by Kate Hewitt
I sit back on my heels as she continues to sob, choosing to be alone in her grief, to shut me out. Why? Why didn’t she or my father ever tell me the truth? Why didn’t they include me in their grief? I am angry, but more than that, I am deeply, profoundly sad, for so many reasons.
I think of my brother, and then I think of Alice. Alice. My heart breaks all over again, cracking right down the middle; soon it will be nothing but a handful of jagged splinters.
‘Why didn’t Dad want to tell me?’ I ask quietly when my mother’s sobs have subsided to hiccoughs.
She shrugs and wipes her eyes. ‘It was too painful. When something like that happens… you don’t want to be defined by it, and yet you are. Of course you are. Richard couldn’t see that. He thought if we moved from London, if we built this new life for ourselves, with you, it would be better. A fresh start for everyone, but there never could be any such thing.’
‘Weren’t you afraid I might have it, too?’
My mother doesn’t look at me as she answers. ‘Of course we were. We hadn’t intended…’
‘I was an accident,’ I say flatly.
‘Do you think we’d want to risk going through it all again?’ she demands raggedly.
I understand that, even if I can’t help but feel hurt. ‘Is that why you fought?’ I ask. ‘Because of him?’ Was it why you drank? ‘Why you divorced?’
My mother looks at me with bleary tiredness. ‘What do you think?’
I rise to my feet, knowing there is little more to be said. Even now, in the midst of her grief, my mother is choosing solitude over being with me, as she always had, and it hurts. I want to share this with her; I want to comfort her in her grief, a grief I feel even though I never knew this little boy. My brother.
‘I’m sorry, Mum,’ I say, and she just shrugs and looks away from me.
I am at the door when I turn back to face her, feeling strangely empty as I take in her shattered look, her still-streaming eyes. If they’d told me… if they’d tried to make us a family again, instead of choosing grief over love… but perhaps they couldn’t. Perhaps they weren’t strong enough. I know I can’t blame my mother, considering the pain and grief she has had to endure.
‘What was his name?’ I ask softly.
She gazes at me, everything about her broken. ‘Robbie,’ she whispers.
As I turn away from her, I wonder how on earth I am going to give this awful news to Milly – and how I can bear to live with it myself.
Twenty-Nine
Milly
‘Anna wants to talk to us?’ Matt sounds incredulous that I could have entertained such a prospect for a moment. ‘Absolutely not.’
‘Matt. She says she has something important to tell us. About Alice.’ I remember Anna’s broken voice and I feel a sharp stab of fear. Do I want to know whatever she is going to tell us? And yet I have no choice, because if she knows something that can help Alice…
‘What could she possibly have to say about Alice?’ Matt scoffs. We are standing in the kitchen after supper, talking in hushed voices as Alice watches television just a short distance away.
‘I don’t know, but she sounded worried. Scared, even.’ Which terrifies me. ‘Perhaps something to do with the genetic testing—’
‘Which is with Mr Williams, a highly trained specialist. If there is news about that, he’ll be the one to ring, not Anna.’
‘Still, she has something to say to us, Matt.’ I close the dishwasher and lean against it, my shoulders slumping. I feel so exhausted all the time, and at the same time completely wired, my whole being powered by this endless anxiety. I just want to know, and yet I don’t. I very much don’t.
‘I doubt it’s anything. She’s probably just fishing, looking for a way back into Alice’s life.’
‘And is that so wrong of her?’ I ask quietly.
Matt folds his arms. ‘She talked to a lawyer, Milly. She was going to sue for custody of our daughter.’
‘We don’t know if she would have actually gone through with it.’
‘And what makes you think she wouldn’t have?’
‘She gave her back rather quickly, and, after all, it was five years ago. Besides, this is about Alice.’ I lower my voice even more. ‘If she knows anything that could help her… help us with a diagnosis… we have to listen to her, Matt. For Alice’s sake.’
‘I can’t imagine she does,’ Matt snaps, but I see the acceptance in his eyes. For Alice, he’ll do anything. Just like me. ‘Fine. We’ll see her. But she’s not seeing Alice.’
