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 knobs 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 knobs. 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 knob 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 knobs, 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 hoarding. 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 illustration 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 attitude 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 God 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 knobs 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.