Mummy’s Little Helper: The heartrending true story of a young girl secretly caring for her severely disabled mother

But there was no point in being negative. One thing our reading had surprisingly thrown up was a prevailing sense of optimism. Though some people had the disease very aggressively, others seemed to have a cycle of illness and remission, with a few lucky ones living long and mostly manageable lives. Perhaps all would be well after all.

Abby came home from school and just had time to run upstairs and change out of her uniform before it was time for me to drive her to the hospital. Sarah was a patient at the big general hospital in the next town to ours and it would be at least an hour’s drive. Thankfully we’d be doing it just before the rush hour, and would have missed the worst of it by the time we travelled back. I’d packed some sandwiches and a drink for Abby and brought my usual pile of gossip magazines. Apart from pleasantries, my role was essentially one of chauffeur. Supporter too, of course, but beyond that, this was all about them. It was completely new territory for me, this situation – a very unusual circumstance – and I’d already asked how I should play it. Both John and Bridget had told me that I had to take a back seat, and unless Sarah wanted to ask me anything about Abigail’s day-to-day routine, then I shouldn’t get involved, because one fact still applied: this child was in care now, and all decisions about her welfare were the responsibility of social services.

‘So, all excited?’ I asked Abby now, once we were in the car and under way. She’d changed into some jeans and a T-shirt and was carrying her Glee backpack. I’d suggested she bring the scrapbook we’d made together so she could show her mum what she’d written and the pictures she’d drawn. I saw her face form a look of enquiry now.

A look of hopeful enquiry, too. I cursed my choice of words. ‘Oh!’ she answered, her eyes widening. ‘Is Mummy coming home tonight now?’

‘Sorry, sweetheart. No, I’m afraid not. Not yet. I just meant were you excited about seeing Mummy. Bet you are, eh? And I bet she can’t wait to see you.’

Despite my knowing Abby knew that this wasn’t going to happen, it was sad to see her looking so crestfallen. She fell silent and began to chew the skin around her fingers, staring out of the window at the leaden February sky.

‘There’s a sandwich in the box there, I said. ‘And a banana, if you’d like it. And a carton of juice. I think it’s –’

‘Will they have given Mummy tea yet, d’you think?’ she interrupted. I watched her tap her watch face for about the fifth time since we’d got into the car. Perhaps the hands stuck sometimes.

I looked at the clock on the dashboard. ‘Not yet, I think, no. It’s still a bit early, so –’

‘But it’s teatime,’ she said plaintively. ‘If she doesn’t have her tea now, they’ll be all behind with her bath. And it’s Coronation Street tonight.’ She frowned, and then seemed to think of something else to worry her. ‘D’you think they even know what days are Mummy’s bath days?’

‘Love, I’m sure Mummy will have told them. Anyway, it’s a hospital and in hospital they tend to give you a bed bath every day.’

‘What’s a bed bath?’

‘It’s what they do when you can’t get out of bed.’

This seemed to horrify her. ‘Don’t they help her?’

‘Yes, I’m sure they do. When she needs to get up, of course they do. They –’

‘I think I should write a list for them,’ she decided, unclipping her seat belt.

‘Sweetheart, don’t undo that –’

‘But I have to get some paper, so I can do a list for them. I’ve got some in my backpack. It won’t take a second.’

‘Love, please do up your seat belt. It’s against the law not to wear your seat belt …’

But needless to say, by the time I had said this, she’d made a grab for her backpack and was already buckled up again. ‘I think I must,’ she said firmly, rootling for a pen.

I let her sit and write for a few minutes, conscious that she was right – she probably did need to, if only to transfer her anxieties to the page.

‘All done?’ I asked, once it seemed she’d run out of things to add to it.

She seemed happier now. ‘I think so. I’ve had to leave some of the food things. Do they have a list for the whole week on that menu card you told me about?’

I tried to dredge up a memory of when I’d last seen one. It had been a very long time back. ‘I don’t think so,’ I said. ‘I think it’s a new one for each day.’

‘That’s a bit silly,’ she said. ‘It would be much easier if they did it for the week, wouldn’t it? Then they’d know what to buy. Much more organised.’ She began scribbling something else.

I could have given her five minutes’ worth of hospital catering arrangements, and how patients came and went and how it wouldn’t be practical, but as I didn’t think it would calm her down any I decided against it.

‘Speaking of being organised,’ I said instead. ‘It’s going to be half-term in a week or so. Is there anything special you’d like to do? Any outings we could go on? Anyone from school you might like to have round to play? Or come and see a film with us, perhaps? I’m sure there’ll be lots of things on.’

Abby shook her head, making her bunches dance around. Her list complete, she was back absently chewing on her fingers. I wondered about drawing her attention to the fact, but decided against. ‘Hmm?’ I urged. ‘What d’you think?’

‘I’m not sure we should arrange anything,’ she said, having given the matter her usual moment of thought. I had never seen a child so young be so measured in what she said. ‘If you don’t mind, that is,’ she added. ‘What if Mummy’s home?’ I was about to answer, but before I could formulate the most diplomatic reply she answered herself anyway. ‘And if she’s not, we’ll be going to visit her anyway, won’t we?’

