Not My Daughter

As I step outside the hospital, it is a beautiful autumn day, both crisp and warm. I think of ringing Milly, to tell her I’ve given the sample, but really to try to get more information about Alice, but then I don’t. The hospital will tell her, and she made it clear on her brief visit what she wanted from me. Now that she’s got it, I doubt she’ll be in touch again. She didn’t even show me a photo of Alice when we spoke, and I knew better than to ask.

But a shaft of longing still whispers through me. Alice. I try to picture her, whether she looks anything like me now, but of course I have no idea. She would have started reception last month. I picture a little girl in a bright new uniform, hair in plaits, her gap-toothed smile bright, but I might as well be picturing a child in an advert or storybook.

I don’t know anything about Alice anymore. I wouldn’t even recognise her in the street, even though I keep looking. And that’s the way Milly and Matt wanted it, and it’s clear that that’s the way they still want it.

Nothing is going to change now, no matter what is wrong with Alice.

Twenty-Seven

Milly

It is going to take as long as six months, perhaps even more, to complete Alice’s genetic testing. The information levels me, because I am desperate for answers.

Matt and I sit in the specialist’s office, listening to him deliver this terrible news, our hands clasped. Months of not knowing how to treat Alice, months where she is not getting the therapy or medication or whatever it is she needs, because it is late November, four months since we first took her to the GP, and it is clear that something is very wrong.

Neither Matt or I can explain away her symptoms any longer, as much as we want and try to. Vision impairment? Plenty of children need glasses, and sight loss can be a consequence of premature birth. Clumsiness? The same. Reversing her letters, forgetting words she once knew? At four, that’s still normal. As for the seizures… well, childhood seizures can be something you grow out of. I tell myself I was being paranoid, thinking there was something wrong. I’ve always been hypervigilant, and in reality you could take any person’s various quirks and failings and turn them into a syndrome.

These tests, we reassure each other, are just to be safe, to be sure. It’s probably nothing. It’s almost certainly nothing. But this litany of desperate optimism isn’t working anymore, because Matt and I are not the only ones to notice Alice’s symptoms.

First it was her teacher, telling us what we already knew – that Alice was unusually clumsy, that she forgot words, that she could not put on her shoes or even her coat.

‘I thought it was just stubbornness,’ Miss Hamilton, a battleaxe of a teacher nearing retirement, told us at the parent-teacher conference in October, ‘but now I’m starting to wonder. Have you had her tested?’

Mr Williams, the child neurologist, has taken our symptoms seriously. He’s told us so many disorders of this kind are difficult to diagnose, because the symptoms are so terribly nebulous. He’s told us to trust our instincts, and I fight against the urge to say I don’t want to, because my instinct is saying this is serious. This is Alice.

Alice, who gives a deep belly laugh when Matt tickles her. Alice, who plays make-believe stories with her dinosaur-shaped chicken nuggets until we tell her she really needs to eat them. Alice, who listens to my ridiculous made-up story about the fairies outside her window, which I’ve been spinning chapter after melodramatic chapter for over a year.

Alice, who we’ve wanted so very much, who we fought for and love with every fibre of our being. How can something be wrong with her? She’s perfect. Just the way she is, she’s perfect.

‘But surely you might find a diagnosis sooner?’ Matt asks Mr Williams now, as we sit there with our hands clasped, his reasonable tone underlain by anxiety.

‘Possibly,’ Mr Williams allows. ‘But at this point it’s like looking for a very small needle in an absolutely enormous haystack… I know that sounds a bit trite, but Alice’s symptoms are a motley collection that could be pointing to any number of conditions.’ He pauses. ‘And you should prepare yourself that we might never find a full explanation. I know that’s difficult to hear, but new disorders, hereditary or not, are being discovered and classified all the time. I just don’t want to set you up for disappointment, by not knowing the facts.’

‘Trust me,’ Matt says with a grim smile. ‘That is not the case.’

‘Mr Williams, it seems as if there has been an acceleration in Alice’s symptoms.’ I hate having to say it, but in the last few weeks, she’s forgotten even more words, things that can’t be explained away by her age.

Last night she asked for lasagne for dinner but she couldn’t actually remember the words: ‘You know, that flat pasta with the sauce?’ She screwed up her face. ‘It’s got red sauce and white sauce and it’s really yummy…’

‘Las

agne?’ I said, trying so desperately to sound light-hearted. ‘Is that what you mean, silly?’

‘Yes!’ She beamed at me. ‘Lasagne.’

But as I started frying the minced beef, I fought a tide of panic, an urge to cry right then and there. Darling girl, how could you forget lasagne? You have it every week. It’s your favourite dinner. You’ve been calling it by name since you were two years old, and we were so proud you could say such a big word by yourself.

I grieved that little girl then, because I knew, in some way, she was gone. And I told myself that we would find a diagnosis, that she would get better. Whatever it took – surgery, therapy, medication, anything. We’d do it. We’d find a way to make Alice herself again.

And yet, with each passing day, I noticed something else. She now had to walk down the stairs one foot at a time, so slowly, when a few short months ago she’d skipped down them happily. We’d taken her for another vision test and it had deteriorated since she’d got her prescription. She had seizures several times a week, and occasionally she’d give what I’d learned were myoclonic jerks – sudden muscle spasms that she didn’t even notice but Matt and I certainly did.

‘It could be something innocuous,’ Matt insists as we drive home from the hospital with no more answers than before. ‘There are plenty of treatable conditions, things that can be handled with the right medication or therapy. We just need to know what it is.’ He hits the steering wheel, whether for emphasis or in frustration that we don’t know, and won’t for a while yet, I can’t tell.

I tell myself that at least now we’re on the right track, hopefully, with Anna and Jack’s samples logged in and being compared to Alice’s. If there is something hereditary, surely they’ll find it. My mind drifts back to Anna, because, in some ways, it’s easier to think about her now than about my daughter and all I don’t know.

She looked the same – a bit older, as I am, but essentially the same. Somehow that surprised me, because she seemed so different. Colder, more contained, less passive. A harder version of the woman I once called my best friend, and I wonder how much of that is up to me.

‘You haven’t even asked about Anna,’ I tell Matt, and he shoots me a wary look.