my part. Shoot me down but I won't fall. I am titanium.

I swear that she has more titanium about her than most. But not me. I'm more like . . .  a marshmallow. Easily squished.

***

Reuben is slightly suspicious of the entire birthday celebration. He squints his eyes at the presents and fuss. Not certain what is happening and not sure whether to trust in it. I am so protective of this child, his scant hair, his wild emotions, his stumbling words.

***

Five years this summer and I am sad. Not angry, not devastated.

There is no fire left. Only a small, cold sadness that sits in my throat like a smooth pebble. Or perhaps it is merely the scar of where that stone resided, my throat permanently scratched by a memory of what it once contained.

Sadness accompanied by flashes of blinding happiness. Throat, eyes, brain. None of which seem to work in their old familiar ways. Photoreceptors all bent out of shape, throat etched with a reminder of something that is long gone, brain all fried and fuzzy. But, eventually, this will be the old familiar way. I've had a seventh of my life to adjust already. That proportion may well increase. If I'm lucky.

An icy wire running alongside my spinal column, a pebble, something cold and metallic in the palm of my hand. Something that even a multiplicity of metaphors could never quite capture.

And yet it is nothing special or unusual. Except in the context of the specificity of the link.
Me, my daughter, Georgina.

***

Occasionally she resurfaces. Sometimes I drag her up, through the years. Never can quite understand what prompts my actions on these occasions. Sometimes it just tumbles out, before I've had a chance to make a decision.

"Oh, I'm so sorry," a colleague says kindly. "Just goes to show that you never know what other people have been through."

And, later, a back handed compliment, "but you've a lovely figure . . . given that you've had two children."

***

Time.

I'm scared, yes I'm scared. 
That like the wind takes a leaf from a tree, time will take your love from me. 

That time will take this strange, dead-end love away from me.



Wednesday 17 April 2013

Ashes

Nobody in real life will really understand this.

The house next door to us caught fire this evening. I was taking the kids out of the bath and suddenly heard a lot of swearing from my husband in the room next door. He burst into the bathroom and said, 'get the kids dry and out of the house now!'

I didn't really understand what was happening but I could tell that he was scared so I grabbed a load of towels and wrapped them up. When I was standing outside the house, I saw that the fire next door was taking quite a hold. I handed Reuben to a neighbour because I had to go back in.

An off duty fire fighter was there, telling my husband to close the windows. He told me not to go back in. I garbled at him that I had to get my daughter's ashes, that I was sorry and I knew it didn't make any sense as she had already been burnt but that I couldn't let it happen again.

I must have sounded completely insane, sufficiently insane to frighten him out of my way anyway, as he stepped back. So I plunged back up the stairs, into the wardrobe, grabbed Georgina's box and dashed back out again.

My neighbour said that she understood, that she would have gone back for the baby box too.
She doesn't know about Georgina. She doesn't know that I am the sort of person who goes back into a burning building for ashes.

All those people filming with their mobile phones, filming me triumphantly emerging with a box of ashes. I'll probably pop up on youtube somewhere, emerging from my front door as next door's car port explodes, happily clutching my white memory box.

Unfortunately for the house next door, it's a bit of write off.
Ours is smelly but just fine.
And the only ashes are those in the wardrobe.

Monday 15 April 2013

Scrapings

'I know it is coming, and I do not fear it, because I believe that there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. I am grateful for the gifts of intelligence, love, wonder and laughter. You can't say it wasn't interesting. My lifetime's memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.'

Roger Ebert, I Do Not Fear Death

I lunge for the radio, like something about to drown. It is, frequently, the only source from which anything even vaguely resembling sense emerges.

I hope it may be like that. That Georgina's life was just a brief slip from one contentment to another.
An ignorance to a release.
I'm sorry that she didn't have any gifts or memories.
Very sorry indeed.
But who needs a little souvenir of the Eiffel Tower?
Maternal love, a sister, pain, years, days.
Everything, in the end, is surplus to requirements.

In the kitchen I try and relate this minor revelation, the slipping, the comfort, a brief display of my own little souvenirs.

"Oh God, do you ever talk about anything that isn't SO heavy."

The pot is slammed down. I retreat.

