by Kate Hewitt
He turns away, and I blink slowly, taking in each detail with dawning horror. Even after all the research I’d done online, I hadn’t expected her to deteriorate quite so quickly. It’s been less than three months.
‘Matt, I’m so sorry…’ The words are painfully inadequate. ‘Please, let me help you. What can I do?’
He shakes his head, his back to me. ‘I don’t know what we need.’ Which at least isn’t no.
‘I can bring food, do the washing. Whatever…’ I trail off, because I realise Matt isn’t in a place to brainstorm with me about ways to help, and coming here at all was, in some way, selfish. I wanted to see Alice. That’s what motivated me, at a base level. Will was right. I swallow hard as I let go of that deeply held desire, for the first time. ‘The soup is in the fridge,’ I say. ‘I’ll bring another meal round in a few days, if you think it helps. I don’t have to come in. I can leave it on the front step.’
Matt doesn’t reply and after another few seconds I turn around and leave, closing the door quietly behind me. It isn’t until I’m in the car that I see the silhouettes behind the drapes, and I realise Milly has come downstairs. She must have been waiting for me to leave.
Thirty-Three
Milly
I hear Anna close the front door as I wait at the top of the stairs. It might make me a coward, but I wasn’t strong enough for a confrontation with her tonight, not on top of everything else. It’s been two weeks since Matt walked out of the house, and although he came back after a couple of hours, things have changed between us. A tension exists between us that wasn’t there before, but after overhearing his conversation with Anna, the honesty in it, I feel the tiniest bit hopeful that things might change.
As I come downstairs, I see him sitting at the kitchen table, his head in his hands. He looks up as I approach, his expression so very weary.
‘She’s gone.’
‘I know.’
‘How much of that did you hear?’
‘Most of it,’ I admit.
Matt lets out a heavy sigh and drops his head into his hands once more. ‘I’m sorry, Milly. I’m doing so badly with all of this and making it even worse for you.’
My heart twists painfully. I’ve been trying not to feel angry with Matt for the way he’s disengaged, and I haven’t succeeded. It’s revealed itself in a snippy tone, a frosty look, which has made things worse between us, but right now I feel only empathy – and sadness. So much sadness.
‘I want us to stick together on this, Matt. That’s all.’
‘I know. I do, too.’ He looks up again, despairing. ‘You’re so much stronger than me.’
‘I’m not, Matt.’ I put my hand on his shoulder. ‘I’m really not.’
We stay like that for a few minutes, neither of us speaking. It almost feels peaceful, as if this heavy weight that has been bearing down on me has eased, just a little.
‘Do you think I was too harsh with Anna?’ Matt asks eventually. ‘She wants to help.’
‘Then let her help. God knows we need it.’
‘And Alice?’
The question hangs in the air, as if I can almost see the words spelt out. And Alice. Always Alice between us, but for the first time I wonder if it doesn’t have to be that way any longer.
But then Matt shakes his head. ‘It’s too complicated. I can’t think about it, not on top of everything else.’
Which was my excuse for hiding upstairs. Whether she means to be or not, Anna is a complication in our lives that we don’t have the emotional energy to indulge, and I know that she is the one who will pay the price.
Any worry or guilt I feel over that, however, diminishes in light of everything else – dealing with Alice’s constantly changing and growing needs, her medication, her moods. Our sunny girl has periods of darkness, just as we do – days when she doesn’t want to get out of bed, nights when she can’t sleep. Sudden rages when she realises there is something else she can’t do; yesterday it was brushing her teeth. She threw the toothbrush at the mirror, and then started hitting it with her fists, causing it to crack. We ended up in A&E, getting three stitches put in her right hand where the shattered glass had cut her.
Every day brings itself a new challenge, and yet also surprising graces.
One afternoon in early March, I am standing by the school gate, avoiding everyone as usual, which seems to be the easiest option for both me and them, when another mum approaches me.
‘You’re Alice’s mum?’ she says with a smile, and I nod, because everyone knows that now.
‘I’m Jane, and my daughter Violet is in year one. I was wondering if Alice could come over for a play date? Although they’re not in the same class, they play together so well.’
I stare at her dumbly; it is the very last thing I expect. In fact, lately I’ve been wondering if it’s worth keeping Alice in school at all, with all the challenges, and the way some of her classmates have started to look at her. They’re too young to understand, or to filter their words.
Why is she walking funny? Why can’t she talk normally? Why is Alice so weird?
‘A play date…’ I say slowly, because I’m not sure that’s possible.
‘I know there are additional needs,’ Jane says gently. ‘And if you want to come along too, that’s absolutely fine.’
Just then Miss Hamilton opens the door, and after the first rush of children, I see Alice walk unsteadily out, hand in hand with a little girl with brown hair and a gap-toothed smile I don’t recognise.
