The Jennifer Norton Unit is on an old site that’s now largely disused, I drive round the perimeter road. There are separate
blocks like big houses with patches of grass and empty car parks between them. Most of the blocks look Victorian; they are
built of brick, now blackened, with cupolas and gables. When they were built, I guess the style of them looked Italianate,
elegant — but now it inevitably suggests an asylum. Nothing much seems to happen here. I pass one or two outpatient clinics
and signs to an eye unit and to adult psychology. The chapel is boarded up. Some of the windows I pass have children’s tissue-paper
pictures still sellotaped to the glass, but the windows open onto empty rooms.
I follow the signs to the Jennifer Norton, down a drive between ragged verges. It’s another Victorian building, drab in spite
of the colored curtains at the upstairs windows, with peeling window frames and neglected ivies in wan pots by the door. To
the side there is a play area, enclosed within wire-mesh fencing, with a park bench and some footballs and grass that hasn’t
been mowed.
The door is locked. I ring the bell. The door is opened by a young woman with a label on her lapel that says Receptionist.
She has very long purple fingernails with a pattern on.
I say I’ve come for Daisy. I have to sign in, and to give my car registration number. She indicates the chairs in the waiting
area. I don’t sit down.
“I want to see her now,” I say. “There’s been a case conference. I can take her home.”
“I’ll get someone,” she says a little wearily.
A charge nurse comes. He says he is Terence. He’s fiftyish, in a cardigan, smelling of oversweet aftershave.
“I’m Mrs. Lydgate. I’ve come for Daisy.”
“Ah. Yes,” he says. “We heard the conference decision.” He looks me up and down; he doesn’t smile.
“I’ve come to take her home. I want to see her now.”
“I understand,” he says. “I’ll just get everything organized.”
I sit on one of the chairs. Silence falls over me like a blanket. I think how I hate all waiting rooms, their rubber plants,
worn toys, goldfish, out-of-date copies of
Prima
, their thick, muffling heat, the fear I feel in them. Through the open door beside the reception desk, I can see a corridor,
stairs to the dormitories, a plasterboard partition, a fire door. The silence is briefly broken by a sudden screaming shout
from down the corridor, a high girl’s voice, a fusillade of swearing, “You fucking bitch, you fucking —” abruptly cut off
as somebody shuts a door. The receptionist studies her fingernails intently. Silence falls again.
Panic grows in me, a fierce, unreasoning panic that Daisy has disappeared. That she is lost or has run away, that they can’t
find her. I see her on that afternoon in the New Forest when she was two or three, running and running, my fear that she would
be taken from me, that she might vanish in the brightness of the light.
I can’t sit still. I go to the receptionist.
“Why is it taking so long?”
She looks at me pityingly.
“We do have a discharge procedure, you know,” she says. “We have to go through the proper procedures. We can’t cut the corners
just because someone’s in a hurry.”
I sit down again. I flick through a magazine, seeing nothing. Waiting there unprotesting is one of the hardest things that
I have done.
There are footsteps. I turn. Daisy is there with the charge nurse in the cardigan.
I put out my arms, but it’s not as I expected. She comes toward me, but her face is set. I put my arms around her; she turns
her head away from me. I see the charge nurse watching this, as though he is noting it down.
I take her bag. “Have you got everything, sweetheart?” It’s just a meaningless question to get us out of here.
She nods.
“OK, young lady,” says the charge nurse to Daisy. He ruffles her hair. “Well, let’s just hope we’re doing the right thing
for you.” She doesn’t say anything. “Bye then, Daisy. See you again, maybe.”
I take her hand and we go.
We don’t speak on the way back to the car. I can tell how tired she is; her hand is limp and cold.
As we drive out between the unkempt verges, I look in the mirror. She’s staring unseeing out of the window; her face is white,
stiff.
“Sweetheart, I’m so happy to have you back.”
She makes a little noise in her throat.
“I’ve missed you so terribly,” I tell her.
I watch her in the mirror. She still has that stiff look, but she’s turned toward me. Her eyes are fixed on my eyes in the
mirror.
“Daisy, talk to me. I know you’re cross.…”
Her eyes blaze at me. “Why did you let me go there, Mum?” Her face is fierce with anger. “You shouldn’t have let me go there.