****

I do talk about things that aren't heavy. I play a lot of Candy Crush, squishing boiled sweets into the hereafter with the help of my trusty companions, striped, wrapper and bobbly (as I call them). Crunch, crunch, squash. It's a cheery world where lives are reallocated after a certain period of time and, no matter how badly you tie up, you can always start again. I'm sure that is part of its appeal.

****

'Now the news has arrived 
From the Valley of Vail
That a Chippendale Mupp has just bitten his tail,
Which he does every night before shutting his eyes.
Such nipping sounds silly. But, really, it's wise.
He has no alarm clock. So this is the way
He makes sure that he'll wake at the right time of day.
His tail is so long, he won't feel any pain
'Til the nip makes the trip and gets up to his brain.
In exactly eight hours, the Chippendale Mupp
Will, at last, feel the bite and yell "Ouch!" and wake up.'

Dr. Seuss, The Sleep Book

Things seem to take a long time to reach my brain these days. Participating in the research group is a little like picking a scab or poking about with your tongue in a rotten tooth.

I had a discussion about medical professionals who are involved in the handling of withdrawal or withholding of life support from very young infants. They don't really receive much training in what to do or what to say.

I remember one of the nurses with us when Georgina was dying, it was her first death. She tried so hard, to be professional and to keep asking how I was during the rest of the time that Jessica was on the neonatal ward. I never really thought that it must have been hard for her too, that she was just a young girl. When you land up in a world where you have to hand over the person you love most entirely to the knowledge and competence of another human being, you want to forget about their frailty. Angels or demons or wizards. Anything but human, prone to fail, prone to mistakes.

I have this discussion about how the conversations and action immediately surrounding the death of your child can have long reaching ramifications into how you feel about that decision and that experience many years down the line. I feel calm, I don't cry, perhaps it's easier here where nobody is flinching as they've all sat waiting for babies to die. Checking breathing and listening for heart beats.

Then, a couple of days later, the pain obviously finally reaches my brain. Through all the numbness and   'I don't think about that's and 'la la la la la, I can't hear you's and 'level 65 of Candy Crush MUST be defeated' and 'MUST just carry on going' and all the other crap that accompanies the process of living, living, living, on and on and on.

It still hurts. Somewhere underneath all of that.

Once more I'm crying in a supermarket aisle. I hide amongst the reduced items. It will pass. It always does.

*****

This is a song that has haunted my life a little.
It is a much loved song from my youth and reminds me of both church as a little girl and of the smell of artificial smoke machines and stale alcohol.
It was a song sung by my little sister's best friend at her wedding.
It was the song that I played on the way to Georgina's funeral.

Turns out that the original track, prior to all the re-mixing and jiggling that made up the version that I know best, was recorded for a video only documentary about an obese man who was trying to lose weight.

Somehow that seems right.

This song about an obsese man and the Chippendale Mupp and technicolour facebook games and small souvenirs of the Eiffel Tower all jumble together and form a strange, beautiful, horrible trap. Where the more I try to extract any meaning whatsoever from the mixture of objects, no matter how close it seems to lurk beneath the surface veneer, the more entangled I become.

I wonder what it is like to be where she is, where nothing is required.

Perhaps it is best simply to wait. For contentment.

And, in the meantime, hit me with it.
Song recorded for obese guy. Prop me up a little will you?

Thursday 21 March 2013

Abnormality

"You do realise," she says, examining me like a particularly gruesome specimen dredged up from the bottom of the ocean, "that this isn't normal."

I smirk. Normal was lost to me, slipped through my fingers and left the building, nearly five years ago.

I'm not normal.
It's not normal to write a secret diary on the internet for nearly five years about a child that lived for three days. And quite a bit of other stuff that would probably be better off left deep inside my head.

Hell, she doesn't even know about this place.
Imagine how I would suddenly plunge down her normality scale if she did. The floor would swallow me up and there I'd be dangling off the bottom, clawing up by my fingernails, the truly strange and crazy clinging to my ankles.

"No. I suppose it is not, exactly, normal in the grand scheme of things. But it wasn't something I planned."

She doesn't realised that I, kind of, disagreed with her. Sneakily. Smirkily.
Maybe I like it down here.
Off the scale.

