‘OK, well, I’ll see you both later.’ I kiss her and Iris.
I’ve got mixed feelings about meeting Anton. I haven’t seen him since the holiday and I suspect Yasmin may be behind the proposed drink. I wonder if Bel put her up to it. Maybe she called to ask Yasmin for advice, after she got the letter from Hedda, and Yasmin’s dispatched Anton to find out exactly what we want from her.
Or maybe I am doing Anton a disservice and he is just offering a metaphorical shoulder to cry on. He knows, more than anyone, what it’s like to discover that your child is never going to have the life you envisaged for them – that your child is different and is always going to be different.
For me, the worst part of all of this is having to tell people – having to reply to those casual staff room ‘How’s the baby?’ questions, knowing they are expecting the answer to be ‘fine’. Half of them can’t remember if she’s a boy or a girl, let alone her name – the younger teachers, without kids, and the men with them. The female staff who are also mothers can remember everything. It’s an amazing facility, which most men don’t seem to have, myself included. I know Julie Effingham, deputy head of drama, has children, because she keeps disappearing off on maternity leave and when she comes back she talks about them all the time. But, even though I see a lot of her on a daily basis, I somehow let it all flow over me – all the talk about her child, or children. None of it actually sinks in.
Maggie can’t quite believe how little I really know about the people I work with. ‘How many children does she have?’ ‘Where does she live?’ ‘What did she do before she worked there?’ I’ve never had satisfactory replies to any of these questions, but within minutes of meeting her at a school play Maggie had the answers to them all, and she’s retained them.
‘How’s Ruby getting on at her nursery now?’ she’ll ask if I mention Julie.
I’m not sure who Ruby is. I didn’t know she went to nursery, let alone how she’s getting on there.
‘Fine.’ I’d feign knowledge and revert to something I did know about, such as the production we were planning for the Year Tens. ‘Do you think Spring Awakening is suitable for that age group?’
So I couldn’t really mind that some of my colleagues had very little awareness of Iris. In fact I was glad of it. It meant there was less chance of their asking how she was and my having to tell them.
Julie did, of course, all the time. ‘How’s Iris?’ ‘Is she sleeping though the night?’ ‘Has she started teething?’ ‘Does she crawl?’ She asked on such a regular basis that I was forced to consult with Maggie about the names and ages of her children and prepare a list of questions I could ask her in return.
‘How’s Iris?’
Julie had been the first to ask when we went back to school after the summer holidays.
‘OK now. But we had a bit of a scare,’ I’d said, and filled her in on how horribly frightening it had been while she’d been ill: how we’d had to rush her to hospital and in a matter of what seemed like minutes her body went from being a bit flushed to covered in a virulent rash and her breathing from being normal to rasping and struggling.
‘Is she back to full strength?’ Julie kept asking during the first few weeks of term.
‘Seems to be,’ I’d replied, adding something about the resilience of babies, still struggling to get my head around the fact that a few weeks earlier she’d been in hospital on oxygen, being fed and medicated through tubes, and now she was home and dragging herself around the furniture in a desperate attempt to walk, as if nothing had ever happened at all.
Julie had looked concerned when I told her that Maggie was a bit worried about her, a few weeks later. ‘Have you taken her to the doctor? What is she worried about?’
‘Nothing specific really, just little things. She seems to be a bit more withdrawn and she’s lost interest in the world around her. But I expect that’s normal.’
Julie looked as if it wasn’t, and when I told her that Maggie had been right to worry all along, that we’d taken her to the doctor and been referred for tests and the tests had told us she’d lost her hearing in both ears, Julie was touchingly tearful.
‘Oh, Ben, I’m so sorry. You must be devastated. How badly is she affected? Or is too early to tell?’
‘No, they’ve done tests,’ I told her, feeling angry and, as usual, my stammer returning. ‘She’s lost the hearing in b-b-both ears. She can hear virtually nothing.’
We know this now. We don’t know yet if hearing aids will make much of an impact, whether she might have cochlear implants or if we will simply have to resign ourselves to the fact that she can’t hear, and learn sign language, both of us, properly.
