‘I live here, remember? Pay the bills, drive you to stuff, clean your footie boots.’ James pulls his ‘you’re so not funny’ face. ‘I’m just working from home for a change. Stick one in for me, will you, mate?’ We missed lunch and Phil, like James, can only last a couple of hours between feeds. ‘College okay?’
‘Uh-huh.’ James isn’t a fan of words when noises will do. Conversation disposed of, Phil goes back to his emails, James slathers butter on his bagels, and I slice peppers and mushrooms, and what looks like normality reigns as the clock ticks towards 4.15 p.m.
She’s late back, only a few minutes, but it feels like longer. Phil and I go out to meet her from the bus. We watch silently as it reverses alongside the kerb. Graham, the driver, clambers out. He acknowledges our presence with his usual, slightly shy ‘hello’ and a hitch of his council regulation trousers. Phil and I stand side-by-side on the pavement like sentinels as Graham opens up the doors, clambers aboard and sets about undoing all the straps and buckles that secure Lauren’s wheelchair. He chats to her as he kneels at her side, working free the anchors. I notice how careful he is as he lifts the last strap over her head, making sure it doesn’t touch her face. ‘There you go, sweetheart. You’ve got the full welcome committee today.’ Graham always chats to Lauren, despite knowing full well that he will never get a reply. He reverses her chair onto the lift and lets Lauren push the down-button on the control panel, which is, as he’s told me twenty times before, strictly against council health-and-safety guidelines, but who’s gonna tell ’em. They ride down the four feet slowly and regally. My pulse races. ‘There you go.’ He eases her chair carefully up the kerb and Phil takes the handles. ‘She’s been good as gold, as always. See you in the morning.’ One more trouser hitch and Graham turns back towards the bus. He has three more kids to drop off before his shift is over for the day.
We take her inside and then…
Then it’s just like normal. Lauren hands me her hat, I unbuckle her and she slides herself out of her wheelchair, then crawls to ‘her spot’ on the floor in the lounge and signs for her iPad, and for something to eat. Phil brings her the iPad, but I sign, as I always do, that she must wait for her tea. The room fills with the sound of her pre-school programmes. She is content to be home. Just like normal.
And so it’s the routine that saves us, the necessary, boring, repetitive routine of family life. Phil and I steer clear of anything that touches on the future and stick to immediate concerns, the usual, pressing issues of whose turn it is to stack the dishwasher; how it’s possible that I can hear the freezer door opening and ice cream being stealthily removed, despite being three rooms away; and why it’s not a good idea to leave the back door wide open, as next door’s cat will always end up on our kitchen counter, eating butter from the dish. The mundane rituals go some way to soothing the shock.
At 8.30 p.m. I take Lauren up to bed, leaving the boys free to switch the TV straight over to the football match that they’re ‘missing’. She’s as compliant as ever, ‘helping me’ as much as she can. She knows the routine. As I pull her T-shirt over her head, I catch sight of the bruise in the soft, chubby crease of her arm where they drew the blood samples. Her skin bruises easily and deeply, and the area around the puncture wound is still a sickly yellowy-green. I whisper, ‘Sorry’ and stroke her arm, and for a second she studies me as if she’s trying to fathom the connection between her skin and my words, but of course she can’t. She settles into bed and I switch off the light, and in a heartbeat the momentum that’s been keeping me going all day judders to a stop. I push aside a pile of clothes and sit on the chair in the corner of her room, feeling hollowed out. Lauren wriggles around for a few moments getting herself comfortable, but soon settles, lying on her side, facing me. Her eyes blink open and shut. She’s asleep within five minutes, tucked safely within the fold of our family, dreaming her untroubled dreams.
I study her face. It’s a face that I’ve washed and dried all her life. I’m as intimate with her body as I am with my own. She needs me now as much as she did when she was a baby. But as I sit in her darkening bedroom, I know that I’m looking at her differently. In the arch of her eyebrows and in the deep cleft above her lips, in the colour of her hair – always a shade darker than Phil’s or mine – and in the paleness of her skin I’m searching for evidence of her other-ness. It feels like madness.