‘Who isn’t seeing me, Daddy?’ Alice lopes into the room, a shuffling sort of walk we’ve become used to, glancing between the two of us. I give Matt a quelling look.
‘No one, sweetheart,’ I say, dismissing Anna as simply as that. ‘It’s time to get ready for bed.’ I reach for Alice’s hand, and her little fingers slip through and twine with mine. Together we head upstairs, each step painfully slow, reminding me how much has changed. On the third step, Alice trips and nearly sprawls flat on her face, but I manage to keep her upright – just.
‘Sorry, Mummy.’ Her lower lip trembles and I pull her into a quick hug.
‘You don’t ever need to be sorry, Alice. Never, ever. Not for falling. Not for anything.’
‘Why am I falling so much?’ she whispers. She pulls away so she can look at me seriously. ‘What’s happening?’
My heart feels like a cloth wrung for its last drops as I meet her confused and unhappy gaze. ‘I don’t know, sweetheart. But the doctors are going to find out.’
An hour later, Alice is peacefully asleep and I am pacing the downstairs, mindlessly moving toys from one basket to the other in an attempt to feel busy, even though everything is already tidy. Matt is sitting on the sofa, frowning at his phone. Anna is due to arrive any minute.
When I think of what she might say, even in the most vague and nebulous terms, I feel as if I could be sick. My stomach churns and my skin prickles and I continue to pace our downstairs, needing to move, because otherwise I might leap out of my own skin. Then the doorbell rings.
Matt doesn’t move, so I go to open it, blinking in surprise at the sight of Anna. She looks… well, she looks terrible. Her hair is piled up messily and there are deep, violet shadows under her eyes. She looks old, as if she’s aged a decade since I’ve last seen her, and I can’t bear to think why.
‘Anna…’
‘I’m sorry to be so sudden with this.’
I step aside and she moves into the room, her arms wrapped around herself, her head bowed.
‘I’m so, so sorry.’ Her voice breaks and I stand there, frozen, because even though I’d been dreading this visit and what it might mean, I am still shocked by the depth of her sorrow.
Matt tosses his phone aside, looking unmoved by Anna’s agitation and regret. ‘Just what,’ he asks, ‘are you sorry for?’
‘Matt.’ Does he actually think this is about what happened five years ago? Because I know it isn’t.
‘For a lot of things,’ Anna says quietly. ‘But mostly for what I have to tell you now.’
I open my mouth, but no sound comes out. My mind is blank and buzzing, my mouth terribly dry as my heart starts to thud. I don’t want to hear this. I know I don’t want to hear this.
Matt’s face is stony and he doesn’t say anything.
Anna looks at us both, strangely dignified in her misery. ‘Shall we sit down?’
Then, when we are all seated, when I want to prolong this moment forever and at the same time feel as if I can’t stand a second more, she speaks.
‘I visited my mother this afternoon. She told me something I had no idea about… no idea at all… but I am afraid it has some bearing on Alice, although I hope – I hope so much – that it doesn’t.’ Her voice has broken again and she dabs at her eyes.
‘Just say it, Anna,’ Matt says, his voice hard. He’s acting as if this is no more than histrionics – doesn’t he realise this is serious? That this matters?
‘I had a brother,’ she states woodenly. ‘An older brother. My parents never told me about him. I never even knew he existed until today.’
‘What…’ The word comes out in a breath, as I stare at her uncomprehendingly.
‘He had a hereditary condition. A neurological disorder that has symptoms that sound very similar to Alice’s.’ Her face crumples before she smooths her expression out, like a hand smoothing a sheet, and takes a hitching breath.
‘So you think Alice has this condition?’ Matt says, sounding sceptical. ‘Is that what you’re saying?’
‘I think it’s possible. Of course, this… this condition requires both parents, that is, genetic donors, to be carriers of the gene. So Jack would have to be tested, as well.’
‘We’ve already asked him, and he’s been tested. What is this, Anna?’
