This is day 33 of my youngest child being in hospital.
On day 21 the consultant took us into a side room and said, "Tell me about Celyn. What does she like doing? What are her days like?"
This is code for 'how hard should we try to save her?'. It's a quality of life question.
Celyn is severely disabled. She was born that way. Starved of oxygen in the womb. Fucked over before she drew her first breath. Almost everything taken from her before she even knew what she didn't have.
People say, "if I'm ever like that, just kill me."
I get that. I've been that.
But Celyn loves her life. She laughs a lot. She loves gossip. She loves going out. She adores company.
And when the consultant - a kind giant of man - said that if she went to the Intensive Care Unit - her best chance - there was a 97-98% chance that her time would be measured in days, one, two, maybe three ... but that staying on the ward would offer more peace, more privacy, away from the bright lights and intrusive treatments, at the price of that 2-3% chance of survival ... we said she needed to take that chance, however small. Not at any cost. But at the cost of that peace and quiet, yes.
My composure, such as it was, held until the doctor left the room. My jaw, which would ache for the next 24 hours from those minutes spent clenched against emotion, relaxed and ... I broke. At least as far as my conditioning allowed. I am the cliched WASP without the P. I am the brittle that I ascribed to Jorg Ancrath - I will break before I bend.
The carer assigned to Celyn that night - a lady from Nigeria who has helped look after her for two years - was far more honest in her reaction when she heard the verdict not long afterwards, falling to the ground as if struck by a bullet.
It's not a point of pride that I did not. It's a point of shame.
Against expectation, Celyn's kidneys recovered in the ICU and the sepsis that had threatened to overwhelm her subsided. Those nights I spent sleeping beside her bed in a W-shaped chair were, to coin a phrase, the long dark nights of the soul. It's a phrase that romanticises and simplifies a far more complex, messy, uneven reality. Grief is a thing that comes in waves. High emotion can't be sustained. Guilt and duty and love overlap in dirty little circles.
Poor Celyn, innocent and blameless, never given the chance to be anything but wonderful, is still in hospital, still fighting. We're hoping to take her home soon, but stumbling blocks keep being strewn into that path. I'm hoping she won't spend her 22nd birthday in hospital, and she has just over a week in which to avoid that.
In the long days spent haunting this vast hospital - the size of two cathedrals end to end, I've wrestled with the experience in what might be called 'a writer's way' but which is just the way I've wrestled with this business of being alive for the past sixty years.
Words, I've said before, are blunt weapons. The writer's skill, such as it is, it to somehow achieve a finer resolution than that commonly achieved with such a broad brush. It's the height of ego to focus on my own experience whilst my child lies in a hospital bed. But writing is an act of ego.
A parent is not supposed to outlive their child. Few of us will ever suffer that fate. It is a terrible thing but it is not a simple thing. It is not something that an honest accounting would render in romantic terms, though it is more digestible in such a form. Reality though is a dirty, complex thing. We call it ugly crying because it's not a beautiful person with their forearm pressed to their perfect face. It's snot and gasping and broken cries and the indignities of biology. It's the fragility of mental health. It's post traumatic stress and crippling anxiety.
The true art of writing is to take the blunt instruments provided by the dictionary and to somehow communicate more subtle truths that they were never fashioned to deliver. It's to share truths that lie beyond our collective experience. And such things cannot be delivered directly, like a weather report. Single sentences, whole paragraphs, just can't contain them. They need to be approached sideways, to be slipped between the lines, to grow from seeds planted on page one, watered in chapter two, blossoming on page 200 after illumination from an unexpected angle.
I can't tell you where I've been. There's not world enough and time. Not here. Perhaps never, given my own meager talents. But I know enough to know that at its heart this is what writing is for.
I may never have the talent to express what it is like to be told that your child is going to die. And I certainly don't have the desire to wound you with that knowledge. But there is, within this experience, something of value, some strength that I hope you never need, but that you may well. And if writing is for anything other than to devour a handful of hours with distractions, then it is to communicate these things that regular dialogue is too narrow to admit.
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