by Sophie King
As Tabitha howled with fury and stretched her face away, Susan wiped her daughter’s mouth. Tabitha hated it and no bloody sock puppet, as What Mums Know had suggested, would make her feel better about it.
‘Moremoremoremore.’ Now her face was puckered with fury as she tried to reach for the remaining slice of cold toast on the table.
‘No, darling, you can’t have any more. You’ve already had four pieces and you know the bus sometimes makes you sick. It’ll be here any minute. Do you want to look out for it?’
To her relief, the hot, bitter expression in Tabitha’s eyes melted away and Susan wheeled her to the window. The changes in her nature, from fierce anger to childish delight, had become more marked in the last year. Dr Hill had said it was hormonal. At twelve, Tabitha was becoming a woman, with beautifully shaped breasts that were at odds with the rest of her crooked body, slumped in the chair. It wouldn’t be long, Dr Hill had warned, before she’d have periods. One more thing to mop up.
‘Can you see it yet?’
‘Nnnnnnn.’
It was remarkable, the consultant had said, that Tabitha could speak in her own unique way. Many children with her problems were unable to. But Susan knew it was due to sheer determination, not luck. Since Tabitha was eighteen months old, when the diagnosis had been confirmed, she had battled crazily to teach her the skills that a ‘normal’ child would automatically learn. She’d spent hours, days, weeks and months repeating words to make them go in.
The crying shame of it was that Tabitha was naturally intelligent. She could point to words in magazines when Susan said them; she could type them on a keyboard, although it took an age. She was pretty, too, with her straight fair hair, and the sweet little snub nose that had made Susan think of the name Tabitha when she’d been born. Now the name suited her more than ever: different, unfathomable.
‘Busbusbusbus!’
Tabitha was straining with excitement as the minibus pulled up outside the house.
‘Mummummum, busbusbus!’
‘I know, love. I’m coming.’
Susan took a quick look round the kitchen, with the handrail on the sides of the counters, to check she’d turned everything off. The flat in Pheasants Way had been purpose-built for those with special needs. It was a far cry from the pretty cottage she and Josh had bought before Tabitha’s birth, but much more practical.
‘Off we go, then! Whoops, nearly forgot your jumper. Better take that, hadn’t we, in case it gets cold again?’
It was comforting to talk as though Tabitha might reply at any minute, thought Susan, as she hauled the wheelchair into the extra-wide hall and down the ramp. Its weight had cracked the slabs of the garden path and now, she noticed irritably, weeds were growing through them.
A group of faces stared out at them from the bus. Danny, who had Down’s syndrome, was grinning broadly. He was Tabitha’s special friend and his mother, Joy, liked to think that Susan was hers. Alan, only fifteen although he looked forty, ignored them as he picked his nose, carefully pressing his findings into the back of the blue-and-pink-flecked seat in front of him. Paula, with her large gold hoop earrings – a different pair for each day of the week – waved excitedly.
‘Busbusbus!’ screamed Tabitha, pounding the sides of the chair furiously with her fists. It was her sign to make Susan go faster.
God, this chair was heavy. The driver normally came out to help her but this one was new. Inside the bus, she could see Danny’s mother going up to the front and saying something to him.
Reluctantly, or so it seemed, he lumbered down the steps. ‘Need a hand, love?’
‘What does it look like?’ She hadn’t meant to sound so sour but just as Tabitha had her highs and lows, so did Susan.
Together, she and the driver eased Tabitha out of the chair and up the steps. Flopping like a puppet with broken strings, she leaned on Susan, who had been taught how to take her daughter’s weight by one of the instructors at the day centre. She was lucky, she’d been told (always lucky!), that Tabitha could manage a few steps. But what, Susan wanted to know, would happen when Tabitha grew even bigger and her mother was unable to take the weight? There were no answers to that one.
‘Hiya,’ said Joy, cheerfully. ‘Morning, Tabs. That’s right, you sit next to Danny. He’s been dying to see you. Then Mum can sit next to me.’
Susan sank down gratefully. ‘Thought he’d never get out to help.’
