Not My Daughter

‘Do you want children?’ I ask bluntly. We’ve never spoken about it before, even when we’ve talked about Alice.

‘If they happen, they happen,’ Will answers after a moment. ‘What I really want is a lifetime with you.’

‘Yes, but…’ I twist the ring on my finger. ‘You know I have this gene? For Batten disease? And apparently, there is a fifty per cent chance I’d pass it onto my child.’ As I’ve already done once.

Something flickers across Will’s face, and I know he hasn’t thought of this before. I hadn’t either, amazingly. I’d been so focused on Alice, and in any case, even when Will came into my life, I never really thought I’d have children of my own.

‘Well, I most likely don’t have the gene,’ Will says, his tone determinedly reasonable. ‘And I can be tested for it, at any rate.’

‘But even so, any child we have might be a carrier…’

Will gives me a sympathetic smile. He knows this is hard for me, stirring up old anxieties and longings. A child still feels like an impossibility, something that’s almost forbidden for me. A child of my own. Can I even dare to dream…?

‘Surely we can cross that bridge when we come to it, Anna?’ Will says gently. ‘I know it’s a concern, of course it is, but this is the start of our life together. That’s what we can focus on now.’

‘Yes, I know. And I’m so happy…’ But thinking of a child makes me think of Alice. How is she? How are Milly and Matt coping? I don’t know. Perhaps I never will.

My lower lip wobbles and he draws me to him. I tuck my head under his chin and close my eyes, savouring the steady warmth of him next to me, amazed that he is going to be my husband.

‘I know she’ll always be part of your life,’ he says softly and I let out a little hiccoughy sigh.

‘How did you know I was thinking of her?’

‘Because I know you.’ He rests one hand on my back. ‘Have you heard from Milly lately?’

‘No, I never hear from her, besides a text to thank me for a meal.’ I sigh. ‘I don’t expect anything else. I know she’ll tell me if…’ I can’t say it. I wrap my arms around him and tilt my head up to meet his concerned, crinkled gaze. ‘Let’s get married this summer.’

‘So soon?’ he teases.

‘Yes.’ I sound firm and I feel determined. I must shed these old sorrows like the ghosts they are, for Will’s sake as well as mine. They don’t need to haunt me any longer, even though I know they will always have a place in my life. ‘Like you said, we’re not getting any younger. Why wait?’

Two weeks later, Milly calls me.

Thirty-Five

Milly

A hospital at night feels like a ward of ghosts. It’s early June, and outside the world is in full bloom, the cherry blossoms masses of pink puffballs, the flower beds laden with heavy-headed tulips, but inside everything is darkened and silent, save for an occasional cough, the squeak of a trolley wheel. I feel invisible, drifting down the corridor, stretching my legs before I return to sit by Alice, who is, thankfully, sleeping.

We’ve had half a dozen overnights in the hospital since that first grand mal seizure back in March, to adjust her medication, usually after she’s had another seizure. It takes a few days to work out the right dosage, and then we’re back home, trying to restart this strange new life we find ourselves living.

And it is strange – a deep sadness punctuated with moments of joy, as we adjust to the ever-changing reality of loss. She is still in school, and her best friend is Violet, and her belly laugh makes me smile the way nothing else can. She’s Alice. Amazingly, wonderfully, she still is our Alice.

I slip inside her room and stretch out on the makeshift bed they’ve set up next to her. Matt and I have been taking turns staying the night, and tonight it is mine. Looking at her now, you wouldn’t even know she was ill at all, much less so seriously – her hair is spread out across her pillow in a golden sheet, her lashes fanning her pale cheeks.

Watching her sleep, you couldn’t tell that her vision loss is now at seventy per cent, or that she can no longer hold a pencil or spoon. If you didn’t notice the crutches propped in the corner of the room, you wouldn’t realise she couldn’t walk unassisted. If you didn’t hear her speak, you wouldn’t know that she slurs some words and forgets far too many others. Watching her now, you wouldn’t know anything was wrong with her at all.

And maybe nothing is. Maybe this is who Alice is, who she has been all along. It’s a strange and unsettling thought that I sift through my mind, looking for the gold amidst the dross. Maybe this is who Alice was always meant to be, teaching us, loving us, helping us to be strong and thankful even as we grieve and rail.

I shift on the bed, trying to get comfortable even though I know it’s pointless. I hardly ever get to sleep during these hospital visits, tensing at every distant noise, or just straining to hear Alice breathe. I should be used to it now, used to the whole sorry load of this wretched disease, but I’m not. Even now, I feel a ripple of surprise – Wait, really? Alice is sick? When did that happen?

Sometimes, in these long, lonely nights, I’ve let myself play the pointless what-if game, a form of self-torture I try not to indulge in. What if I hadn’t had premature menopause? What if we’d gone with an anonymous donor? What if we’d adopted? What if… Then Alice wouldn’t be here at all. She wouldn’t exist.

And when I think like that, I make myself ask the hardest question of all. Would that be better? Would I – could I – wish that, knowing what I do now, bracing myself for all that is still ahead, all we – and Alice – will have to suffer and endure?

Alice stirs in her sleep and I lean forward to smooth the hair away from her face, my heart aching with love for her, just as she is now, as she’s always been. No, I could not wish that.

‘Mummy?’ Alice’s voice is disembodied in the darkness, the voice of a ghost.