HILARY.

How Things Happen . . .

There is a taboo about handicapped children of course. I've had time and occasion to think about this. Either they are wept over by social-consciousness mongers who want to show the government's not spending enough, or they are simply not mentioned at all. Except perhaps in jokes of the worst taste. Their parents are generally perceived as angels who love them against all the odds, or devils who abuse and abandon them. Martyrdom and brutality make good copy. Another focus of occasional interest are the ones who overcome horrendous difficulties to paint Christmas cards with a brush gripped between the second and third toes. Maybe the TV'll show you about thirty seconds of their sad and twisted bodies (not that I'm saying they should show more). Then there are the tabloid fables of what genetic engineering may be able to do in the future, and of course the emotive question of whether the severely mentally handicapped girl should be sterilised regardless of consent, that's an interesting old chestnut. But the day to day business of working, nursing and cleaning, while all the time facing that enormous sense of loss, of no hope, of no way out . . . forget it. I certainly would if I could.

I was kissing Shirley's wet cheeks, she was squeezing my hand hard, sobbing for joy. The child was born. Our child. It was a girl. And so Hilary. We felt extraordinarily whole, fulfilled as a couple, we really did. I was truly happy. When the young doctor, examining the child on a white cloth, says in the kind of regional accent one has come to a.s.sociate with sit-com and soap opera: 'It's a right mess this one I'm afraid. Never seen anything like it.' Doctors, I've discovered, have quite a way with the handicapped.

How things happen and one is tricked into getting used to them! My mother, bringing flowers and baby clothes, says she's sure it's nothing they can't put right. They can do such amazing things these days and we must all pray. Deliberately, I sense, she keeps calling the child by her name, as if she were already a person, picking her up, kissing her, celebrating, as if everything were perfectly normal. Immediately I'm aware of an undercurrent of pious persuasion, to accept this child on any terms as one of the flock, which immediately, instinctively I resist. Then resist the resistance. She is my child. So that I too say, 'Darling little Hilary,' while my mother kisses and fondles her.

But Shirley is listless. She keeps her baby completely swaddled and leaves it to the nurses to change her. She doesn't seem to want to touch or look at her. She doesn't want to talk about the problem, nor to hear all the rumours of syndromes, cures and prospects that I am rapidly gleaning. I sense that in her silence she is simply willing for it not to be true. She is waiting to wake up into a different reality. Breastfeeding, she weeps quietly, smoothing the child's thin damp hair. The little face is strange, and strangely endearing.

Mrs Harcourt arrives at last. She bustles brightly but keeps her camera in her case. She doesn't ask to see the girl's body. Mr Harcourt comes, phoning first to make sure he won't find Mrs Harcourt. He is grave and distant. There have been, he says, no cases, to his knowledge, of handicap in the Harcourt family. In the corridor he tells me confidentially that any way he can help financially not to hesitate to ask, and he claps me on a shoulder and says if anybody is equipped to deal with a problem like this it is me. I am so straightforward and sensible. I have my head so firmly on my shoulders.

Shirley's brother Charles surprises us with a first visit in ages and says he'll check up what benefits the government has left intact and we'd better grab them before they disappear. Shirley flares up and tells him to get lost. I feel this is a positive development, though when she goes to the bathroom I tell him by all means to do all the checking up he likes. We'd be grateful. 'The whole game,' he says, 'with the Welfare State, or what's left of it, is knowing what's due to you.' I remember the waiting room of the clinic where we attended our pre-natal course and above plastic pigeon holes, the sign: KNOW YOUR BENEFITS. These brief imperatives. Somehow it reminds me of my mother saying: 'Couunt your blessings.'

They are doing tests, so Shirley has to stay in hospital. They have moved her and the child to Great Ormond Street. They take X-rays and do scans. They are trying to decide, they say, whether maybe an operation wouldn't put it right. But they have never seen a child with its feet the wrong way round before. Also the thighs are disjointed.

