Not My Daughter

‘Go on, Anna,’ Alice says softly. ‘This is the best bit.’

And so I continue, each word a painful labour of love. ‘“Does it hurt?” asked the Rabbit. “Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”’ Alice nods, clearly familiar with every part of this story, savouring the words. I go on. ‘“Does it happen all at once, like being wound up,” he asked, “or bit by bit?” “It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”’

By this point I can’t keep the tears at bay, because it’s all so unbearably poignant, so tragically bittersweet, so real.

Alice smiles and reaches for my hand. ‘It’s all right,’ she says softly, and I’m amazed that she has the strength – and the grace – to comfort me, even just over a story. ‘It’s all right, because it’s good to be real.’

‘Yes, it is.’ I sniff and manage to smile. ‘You’re right, Alice. It’s very good.’

She smiles at me, and I smile back, and if I could cup this moment between my hands and hold it, I would. Oh, how I would hold on to it forever.

I manage to finish the story without shedding any more tears, and Alice’s eyelids are fluttering closed by the time I reach the last page. ‘Goodnight, Anna,’ she whispers, and my eyes sting with tears.

‘Goodnight, Alice.’ I close the book and just watch her sleep, the gentle rise and fall of her chest, the soft, little breaths. The whole house, the whole world, is hushed and still. At peace.

Will I have another moment like this? Will Milly, or Matt? More than ever, I am aware of how little any of us can know what the future holds, what sorrows we will have to bear, what hope we will find in the most unexpected of places. And yet, in this moment, I am glad – and I am thankful, for everything, even the heartache, the grief, all of it, because it brought me here. It brought us here.

‘I love you, Alice,’ I whisper, and her eyelids flutter once more as I lean over and kiss her cheek, breathing in the scent of strawberry shampoo. She lets out a breathy sigh, and then, slowly, a smile on my lips, I rise and go downstairs.

Epilogue

Milly

Three years later

* * *

‘Look at me, Mummy!’

‘I see you, darling.’ I wave and smile at my son, five years old and so very proud of swinging by himself. We adopted Toby six months ago, after a year of paperwork and planning, assessments and visits. He’s had his challenges, as any child in his position would, but he’s also been a joy, and Alice has loved having a little brother.

The last three years have held so many heartbreaks, nights where I’ve sat on the edge of the bathtub and sobbed till I felt utterly empty inside; days spent in hospital, as Alice adjusts to new limitations and medications; small, daily griefs as well as the huge gaping ones.

But we have also had so many surprising joys, the greatest being that Alice is still with us at all. At eight years old, she has no sight and limited speech, and for the last year and a half she’s needed a motorised wheelchair to get around. She’s still in school, thanks to the indomitable Miss Hamilton, who has championed her cause as the school’s Special Education Needs Coordinator and won battles for us that we didn’t even know we had to fight.

Matt and I have grieved every small loss of Alice’s, even as we’ve celebrated the major milestones. Birthdays, Christmases, writing her name, being able to swim… these have all been hard-won triumphs. There have been challenges and frustrations, far too many, and the worst is when Alice experiences them herself, thinking she is stupid, hating her failing body and mind, railing against the way things are.

But we’ve worked through them, if not past them, drawing together in the midst of the sorrow, and we’ve found support in local groups, as well as the yearly international conference for families of children with Batten disease. We’ve travelled as far as Newcastle and Swansea to meet with other families in situations similar to ours; a year ago we even went to Disney World, in Florida, with a dozen other Batten families, for the most magical week of our lives. So many good things, amidst the sad and the hard and even the impossible.

A few months after Anna came back into our lives, the cancer finally claimed my mother; she was at peace at the end, which is all anyone can ask for. Since her death, my father has come by a lot more, spending many evenings and weekends with us, sharing in our lives.

As for Anna… I don’t know what we’d do without her – and I don’t know what she’d do without us. The last three years has had us entering a deeper friendship than anyone could have imagined, least of all me. Two and a half years ago, Alice was flower girl at Anna and Will’s wedding, a highlight for all of us.

We are all a family, in the truest sense, and even Jack has become more involved, relocating back to the UK two years ago, and seeing Alice as often as he can. It’s happened just as I once said I wanted it to, and yet in a way I never would have imagined or even tried to bring about. If I’d known what lay ahead when I first got pregnant, I think I would have faltered at the first step. But here we are, and despite everything, because of everything, it is good.

‘Alice!’ Toby slows on the swing as he points to his sister, coming through the play park’s gates on her mobility scooter, Anna by her side. Every Saturday they have an ice cream date at Swoon Gelato, just the two of them. It’s the highlight of Alice’s week, and undoubtedly of Anna’s too, and I love seeing them both so happy.

Taking Toby’s hand, I turn towards them. ‘How was the gelato? What flavour did you choose?’

‘Chocolate brownie as usual for this kid,’ Anna says with a smile, touching Alice’s golden hair. ‘Why mess with a good thing?’

‘Why indeed.’ I glance at Alice, who has a smear of chocolate around her lips. She’s been on purely pureed food for a year now, and a feeding tube is surely in her future. But today, she had ice cream, and that is enough.

‘And for you?’ I ask Anna. She has been working through Swoon’s flavours for the last year, rating each one.

‘Amarena Cherry Cheesecake. I told Alice it was six out of ten.’

‘Why only six?’