Goodness. Part 6

'Let me come and get you in the car.'

'No. I've got to get out of here now. Please, George, get the oxygen.'

She hangs up.

Mother is blowing her nose, sorting out her eyes.

'Shirley's bringing her home,' I say, rising as one does to the drama of the occasion. In fact, while things are dramatic, life's generally plain sailing. I grab the yellow pages.

And so begins the great epic: the tiny baby running a high temperature, suppositories, constant changing of sheets, of clothes, of nappies, of dressings on her strange and butchered legs, constant forcing of bottles between clamped gums, followed by vomiting, contortions. Her skin is clammy with fever. She cries a shrill nagging cry. She fights, though ever more weakly, whenever she is touched in any part of her body, eyes almost always screwed tight, hotly red in the now wan wax yellow of her face. In her fits she will have respiratory crises which require the oxygen mask. An ear infection generates a constant flow of pus.

Grabbing a snack with Shirley in the early hours, perhaps the second night, or the third, while Mother watches over the girl, I say: 'We should have left her in hospital. They have all the equipment there.'

The house breathes silently about us. A hundred and sixty grand's worth now and going up around 50 a day. The kitchen curtains haven't been drawn and the yellow overhead light is hard and cold on the marble black tomb slabs of the windowpanes. Shirley's expensive pans are piled high in the sink. I stab at crumbs.

'Perhaps they were right.'

Shirley doesn't answer at once. She moves purposefully in jeans and tee-shirt, scrambling eggs. She is living in a constant state of nervous tension. She doesn't have the ten-hour escape to the office and other people that I have. Her face is drawn, gleaming with excitement. But she seems much more present, more decided, more one particular facet of her character than in the listless weeks following the birth. She is resolved, as if she had decided once and for all what to do, who to be. With a quick firm gesture she pushes unwashed hair from her face.

'n.o.body,' she says, 'has the least reason for believing that Hilary will never think and speak and talk and laugh and sing. Why should we let her die?'

She is reasonable, sensible rather than aggressive, which makes it difficult to argue.

I say carefully: 'You didn't seem so concerned about her when she was born. I mean, a bit offhand and mechanical. Why the big change?'

She shrugs. She asks does she have to explain herself? She doesn't know. She might just as well ask why I have suddenly stopped hoping, since I was so hopeful and busy seeing specialists before. Arranging the operation. Wasn't I? And now I want her dead. That isn't fair, I say. We listen to the faint ticking of a wall clock. Then she says: 'I just want to see her smile again, you know. I rather fell in love with her when she smiled that day.'

Sitting down, she stares at me over the narrow table top. Our faces suddenly seem very close to each other and large. I notice her nose is too red. She is ageing.

I say: 'Think of the pain she's in. Going on and on and on. Day after day. That ear problem she has. Her legs. Life is nothing but pain for her. It's unbearable even to think of.'

'The thing about pain,' she says, 'is that when it's over, it's over. But not being a woman you wouldn't know anything about that.'

'Let's not argue, Shirl.'

She smiles, stands up, leans over the table and kisses me. 'You've been wonderful, all the staying up you've done. I would never have expected it of you.'

'Oh thanks a lot.'

'Your mother too. Fantastic. Mine hasn't even come to visit.'

'Mum's in her element,' I tell her. 'She probably wishes it was twins,' and we both laugh.

Day after day then, nursing this sick child in a fetid, claustrophobic, overheated, over-emotive atmosphere. Two weeks, three. All taking our turns, shift after shift. Even the Filipino girl, Lilly, who will burst into tears occasionally and say how helpful it has been to find people worse off than herself, people she can help, how grateful she is. Peggy comes often. And Charles amazingly, an hour or two here and there, mucking in. People never cease to surprise you. If he does care for us in some way, then he certainly fooled me. I wonder will he use the oxygen if and when the child has a crisis in his sole presence. The question floats across my mind as an intriguing curiosity. The little girl's life hangs by the most snappable of threads. For myself, in the drama of our trance-like weary nights, I have decided I must be good as the rest, I must do everything possible to see the little girl through. I'm determined still to believe, or at least not one hundred per cent exclude, that she does have a chance. And while that is on the cards, I will, I will hope.