I tell Shirley I suspect we are being drip-fed the bad news at the speed they imagine we can handle it. Whereas I want to know everything now. She shrugs her shoulders. She says she has enough to cope with without my paranoia.

I take a few days off work to think. Already I am aware that I must decide on some strategy, some plan, not just let events take over, especially with Shirley withdrawing into herself. But to make plans I need information. I get on the phone and bother the specialists, the doctors, the ward sister. For G.o.d's sake, it's been ten days and still no sign of a diagnosis! Coming back from visiting, I stop at Dillons and spend half an hour picking up two hundred quid's worth of medical books. When I come out into heavy rain they have put the old yellow boot on the car. One thing you soon discover about personal catastrophes is that they don't excuse you from any of the other rules.

Shirley whispers: 'At least we're close to each other, Georgie. At least we're close.' I storm out of the room to demand some information from somebody.

The doctors stall me. They say our child is perfectly healthy, eating well and moving her bowels, and there is no hurry. Later I wonder if this isn't all part of a strategy. By not telling me anything they offer me the role of relief, of he who has to busy himself bothering other people and their secretaries. They slot your shock into their little routines. They have a way of getting you through. Which you hate and cling to.

Peggy comes. She is leaving the hospital as I arrive and we have a coffee together in the cafeteria. She keeps waggling her big knees under the table so that our coffee slops. I ask if she is cold, and I ask: 'So what does Buddhism have to say about the handicapped? Are they reincarnated dinosaurs?'

She says: 'You know there's nothing I can say, George.'

'Mother's praying,' I say, 'so that's one angle covered.'

She says: 'So am I as a matter of fact. Aren't you?'

I say I thought the Oriental brigade didn't go in for that direct request kind of prayer. I thought it was all meditation and inward illumination.

She says: 'I may not do it very often but I've always prayed just how I like, thank you very much.'

She is wearing a loose lilac jump suit, an old fashioned blue spotted foulard tied under her plump square chin. She has let her hair grow a bit and it's chunky and messy. She looks slightly overweight, jolly, attractive, a very normal London mother. I think: her career has always been just being herself, rather than doing anything, achieving anything. She has no direction, no thrust. Warming her hands round her coffee cup, she tries to look into my eyes and smiles. I look at my Jaffa Cake. I say: 'I always knew you were the lucky one, Peg. Fancy being able to pray.'

'You couldn't lend me fifty quid?' she asks.

Driving home that afternoon I stop at a Tempo discount warehouse and picked up the best videorecorder they have, plus half a dozen films to watch. I dream that I have lost my leg. It has been torn from my thigh. And I look in the fridge, in the airing cupboard, under the bed.

What is Life Expectancy?

Finally there is the interview with the geneticist. He is portly, dark-suited. He hums and ha's and smiles. He has the manner of someone who has accepted that sensitivity is a necessary accessory to his profession but has never been able to master it. He describes the baby's condition as defined in the reports of the various paediatric specialists: the physical deformities, notably of the legs and the major joints, an unusual brain scan.

Which adds up to what, I ask. What is it? And what are they going to do about it? Shirley in blue dressing gown with tiny pink flowers is silent with the sleeping child in her arms. Snuffling in its sleep it might be any child.

'Slowly does it, chaps. One thing at a time.' He has the consultant's avuncular smile, calmly twiddling with a propelling pencil behind an unnecessarily large leather-topped desk. He draws a breath, knits his brow: 'Now what I want to put to you is this: can either of you recall any similar problem in your family histories? Anything at all. Think carefully now. Some aunt, uncle, great grandparents, anything.'

Perhaps it is his curious manner of addressing us as if we were five-year-olds that makes me fail to see the obvious. Behind him, across the courtyard, I watch a tiny oriental girl wiping condensation from a window with the sleeve of her green pyjamas. Shirley shakes her head. A cousin of her mother's had a child with problems, but that was due to a trauma at birth.

The consultant nods with pantomime gravity. I jingle change in my pocket.

