by Kate Hewitt
‘Neurologist?’ The word threw me for a loop. It sounded so serious.
‘Considering the seizures she’s had, as well as the other symptoms you’re mentioning, I think that is the appropriate specialist to consult.’
I felt as if I had stepped off the edge of a cliff into empty space. I was free-falling in my ignorance, hurtling towards this whole new world I didn’t want to get to know. It reminded me of that moment when my doctor had told me I had premature menopause, except so much worse. Everything was about to change, and in that moment I knew I didn’t want it to.
‘A child neurologist?’ Matt said when I told him. ‘Do you really think that’s necessary?’
‘Just in case, Matt.’
‘But she’s happy. She’s enjoying school. She’s doing well.’
‘She’s limping,’ I told him quietly. ‘Have you noticed?’ I’d been tracking it for the last week, and Alice’s gait had been consistently, troublingly uneven. ‘And sometimes she forgets words… easy words.’
‘Surely that’s normal, when she’s only four.’
I shook my head, because even though I wanted that to be the case, I knew in my clenched gut that it wasn’t. ‘Why wouldn’t you want to get this checked out?’ I asked. ‘Just in case?’
Matt stared at me for a long moment. ‘Because I’m scared,’ he said quietly, and it was a confession, not just of his fear, but of where we were – hurtling into space, having no idea where – or how – we would land. How far – especially Alice – might fall.
Twenty-Six
Anna
‘Milly.’ I stare at her in shock, still amazed, even after having buzzed her up, that she is standing in my doorway, that she is here. I am conscious of my bedhead, my pyjamas. If I had to see Milly again, this is definitely not how I would have planned it.
‘Sorry.’ She looks older, her dark, wild hair possessing a few grey streaks, deeper crow’s feet by her eyes. Yet essentially she looks the same – small and fierce, a bundle of nervous energy and purpose. ‘Did I wake you up?’
‘No… not exactly. What’s happened with Alice?’ It feels strange to say her name, especially to Milly. ‘Is she… is she…’ I can’t make myself say it, whether she is in trouble or sick or worse. So I just stare, waiting for Milly’s answer.
‘Do you mind if I… if I come in?’ she asks, deliberately not answering my question, and I shrug and step aside. She walks in slowly, taking in the changes in my flat in the last four years. ‘I wasn’t even sure you lived here anymore,’ she says as she comes into the living room. I changed the walls from deep terracotta to a more soothing ivory a few years ago. I also replaced the sofa with a big squashy one in grey suede. Winnie stretches and leaps off the sofa with a swish of her tail, avoiding Milly and disappearing into the kitchen.
‘Why wouldn’t I?’ I ask as I stand in the doorway. I want her to tell me what’s going on with Alice, not make chit-chat.
‘Only because I thought you might have moved. You changed your phone number…’ I don’t answer, and Milly narrows her eyes. ‘Didn’t you? Or was that you, telling me I’d got the wrong number?’
‘What’s happened to Alice?’
‘Nothing’s happened.’
‘You made it sound as if it was urgent, as if something was wrong.’ The adrenalin is still coursing through me, just from hearing Milly say those words. It’s about Alice. ‘Why are you here, Milly?’
‘I needed to talk to you. Something’s… come up.’
I arch an eyebrow, tense and waiting.
‘Are you still working in HR?’ she asks, and the words seem to hang in the air. Seriously? We’re going to just pick up where we left off, have a bit of a catch-up? I don’t reply and she bows her head. ‘Sorry,’ she mutters. ‘This is hard.’
‘Take a seat,’ I say, relenting a bit in my aggressive stance. Milly lowers herself into an armchair, and I notice how tired and anxious she looks. Fear needles me coldly. ‘What’s happened with Alice?’ I ask again.
‘I wish I could tell you.’ She sighs wearily and rubs a hand over her face. ‘But the truth is, we don’t know. We’re trying to find… Matt and I… We’ve started noticing things. Little things at first. Things that might not even be connected… I don’t know. It’s so hard to know. But we started to get worried, and then our GP referred her for some tests.’
My mind is whirling. ‘What kinds of things did you notice?’
‘Really little things.’ Milly shrugs, dabbing at the corner of one eye. ‘She’s a bit clumsy… she needed glasses… she was regressing in certain areas, verbal and motor skills… and then, last month, she started having seizures.’
‘Seizures…’ I can barely take it all in. Alice, lovely little Alice, whom, on some level, I still picture as a baby, having these issues. ‘So what tests has she had? What have you found out?’
‘That’s the problem. Nothing.’ She spreads her hands despairingly. ‘They’ve ruled out a bunch of disorders, thankfully, some serious, some not as serious.’
‘Such as?’
My bullet-like questions seem to take her aback, as if she hadn’t expected me to be so interested, so invested, still. But then I have no idea what Milly has thought about me these last four years – if she’s thought of me at all.
‘Epilepsy, ADD, something on the autism spectrum… but she’s never had those kinds of symptoms. At least, not until recently.’
My stomach plunges, icy with dread. ‘What’s happened recently?’