Joy rolled her eyes. ‘Some people don’t think.’
Susan didn’t want to go down that road. ‘Not thinking’ was one of Joy’s favourite topics. ‘I know it’s terrible,’ she said quietly, as the bus began to move, ‘but there are times when I can’t wait for Tabitha to turn sixteen so she can go to the centre on her own in the holidays and I have some time to myself.’
Joy nodded. ‘Me too. My bloody sister’s always whining because her local holiday club won’t take her kid until he’s four. I told her she doesn’t know how flipping lucky she is. Some people just don’t think . . .’
Susan allowed Joy’s words to wash over her as she stared out of the window. Rows and rows of fields punctuated by the odd satellite Bedfordshire village, sometimes with a shop and sometimes not. When she and Josh had moved out to the country, it had been with the express intention of giving their as-yet-unborn baby the chance to grow up in a safe, natural environment. There were times when she wondered if she should move back into a town or at least nearer to London where she had grown up. But it would mean starting all over again. Forging new networks. Finding another centre. Tabitha hated anything new.
‘Here we are!’ Joy said the same words every morning as though, one day, they might arrive somewhere different. She pulled out a powder compact and dabbed her nose. ‘Do you think they’ll take photographs?’
‘Who?’ In her head, Susan was still in London, walking round the familiar streets in the way Tabitha never would.
‘The journalist. The lady who’s coming from the radio station to do a piece. Didn’t anyone tell you?’
‘No. What does she want with us?’
Joy was still checking her reflection. ‘You know. A general piece on why centres like this are important.’
Great, thought Susan. That was the last thing she needed – some nosy-parker asking personal questions. ‘Come on, love,’ she said to Tabitha. ‘That’s right. Lean on my shoulder. Not there. A bit higher.’
Somehow they got down the steps, her daughter frowning with concentration. If there was one thing they had in common, thought Susan, clinging to the rail, it was the desperate wish to be the same as everyone else.
‘Go on, have one! Otherwise I’ll feel bad.’ Joy pushed the plate of biscuits almost into her lap. Slightly stale Chocolate Digestives. Bourbons. Pink wafers. Comfort food to block out reality. Before Tabitha, Susan had been so slim, but afterwards it had seemed selfish and vain to take pride in her appearance. Tabitha’s condition put the rest of life into context. Nothing else was important.
‘That must be her,’ hissed Joy. ‘Over there.’
A small dark-haired girl was coming in, carrying a black box in each hand. Her crisp beige linen suit, the kind Susan might once have worn, immediately identified her from the others, who were in their usual jeans and T-shirts. No point in wearing anything nice when someone would slop something over it before the end of the day. The day-centre manager was talking to her earnestly, pointing out a couple of mothers who were hovering at the side of the room, hoping to be noticed and pretending not to be. It was like waiting to be picked for the school team.
Tabitha was engrossed in the jigsaw on the tray that fitted neatly on to the front of her wheelchair. She was amazing at jigsaws even though it took ages for her hands to close round the pieces and nudge them in. Heaven knows where she’d got that particular talent from. Susan could barely get her brain round the newspaper crossword. Tabitha could remember long strings of numbers too, even if she could hardly say them. Susan and she were working on writing them down
but it was taking longer than Susan had hoped. Another year and they might achieve one to ten. With kids like these, a tiny step was a triumph.
Joy watched the reporter make her way to Alan, one of the manager’s favourites. ‘We won’t get a look-in if that cow has her way.’
Susan was watching Tabitha’s fingers painstakingly pick up a piece of jigsaw. She studied it intently, dropped it, then picked it up again. ‘Why do you want to talk to her anyway?’
‘It’s our chance, isn’t it? For a start we could get her to do something about statementing. We still haven’t had a letter back from Social Services. Some people just don’t think . . .’
Susan ate another Bourbon. And a third. Listlessly, she picked up one of the old magazines that someone had brought in, flicked through it and put it back on the chipped coffee-table. There was a poster on the wall of a foreign-looking place with a beach and hills behind it. The centre had several like it, stuck up with Blu Tack, each location unidentified and unattainable.