'Well, have we got any brothers and sisters?' He raises white eyebrows. 'And have they got children, yes? No problems with miscarriages, for example? That's often an indication that . . .'

'Mavis!'

Yes, Mavis. In one split second, one click of the interminable and generally uneventful ratchet of time, my whole life, childhood and youth, career and marriage, apparently so varied, changing, picaresque, so much my own to do what I want with, succeed or fail, all collapses, concertinas, flattens, into my aunt's flat and mooning face. And is no longer mine.

Aunt Mavis. Hilary. Past. Future.

Perhaps fifteen minutes later, leaving his office with its big desk, its framed photos of smiling but obviously wrong children (in bad taste surely), Shirley says: 'I think that's the first nice bloke we've spoken to. At least he told us something.'

But I'm moving in a trance. Like some insect who discovers colour and flight is just a dream. He is still a coc.o.o.n-trapped grub. How can I live with a repeat of Mavis? Plus physical deformities into the bargain. Worse than Mavis!

'Well?' When we get back to the ward Mrs Harcourt has arrived. Despite the powerful central heating she hasn't taken off an elegant cashmere coat.

Charles is with her and comes out with me, asking for a lift to Shepherd's Bush. A caucus meeting. What is a caucus meeting exactly? Taking him gives me an excuse for going straight on to Park Royal to tell Mother. Tell Mother it is her fault.

Tall, lean, gla.s.sy-eyed, unshaven, old leather jacket, narrow blue jeans, Charles begins talking about the ins and outs of some Labour Council committee he is involved in. I'm not paying attention and anyway he must surely have appreciated by now what I think of his politics. Eventually I cut in to say, 'But what on earth do I care about rights for black unmarried mothers? Don't they have the same rights everybody else does?'

His tic is to rub thumb and forefinger along either side of his off-white teeth, an intellectual, concentrated look on his face. He says he's been trying to distract me. And begins to roll a cigarette. It must be a difficult moment for me.

I tell him not to bother. I don't want to be distracted. On the contrary. My particular style is to look at problems and deal with them.

Pushing in the lighter, trying to be clever, he says okay then I can try some lateral thinking, I can look at black unmarried mothers as a category similar to my own, another minority who need defending.

'I beg your pardon?'

I am a member of a minority now, he says, with a handicapped child. The only way to progress is through solidarity with other minorities.

I'm quite harsh. I tell him not to talk like an a.r.s.ehole, it isn't as though the black unmarried mothers are spending their days worrying themselves sick about my plight, is it? Nor can they possibly help me. Or I them. Each to his own. Anyway, it's their own fault if they have kids, with the State positively hurling contraceptives at them. Whereas what's happened to us was pure bad luck.

He seems to relish my rudeness: 'How you get into the hole you're in is irrelevant. It's how you get out that needs attention. You have to pull together.'

He has a bony, slightly freckled, very intense face, Charles. When he speaks, it is always with the a.s.sumption that he has thought more, and more deeply, about the subject than you have. I suck my teeth and decide to let the matter drop.

But as we are nosing our way out onto Southampton Row, he remarks: 'Anyway, Shirley's going to see what it's like on the other side now, I'm afraid.'

When asked what he means, he explains, as he did in a pub almost two years ago, that Shirley has always had an easy life, never really got away from home to see what things are like for the underprivileged. She was always the favourite child.

I've got chewing gum or something stuck to my shoe which is bothering me with the accelerator. And of course I'm thinking how I'm going to explode with Mother.

'She's never really wanted to look beyond her middle-cla.s.s horizons at the way people are suffering out there. It was the same when we were kids. She was always so complacent. Whereas the real truth about the world is suffering.'

'She gives a lot of money to charity,' I throw in from a spirit of contradiction, trying to rub whatever it is off on the rubber floormat now we are at a light.

'Not too tough a proposition, when you take eighty thousand off Dad to buy a house.'

'She could perfectly well not give it.'

'On the contrary, charity of that kind is a luxury. Makes you feel better. In any case, private charities only confuse the issue. The responsibility is the government's.'