What a relief though when I go to work. Or to Susan's. Four, five times now. She always serves something of a feast after we've made love eggs and bacon and beer and ice-cream. Traditional, solid fare. It's almost better than the s.e.x. Coming home on the tube, I tear an article about euthanasia out of the Standard and slip it between the pages of a sc.r.a.pbook I keep in my briefcase.

The Worst Betrayal of All It's a few days after Hilary comes through her fever, that Shirley breaks down. The little girl's improvement is sudden and dramatic. The temperature falls, her breathing becomes even, and in the s.p.a.ce of a few hours a bloom returns to her cheeks. We are euphoric. We open bottles of Oddbin's Verduzzo, we talk about the future, we jubilantly call the hospital to fix an appointment for the next check-up. Except that with this apparent return to health, we notice that the child isn't looking about her in the same way she did at two months, before the op. She seems unable to follow a finger, to see the teat of a bottle.

At the check-up, which a surprised consultant arranges almost at once, a paediatric optician is called and immediately confirms that Hilary is indeed not seeing. The eyes, he says, are perfectly okay in themselves, but not responding or focusing. Something in the brain. The consultant hopes, clearing his throat, fussing with a pen, that this will be a temporary 'symptom' due to post-operative trauma. 'You should feel very proud of yourselves,' he goes on quickly, 'I honestly didn't think the girl would survive.'

'Just that now she seems a great deal worse than before the operation. And her legs won't bend.'

This middle-aged man smiles. He is long-jawed, schoolmasterly. 'Actually, that remains to be seen.' He focuses deep-set eyes on me. 'I'm sorry, but this was not by any stretch of the imagination routine surgery, hence there were risks which we did warn you of. Certainly we don't take these decisions lightly. However, and be that as it may, we shall have to wait a good, what, at least six months more to know the real results of the operation one way or another.' He stops. 'Nor do I see any need to be too pessimistic. The child has survived after all, which shows remarkable resilience.'

Shirley says: 'She doesn't seem to be able to hold her head up straight, doctor. I mean, she should be able to do that at four months, shouldn't she?'

I haven't actually registered this myself before, but realise now that this is what makes the girl so odd. Even when you hold her up, her head will loll slackly to one side. And I have one of my sudden piercing revelations, visions, of what our life will be like from now on with this handicapped child. I see her at five years old, ten, her head lolling.

Shirley is nodding gravely as the consultant describes the special kind of chair we will have to buy in about six months' time to keep the spine and neck straight. Some kind of allowance, he is saying, is available to cover at least part of the cost.

Which is? Shirley is being very practical.

He doesn't know. About 400 perhaps.

We stand up to leave. Then no sooner have we got in the car than Shirley flips. She straps Hilary into her seat and bursts into tears. She howls: 'All those nights, all those nights of pain, and now she can't even see!'

I drive brilliantly fast. I'm getting to know the lights and lanes round behind the hospital. That splendid feeling of challenging the great city machine: filters, left-only lanes, bus lanes, bollards, no right turns, sequence-timed lights, brake and accelerate, brake and accelerate. I stay silent a long while.

'I can't stand it, I can't, I won't stand it.' She doesn't even fiddle with handkerchiefs, just weeps, shoulders shuddering.

Finally, caught on a long red, I say: 'Shirley, Shirley!'

'I wish I was dead,' she shrieks.

I drum my fingers on the wheel: 'We should have been angrier. We should have told him we'd sue.'

'G.o.d, do I wish I was dead!'

I storm up the Caledonian Road, jerking from pedal to pedal. The motley buildings race toward us, the wheeling sky, the low neon, tall blocks of flats, the afternoon sun occasionally spangling on blank gla.s.s, the rubbish outside cheap restaurants, the usual motley on the pavements.

Our child is blind.

Shirley is moaning now. I can think of no other word for it, a low animal cry, her face in her hands.

Overtaking on the inside lane, squeezing back into the flow before a parked car, it occurs to me that driving is not unlike a computer game. Some program that would project your score onto a corner of the windscreen perhaps?