‘I don’t know, exactly.’ Milly looks as if she could cry. ‘It’s all so nebulous… I mean, she’s four. Should I be worried that her pencil grip doesn’t seem as tight as it did a few months ago? Or that she has reversed some letters she had nailed down last spring? You hear all the time that this kind of thing is normal, but since starting reception a few weeks ago, her teacher has flagged up some concerns.’
My stomach swirls with anxiety. ‘So how long has this been going on?’
Milly sighs and sits back. ‘For about a year, I suppose, although I didn’t start noticing things properly until the seizure. We took her to the GP right away after that, and he finally referred her for tests in September… we’ve had several appointments since then but still no answers.’
‘And now?’ My words hang in the air and then gently fall, like snow.
‘And now the consultants want to rule out some of the rarer genetic disorders,’ Milly says quietly. ‘Finding a diagnosis can take years sometimes, because there are so many conditions that are so difficult to pinpoint, that are so incredibly rare. If they can run some genetic tests…’ She trails off, and realisation seeps in. Milly may be Alice’s mother, but for the genetics, she still needs me. I wonder how she feels about that, but I know it doesn’t matter. This isn’t about me or Milly; it’s about Alice.
‘What do you need from me?’ I ask, knowing I’ll give or do anything.
‘Just a DNA sample.’
‘Don’t you have one, from before? Didn’t they run some tests then?’ It would seem tragically remiss if they didn’t, and I still remember the reams of forms I had to fill out, the blood samples taken. Surely they covered all the bases? Except somehow it seems they didn’t, and that makes me afraid.
‘Yes, they ran tests before, but not for every condition that’s out there. That would be impossible.’ She pauses. ‘I could have had an amniocentesis to check for various conditions when I was pregnant, but with the high-risk nature of my pregnancy, it didn’t seem like a good option, and I don’t think it really mattered anyway. I was going to have Alice, no matter what.’
Because she wanted her so much. I remember. How I remember. ‘So…’ I say unsteadily.
‘So now we need a sample, if you’re willing.’ She sounds so hesitant, as if I might shout at her, ask her how she dare think I’d do anything for her after… well, after. Yet of course I’ll agree to anything to help not Milly but Alice. Always Alice.
‘Yes, fine,’ I say, my voice abrupt
. ‘I’ll give a sample.’
‘That would be great.’ Milly looks so relieved that it makes me angry. How could she think I’d be so selfish as to refuse? Did she ever know me at all? Or is she feeling guilty for her part in our story? ‘The specialist’s office will give you a ring… it’s the Bristol Royal Hospital for Children, the clinical investigations unit.’
Which sounds terrifyingly serious.
I nod, and Milly slowly rises from the chair.
‘Thank you for doing this, Anna.’
‘It’s no problem.’
‘I wanted to say…’ She pauses and I wait, my expression bland. I have no idea what she plans to say next, and in the end I think she changes her mind. ‘How have you been? Are you working?’
‘Yes, I retrained to work in development. I work for a non-profit now, a charity that supports victims of sexual assault.’
‘Oh, wow. That’s… that’s amazing.’
‘What about you? Do you work?’
‘No, not since…’ An awkward pause. ‘I never went back.’
We stare at each other for another endless moment. There are too many things to say, and yet there is also nothing. Nothing that could bridge the chasm between us now. Then Milly gives a little uncertain smile. ‘Thank you again. I – we – really appreciate it,’ she says.
‘Of course, I’d do anything for Alice,’ I say, my voice throbbing with intensity, and Milly looks away. I’ve made her uncomfortable. She doesn’t want to think about my motivations, or what they mean.
She starts to leave, and part of me can’t believe that this is the total of our conversation. We were best friends for nearly twenty-five years. How can that all be gone? But I’m not willing to say something that would attempt to bridge that gap – in part because whatever I say will fall miserably short, and also because I don’t want to. Part of me is still angry. Perhaps I always will be.
After Milly leaves, I call Will. ‘I heard from Milly,’ I blurt. ‘It’s about Alice.’ I tell him all of it, and he listens, and reassures me, and tells me these tests are most likely just a precaution, to cross out some of the more unlikely and worrying possibilities. But I think of Alice forgetting words, missing steps, and my heart both aches and trembles in fear. A tiny part of me thinks this wouldn’t have happened if I’d been there. I would have kept her safe. Except, of course, that’s not true at all. I might be the reason why Alice is experiencing these symptoms. If she has a genetic disorder, then it is either my fault – or Jack’s.
A week later, the hospital rings, and arranges for my sample to be taken. It’s a simple process – a cheek swab and a blood test, to see if I am a carrier for any hereditary disorders. I ask what kind of disorders they are thinking about, and the nurse tells me, rather repressively, that there are too many to list.
‘But are they serious?’ I ask, because I need information.
‘Some are, some aren’t,’ the nurse says, and I know she’s not going to tell me anything.
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…’
‘Lasagne?’ I said, trying so desperately to sound light-hearted. ‘Is that what you mean, silly?’
‘Yes!’ She beamed at me. ‘Lasagne.’
&nb
sp; 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 don’t know.
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.