As so often, it's not enough in life to have things happen to you. You have to hear people's opinions as well. I breathe deeply. I say: 'I'm perfectly willing to accept responsibility for my own problems. I don't see how the government can be held responsible for my having a handicapped child.'

'You won't be saying that,' he remarks, 'when you see how much it costs.'

I turn round to him in almost disbelief. He is calmly inspecting his nails, my A-Z on his lap, frizzled cigarette between thumb and index finger. He doesn't seem to appreciate how incredibly unpleasant he is being. Nor, for that matter has he made any comment on the pleasure of riding in a new Audi 80. So I put it to him point blank: given that he's hardly bothered to contact us over the last two or three years, why the h.e.l.l is he coming and visiting almost every day now?

He says unperturbed: 'Because you need help. I want to help. I mean that's what I'm doing with the Council and so on. What's life expectancy by the way?'

'You what?'

'Life expectancy. How long's the girl supposed to live?'

This question wasn't actually mooted with the geneticist (why not?), but instinctively, from Mavis's example, I know to say: 'Normal.'

After a brief pause for an underpa.s.s, he says: 'Too bad.' And he says: 'No chance of a little overdose or something. You could speak to the doctors. Sometimes they do that for you in the hospital.'

Despite the wave of anger that rises boiling inside this is my child after all I nevertheless have to struggle to suppress the first dim inkling that Charles is right.

'Better for absolutely everybody,' he is saying. My grip tightens on the steering wheel.

A Precedent By the time I drop off Charles and pull up in Gorst Road I'm thoroughly keyed up. But Mother is out at her Asian women's conversation group. For some reason this annoys me intensely. She should be around at a moment like this. Not out showing solidarity to another minority group.

So I set about Grandfather. I set about him at once. I don't think at all. He's sitting in front of the television, as he might have been twenty years ago, sucking liquorice, poking about in his pipe, his belt unbuckled, his waistcoat, his hairy porish face. Walking in, I'm swept by a feeling of staleness and frustration. This is the mollusc sh.e.l.l I never really left somehow.

With no preamble I put it right to him: 'Didn't you ever ask yourself what was wrong with Mavis?'

I cross over and snap off the television. 'Didn't you?'

'Mavis?'

'Didn't you ever wonder why she was so dumb?'

I shout. I suppose really I'm still reeling from the blow, it still hasn't come home to me. And in a way I'm enjoying this reeling, this disorientation, knowing that it amounts to little more than a grace period before I'll be obliged to get on with things and make decisions.

Perfectly lucid, he says: 'What on earth are you on about Mavis for? Do we have to pay something?'

'Mavis had a syndrome!' I scream.

It's infuriating, but the fact that you have to shout at him anyway because of his deafness, neutralises any effect volume would have on a normal person. It's like beating fists on a wall.

'You what?' He squints.

'I said a syndrome. A genetic f.u.c.king illness. And you should have found out.'

The room is staler than ever. The old man has cakecrumbs all over his lap. I think: this should have been over years ago, years and years ago, the stale farce of this p.i.s.sy old man in this never-to-be-refurnished room. My mother has kept it going beyond all reason, because of her selflessness, her refusal to start a new, fresh, cheerful life. Dimly I sense that this is what is to blame for Hilary. This decaying, stinking existence is touching mine, tainting mine, dragging me down. Or that's how it feels. As if Mother were keeping those bad genes alive on purpose, because for Mother life, however awful, is everything.

He says in a growl: 'Our Mavis was all right till she took up with that Mormon fellah. She brought home a decent wage. Anyway, how's Peggy? Never bothers to visit, the little 'I said, Mavis had a syndrome and now my kid's got the same thing only a million times worse. Do you understand or don't you?'

His wrinkled, limp-balloon face stares. His Adam's apple shifts. Then, grinning foolishly, pushing his tongue about in slack cheeks, he tells me: 'Stick the kettle on, will you? I could do with a cuppa.'

