Jess has not travelled much since Anna’s birth. She has left the field. As a student, she had pictured herself eagerly wandering the wide world. But she has been constrained by circumstance, like many women through the ages, constrained largely to an indoor terrain. Her daughter must come first, and for Jess maternity has no prospect of an ending.

There was no suggestion, now, that Anna would be a normal child. She would be what she would be – a millstone, an everlasting burden, a pure gold baby, a precious cargo to carry all the slow way through life to its distant and as yet unimaginable bourne on the shores of the shining lake.

Jess decided that she would be better than good-enough. She would be the best of mothers. So she resolved, as she increased her speed and made her brisk, cold way home to a lunch of boiled egg and Marmite-and-butter toast, Anna’s healthy favourite. We didn’t know about cholesterol then. It hadn’t been invented.

Autism is now, in the twenty-first century, a hot topic. Down’s syndrome is not. You can’t make much of a career from studying Down’s syndrome. It doesn’t get you anywhere. It’s low key and unsensational.

It was easier to ignore the consideration of paternal genes then than it would be now. We did not then consider ourselves held in the genetic trap. We thought each infant was born pure and new and holy: a gold baby, a luminous lamb. We did not know that certain forms of breast cancer were programmed and almost ineluctable, and we would not have believed you if you had told us that in our lifetime young women would be subjecting themselves to preventative mastectomies. This would have seemed to us a horrifying misapplication of medical insight, but we would of course have been wrong. We had heard of Huntington’s chorea (‘chorea’ isn’t a word you can use now) and cystic fibrosis, but we thought of them as rare and deviant afflictions. Most genes, we thought, were normal. We did not believe in biological destiny. We thought we and our children were born free. You may pity us for our ignorance, or envy us for our faith.

As Jess and Susie walked along the towpath that October, and that November, and that December, and through the flow of a year to the next year and the next, the euphemism ‘care in the community’ hadn’t yet been coined. The Community Care Act didn’t come in until 1990. In the sixties and seventies, there were no beggars squatting in doorways on Oxford Street or nesting in pigeon-fouled sleeping bags under the motorways with hungry verminous dogs. The vulnerable were looked after/ swept away/ brushed aside/ immured in cold malevolent institutions/ allowed to lie in bed all day at Kingsley Hall. The Community Care Act was created as the community fragmented, possibly for ever.

She looked forward to a time with Anna during which she didn’t have to worry about entertaining Bob. They’d be fine on their own, she and Anna. They were a self-contained little duo. Jess was getting tired of trying to please two incompatible sets of interests, two incompatible temperaments. She didn’t know it, but she was.

Jess did not forget Steve, although she tried to, because she found herself unwillingly placing herself in loco parentis, a default position to which she was beginning to recognise she might always tend to revert. As Steve reverted to infancy, she reverted to maternity. This is what Anna’s birth and the responsibility of Anna had done to her.

You can’t kill yourself with natural gas, or that’s what we believed.

Minor talents or failing talents ask much of those who associate with them. They are parasitic. They suck, they cling, they sour, they devour, and they can kill their hosts. Disappointment is a deadly companion. We didn’t yet know how many of us would end up in its grip, because we were all still striving, and some of us thought we were thriving. Steve was our scapegoat, our loser, our sacrifice to ambition. We all thought we were more viable than Steve

Most women used to feel a polite or submissive need to placate and satisfy their husband’s sexual demands, at least when there was no good reason not to do so. The accusation of being a castrating woman still had some force, and maybe for all I know still has, but this element in Jess’s emotional make-up seems to have been missing. If she didn’t want to, she didn’t want to, and that was that. She felt no obligation.

He was sitting on the opposite pavement, on a bench, holding a large placard, with homemade letters that were easy to read from the top deck where I sat. They said MUM IS DEAD. He had a cap by him, for offerings. The words rent my heart. MUM IS DEAD. We are familiar with the concept that God is dead. We accepted it long, long ago. The message that MUM IS DEAD is more powerful.

Bladders are important, but we took them for granted then, when we were young.

Zain had particularly loathed the cucumber sandwiches. He had not realised, he said, that in England they were a cultural marker, a sanctified repast, a literary reference. They were disgusting. They were limp and wet. They were like slime in the mouth. Jess had listened to this diatribe with professional fascination. It had not occurred to her, even though she was an anthropologist, that anyone could take so strongly against a harmless cucumber sandwich.

When you are young, you do not think you will grow old. I remember my father saying that to me one morning, over breakfast, when I’d gone back home to Kent for a long weekend to help out with my mother, who’d just had a hip operation. They were wondering whether to sell the family home, to buy a bungalow. We call it downsizing now, but we didn’t then. We hadn’t yet coined that familiarising, patronising, dismissive, yet helpful term for decline and retrenchment, for the beginning of the flat, slow and then descending and accelerating march to death and the little, little room of the grave.

‘Nellie,’ he said, ‘you don’t know what it is to be old. I’ve only one piece of advice for you, Nellie. Don’t grow old.’ He was smiling gently, compassionately, as he spoke. I laughed, and ate my half-grapefruit. ‘I’ll try not to,’ I assured him. I was young, vigorous, immortal. I knew I and my children and my children’s children would never grow old, and we would never die.

As for me, I look in the mirror, and I remember my aunt saying staunchly, aged ninety, ‘I don’t like to look in the mirror any more, so I don’t.’

Anna, as we have seen, made no progress at all. She was becalmed. There was no story to her life, no plot. The concept of progress did not apply to Anna. Events happened, but they did not impinge upon her.

Our little children, what becomes of them? They set off so innocently on their long journey. It is hard to bear, it is hard to grow old and see the children age and suffer. It is hard to see them grow bald, and estranged, and some of them lonely.

Jess and I have never been able to play chess. I learnt the moves once, my father taught me long ago, but I couldn’t be bothered to learn to play properly. I didn’t have the brain or the will for that kind of activity. It’s a man’s game, an autistic game. Don’t say I said that.

As you know,’ said Lauren robustly, ‘in this country we have the right to be as mad as we like, provided we aren’t a risk to ourselves or others.’

My reaview of The Pure Gold Baby

Photo by Violetta Kaszubowska @vkphotospace.com