When they said there was a problem with the initial blood test, I assumed the worst. Or I thought I did. I assumed it was another problem linked to her condition. I braced myself for a new curve ball, thrown hard and low at us by her faulty genes. Something degenerative? Her kidneys? Something they’d missed, despite all the years of medical prodding and probing? Then came Phil’s unspoken doubts, his overplayed indifference, while the worm of distrust ate away at him from inside. But this new blow has nothing to do with Lauren’s disability, or anything to do with Phil or me. It is bigger than her and us. Lauren is not ours.
She begins to snore softly and I struggle to comprehend the truth of it. This child, the child we’ve spent fourteen years loving and caring for, who has grown but will never grow up, this child is not our daughter. Somewhere out there she has another mother, oblivious as yet, living her life, assuming her reality is just that: real. And wherever that mother is, there is another child, my birth daughter.
I cry quietly so as not to wake her.
3
Sleepless
PHIL
I DON’T remember going to sleep, but when I jerk awake it’s dark, that middle-of-the-night silvery dark that confirms there’s hours to go until dawn. I sense Sarah beside me silent and, I hope, asleep.
I go to the loo and piss noisily in the grey, moonlit bathroom. Lauren’s snores are loud enough to be heard above the crash of my pee. Our house is small. There’s no escaping each other, even if you want to. I can’t face going back to bed, so I go in to check on her, like I have a thousand times before.
Her bedroom is stuffy. She’s lying flat on her back with the duvet pulled up over her head. I ease it off her face gently so that she can breathe more easily, then I slide down and sit on the carpet, my back resting against the cold mirror on the wardrobe door. I’m aware of how stupid and melodramatic I’m being, prowling around the house in the early hours of the morning. I know I’m encouraging the anger that is churning in my gut, feeding it the oxygen that it needs to grow. But I can’t be calm. I don’t feel calm. All evening trying to pretend that everything is okay, when inside I’m raging. I’m furious with them – at the bloody hospital, at the whole sodding medical profession – every contact we’ve ever had with them has been bad and now this. I can’t conceive of how it was possible that they gave us the wrong child. How?
And I’m mad at myself, because on one level this chaos is of my own making. If I hadn’t gone to the paediatric appointment in the first place, if I hadn’t been clueless about the details in Lauren’s file, if I hadn’t queried her blood group just to prove that I was interested and involved, I wouldn’t have stirred up this whole mess and this wouldn’t be happening. We would’ve walked out of that room none the wiser and life would’ve gone on as normal.
This is happening because I was trying to prove to Sarah, and to myself, that I am a good husband and a good dad. No irony there.
A month or so ago Sarah was pissed off with me. There’d been the usual accumulation of things that I’d missed, forgotten about or, the real killer, never realised needing doing, sorting, booking or cancelling in the first place. She’d been circling the growing pile of grievances all week, dive-bombing in on something different every morning, usually just as I was about to set off for work, but on that Friday evening, with James round at Harry’s, Lauren upstairs asleep and most of a bottle of red demolished, she swooped. ‘You have no idea, have you? Go on, which appointment is it on Thursday?’
I hit mute on the TV remote. Guess-or-confess time. ‘I’m sorry, I don’t know. She has a physio appointment coming up, but that’s not
until the end of the month, is it?’ I heard the uncertainty in my voice.
‘That’s on the twenty-fifth.’
‘Sarah, please just tell me.’ Nothing. ‘I’m sorry, but Lauren has a lot of appointments. I can’t remember them all.’
She bashed down her glass. ‘Yes, she does. It must be nice not having to bother with the petty details of them.’ Her face was flushed, mottled pink by wine, anger and tiredness.
‘I know it’s been a bit full-on this past month or so.’ This was obviously the wrong thing to say.
‘Full-on? You haven’t a clue. Every damn appointment, all the phone calls, all the sorting out – it doesn’t just happen, you know.’