Almost raving now, and at the same time perfectly conscious of the mad futility of what I am about, I begin to tell him what a completely useless, useless old sod he is. He had a deficient child and never bothered to find out why, never worried that the same thing might happen to his children, his grandchildren. For thirty years he sat around doing absolutely b.u.g.g.e.r all but eat and drink and smoke and wear my Mother to a rag. And now the last straw is that, having never been warned, without the faintest inkling, I've gone and had a child like Mavis, but worse than Mavis, I'm going to be dragged back into the same ugliness I fought so hard to get myself out of, just because I share the same stinking gene pool he gave me and n.o.body ever bothered to inform me about. Well at least he might have the decency now to lie down and f.u.c.king-well die and let those who know how to live get on with it without the burden of a filthy old albatross like him round their necks.

My blood is pumping. I have never shouted so loud.

'You're nuts.' He heaves himself to slippered feet and tries to push past me. 'You're loony. Get yourself some pills.'

I push him back. He sits heavily.

'I'll kill you if you don't listen.'

Even if he can't really understand, at least he is fully aware now. At least he can see I hate him. His scabby old face begins to register a creeping alarm, veiny eyes squinting through gathering cataracts.

'Can't you see you've ruined my whole life? Ruined it.'

But words aren't enough. I just can't seem to make them mean anything of what I'm feeling. I stand and stare at him. And with that lucidity that lies like deep water beneath the foaming surface of my rage, it comes to me that this has always been the source of my frustration when I argue. Words just aren't adequate. It isn't about words. None of it.

So I hit him. Instinctively. I take a great swipe and let the fiat of my hand slap solid into his cheek. One is so unused to violence. He ducks his head down, yelling. I slap again and again. I kick his shin hard. In a sudden desperate movement, he jerks himself up and comes at me, arms flailing like an angry child, uncoordinated and helpless, cartoon-like. He lashes. I grab him by the shoulders and, throwing my whole weight against him, heave him bodily back. He collapses into his chair again, panting. I raise my hand to slap and he weakly pulls up an arm to defend himself. I brush the arm away and slap hard. We stare at each other, his old unhealthy face quivering with fear and incomprehension. G.o.d knows what I'm looking like.

Enunciating fiercely, I tell him, 'Now if you don't agree to go into a home, old man, if you don't just leave my mother be, then I'm going to come here every week and beat h.e.l.l out of you, okay. I'm going to beat you to a pulp. Now get upstairs and wash your face and stay out of my sight.'

Muttering under his breath, but definitely defeated now, he struggles to his feet and limps out into the pa.s.sage and off upstairs.

Left alone, I find myself trembling and truly truly appalled. Resting against the mantelpiece, I pick up a dusty Hummel of a small boy and two yellow birds sitting together on a country fence, their mouths wide open in song. How my mother loves these quaint images of innocence and happiness. An ice-cream van tinkles in some suburban distance, exactly as twenty years ago. And I draw breath. I try to steady myself. I feel deeply justified in going for the old man, yet can't escape the terrible ugliness of what I've done. Have I ever hit anybody before? Never. What am I sinking to? Yet the paradoxical pattern of this experience justification followed by ugliness is all too familiar (didn't I feel much the same after cheating on my wife: justified, ugly).

When Mother comes back I burst into tears in her presence for the first time since childhood.

'We were so so happy,' I weep. 'We'd really got so close together. Why did it have to happen? Why?'

Mother hugs me and repeats over and over: 'Bless you, my dear heart, bless you, bless you, bless you, my dear heart.'

Later, driving home, I reflect that of course I only let rip with Grandfather so as not to have to do so with Mother. It was an easy way out. For in many ways it is more her fault than his. A generation on, it was she should have known what to do, her I should have been shouting at. Yet I know I never will.

I get home, transfer a Heinz curry and rice from freezer to microwave, and while that's cooking look up Christensen's syndrome in the medical book I bought. Of one thousand eight hundred expensive pages, my baby girl's condition merits only six lines: 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 pa.s.sed 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.'