Think that my scale is just a whole lot less finely gradated than hers.

***

The way that I am. She thinks, because I cry a lot, that I am sad.

But my incessant crying is just a release. From anxiety, from bewilderment, chaos, feeling overwhelmed.

I slither about. Seeking out broken things or sad songs. Sentimental turns of phrase. Sickly sweet facebook memes that make my teeth curl and my eyes water.

Because crying doesn't really hurt anybody. I'd sometimes rather smash plates or hit walls.
But crying is quieter.
The sweet thick cake of emotional expression as opposed to the thin, quick alcohol of anger.
Subdued. Cautious. Risk averse. Maternal.
Cover me up in a layer of fatty cake and tears.

"I'm worried that you are going to miss their childhoods," she says.
And I want to laugh. Because if there is one thing I'm pretty certain I shall not do, it is that.

No sleepwalking past these.
I am forever shocked to find beating hearts that thump and pump inside chests, I stick my ear flat, flat, flat to hear blood swooshing and valves opening and closing.
I try to listen to their hair growing through those thin, warm scalp that smells so sour.
I am forever invading personal space, checking, checking, checking, re-checking.
Are you still alive? Are you still alive? Just checking. Hopefully not in a sinister way?
I seem to need a little reassurance.

The hands that try and swat you away, the thick skull that batters your nose and makes you howl in indignation and pain, the utter exasperation of your twenty third attempt to get out of the door on time being scuppered by a dirty nappy and a missing flask.

The glory, the revelling in it, of being alive, of glances and punches and sighs aimed at you and your own slow, adult, lumbering stupidity.

Their brilliant dashes, their vividness, those creatures that are, somehow, linked to you but you have entirely forgotten how and why. Or even who you were in the first place. Something put here solely for the purpose of looking at them perhaps?

I don't know quite what it is that I am doing.
Apart from trying.
Trying my best. Cack handedly I'm sure. Imperfectly I'm sure.

But I am not missing anything at all.

Or slightly less than most. I'm aware. I'm aware.
Of all the strange good fortune that is mine. How little I deserve it.
How suddenly it might all be ripped away from me. My little thin blanket of comforts.

And, after that, who wouldn't need a good cry. It's that or explode.
So that's why I cry, after all this time.

Name one thing about us two anyone could love
We roll out the red carpet
When rotten luck comes down the road
Five four three two one
Watch for the flash
Something here will eventually have to explode
Have to explode




Thursday 28 February 2013

Small consolations

I have volunteered to be a parent representative on a research group examining difficult decisions made in neonatal units. Our first meeting was today.

I caught the tube to London Bridge. Alongside the moving walkway was an advert offering free life insurance for new parents. £10,000 during your baby's first year of life.

For a moment I was non-plussed. Offering to insure your newborn child from birth to the age of one for free and advertising the payout. With such jolly lettering? With cartoon rattles and nappies?

Then I tumble. It's the parents. It's the death of a parent that you are taking out insurance against. Not the baby's.

Of course.

***

We talk about palliative care. About how it should not be something wheeled out at the final pass. It should be integral to the lives of every extremely ill or premature baby treated in ICU. It should be the default, set to gradually fade away when everything goes according to plan and the wind blows in the right direction.

I think, perhaps, that this should be the case in adult medicine as well. Under certain circumstances. Although I do not give voice to this as it outside the scope of this meeting.

I do believe that as we will all, inevitably, die, it might not be a bad idea to set our minds to that final horizon. That palliative care should start at birth, the process of reconciling yourself to your own mortality. Why should it always be the feared and awful last resort?

Because palliative medicine is not about admitting defeat, throwing your hands up in the air and saying, "we did everything we could." End of life care can be a more active process than that, focused around comfort and privacy.

We talk about the conversations that we had with our children's consultants. Those difficult decisions that were taken.

Sometimes these aren't formal. They aren't in private rooms, they aren't with both parties fielding all their resources. In my experience, the truth comes out late at night, when everyone feels a bit frayed, when nobody is at their best. The final formal agreement might be clear and amiable. But it has usually been hashed out long beforehand.

In snatches of conversations on the ward, in corridors. In pleas and denials.