‘And yes, we are devastated,’ I say to Julie, who said the right thing when she said we must be.
Not everyone does. People don’t know what to say when you tell them news like this. I’m sure most of them think it’s awful, but political correctness gets the better of them. We teach and have been taught to celebrate difference. It’s supposed to be a wonderful thing. I have classfuls of children who remind me it’s not PC to notice even. A kid the other day told me I was racist when I mentioned the Gypsy Kings.
‘Sir, that’s racism.’
‘No, Hal, it’s not. It’s the name of a band.’
But he wouldn’t accept this. ‘You’re not allowed to call people gypsies,’ he insisted. ‘You have to call them travellers.’
‘Unless the name of the band they happen to be in is the Gypsy Kings.’
He was unswayed. I wonder what he would have said if I’d told him my daughter was deaf and I’m not cool with it. Would he tell me I was being disablist?
Maybe I am. But I don’t accept that Iris’s difference is a thing to be celebrated. I’m more than happy for people to bring their guide dogs into cinemas and their wheelchairs to work. I just wish my daughter was not deaf.
When I think back to my stammering schooldays, all I wanted was to be the same as everyone else – able to say my name without stumbling. That’s all I want for Iris too. I want her to be the girl who can fidget while listening to her teachers and not have to concentrate to discover what they are saying. I want her to be the girl who can communicate with her friends verbally, not by waving her hands in the air and making shapes with her fingers. I want her to be the girl with her hair held back from her face with pigtails, to reveal two clichéd shell-like ears. I don’t want hearing aids protruding from them.
‘Of course there’s a lot they can do these days,’ Daniel Holland, the head, said when I told him.
He was reacting as most people do, trying to be positive. ‘Look at Emma Nicholson,’ they say, as if that helps. It doesn’t. She comes up a lot, and Marlee Matlin, the only deaf performer to win an Academy Award, for her role in Children of a Lesser God. Look at these women, they say, as if plucking role models out of the air is going to assuage our grief for what we’ve lost: a beautiful hearing daughter. She’s still beautiful but she can’t hear, and, whatever anyone says, it’s not a difference I see reason to celebrate.
I want people to commiserate with me. I’ve lost my hearing daughter. I am devastated, yes. Wouldn’t they be too?
Thank God for Anton.
‘When we found out Conrad was autistic, it felt as if we’d been given a life sentence,’ he told me, once we were seated at a table in a pub near East Croydon railway station. That was its only real selling point. ‘That’s how I felt, anyway, I don’t think Yasmin did. I still don’t think she does.’
‘And you still do?’ I watch him downing his pint with a rapidity that makes me think he needs it.
‘Pretty much, yes.’ He lowers his voice and glances round a bit. ‘It’s a terrible thing to say about your own child but I really wish he was not like he is. I wish to God he was normal.’
He finishes the rest of his pint.
‘Sorry.’ He looks at me. ‘I didn’t mean to imply that having a deaf child was going to be all bad.’
‘It’s OK. From w
hat I’ve seen, Conrad is pretty hard to cope with.’
‘All I meant was – ’
‘It’s good to hear someone actually react to their child in a negative way,’ I say to him. ‘Say the things you aren’t supposed to say. People keep saying unhelpful things like, “If they lose one sense their others become heightened – perhaps she’ll be an incredible painter,” and I want to say, “I don’t want her to be an incredible painter, I just want her to fucking hear me speak or hear Maggie play.”’
‘People said the same with Conrad.’ Anton has finished his drink and is looking towards the bar. ‘They still do, unless they know him well and know how ridiculous it is to say it now. When we first found out he was autistic, everyone seemed to think that meant he would be some sort of savant or mathematical genius. He’s not. He’s just self-centred and crazy.’
‘I know people are trying to be positive – ’ I begin.
‘Too soon,’ Anton cuts across my sentence. ‘That comes later: the picking yourself up and dusting yourself down and forging ahead.’
‘What do you mean?’
‘When you first get the news. You need to grieve. You’ve lost the child you thought you had. You can’t just let go of that and adopt another one overnight and be fine about it.’