‘She’s coming,’ hissed Joy.
The girl walked up to them boldly, smiling broadly. ‘Susan?’
‘Mrs Thomas, actually.’
It might be old-fashioned but she resented people who assumed they could call you by your first name when you didn’t know them.
The expression on the journalist’s face showed she had registered her mistake. ‘I’m so sorry. I was told to ask for Susan.’
‘I’m Joy. That’s my boy over there, Danny. Got Down’s, he has, and we’re still waiting to hear about his statement.’
The journalist listened politely to Joy’s diatribe. She had to give the girl credit, thought Susan. Many other people, herself included, would have cut in by now.
‘That all sounds very unfortunate, Mrs, er . . .’
‘Browne. That’s with an e at the end. Aren’t you going to turn on your microphone?’
The girl, who seemed incredibly young for a journalist even though it was the local station, nodded. ‘In a minute. Actually, I was wondering if Mrs Thomas could spare me a few minutes. I need to get a mix of cases and I’ve already got a boy from the mum over there. I believe you have a daughter?’
Susan nodded. A childish part of her was pleased that she had scored one over Joy. ‘Tabitha. Over there. Doing a jigsaw.’
‘She seems very focused.’
‘She is when she wants to do something.’
Joy’s lips tightened. ‘Quite stubborn at times, wouldn’t you say, Susan?’
The journalist glanced around. ‘Shall we find a quiet corner so that you can tell me what it’s like to look after Tabitha?’
Susan laughed hoarsely. ‘You’d need to live with us to appreciate that.’
The girl’s eyes flickered with something between sympathy and curiosity. ‘I’m sure, but at least we can make a start. Let’s go over there, away from the noise.’
‘It’s OK. I’ll keep an eye on Tabs.’ Joy’s voice was flat in the knowledge that she’d lost.
‘Would you be able to interview my friend afterwards?’ whispered Susan, as they settled into a pair of metal-framed chairs at the other end of the room. ‘It would make her day, even if you didn’t use it.’
The girl smiled at her. ‘Why not? Now, tell me, Sus– Mrs Thomas, what did you do before Tabitha?’
She hadn’t expected that. No one ever asked her about her life when it had been normal, and before she knew it, it had all come out. How she’d sold advertising space at the local newspaper. How she’d met Josh in the canteen and fallen in love in a way she had never thought possible. How she had finally got pregnant after four years of disappointment and moved to the country three months before the birth. How Tabitha’s short labour had been such a shock. How . . .
‘Would you like a tissue?’
And she’d promised herself she wouldn’t cry. ‘I’m sorry.’ Crossly, Susan blew her nose. ‘It’s just that when I let myself think what my life could have been, I feel ridiculously sorry for myself and Tabitha.’
‘Josh too?’
‘No. Not him. But I don’t want to talk about that.’
‘That’s OK. Now, tell me, Mrs Thomas, when did you first know something was wrong?’
‘Susan. You can call me Susan. Not for months. She didn’t feed particularly well but I thought that was me. And she didn’t crawl. My doctor did some tests but said she was a late developer. Then, when she was just over a year, she had her second lot of injections.’ Susan’s nails dug into the palms of her hands. ‘Tabitha started screaming about a week after the vaccination and she threw a high temperature. It came down after a day but I knew – my gut instinct told me – that something had happened to her.’
The girl was wide-eyed. ‘What did you do?’
Susan laughed bitterly. ‘I called out the GP but he said that a small number of children do react like that and that it was “normal” especially as she’d soon stopped crying and her temperature had come down reasonably fast. He assured me there was less than one in a million risk of a child getting meningitis or encephalitis due to the measles part of MMR. And that even these rarely caused brain damage. He also said there was no evidence that MMR causes autism.’ She tried to swallow the lump in her throat. ‘But by the time she was two, Tabitha still wasn’t walking or talking.’
‘You took her to a specialist?’
