Sarah, Sophia’s mother had been on her own, with very little in the way of family, which was why Sophia, after a period of being looked after by an uncle, had finally had to come into care. Visits to Sophia’s mother, by the time she had come to live with us, meant visits to a room in a hospice. She was on a life-support system, in a persistent vegetative state, and seeing her for the first time was profoundly shocking. She was so beautiful, and so young, like a sleeping Disney princess. It was an experience I would never forget.
I wasn’t expecting anything quite so dramatic – or, indeed, distressing – today. In fact I was looking forward to meeting Sarah. Most kids are in care because they can’t be left with their families, more often than not because the families in question were unfit, for whatever reason, to care for them.
This was different. Sarah clearly loved her daughter. It was just cruel fate that had conspired against the pair of them. It was frustrating, certainly, that she’d felt unable to ask for help up to now – and the results of her over-reliance on her little girl were obviously a problem – but who was I to say I wouldn’t have done the same in her situation?
And perhaps the illness had crept up on her – multiple sclerosis was like that, wasn’t it? And the situation at home – the way everything had been arranged for Abby to do everything – had obviously grown up over a number of years. And if I knew anything about anything it was that if a situation developed gradually, it could easily become just another version of ‘normal’ – you sometimes didn’t notice it as anything that odd. Perhaps, up till now, Sarah had, to her mind, been coping, and it had taken this crisis to show her she was not.
Much as I looked forward to meeting her, however, I had realised I was woefully ignorant when it came to having a clue about the specifics of her disease.
Mike likewise. ‘Incredible, really,’ he’d commented the night before, once we were in bed. ‘Not to mention lucky.’ He was right. There was no one in the family who’d had multiple sclerosis, and neither of us knew anyone who had either. ‘I think the only person I know of who has had MS is that guy at work – d’you remember?’ said Mike. ‘The one they thought had a drink problem, and almost got sacked? Poor guy. I wonder what happened to him in the end.’
And so it went on. Though, once again, being in the dark was not a new situation for us. When Sophia had come to us with Addison’s disease, we’d had to learn a lot of medical stuff in a very short time just to be sure her illness was kept under control. Were it not, we’d been warned, she could die. This, thankfully, was different. Physically, Abby was just fine. And Sarah wasn’t our responsibility. But we still felt we needed to understand things a little better if we were going to help Abby through this stressful period. At the very least there was the central – and still unanswered – question about what was going to happen with Sarah long term.
In the end, I’d gone downstairs and got the laptop, so we could get a better picture of what we were dealing with. And having familiarised ourselves a little with the mechanics of the condition, we’d spent what turned out to be a dispiriting half-hour, reading about the many ways multiple sclerosis could disable a person. Not the most edifying kind of bedtime reading.
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