‘Same again?’ I ask, grateful to be sitting opposite someone who appears to have a real idea of how I’m feeling.
‘The worst part,’ I say, when I come back from the bar, ‘is that it’s all so unnecessary.’
Anton nods but says nothing. I thought he might already know, but maybe he doesn’t. ‘We’re taking legal action. We’re suing Isobel and Eric for damages.’
‘I don’t quite understand.’
‘If they’d had Gabriella vaccinated, none of this would have happened. They knew there was every chance she had measles but they left her with Iris, knowing she was highly contagious, knowing Iris was too young to have been vaccinated yet.’
Anton says nothing. He fiddles absent-mindedly with a beer mat.
‘If Isobel knew she had measles then she shouldn’t have left her with Maggie and Iris. You’re right,’ he said, when he finally replied. ‘But…’
‘What?’
‘I know you must be angry. I would be too, in your position. But if I’d been in Isobel’s position I might have done the same.’
‘You mean you wouldn’t…’
‘If I’d thought there was any risk of having a child like Conrad, I wouldn’t have taken it. I know that’s a terrible thing to say but it’s how I feel. Never a day goes past when I don’t wish he was normal. I hate myself for saying it but it’s true. So, if I’d been in Isobel’s shoes at the time, maybe I’d have done the same. That’s all I’m saying. I feel terrible for you and Maggie, though, of course.’
‘Do you think that’s what caused Conrad to…’ I wasn’t quite sure how to finish the sentence.
‘No. Once we found out what was wrong with Conrad, it became clear in hindsight that there’d always been something not quite right.’
‘So you never thought it contributed?’
‘Initially, yes, we did. But mostly because we wanted someone or something to blame. You don’t want your kid to be different, I know that, Ben. I can understand why you’re blaming Isobel. All I’m saying is, at the time, I might have done the same, in her shoes.’
‘Does Yasmin feel the same?’ I ask, my heart sinking. I don’t want Yasmin to help Isobel. I want her to be on my side.
‘No, I don’t think so. She’s always been more accepting of Conrad.’
‘Maggie seems to be the same.’
‘Really?’
‘Yes. I mean she’s upset too, obviously, but more accepting, more ready to find out what needs to be done and do it. Maybe it’s a maternal thing.’
‘I can see it’s harder to accept something when you think it could have been avoided. We know other parents of autistic kids who were adamant that the MMR damaged their kids.’
‘I thought maybe Isobel might have been in touch with Yasmin.’
‘No,’ Anton says. ‘Not heard anything since the party, and they left that in a bit of hurry, after Isobel found out that Iris was deaf. Yasmin says she was quite upset.’
‘Good,’ I reply. ‘Did she say anything else?’
‘She felt terrible, that sort of thing.’
‘And she hasn’t been in touch since?’
‘No,’ Anton replied. ‘And to be honest…’
‘What?’
‘Well, between you and me, Yasmin’s kind of fallen out with Isobel,’ Anton says, and takes a large sip of his pint.
‘Since when?’ I ask, and I wonder if they have fallen out over this. ‘They were fine on holiday.’
‘Well, that’s why I say kind of,’ Anton says. ‘It’s more in Yasmin’s head really. I don’t suppose Isobel is even remotely aware how she feels.’
‘Which is?’
‘Let down, I suppose,’ Anton tells me. ‘I don’t know Isobel that well; we don’t see much of her, even since we moved down. Yasmin told me they used to be close but she feels as if she’s been, not avoiding her exactly, but giving her a wide berth, and she’s hurt by that.’
‘But why? Is this recent? Is there a reason?’ I ask, still thinking – still hoping, if I’m honest – that it’s over this business with Iris and me.
‘No,’ Anton replies. ‘It’s been going on for years, since Conrad was little, and he’s the reason really. I know he’s bloody difficult to be around, I know other kids don’t like him, but Yasmin just expected Isobel to be there for her.’
‘And she hasn’t been?’
‘No, to be honest, she hasn’t. You really find out who your friends are when you have a disabled child, Ben.’