I say maybe it really is only post-operative trauma. How can we know? In any event we must find some other consultant to contact who will tell us more. 'These guys never tell us anything.' Maybe we can find out if there's some big specialist in America or Switzerland or something. 'You can bet they'll be light years ahead of the NHS for this kind of thing.'

'I wish we'd never met,' she says.

'Come on, Shirley.'

'Sometimes I hate you for all this.'

I don't object. I often feel the same.

We drive on with an urgency that scatters other traffic like confetti. She doesn't comment on it as she usually does. One secretly hopes for an apocalyptic accident of course. She leans over her seat and caresses the child's thin hair. She is murmuring now. I stare at the road.

Has my mother been working on Shirley these weeks she's been staying with us? I haven't actually noticed anything, but I often think Mother manages to exude influence even without speaking. Her eyes, her posture, her tone. She will persuade you to see the world as she sees it. In any event, when we get back home, Shirley carries the baby with her into the house while I stick the car in the garage, taking my time over everything now, relaxing, calming down, turning keys and handles with the slow, almost voluptuous pleasure I have recently begun to find in doing all those little activities that keep you just outside the family sphere: taking a pee, a bath, a shave, carrying the rubbish out to the bin, changing a lightbulb in an empty bedroom. I move with meticulous painstaking slowness, the exact opposite of my driving, though the escapist intent is no doubt the same. When finally I walk into the living room, Shirley is in my mother's arms weeping.

She is making some kind of confession. It is all her fault she is saying in a low voice broken by sobs. All her fault. She's been a terrible wife, she forced me to go and have other women, had an affair herself for ages and ages.

'Shirley!'

Instinctively I try to wade in and stop this, but she clings tightly to my mother whose large face watches me over her shoulders.

'It must be a punishment. It must. It's too awful.'

'Shirley, shut up!'

I start to shout, to try to pull them apart. Hilary wakes, as she always does, screaming. Through the bedlam, my mother says quietly: 'George, why don't you just go out for a while and let her get this off her chest.'

I hate, no really hate the attempt, inherent in that everyday expression ('get this off her chest') and again in her tone of voice, her willed serenity and motherliness, to reduce the whole thing to a kind of understandable outburst which will soon be over.

'No. It's ridiculous. Shirley. Don't be crazy! Let's talk this over on our own.'

My mother, her face half in Shirley's mussed hair, mouthes the word: 'Please.' Her old eyes, tremulous in their papery net of wrinkles, glow and plead, insisting I am her son. And I go. As much simply to be out of it as anything else. I go to Child's Hill Park and smoke about a hundred cigarettes.

When I get back, they are in the baby's room, kneeling and praying by Hilary's cot. They don't see me at first and I spy on them a moment from the landing. They are knelt in a clutter of toys and baby clothes on the carpet. The curtains must be drawn, because the light is pinkish grey filtered through red. My mother, on her swollen knee, has both raw hands hooked over the top rail of the cot, her face pressed against her knuckles, shoulders hunched, back bowed. Shirley on the other hand is kneeling straight up in perfect finishing school posture, girlish, virginal, the smart dove-grey wool dress she put on for the consultant falling prettily over her curved back, her slim calves; the fine ankles still in their white summer sandals. Then Mother launches into another prayer: Oh dear Lord who so often in the past . . .'

In bed I ask: 'You really had an affair?'

'Yes.'

'Who with?'

'A teacher at school.'

'When you were so depressed?'

She laughs softly: 'No, before that. I was depressed when I lost him.' She adds: 'I'm sorry, George.'

I take this in. After a moment I tell her: 'I don't blame you for that. But this with my mother is the worst betrayal of all.'

And next morning when I get Mother alone for a second I ask her please to go. I don't care how much help she is being, she'll have to go.

It is a Sat.u.r.day and I spend the whole day cracking a computer game called Helicopter Attack. The sneaky thing is the way they keep altering the wind speed so that you drift off course into the flak. In the evening Peggy comes over with Charles and mentions almost in pa.s.sing that Buddhist Barry, her lover of two years standing, has left her. The marvellous thing, it occurs to me, about Peggy is how she never needs comforting.