It was horrible.” The words tumbling out now. “I didn’t sleep at all; there was this girl who kept shouting and shouting,
she wouldn’t shut up.
And
they made me eat cornflakes; I felt so sick. You shouldn’t have let them take me. You should have stopped them.”
It hurts.
I brake the car, there in the road, turn round to face her. I reach out my hands to her.
She resists, but only for a moment. She wrenches off her seat belt. She starts to cry and falls into my arms.
I
T’S HOT IN THE HOSPITAL
, far too hot for sleep. My bed is by the window; I push the curtain aside and open the window a little, trying to be quiet,
though Daisy, under her sheet with its pattern of red giraffes, shows little sign of waking. Her arm is flung out over the
top of the sheet. You can see the cannula in her wrist, through which some of her medicine is given. It was put in by a cheerful
male nurse called Jason, who wore a Garfield T-shirt under his white coat and kept up an easy flow of talk right through the
procedure. “Look, it’s a little man; this is his bed,” he said, tucking the cotton wool under the tap on the cannula. It was
suited, really, to a much younger child, but it distracted her, it did what was needed.
Our room looks over an inner courtyard of the hospital, which is full of the flues and pipes of the heating and air-conditioning
system. As I push the window open, the sound of it roars at me, I think the noise will wake her, but she doesn’t stir. In
the dim light from the corridor that comes through the curtained window in our door, you can make out the shapes of things
in this little room, though the color is taken from everything; it’s shades of brown, like an old photograph. The ward is
divided into these rooms, each with a high metal bed for the child and a fold-out bed for the parent. On one side of us there’s
an Afghani woman and her toddler, on the other an older man with a pallid teenage son. There’s a television in our room, and
labeled bins for different kinds of rubbish, and a basin with pink Hibiscrub, which has a wholesome smell and dries your skin.
Down the corridor there is a kitchen, with snacks for parents and some of the foods that children can have before a colonoscopy
— jelly, juice, ice lollies. When we came here, the day before yesterday, Jason told me apologetically that they seemed to
be clean out of lollies. You could get them, he said, from a newsagent’s down the street. This surprised me, somehow, that
the outside world was so near you could bring a lolly back without it melting. This place feels cloistered — apart: as though
its walls are thick as the walls of castles, as though you’d have to cross a moat, a drawbridge, to come here.
Daisy turns in her bed, but she doesn’t open her eyes. She’s still sedated by the drug she took for the investigation yesterday:
It’s meant to tranquilize you and help you forget what happened. I was worried they wouldn’t be able to get it into her, but
they’re good at helping her with medicine here, They put the spoon at the back of her tongue and talk her through it with
such patience. It takes an age, but some of it stays down.
They let me go with her to the endoscopy suite. There were six of them in their blue surgical suits — several doctors; and
Annie, the nurse manager; and the consultant, a tall, quiet man with a shock of wild white hair. They sprayed Daisy’s throat
with an anesthetic spray. The endoscopy tube had a fiber-optic torch at the end, many colored and glittery. I was told to
sit by the wall to start with. You can imagine that parents might find it too upsetting to watch the tube go down. I carefully
didn’t look at Daisy, just watched the television screen, the film of her digestive tract. It was the strangest thing, this
journey through the body of my child. When they’d finished the endoscopy, the consultant said that was great, her stomach
and esophagus were completely normal, and did I want to sit closer and hold her hand for the second part, the colonoscopy.
I moved my chair and I sat by Daisy’s bed and stroked her hair. Daisy moaned and protested, but I couldn’t make out the words.
Annie soothed her; the doctors talked together. “I can’t get into there.” “No. Well, you’re going backwards now.…”
Afterward, Annie came back with us and settled Daisy in bed. Daisy scarcely stirred.
“We did so well today,” said Annie, folding Daisy’s sheet neatly under her chin. “Well, I always say we; really it’s them,
of course — we don’t have to go through it.… She’ll have a nice long sleep now; she’ll be absolutely fine.”