‘What?’ Anna stares at him uncomprehendingly. ‘What do you mean…’
Matt leans forward. ‘Is this some bid for attention? A way to get close to our daughter again? Is that what you’re after?’
‘Matt.’ Even I, in all my fearful paranoia, can see this is not some sneaky, manipulative move on Anna’s part. How could it be? She looks heartbroken.
Anna turns to look at him. ‘Do you think I’m making this up?’ He shrugs, and she leans forward, intent now, her eyes blazing. ‘This is the last thing I’d make up. The very last thing. I’m here because of Alice, Matt, because even if you don’t want me to, even if you can’t stand it, I care about her.’ She turns to me, fiercely. ‘I do. I’m sorry, but I do. And the truth is, I hope to God she doesn’t have this condition. I hope and pray with everything I have.’
‘Why?’ I whisper. I can’t absorb the rest of what she’s said, not yet. ‘What is this condition, Anna? What… what might it mean for Alice?’
Anna lowers her gaze. She doesn’t speak for a moment, but I already know. I think in some dark corner of my heart I’ve always known, or at least I’ve feared. But I need her to say it.
‘It’s called Batten disease. It’s a neurological condition that causes vision loss… loss of motor skills… childhood dementia…’ A soft cry escapes me. ‘Children diagnosed with it end up being completely bedridden and dependent… and they usually die by their early teens,’ she finishes, her voice so unbearably sad. ‘At the latest.’
For a second I can’t take it in. I won’t. I simply stare at her, and so does Matt, and then I lurch upright and race to the downstairs toilet, where I am violently sick, my insides wrung out. A few minutes later I walk into the kitchen; the world around me is going in and out of focus, my heart beating with hard, erratic thuds. Anna and Matt are both still seated in the living room, frozen as if they are part of a tableau. I pour myself a glass of water and drink it, my mind both numb and spinning.
‘Milly…’ Anna begins.
‘No.’ The word comes out of me, flat and forceful. ‘Alice does not have that. Alice cannot have that.’
‘I’m so sorry, Milly.’ Anna is crying now, and Matt is looking dumbstruck, and suddenly I am filled with so much rage.
‘No!’ I hurl my glass at the wall of kitchen cupboards, but its loud shatter doesn’t satisfy me. I need so much more to break.
‘She might not have it,’ Anna says softly, even though we all know it for a lie. ‘It could just be a coincidence…’
‘No.’ I press my palms against my eyes, pressing until I feel pain and see flashing lights behind my lids. ‘No. No. No.’ The words fire out of me, and then I am collapsing softly, folding inwards, as I crumple to the floor and sobs tear through me.
A few seconds later I feel arms around me, and I realise they are Anna’s. And I cling to her, because I am drowning and I need an anchor.
‘I’m so sorry,’ she murmurs against my hair. ‘I’m so, so sorry.’
And I know she is, for so many things, just as I am, but being sorry isn’t enough. It won’t matter for Alice. It’s already too late for her, even though it’s only beginning.
After a few moments, I stand, and then Matt comes over and pulls me into a hug. The three of us stand there, our heads bowed, our shoulders shaking, once united by love, and now brought together by grief. There is no going back.
Thirty
Anna
For a week, I walk around in a fog. I can’t concentrate on anything – not my job, not Will, not even the simple matter of sleeping and eating. I am waiting for Milly to contact me, to tell me what the consultant has said, and whether Alice has Batten disease. I am still hoping, ludicrously I know, that she does not.
I’ve imagined the call so perfectly – the incredulous relief in Milly’s voice, the laughter, the discovery that Alice has some strange virus or some far less serious condition that responds to treatment and medication – because I’ve looked online, I’ve scoured all the websites, and the outlook for Batten disease is as unbearably grim as my mother first said.
After I told Milly and Matt, after we embraced in the midst of our sadness, the push and pull of our relationship over Alice ceased to exist, at least in that moment. Who cared what had happened before, when Alice’s life was at risk?
But then Matt stepped away and nodded at me, a farewell. ‘We’ll tell you if we have news,’ he said, clearly a concession, and I wondered how much had actually changed between us.