‘I do know. And I appreciate how much you do; you’re brilliant at keeping on top of it all.’ And she was, and I meant what I was saying.
‘I don’t want your appreciation.’ Her irritation was fierce. ‘I want you to be more involved. I want it to be you having to repeat, over and over again, her medical history, chase social workers, sit there while they mess with her, drive around panicking that you’re going to be late, trying to find somewhere to park.’ She was barely drawing breath. The escalation of this particular argument was familiar and the end result was the same. I ploughed on, trying to make amends, letting Sarah vent her frustrations until she finally ran out of steam and got upset. It was a rerun of a conversation we seemed to be having with worrying regularity.
In bed, an hour or so later, the tension slowly eased and she let me hug her. The dark, and our double bed, coming to our aid.
On the Monday evening I made sure to be home on time from work and, instead of bringing flowers, which I’d misjudged before and seen rammed into vases with as much force as the preceding argument, I told Sarah that I’d booked the following Thursday after-noon off, so that I could pick Lauren up from school and take her to the appointment with the paediatrician.
Which is what I did. I took my daughter to the most routine of her appointments for her general health check, to help share the burden with my wife.
And Sarah was right. The parking provision was crap. A delivery van and a taxi were hunkered in the two designated disabled spots, engines running, their drivers avoiding eye contact. There was nowhere close enough or big enough to park the van, so we ended up on a meter, which gave us precisely seventy minutes to get in and out of the appointment. I was sweaty and in a mood by the time we crashed into the waiting room, fifteen minutes late. We needn’t have bothered rushing. There were three other families already there, two of them, as it turned out, also booked to see Ms Langford. I tried to amuse Lauren by showing her the pictures in the magazines, but the reading material in the clinic seemed to consist of a series of specialist engineering mags, a few copies of Reader’s Digest and three ripped-beyond-reading pop-up books. One of the other mums took pity on me and passed over a couple of her daughter’s picture books. At least Lauren was quiet and relatively content, only registering her profound boredom by gently rocking her head, poking me in the arm every two minutes and signing for her tea.
One of the boys waiting with his parents had some form of autism. He bounced on his chair and flapped his hands hard against his ears, making a low keening sound that grew loud and then soft for no apparent reason. His parents tried unsuccessfully to distract him when the noise grew too insistent. I smiled each time the volume crept up, pretending it wasn’t getting on my nerves and everybody else’s. The other little boy looked ‘normal’, apart from being small and having a slightly misshapen head. The book-lending mum had a daughter in a wheelchair who looked very poorly indeed. A tube ran across her face and into her nose, and her frail legs were encased in some sort of metal frame. I went back to showing Lauren The Three Little Pigs and avoiding eye contact with of any of the other parents. If Sarah had been there, it would’ve been different. Conversation would have sparked and flourished, running back and forth along that wavelength that most mothers seem to be on, especially the mothers of kids with a problem.
The wait dragged on, and Lauren’s boredom thickened and made her restless. I remembered Ms Langford from the early days. Experienced, kind, very thorough, which was great when you were in with her, but not while you were waiting. The small boy went in next, followed soon afterwards by the autistic lad. They must have been seeing another consultant. The mum with the poorly daughter also turned out to be before us, which confirmed in my mind that we were buggered, as there was no way that was going to be a short conversation. I could see the meter ticking over into penalty as we sat there, trapped. Sarah’s desire to include me in the realities of Lauren’s appointments was working.
By the time our turn ground around, Lauren was past it, banging her head in protest. She tried to jam her hands in the spokes of her wheelchair when she realised that we were heading into another room, not outside. Ms Langford stood up to greet us, shook my hand, then crouched down to say ‘hi’ to Lauren, who refused to respond. ‘Sorry,’ I said, ‘she’s a bit tired from school and all the waiting around.’