Susan nodded. ‘He said there was a possibility she had been deprived of oxygen before, or during, the birth. But I couldn’t see how. There was nothing in the notes to suggest it and, anyway, as I said, it had been a really fast birth. The consultant said that normally this kind of “cerebral palsy”, as he called it, is caused by a long labour where the baby gets stuck and deprived of oxygen. He also said a really fast birth could cause brain damage too but he couldn’t be certain if this had been the case with Tabitha. You’d be amazed at how many kids have an unexplained disability.’
She blew her nose. ‘We had some other tests too, but they showed nothing. No one could find a particular reason for Tabitha’s condition. Instead, there were all these possibilities. We’ve had so many medical advances over the last few years that we expect to know all the answers. But Tabitha and half the other kids here are living proof that we don’t.’
The girl’s eyes were filling with tears. ‘And is there any hope for her?’
‘Put it this way. We were told that she’d probably never walk, although she can, after a fashion. We were also told that she’d never talk, even though she can say enough for me to understand her.’
‘It must have affected your relationship with your husband,’ said the girl, sympathetically.
Susan looked up at the ceiling. It was dirty and there was a large cobweb in one corner. She’d learned long ago that it helped to concentrate on irrelevant things when the pain was particularly bad. ‘Josh left soon after Tabitha was diagnosed.’
‘That must have been terrible.’
‘Yes,’ she said slowly, remembering the gripping terror she’d felt when he’d shut the door behind him, leaving her with a small child. ‘But by then I hated him.’
‘Why?’
‘Because he’d been in favour of her having the MMR in the first place. I hadn’t been sure – I’d been scared by some of the stories in the papers about it – but he told me I was overreacting.’
The journalist’s green-brown eyes were like a cat’s. ‘So you think it was his fault?’
‘You could say that. Or you could say, like Josh did, that I’m just trying to pin the blame on someone.’ She stood up. ‘Look, I’m sorry, I don’t want to talk any more. But my friend Joy is dying to tell you about her problems and she’s got more of a story. You will let your listeners know how important the centre is to us all, won’t you? It’s open in the holidays as well as term-time, and it’s got much smaller classes than the big one on the other side of town.’
Somehow Susan found her way to the loo. As she bolted the door behind her, she had a nasty feeling she’d said more than she�
�d meant to in the heat of her emotion. Maybe she should take some of it back. Quickly, she washed her hands and went out into the hall, almost colliding with the centre manager who was carrying a lunch tray. The stench of cauliflower was nauseating.
‘Where is she? The journalist?’
‘You’ve missed her. Said she’d got everything she needed and would let us know when we’re on air. Exciting, isn’t it? She spoke to nearly all of us including –’ she lowered her voice ‘– Lisa, who insisted on butting in. Honestly, I sometimes think that girl’s a bit simple.’
Susan made her way back to Joy, who was already sitting at the table for lunch. ‘Did she interview you? After me?’
Joy’s eyes glittered with disappointment and jealousy. ‘No.’
‘Bitch.’
‘That’s not like you.’
‘This place makes me not like me.’
‘I know what you mean.’
Susan took her plate next to Tabitha’s wheelchair. Her daughter was scooping up carrots and thin slices of lamb in anaemic gravy, then shovelling the ghastly mix into her mouth. Cutlery skills were a barrier they still had to conquer.
‘Moremoremore.’
Tabitha leaned over to her mother’s plate and closed her fist over the cauliflower. Cheese sauce oozed through her fingers on to Susan’s untouched lunch. Laughing, Tabitha took her fist back to her mouth, slopping some of the cauliflower in and allowing the rest to fall down her T-shirt, which had already been changed twice that morning.
‘Whoopsadaisy,’ said one of the helpers. ‘Let’s mop you up, shall we, Tabs, and get Mum another helping?’
Susan closed her eyes to hold back the tears. ‘It’s all right, thanks. I’m not hungry.’
‘Go on.’ The girl was sponging Tabitha’s T-shirt.
‘No, honestly.’ The sight of liquid cauliflower in Tabitha’s fist had taken away her appetite. If only Josh had listened to Susan’s gut instinct about those bloody jabs, she thought, Tabitha might have been a very different child.
