Not My Daughter

‘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.