Then, ten days after that conversation, Milly finally texts me. You were right. Three short, terrible words. I stare at the text and am reminded of when she texted me before, when she found out about the premature menopause. It feels like a lifetime ago, and it is. Alice’s lifetime. I think of how devastated Milly was then, and how neither of us could have ever imagined where that conversation in a wine bar would end up taking us.
On impulse as well as instinct, I text her back. Do you want to meet? Have a drink later?
I stare at my phone, willing her to respond. And then, after a few endless minutes, she does. Okay. How about 6?
It feels surreal to be winding my way through the wine bar later that evening, clutching a glass of white; I haven’t been here since Milly was pregnant, and we were friends. I don’t know what we are now.
I find her in the back, hands wrapped around a large glass of red, her hair wild about her face. She looks up as I approach and she can’t quite make herself smile. Neither can I; it’s simply too sad for that. Too hard.
‘Milly.’ I sit across from her. ‘How are you?’
She opens her mouth, and then shakes her head. She takes a sip of wine. ‘I don’t even know,’ she says finally. ‘I feel… flattened. As if a ton of bricks has fallen on top of me, and it’s all I can do to breathe.’
‘I can’t even imagine…’
‘No, you can’t.’ Her words are blunt without being hostile. ‘No one can. I couldn’t, and I still can’t, even though it’s now my reality. Alice’s…’ She stops, biting her lip, before she resumes. ‘You know, for about five seconds every morning, when I wake up, I forget. It’s the most wonderful five seconds. I feel light inside. I think about what we’re going to do that day. I can breathe. And then it all slams into me again, and I remember, and everything is awful. So incredibly awful. It’s a grief I have to keep living, over and over again.’
I have no words, no comfort to offer, and so I just shake my head helplessly and cover her hand with my own. Her face contorts for a second, and then, with a shaky breath, she composes herself.
‘Have you learned anything more?’ I ask after a few moments. ‘Any treatments or medication?’ When I steeled myself to look online, I didn’t find anything, but surely, with the help of specialists, there must be something…
‘No, nothing useful, anyway. Nothing I’d ever want to hear.’ Her voice is so bleak. ‘No treatment, no medication, no hope.’ I flinch. ‘Although that’s not quite true. She’s on some anti-seizure medication now, so that helps a bit. Her consultant Mr Williams says, based on her rate of regression so far, she’ll likely lose her sight within a year, and her motor skills soon afte
r that. She’ll most likely be completely dependent by the time she’s eight or nine.’ She dabs at her eyes, looking at the ceiling so the tears won’t fall. ‘And you know what? At this point that almost sounds like good news.’ Her voice chokes. ‘Because that’s three or four years away, and at least that means she’ll still be here then.’
I press my hand to my mouth, unable to take it all in. It keeps bouncing off, as if my mind is insisting on rejecting this information. No, no. This can’t be true. It just can’t be.
But it is.
‘The hardest part,’ Milly continues, ‘is knowing what to tell Alice. How do you tell a five-year-old that she is going to deteriorate and die? I mean, how?’ Her voice rises and a few people turn to look at us. ‘I’ve bought some books, and I did an internet search on “how to tell your child she’s dying”. Can you even imagine the search results for that?’ She shakes her head, annoyed now, angry tears sparkling in her eyes. ‘But all the advice is so unbelievably lame. Do you know how many times I’ve read “this is a difficult topic to discuss”? Oh, really? You think?’ More people are looking, but I don’t care, and neither does Milly. She is still looking at the ceiling to stop herself from crying, even though tears are trickling down her cheeks.
‘And, of course,’ she continues, ‘I don’t even know how much Alice understands about death. She’s five. Even the doctors don’t know. So, at the moment we’re just taking it day by day, giving her information on a need-to-know basis. At this point we just want to give her as much normality as possible, but that already feels impossible.’ She lets out a shuddering breath. ‘Sorry. That was a lot of information.’
‘You don’t ever need to be sorry, Milly.’