Which seemed to be the end of the matter for her. ‘Of course we will,’ I said. ‘But that won’t be all day every day, will it? I’m sure we can find one day to go out for a little treat. Maybe bowling. There’s a thought. My Kieron loves bowling. You’ll meet him soon … Yes, there’s a thought. Have you ever been bowling? For a friend’s birthday or something, maybe?’

I was fishing, but she didn’t seem to notice. She took her fingers from her mouth and shook her head again dismissively. ‘I don’t really have time to go out to birthdays.’ She said the word birthday with a slight but discernible air of contempt.

‘What, never?’

She shook her head again. But then her expression changed. ‘I could, if I wanted. I do get invited. But I don’t go. Everyone’s always so silly …’

‘Silly? How?’

‘Just …’ She sighed heavily. ‘Just so childish.’

‘But that’s okay, isn’t it? You know. When it’s a party, and you’re playing games and stuff?’

Abby frowned again. ‘I mean just silly all the time. I mean the girls are. They just do silly things and talk about silly things. And boys … And I just never understand why they find it all so interesting …’

Again, the word ‘interesting’ held that slight note of irritation, as if she found herself beached on the shores of a foreign country, and couldn’t seem to get her head around the crazy things the locals did. Which perhaps she couldn’t. And perhaps wouldn’t, given the few things she’d told me. Did she ever – had she ever – done any normal kids’ things?

But Abby was spared the pain of any further Casey interrogations as the hospital buildings rose into a grey and brick bulk on the horizon and I became preoccupied, out of necessity, as I’d fully expected to, by the business of working out how and where to legally park the car. It wasn’t a hospital I knew well, but at least it had the usual array of enormous signs, all groaning under the weight of so much necessary information: outpatients, main hospital, accident and emergency, nurses’ accommodation, staff car park, X-ray, chapel, catering services and so on. Plus the reliably unhelpful list of named buildings, all given their titles in homage, no doubt, to various esteemed, long-dead medical notables. I scanned the visual overload and eventually found ‘visitor parking’, which, as I’d also expected, was about half a mile distant and, while bristling with warnings about the consequences of illegal parking, pretty thin on available parking spaces.

We found one in the end, however, after a short bout of anxious circling, and I had just enough coins for the pay and display. I said as much to Abby, as I rummaged in my purse. ‘Next time,’ I said, almost as a mental note to self, ‘we must remember to bring enough change with us.’

I heard the zip on the backpack being opened once again. ‘I’ll make a new list for that,’ Abby reassured me.

I’m not sure what I had expected. Our stint of internet research had thrown up so many images, both mental and visual, that I realised I had no ready picture in my mind for Sarah, just a general expectation that she’d in some way ‘look’ ill.

But she didn’t. Yes, she looked as if some movements were causing her pain – I noticed her wince as she waved a hand to greet us, for example – but if you gave her a cursory glance, you’d never think her ‘ill’. The only evidence that there was something serious going on – though I didn’t know what – was that there was a mound under the blanket, where her legs were, which I presumed was the outline of some sort of cage or box, keeping the covers from touching her.

The ward the duty nurse had directed us to was a six-bedder, the last of several identical bays. There was only one other bed occupied in her section at present, it seemed: a sleeping middle-aged woman, the top of whose bedside cabinet was crammed with cards and flowers. It made the lack of either on Abby’s mum’s bed feel very stark and I cursed myself for not thinking to bring some.

Sarah, who looked to be in her early thirties, was quite well built, which gave her a healthy sort of glow, though I noticed that her hair, which was a caramel to Abby’s blonde, was lank and looked as though it hadn’t been washed for a while. She had the same eyes as Abby, greyish green and deep set, and as we drew nearer I could see dark circles beneath them. I tried to imagine what it must be like to be her – to be so ill that you were separated from your only child in this fashion. And worse, to know she was being cared for by strangers. How did that feel? I really couldn’t imagine.

I put a broad smile on my face, conscious of her silent inspection. That at least wouldn’t set any alarm bells ringing, I didn’t think. Though I knew how to discipline children of any age and size (it had been my job for so many years now that I had long since perfected ‘the look’) I was not an intimidating-looking character. At just five foot nothing, and in sweatshirt and leggings, plus comfy boots, mine was not the kind of look that would alarm anyone. And though I had more that once been called an ‘old witch’ (due to my black hair – teenagers could be so imaginative) by the odd miscreant who’d fallen foul of me in my days working at the local comprehensive, where adults were concerned my problem was more usually of being underestimated.

‘Nice to meet you,’ I said, beginning to extend a hand but, unsure if she’d want to shake it, transferred it to the pocket in my jumper instead. I knew from our recent research that MS sufferers could have pain in their hands. I looked at the cage again. And their legs too, I guessed.

Abby had seen it too.

‘Mummy, what’s that?’ she asked, alarmed. ‘Why have you got a house on your leg?’

‘I broke my ankle, poppet,’ she explained. ‘When I fell. Didn’t they tell you that?’