The conversation rumbles on, nearly five years later. I'm one of the lucky ones. It is a privilege.
To have had Georgina's death handled in the manner that it was.
To be able to discuss these matters and to hope for a change.

***

Then I bathed myself in light.

I went to an art gallery, on my own.
Because I appear to like superimposing disorientating experiences upon one another?

Light Show at the Hayward Gallery. Art installations made from light. Solid light. Light bulbs that replicate moon light. Endless churning cubes. Water fountains frozen in time by strobe lighting. Monochromatic worlds where everything appears red. Or blue. Dark places that you have to edge around, feeling your way along on the walls. Hoping not to stumble.

I eavesdropped.
On conversations about being an intern.
How not to waste your life doing something you find boring (ahem) or how working for free was slavery (ahem) which are nice dreams but I couldn't help emitting a cynical chuckle. Which I fear may have been overheard by one party.
On what other visitors thought of the installations.
On a mother talking so charmingly to her daughter that I wanted to tell her how much I had enjoyed her story about the dinosaur and how wonderful she was.
I remained silent.

I thought about the decisions that I had taken.
Hoping to be purified, hoping to be justified.
And my eyes were burnt away by the lights.

Friday 15 February 2013

The Unquiet Grave

I went to listen to Kate Rusby sing on Friday night.

If you've been reading for a while, you will know that I love Kate Rusby. I've posted many of her songs here over the years. Her album, Awkward Annie, was probably one of the pieces of music that I played most frequently whilst I was pregnant with the twins. It makes me smile that the girls might have heard her voice singing during the short time in which I was pregnant and they would have been able to hear. I picked Awkward Annie up once again after Jessica had been transferred to special care and I could play music on the ward - one of the very few advantages of MRSA is that you get to have a biohazard sticker stuck to the door of your private room and you can play music.

There is one song from that album, Daughter of Heaven, that I can hardly bear to listen to as it reminds me so of my sweet girl. I tried to play it once in the car and even my husband, not known for sentimentality, asked me to turn it off as he couldn't stand it. I've played it occasionally but only for her birthday and for one other little girl that the song reminds me of.

I went to hear Kate Rusby sing, with my younger sister. I left the children sleeping.

She has such a beautiful warm voice, two little girls and a handsome husband who plays guitar on the stage with her. It would be easy to be jealous but she is so kindly. And I try not be envious these days.

I was a bit worried that she might sing Daughter of Heaven and I would end up in a mess.

She didn't sing it.
But she sang a different song that resulted in the same, sorry mess. And the sweet, kind, warm fingers of my sister's hand pressed against mine. Because she knew what I was thinking of.  What I am always thinking of.

As I cried in the still darkness of the theatre.

It's a song called The Unquiet Grave.

And there is only one unquiet grave in our family and only one mourner who cannot stop mourning. There is one person who, wherever you take her, whatever you talk about, whatever transpires.
Goes back to a grave.
A small grave.
With one set of footprints around the edges.

I'm sorry that I will not let you sleep, my sweetheart. My dearest daughter.
Because I don't want you to be in a grave, unquiet or otherwise.
But it is so. Well now . . . you are not actually, in truth, in a grave as your body was cremated.
So you are ashes.
Which is as good as a grave.
Just as final.
You still must leave.
And I must leave you.

So turn in.
Turn in my sweetheart.
Turn into your grave.
Because you must. The world is not for you. I am not for you.
I wish that it were otherwise.
I wish that so very much.
With all my heart.

Until I turn in myself.
Until I turn into my grave.
And leave this world.

Perhaps to join you?

I miss you.
I always will.

I love you.

