Tim Parks - Goodness

Rare syndrome of varying intensity involving multiple disabilities and/or deformities. Cases differ widely and little is know of causes. Affects only females, but may (or may not) be passed on by males. Possible manifestations: spasticity of lower limbs, malformation of major articulations, cerebral palsy (rare). May occur together with, or be mistaken for, Down’s syndrome.

The phone rings. My mother’s voice speaks breathily: ‘Something’s happened to Dad.’

She found the old man upstairs on the floor by his bed unable to speak or move.

‘Dead?’

‘No, he opens his mouth, it’s just he can’t speak.’

‘Stroke,’ I say. ‘You. .’

‘Oh, sorry, that must be the ambulance already, I. .’

I say to phone me just as soon as she’s got any concrete news or needs help. Then I put down the phone and eat. Going about all the routine domestic tasks that evening, washing dishes, wiping surfaces, I numbly wonder whether Grandfather will manage to tell the powers that be that I beat him, or whether they themselves will find signs of violence. I feel nervous, faintly horrified, but there’s a growing sense of grim satisfaction too. Surely now he will be forced into a home at last. I have liberated my mother. It is not a crime. On the contrary I have done something good.

A precedent perhaps.

What happens over the following months is that Shirley gives up entirely while I throw myself heart and soul into saving the situation, into finding, no matter how far I have to go, how much I have to spend, some cure that will reverse our little girl Hilary’s condition. My reasoning is that they can’t know for certain that her brain is in the same condition as Mavis’s. The medical books, when they mention it at all, say the syndrome is entirely unpredictable in terms of severity and areas affected. No one can really know how she will develop. She might have a severe physical handicap and a brilliant mind, for example. So perhaps, I think, there is still a chance for our daughter and for us. And if there is such a chance, however remote, it is my duty to go for it.

Shirley comes home after a month in hospital. She refuses to speak about Hilary’s condition. She avoids wheeling her out where she will be seen by neighbours. She looks after her carefully but clinically, never complaining how difficult it is to dress her with her stiff joints, never making even the most remotely relevant comments. She is efficient, tight-lipped, mechanical, beaten.

‘Please don’t tell me,’ she says quickly, when I begin about something I have read, some information gleaned. ‘Please, I don’t want to know, okay?’

I say how important it is for us to communicate, pull together.

She says: ‘When a tragedy occurs there’s no point in pretending it hasn’t.’ And she says I was right all along, we should never have had children, they’re too risky. Never never never. She could have found a job at another school, or in business, in the end she could have done it. We could have been happy. It is all her fault.

But I say no, she was right. And I tell her how much I want a healthy child now. It was just sheer bad luck.

‘Bit worrying,’ she remarks, ‘when we both start telling each other the other was right.’ She looks up at me from plucking a thread on her blouse and half smiles.

‘Everything will turn out okay,’ I say. ‘I was talking to a specialist who. .’

‘Please, George.’

Weeks pass. We don’t make love for the unspoken fear of somehow generating another Hilary. The geneticist has said a one in four chance. Add that to the, what, thousand to one chance of getting pregnant despite contraceptives and you’re talking about four thousand to one, the kind of odds you might never win at, but could perfectly well lose at. Lying in our bed sometimes, watching the evening shadows that stretch and flit, I will be urgently aware of our extraordinary isolation, from each other, from the rest of the world.

Still, I resist the temptation simply to work late at the office and absent myself from family life. When I am at InterAct I work hard, I plunge into work as into a warm healing bath, I seem to reach intensities of concentration, speed of operation, I never dreamt possible before, but I always make sure I’m home in good time. I think, we will come through even this, I will save little Hilary. I will. And I am terribly tender with the little girl, changing and feeding her myself since Shirley lost her milk almost immediately. Sometimes I’ll be up half the night, heating bottles in the microwave. I look into her small, slightly fish-like blue eyes and wait, hope for the first smile.

Many men, I’ve heard, simply refuse to look at a handicapped child.

Of the relatives, my mother and Shirley’s brother Charles are assiduous to the point of irritation. Mrs Harcourt on the other hand pays ever rarer visits during which she will talk eagerly about proportional representation and the advantages of using faster film, before making for the door with the near panic of someone leaving a sinking ship. Mr Harcourt occasionally phones offering advice about specialists suggested by his professional friends. He will look after the consultancy fees. Peggy brings Frederick over at weekends and offers to babysit Hilary so that we can go out together. Shirley invariably refuses. She doesn’t want to go out. She wouldn’t know what to do.

So that one evening I say, does she mind then, seeing as she has company, if I go out myself? On the Finchley Road I phone Susan Wyndham, my contact at Brown Boveri, a small girl, almost plain, but with a certain glint in her eye. My wife is away, would she like to go out for a drink? And in a Hungarian restaurant off the Edgware Road we talk very seriously and theoretically about relationships and faithfulness and fun and what life is for. Discrete loudspeakers are playing mazurkas. With make-up and washed hair, she looks better than I’m used to seeing her and has a knowingly wry smile as we wander around for a while under thin rain looking for a decent pub. When I kiss her below her Willesden flat, she comes back so fiercely I’m taken aback. But afterwards she cries and pushes her face into her pillow and says she has a fiancé who had to go to Australia for a year with his company and she’s been faithful to him for nearly ten months. Why, oh why did she let him down now?

When I get home it’s almost one. Charles and Peggy are arguing heatedly about feminism, which Charles is fiercely defending and Peggy fiercely attacking. Shirley has gone to bed with a couple of Mogadon. Hilary has obviously shat and they are ignoring the smell. I change her and re-make her bed. I sit on the loo and stare at the wall for perhaps fifteen minutes, then grit my teeth and go downstairs to propose Glenlivet all round.

Charles says: ‘Of course, it’s not too bad while she’s still a baby like any other. It’s when she grows up that things’ll really get heavy.’

Shirley has always been against an operation, or at least not for it. But the doctors tell us that if the child is ever to walk something must be done. And if nothing else there will be the aesthetic effect.

However, they need both our signatures.

My response, being first and foremost a doer is, okay, try it, go for it, cut. Shirley, who, for all her bubbliness and energy when she’s up, has a fundamentally passive streak to her, is not convinced.

‘What’s the use?’ she says.

‘What do you mean, what’s the use? We’ve got to try everything.’

‘But the girl is like that. I don’t see what’s to gain by chopping and changing her. It won’t work.’

I ask her how can we go on, how can we go on with our lives if we don’t believe the child can be made normal?