To her credit, Ms Langford smiled ruefully. ‘Yes, I’m sorry you’ve had such a long wait. Sometimes there are some complex issues.’ We both paused and I thought about the frail blonde child with her attentive, resolute mother. ‘Please, take a seat.’ Lauren, as if suddenly completely au fait with what was about to occur, flicked off her wheelchair brakes, spun her chair around and wheeled herself a couple of feet away from us, back turned, as good an impression of a teenage strop as you were ever going to get. Ms Langford laughed. ‘Good to see she has a mind of her own. What is Lauren now – fourteen?’
‘Very nearly fifteen.’
‘And well, I see?’
‘Yes, apart from the usual stuff.’
‘But her glaucoma is under control, and I gather there are no immediate plans regarding further leg surgery?’ She started looking through the notes on the top layer of Lauren’s huge file, nodding as if in approval, which somehow irritated me. It was as if there was a league table for problems and, in that context, Lauren had got off lightly.
‘Well, the surgery was hardly a success; we’re not putting her through anything like that ever again,’ I bit back.
Ms Langford read on, telling me about the events of the past year – our year – then asked about Lauren’s eating and her weight. By the time we were onto the questions about her school and her social life, both she and I knew we were going through the motions, heading into the home straight. A loud snore from Lauren startled us both. Her head lolled at an uncomfortable angle. She was obviously fast asleep, her back still turned.
‘Does she do that often? Sleep during the day?’
I was past politeness. ‘Only when she’s bored.’
Ms Langford, the consummate professional, didn’t take the bait. She continued rifling through Lauren’s file. ‘Oh, I see you had a couple of appointments with Mr Belmont?’ She peered at me over her reading glasses, waiting.
‘We did?’ It was a question that could’ve meant anything, including ‘Did we?’ I had no recall of a Mr Belmont. I had no idea what she was talking about.
‘Her sleep apnoea?’ Ms Langford was quizzing me, but I was still coming up short. Sarah, of course, would’ve known immediately what the appointments were for. Ms Langford skim-read more of the notes and I sat there like chump, listening to Lauren’s snoring. ‘I see you did an oxygen saturation trace, and they took bloods to check for anaemia and to look at her thyroid function.’ She read on: the results presumably.
‘And the results were?’ I had to ask, whatever my ignorance would seem to indicate about my involvement with Lauren and the state of my relationship with my wife.
‘Reasonable on her oxygen levels and,’ she flipped over to the next sheet, ‘her blood work showed a slightly lower-than-average white blood-cell count, but nothing to indicate a need for treatment. Would you like to see the test results?’
To which, though I was tired, Lauren was fast asleep and the van was no doubt ticketed, I of
course said, ‘Yes.’
She slid the sheets of paper across the desk and I glanced down at them. Ms Langford explained, to my idiot eyes, the peaks and troughs of the trace. ‘It’s like a polygraph, only measuring oxygen levels rather than body temperature. But there seems to have been no real cause for concern and, as you’ll see overleaf, the blood tests didn’t indicate a problem, either, which is why I’m a little puzzled about her nodding off. Is she doing it a lot?’
At this, she turned to look at Lauren. I forced myself to skim-read the information; after all this was about my daughter’s health, not about Sarah and me bickering. At the top of the page I noticed that it gave Lauren’s blood group, then a series of figures with percentages.
‘Is she doing it a lot?’
‘No, not a lot.’ I didn’t look up from the page. ‘I think it’s just been a long week at school.’
‘Well, let’s just keep an eye on it for the time being?’
Blood group: A Positive.
Ms Langford started to wrap it up. ‘I suggest we see you again in twelve months’ time. Obviously, if there’s anything that troubles you or your wife in the interim, you’ve got my number; you can always call and we can get you in to see me more quickly.’ I kept staring at the sheet of paper. ‘Mr Rudak, was there something else?’
I nearly left it. I very nearly left it alone and took Lauren home. ‘Yes, could I just ask… we’ve never been told Lauren’s blood group before. It says here that she’s A Positive.’
‘Yes?’
‘Well, when we met with the genetics team, when Lauren was a baby, when she was first diagnosed, they said that RTS isn’t inherited, that it was just a glitch, not from either of us? They tested us both for some kind of chromosome markers, but there was nothing.’
The Second Child Page 2