How pleasant is the wind tonight
I feel some drops of rain
I never had but one true love
In greenwood he lies slain
I'll do so much for my true love
As any young girl may
I'll sit and mourn all on your grave
For twelve months and a day

The twelve months and a day being up

The ghost began to speak
Why sit you here and mourn for me
And you will not let me sleep
What do you want of me sweetheart
Oh what it is you crave
Just one kiss of your lily white lips
And that is all I crave

Oh don't you see the fire sweetheart

The fire that burns so blue
Where my poor soul tormented is
All for the love of you
And if you weren't my own sweetheart
As I know you well to be
I'd rend you up in pieces small
As leaves upon a tree

Mourn not for me my dearest dear

Mourn not for me I crave
I must leave you and all the world
And turn into my grave

Traditional ballad

Thought to date from around 1400

Tuesday 5 February 2013

History

“I confess I do not believe in time. I like to fold my magic carpet, after use, in such a way as to superimpose one part of the pattern upon another. Let visitors trip. And the highest enjoyment of timelessness-in a landscape selected at random-is when I stand among rare butterflies and their food plants. This is ecstasy, and behind the ecstasy is something else, which is hard to explain. It is like a momentary vacuum into which rushes all that I love. A sense of oneness with sun and stone. A thrill of gratitude to whom it may concern-to the contrapuntal genius of human fate or to tender ghosts humoring a lucky mortal.” ― Vladimir Nabokov, Speak, Memory

There is no randomness to my landscape.
It is an intentional re-visiting.
A loop that catches me up and deposits me in the same place, again and again.

Ooooo, you thought you were on a night out?
In a work meeting?
Watching television?
Driving your car?

More fool you.

Nope, here you are again. The NICU.
Nonetheless there are rare butterflies and their food plants.

My daughters.
Flit and feed there.

Extremely premature birth.
Extremely low birth weight.

Pulmonary haemorrhage.
Renal failure.
Withdrawal of intensive care.
Deep regret.

Ventilation for 49 days.
CPAP for a further month. I'd given up counting days by then.
Oxygen for a further seven months.
Renal problems.
Heart problems.
Circulatory problems.
Retinopathy of prematurity
Pre germinal matrix haemorrhage of the brain.
Sepsis
MRSA.
Endurance.
Beyond my comprehension.

History doesn't, necessarily, go away. Like a magic carpet, it may fold back upon itself.

The past might be another country. But it looks familiar. The pattern is the same, reflected upon itself in the mirror.

I went to a conference in London on Thursday, a joint project between specialists in education and neuroscience. A few of us parents, along for the ride.

We look at videos.
The experience of a premature baby (bubble wrap, needles, ventilation) compared to that of term baby (the breast seeking crawl), the aloneness of the extremely premature, their pinioning, their isolation, their flinching from touch and sound and light. The underdeveloped 'social synapse,' the severing of the connection with the mother, their other half. The lack of 'scaffolding' afforded to a baby born healthy enough to survive without medical intervention.

I think of J and I wonder if could survive. In a word where I knew no 'other', where all that happened was an invasion, a transgression. Where the notion of maternal scaffolding did not exist.

The development of a premature baby's brain. This is not always the same as a term baby's.
In some cases, they never recover.
They show us in slides coloured with 'Brainbow' - a jarring-ly cutesy name. The pretty colourful effect running contrapuntally to the words issuing from the lecturer's mouth.

In my day, the sections were black and white.

The epidemiology. The graphs. The significance of the figures.

Graphs that don't even include babies born before twenty four weeks.
The hinterland inhabited by my daughters is, literally, uncharted territory.

And I know that I'm not alone, not in this room.

But in the wider world. I'm alone.
In a vacuum. In a place that I love and hate.

Because I have looked at my children and wished that they would live.
Equally, I have looked at my children and wished that they would die.

Perhaps this is an experience that there is no returning from.
That this dichotomy is one that cannot be drawn back together.

I am a broken person.
But at one with sun and stone.
And with a thrill of gratitude to my tender ghosts, one alive and one dead.
You both haunt me.

I sometimes wish I had never tried to bring you into the world.
Yet, I can't quite bring myself to regret you. Either of you.

Where to go from here?

To serve you both as well as I can?
It's a little foggy. Nearly four and a half years down the line.

Friday 1 February 2013

Lester Bangs

*Argh this post is a bit gruesome. If you are squeamish, please don't read any further. It's also long. My only defence is that I write short disjointed sentences so it isn't as long as it looks at first.

One day last week I read Kenny's beautiful post over at Glow in the Woods, the answer.

It was about a song he had written for his own funeral.
It was the final line that snagged me, that this song remains the most cathartic.
A song for his own funeral.

***

Listening to the radio . . . . a familiar segue around here. . . .