Flow Chart Drama over, routine sets in; looking after this strange child who catches every possible infection, who is allergic to antibiotics, to food additives, who knows no difference between night and day; the progress of other children (Peggy's Frederick, Greg and Jill's Rachel, running, jumping, chattering, doing jigsaw puzzles) simply underlining this other baby's utter lack of it, can't roll over, can't hold anything, can't sit up; Shirley giving all her time, all her energy, the exhausting nights. At age one, eight months after the op, the little girl smiles again, she even chuckles.

'You see, she's happy.'

'Shirley, she's blind, she's immobile, she's utterly deprived.'

'But she doesn't know she is. In her spirit she's happy.'

I say: 'I smile a lot. At the office I even guffaw. I tell jokes. It doesn't mean I'm happy.'

'That's your problem,' she says. 'Or do you want me to kill you out of sympathy?'

She begins to find the most minimal signs of progress, an ability to clasp a hand around your finger, to move her head, just ever so slightly, when she's called. Sometimes. She doesn't attach disproportionate hopes to these developments. On the contrary, it's really a sign that she has accepted things. She is content with this much. The girl can clasp your finger. So there is something there. Some personality.

At nearly two the child learns to roll over. We can't leave her on the couch any more.

Stimulation! Yet another consultant expensively tells us what we've already read in books. And now I am encouraged to design 'computer games' for the child. Well, I'm willing to try. I start with a big board that straps onto the eating tray on her 500 chair. When she presses coloured k.n.o.bs an amplifier plays different tunes and bright colours shine on our TV screen placed right in front of her. Perhaps she can see, just a little. Perhaps. I wire up a system of pedals for her feet, I make the controls of the hand-operated board more complicated so she has to manipulate them, to the right, to the left. This strange child giggles, hearing our voices around her. She gets excited, heaving herself about. And it is gratifying. Shirley is impressed, grateful. I become enthusiastic. Hilary is pressing the pedals. She is, somehow, with wrist and elbow as much as fingers, moving the k.n.o.bs. On purpose or at random? Her face is blank apart from those sudden brilliant smiles. Which don't always seem to coincide with any visible stimulus, but does that matter? When I introduce a k.n.o.b she has to turn rather than push she can't do it. Immediately she loses interest. If it really was interest. She bellows. Flails limbs. What does she want? Give her food? Her bottle? No, she spits it out and screams. Hug her? She bellows even louder. What then? I think, this child will be in nappies, at five, at fifteen. At thirty. While Shirley tells our friends: see the progress she is making, she can push these k.n.o.bs, look, these pedals, she makes the tune play, the lights come on. I can see the pain in the visitor's eyes, the desire to change the subject, to head for the drinks cabinet. Even Peggy doesn't seem to want to hold the girl. She's heavy. With no real exercise she's getting fat. How loud will she bellow when she's twenty?

I am convinced I shall go mad. The sense I have of constant high tension in the jaws. The nightmares. And I now have a whole file full of euthanasia cuttings. I keep them locked in the bottom drawer of my desk. A woman in Carlisle has drugged to death a four-year-old boy terminally ill with bone cancer. The judge let her off with a suspended sentence. In Truro a man and wife are fighting because the wife wants their two-year-old comatose daughter taken off an iron lung and the husband doesn't. He's divorcing her over the matter and wants custody of the child. She's contesting it. She says she's the merciful one. In Dijon, France, a man butchers his new-born mongoloid with a pair of scissors.

I read these articles on the Northern Line. Never more than a couple of brief paragraphs, they nevertheless hold me spellbound the whole journey from Hammersmith to Hendon Central. In Rotherham a nine-year-old boy with severe muscular dystrophy claws his way out of his wheelchair to throw himself from the third floor flat of the council estate where he lives with his unmarried, unemployed mother and alcoholic grandfather. Or was he pushed? And they're actually bothering to check! Yes, full scale police enquiry. Time, tax money. Is this the public good? Medical evidence shows signs of struggle. Mother says yes but she was trying to hold him back. I miss my station.

Hilary, I think, could never be imagined to have climbed to a window.

On the other hand she can't simply be switched off.

And I could never kill her with a pair of scissors. I love her.

