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.