Then Jason came, today in a Pokemon T-shirt, wheeling a blood pressure machine. He fixed the machine to Daisy’s arm and frowned
at the display. The machine thought it was stilt attached to a printer, he said. I wasn’t to worry if it asked me for more
paper.
I sat in the armchair and wondered what to do. My wrist was sore from stroking Daisy’s head. I realized I hadn’t eaten anything
all morning, and I went to the hospital shop and got myself a sandwich and a magazine. I sat by Daisy’s bed, but I didn’t
eat or read. I watched Daisy’s face, Her lips were white and rough, like someone who has been acutely ill. As Annie had said,
she slept for a long time.
The Afghani woman drifted in through our door, her toddler clutching at her. Her veil had silver fringes. We smiled at each
other, feeling a kind of closeness, although we couldn’t talk together — sharing this thing, that we knew how it feels to
have a child who is sick — and she touched Daisy’s face with a gentle finger heavy with intricate rings.
Rain ran down the window, though you couldn’t hear the sound of it. Every time the blood pressure machine gave a reading it
beeped and flashed a display that said it was out of paper. I could hear conversations from the corridor. Jason was greeting
somebody. “Hi, Carol! Not seen you for a while. Been having a career break?” A doctor who talked rather fast was getting frustrated
with a parent who didn’t understand. “Now, how can I explain? What we want to do is to stop him developing. The medicine is
to stop him developing so his height goes up….” Their voices seemed so far away.
I sat and watched the patterns the rain traced on the glass, and felt afraid. I kept thinking how they’d said they hadn’t
seen anything abnormal. And that was good, of course, that was a relief; and yet at the same time it was frightening, because
what if they never discovered what was making Daisy ill? What if even here, with all their dazzling panoply of interventions,
their torches that can see inside you, their drugs that make you forget, they couldn’t find out what was wrong?
Around lunchtime, Daisy woke briefly.
“I dreamed I had the endoscopy,” she said. Her voice was hoarse.
“You did,” I said. “You’ve had it.”
“Oh,” she said. She frowned. “I can’t have. It was a dream, Mum.”
“No, really. It’s all over and done with. Isn’t that great?”
She gave me a skeptical look and went straight back to sleep.
It was late afternoon, and I’d just made myself a coffee in the kitchen down the corridor, when the consultant came. I felt
flustered and awkward, not knowing how to handle this situation — whether to stand up and give him my armchair, whether to
offer him coffee.
“Now, your little lady,” he said, propping himself against the end of Daisy’s bed. He was wearing a faded sports jacket. He
had Daisy’s notes in his hand. “As I said, her stomach and esophagus seem fine. But the biopsies we took from her bowel do
show she has a problem there. There are changes in the wall of the colon. She has inflammatory bowel disease, and there are
also some of the changes you find in celiac disease.”
“Oh,” I said. I put my coffee down very carefully. All I felt at first was a sense of surprise.
“In this illness,” he said, “the walls of the gut stop working properly and become too permeable, so toxins get into the bloodstream
and are carried round the body.”
He talked quite fast; I was struggling to understand.
“So — is that why she gets all these different symptoms?”
He glanced down at her notes. “Yes,” he said, “it would explain everything you’ve described.”
“You mean, the memory loss and The pains in her Jimbs and everything?”
“Yes,” he said. “All those things. It doesn’t always cause obvious bowel symptoms. The treatment I’m going to give her is
an aspirinlike drug combined with a sulphonamide. She’ll probably need to take it for quite some time — I’d suggest a year
at the least.…”
Something in my expression made him pause.
“Don’t worry,” he said. “These drugs have been around for ages; we know they’re pretty safe.”
“It’s not that,” I said. “She finds it so hard to take medicines.”
“I’ll give it to you in capsule form,” he said. “You can split the capsule and mix the drug into her food.” He wrote me the
prescription. “You can get it from the hospital pharmacy.”
“Right.” It sounded so simple.
“Now, these problems are probably secondary to her allergies,” he said. “The blood test showed she’s a very allergic child.
So you’ll need to change her diet. I suggest that you exclude wheat and dairy products to start with, and if that doesn’t
do the trick, take her off soya as well. Allergies to soya are becoming very common. They seem to put it in everything these
days. Our nutritionist will help you.”