This happens. I am walking back to the car in the tube-station carpark when I see a h.o.a.rding. It says: MUSCULAR DYSTROPHY: We Know The Cause, Now Help Us Find The Cure. What it shows though is three stylised green Plasticine figures. They are children. The two at each side are standing and reaching a hand down to help the third between them who seems to have stumbled and is crouching low. Tripped by the disease. Can they pull him up? Can they rescue their little companion? Buzzing open the car lock with the remote control, I burst into tears. I cover my face. This hopeless, stupid, heart-rending image of human solidarity. I feel so vulnerable. There is a Giro number to send cheques to, but I don't write it down. The ill.u.s.tration has already convinced me that there is nothing to be done but turn away.

Shirley takes Hilary to church. She has converted though there have been no more dramatic scenes since the confession to my mother. Quietly and conventionally (I almost said sensibly), she goes to church, gets involved in creches, in organising the kind of charitable events I have avoided since I was fifteen. Occasionally 'church folk' drop round and make an inhuman effort, maybe twenty minutes, thirty, to give Hilary some attention. Occasionally I find Shirley in what can only be an att.i.tude of prayer, usually by the cot Hilary is now too big for (but she would fall out of a normal bed). So, after all our laughter years ago at Mother's expense, Shirley has become a Christian. Whatever that really means. But she doesn't want to talk about it. Nor do I. Just once she says, 'However obscure, there must be some reason for this, some plan, there has to be. I do believe there has to be a G.o.d behind it all.' Just once I say: 'You can't honestly believe we're guilty and this is the punishment. It doesn't work like that.' She says slowly: 'I know. You're right. It's just that sometimes I feel that's how it was. I make that connection.' It seems pointless trying to argue the absurdity of this out logically, since sometimes I feel the pull of this explanation myself.

Typical scene. Shirley comes running, says excitedly: 'Hilary called me Mummy today.' 'Great!' But I know that if the miracle ever happened it will never be repeated. The girl may giggle when you soap her in the bath, she may randomly press those k.n.o.bs I have provided her with and laugh at the electronic tunes that result, she may even be able to see just a little light and colour, but she certainly never calls her mummy, Mummy.

Dressed up she looks a plain ordinary little girl somebody has tripped up, floundering on her back. On a rare visit, Mrs Harcourt takes a photo of her against a background of Alexandra Palace flowerbeds.

And two hours physiotherapy every single day. It's a new American method. A trip to Philadelphia to gen up. We, or rather Shirley, bend her joints, roll her head around, knead her muscles. She screams throughout.

Will she ever be able to eat on her own? Even to bring a bottle to her lips? Who knows, but it has become Shirley's mission I sense. All the more conclusively and engrossingly, because it is a mission that can never be accomplished.

Is this the life she wanted? We wanted? Isn't it pathetic, creepy, giving so much help to a helpless case? Like my mother with Grandfather, with Mavis. Isn't it a way of giving up on that other, bigger life we should be living? Shirley is intelligent, attractive, valuable.

'Is this the life you wanted?' I ask.

'It's the life I've been given,' she says mysteriously.

'You sound like my mother now.'

'What's so bad about that? Your mum's okay.'

I don't say it, but I think, At least my mother's wounded can walk. For some reason I think of the Filipino girl.

The fact is that although Mother hardly ever comes since that day I told her to leave, Shirley spends anything up to an hour on the phone with her every other day. Talking about me no doubt, and about Hilary's 'progress'. Meanwhile, at the office, I draw up the following flow chart: What Heroes I find it pretty funny frankly that it took an atheist like me to think of faith-healing. Still, weird things do happen. It would be foolish to pretend otherwise.

'But you don't believe in it,' Shirley protests, laughing.

I remind her that we have tried all the consultants, we have flown to Houston and to Geneva. We have blown upwards of fifteen grand. It's simply a case of trying to cover every angle. 'That's my way.'

She gives me her narrow look. 'What exactly,' she asks, 'is Hilary preventing you from doing in life that you would otherwise like to do? Why keep hunting for a solution you know isn't there? Come on. Tell me one thing she's preventing you from doing. Nothing. You see. You can't think of anything.'