In the morning, on my drive to work, I am frequently accompanied by a programme called 'The Life Scientific' which is a sequence of 30 minute interviews with leading scientists about their work.

The interview on this particular morning was one with an entomologist, Amoret Whitaker. She works, in her day job, at the Natural History Museum in London but is also, on occasion, called in by the police to crime scenes. In this capacity she collects insect evidence from decomposing bodies to help assist in ascertaining time of death.

As part of her research, she has monitored the decomposition of many bodies, animal and human (the latter only those who have chosen to donate their bodies to scientific research I hasten to add.)

The interviewer asked if she, herself, would choose to be buried or cremated.

She replied, "When you're actually there and you see it up close  . . . . it's a very natural thing. . . nature just doing the natural thing . . . it's very calming and very peaceful . . . it's not violent at all . . . I think it's a very good way to go."

I wished, fleetingly, that I had managed to have Georgina buried rather than cremated. Burial was my first instinct. Gone to earth. Returned to earth.

But I had her cremated instead. Due to various practical considerations.

I did think that perhaps I would like to be buried. It did sound restful.
When Amoret Whitaker described it.

Not violent at all.
No raging against the light, dying or otherwise, necessary.

***

Rest.

In my comment on Kenny's post, I mentioned one of the songs I associate with Georgina. With her death and the strange echoing presence it still has in my life, is Astral Weeks.

Whilst I was looking for a link to the lyrics, I found an extract from "Stranded" published in 1979, the year that I was born, written by Lester Bangs.

He wrote that Astral Weeks is an album about people who are 'stunned by life, completely overwhelmed, stalled in their skins, their ages and selves, paralysed by the enormity of what in one moment of vision they can comprehend.'

And I thought, ho hum. No wonder I like it so much.

Because I am flapping about like a stunned mullet.
Overwhelmed.
Transfixed by one moment of vision.
Of my tiny, dying child.
The strange, sensation that I nearly had the answer.
That I saw something that I was not supposed to be see.
The inner workings of something.
Fate? God? The void that occupies the space supposedly occupied by either of those two?

I haven't been around much lately. I feel that I no longer have anything useful to say. What possible use could the human equivalent of a fish that has recently been hit over the head be to anyone?

BONK!

Eh?
Hey, hey!
Why are you hitting ME over the head? What did I ever do to . . . . ?

BONK!

Stunned.
All is black.

You! You damn person bonking me over the head!
You took my baby away! Stop! Thief! Bring her . . . .

BONK!

Stunned.

Gasp, gasp, gasp.

Why?! Why are you still hitting me you b******!
It's been four years!

BONK!

Gasp, gasp. Expire.

Dead fish.

A stunned, dead fish with no words of wisdom.

I didn't find peace. Just the occasional moment of oblivion or forgetfulness.

And yet I am at peace.
Possibly as a result of being hit over the head once too often.
So I'm at peace.
Or possibly concussed.
Who knows?

***

It's all such a mishmash.

I want to hold my arms out to you and say, 'it will all be better, it won't hurt as much. Not always. These things you've seen will fade or become understandable, acceptable.'

And it will. It truly will. Joy doesn't stop here.
You might think it has.
With that strange, awful moment of being bonked over the head. Repeatedly.
When your baby dies and you give them up to fire or to the gentle ministrations of insects.

But perhaps you aren't going to ever be quite the same again.

But joy doesn't end here. Don't give up on being alive.
Don't give up on the strange exultation of being alive.

I'm just overwhelmed.
With . . . . an excess of everything.

I look at the shopping centre, in a dull surburban town, full of rain. And it is full of Georginas. Full of our stories. And all those people standing up and bumbling around, looking to buy something in Claire's Accessories or in Tesco, suddenly becoming the stuff of legend. Epically heroic. Wondrous. Because they've all got their Georginas, hanging around their necks, on their backs.

And yet  . . . .they are shopping.

I am shopping? Really?

And some people walk upright and casually.

Other hunch over, bent with their eyes to the floor.

I circle far above us all. I want to hug them all. I want to fly away.

Or at least I want to know which of those trudgers also have wings.

***

I was blind.

But now I see.

***

Thank you Georgina love. But please put the blinkers back over now.