Isobel, Monday
Yasmin was busy when I called her earlier.
‘I’m just in a meeting with a client,’ she said when I was first put through. ‘Can I call you back in half an hour?’
When she does, she is cautious.
‘Yes,’ she says, in response to my question. ‘Anton had a drink with Ben, so I did know that he was thinking about taking legal action.’
‘He’s doing more than thinking,’ I correct her. ‘We’ve had a letter from his solicitor. That’s why I’m calling. I need to find one to act for us but I don’t know where to start.’
‘Do you not have one?’ she asks.
‘No, why would we?’
‘Wills, conveyancing, that sort of thing,’ Yasmin replies.
‘We did make a will,’ I tell her. ‘But that was a long time ago and this is very different. I was wondering if you could – ’
‘No, I’m sorry,’ Yasmin replies before I’ve finished my sentence. ‘It’s not my area of expertise, and anyway…’
‘What?’
‘I don’t think it would be a good idea for me to get involved, not since this is between you and Ben.’
‘I just thought you might be able to give me a bit of advice, as a friend,’ I say, feeling slightly crushed. ‘And maybe point me in the right direction?’
‘I’m sorry, Isobel,’ she says. ‘My advice would be just find a firm of local solicitors with a good reputation. There must be people there you can ask for a recommendation?’
‘OK, thanks. Sorry to disturb you at work.’ I end the call and feel a huge sinking feeling.
The number of good friends I thought I had is rapidly diminishing.
So I ask in the playground, when I go to pick up Vincent. One of his friends’ fathers is a solicitor. I’ve no idea what sort of work he does but I catch sight of the mother, Rachel, and ask her, vaguely, if she knows of any good solicitors.
‘For what sort of work?’ she asks.
‘I’m not quite sure.’ I know that sounds daft, but I suddenly realise I’m not sure what kind of solicitor we need. ‘It’s for a friend, for some sort of civil action.’
I don’t want anyone to know what’s going on. I don’t want to be the object of p
layground gossip, any more than I already am or have been. You never know what people are saying behind your back, but I know people have opinions and they air them among themselves, if not to my face.
‘Oh, well, that’s a relief,’ Rachel replies. ‘Usually when people ask me about solicitors – and it happens quite often – it’s because they are getting divorced.’
‘No.’ I try to laugh, but it sounds hollow to myself. ‘Nothing like that.’
‘Well, Mark’s firm specialises in divorce and conveyancing but they might be able to help your friend. Do you want his number?’ she says, waving as her son emerges though the door of the school.
‘No, don’t worry.’ I was hoping she would recommend someone else, someone less close to home than the father of a friend of Vincent. ‘I’m sure they’ve found someone by now. I just thought I’d ask as I’d bumped into you.’
‘Mum!’ Vinnie’s appearance diverts us from the conversation. ‘Why don’t bees like Marmite?’
‘I’ve no idea.’ I put my hand out to ruffle his hair, the closest he’ll allow to a kiss when he comes out of school these days. I am always thrown by Vincent’s questions, never quite sure where they come from or where he’s going, if anywhere, with his line of thought. ‘Maybe they do like Marmite,’ I suggest.
‘Max says they don’t. Can I put some in the garden when we get home and see? By the way, I’ve got a note.’
‘Sure,’ I say as he fishes in his pocket and pulls out a piece of paper he’s folded so many times that it’s about the size of a very thick fifty-pence piece.
‘Have we got Marmite?’
‘Yes, I think so.’
‘Good.’
I started unfolding the note, far enough to see that it is about special immunisation clinics being held around the Brighton area and urging any parents whose children have not been vaccinated to attend. I fold it up again and put it in my pocket.
I turn to say goodbye to Rachel and see her looking at Vincent in a slightly odd way, the way people do who don’t quite get him. I am already imagining the scene when we get home, smiling at the sense of purpose with which I can envisage him taking a jar of Marmite, spreading it on to something and taking it into the garden, conducting his experiment with energy, as if the results are of vital importance to the rest of the world, the way he does a lot of the largely pointless things he does.
Living With It Page 18