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


“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.
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.



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.
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?


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


All is black.

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



Gasp, gasp, gasp.

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


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.