Sometimes I need to un-see.

***

I stand outside work. In the rain.
And the names run down my hair like the water does.
Names who never drew a breath.
If I know you, your babies were there.
In the surburban downpour.
And I hope I didn't summon them there against your will, against their will.

Where are you now? My dears?
Everywhere. Everything. All the time.

Immortal, invisible.

In a puddle in a multi-storey car park outside a dull surburban town suffering in the economic downturn.
And in the stars reflected in those puddles.

Because only you could do that. Only our children could do that.
Inhabit those both at once. Puddles, stars, tarmac, reflecting lights.

Fire can't stop that. Insects can't stop that.
Out of the the way you weaklings.
Fire. Insects. Decay. Destruction. Mortality.
We see you.
Tweet, buzz, burn all you like.

We roar straight past you.
Move on over.

And you fall from our limbs like so much dust.

Fire. Insects. Decay. Destruction. Mortality.

Give it up because you cannot hope to stand against us.
You don't have an ice cube's chance in hell.

We will outlast you.
Because we are their mothers.
Their fathers.

Until we hold them in our arms.

We will endure.

Hi kids.

We miss you. We love you.

In another time. In another place.


Wednesday 16 January 2013

Endless iterations of n-1 where n = 2, 3, 4, 5 . . . .

It is dark.

Apart from the glare of a computer monitor, close to the window of the house opposite.  It's always on. That screen. Winking through the double glass.

Since 2008 when I stood on the floor below in a different building. Plunging bottles into a steriliser. When I wondered what was keeping you up at night. Neighbour of mine? It's been four years and I still don't know. Perhaps you were reading Glow in the Woods like I was? I was taunted and teased by that idea. Back in 2008.

But I've given up wondering about my neighbour's nocturnal computing activities.

Instead I worry about the texture of my jumper.
His face against my jumper.

Is it too itchy? Irritating? A brand called 'Ever Soft' from the Gap. But is it soft enough? I wonder.
The music plays. The anxious, over-analytical xylophone version of Today by the Smashing Pumpkins.
It hovers over us. A cloud of attentiveness. Shifting limbs and wrapping covers.

"Mummy," he murmurs. "Mummy."

"Reuben," I reply. "Reuben."

The circle is unbroken. The needs fulfilled.

The thinly stretched scalp over skull. The scant hair. We look at one another. In the dark. The light of the computer monitor reflects in his eyes.

"Mummy."

"Reuben."

We are here. Signalling to one another. Morse code like syllables. Flashing eyes. In the dark. The dark that will fall between us eventually. Age or death or teenage embarrassment. Any number of nasty busybodies will stop us.

Or perhaps those intervening forces are more kindly than I imagine. People aren't supposed to sit about here, attempting to reach one another, indefinitely. Certainly not across generations.

Then his small hands fall open in supplication and his body curls round, tucked inside my dressing gown. He won't be able to fit inside for much longer, his feet already stick out and have to be coaxed inside, after the belt has been shifted downward.

Sleep. Sleep.

We do. Unintentionally on my part.

And the tension in my muscles eases, just for a moment.

****

I want. I want. I want.

I want n children.

But I have n-1.

And when you always have (n-1) perhaps you always want one more go round? Another chance? A better break? To go back in search of that inverse child of yours that doesn't exist anywhere except in your own imagination and should-know-better-by now daydreams.

I am still so hurt by pregnancy and childbirth. And this burnt child seeks the fire.
Burn me again. Burn me again. Burn me down to ashes.

And I ignite. In a flurry of bank notes and a house that is too small and babies too tiny to live.
A husband who doesn't like me.
An uncreative mind who couldn't think of anything else, a stuttering career and lack of ambition.

Because I am always drawn back to those things left unfinished, the unresolved, the things left hanging in the air.

The things that accompany my eldest daughter.

***

This isn't a pregnancy announcement. Far from it.
I'm 33. I probably will not have any more children.
Too much stacked against me.
And it's far too greedy.
To ask for more.

Probably.

And that is the word that my eyes catch upon.
One more try.
One more try.

One more go around n-1.
But I know I'll still come to the same conclusion.

How to stop and rest? I'm not sure.