‘That’s Violet,’ Jane says proudly, and as the two girls come closer, I realise Violet has Down’s syndrome. Jane confirms it with her next words. ‘They got to know each other, because they both have support workers,’ she explains. ‘And they ended up doing things together.’
I nod, fighting a lump in my throat. So the special need kids get lumped together. It’s to be expected, and yet I resist the notion. I don’t want that for Alice, and yet that seems wrong.
‘I know it’s hard,’ Jane says gently. ‘It’s not what you wanted.’
Which makes it sound as if I placed an order for a child the way I would for a meal in a restaurant, and picky customer that I am, I’m going to send it back. ‘It’s what is,’ I tell Jane, making my voice firm. ‘And I’m sure Alice would love to have a play date with Violet.’
The play date is, of course, a big deal. Alice has had only a few play dates in her entire life, back in preschool, and I always went along. This time, however, she is insistent she wants to go by herself, even though I am terrified that something will happen and it will all go wrong.
‘Violet’s mummy is going to take us from school,’ she tells me. ‘And we’ll have chips for tea!’
Her words have become more slurred in the last month, and sometimes it’s hard to understand what she says. I wonder if Jane will be able to understand her, and I try to quell that persistent tremor of fear. ‘It sounds amazing, Alice.’
But I am still in a ferment of anxiety for the whole day of the play date; I have to resist walking to the school gate, just to check that the pick up goes off all right, at the end of the school day. I tell myself this is luxury, having time to tidy up, pay some bills, look into the conference for Batten families that is in Florida in July. The hours tick by, terribly slow, and finally, finally, it is time to pick her up.
I hear the squeals of laughter before I’ve even turned into Jane’s drive. I hesitate, stunned and more than a little apprehensive, as I see them both jumping up and down on a trampoline in the front garden. Should they really be doing that…? Alice falls on her side, and I hasten forward.
‘Alice…’
‘Hey, Mummy!’ She sounds so happy. It stops me where I am, because I can’t remember the last time Alice sounded like that.
‘They’ve had a fabulous time,’ Jane tells me from the front door. ‘I’ve been keeping my eye on them – I hope you don’t mind?’
I feel disorientated, because part of me does mind, and yet Alice is s
o happy. She’s doing what a million other girls her age can do, and who am I to stop that? To hover?
‘I’m glad she’s having fun,’ I finally say, and Jane smiles in understanding, as if she’s witnessed my entire thought process.
‘Come in and have a cup of tea.’
We watch the girls from the front window as we sit in the lounge and drink tea, and I can’t believe how wonderfully normal it is, how much of a break.
Jane doesn’t talk about Batten disease or Down’s syndrome or any of the challenges associated with either, and that is a relief. We’re just two normal mums, with two normal children. And as we sit and chat, I realise I need to completely redefine what normal is, because Alice is normal, just as Violet is.
Listening to them giggle and squeal outside, you wouldn’t be able to tell that anything is wrong with them and, for the first time ever, I wonder if there isn’t.
Eventually the girls come back in, tired but happy. Jane has them wash their hands at the sink, and I watch as they fumble through it, dropping the soap, splashing themselves, but they do it. Maybe I should let Alice do more, even if it’s messy and difficult. Maybe it would help her as well as me.
I feel as if I’ve opened a door into a whole new room I didn’t know even existed, filled with sunlight and possibility. Since Alice’s diagnosis, I’ve been living in the dark, head down, always pushing through, soldiering on, but now I wonder if it has to be that way. If maybe, just maybe, we can enjoy more than endure.
But then I remember that Violet does not have a terminal diagnosis. Violet is not going to lose her sight, speech, and mobility in the next few years. Violet is not destined to die when she’s still a child. Alice’s diagnosis is different from Violet’s; there is no escaping that. But for now, they are little girls and they are friends, and that is enough.
‘If you ever need to talk,’ Jane says as we’re leaving. Her smile is kind without being pitying. ‘About anything.’
‘Thanks, I’m sure I would. And perhaps we can have Violet over one afternoon.’ I realise I mean it, that I would like to do that.
‘That would be lovely,’ Jane says, and both girls chime in with their delight at the prospect.
‘You had a good time?’ I ask Alice as we walk home hand in hand, darkness already falling.
‘Yes, Mummy, I really did.’ Alice turns to me appealingly. ‘Can we get a trampoline?’
My instinct is that no, we cannot get a trampoline, because it’s too dangerous, and in a few weeks or months or maybe, just maybe, years, Alice won’t be able to use it anyway. But then I am appalled at myself, at my narrow, negative view, because Alice can use it now.
‘Yes,’ I tell her with a smile. ‘I think that sounds like a fabulous idea.’ And then because I want to grab life and happiness while I can, I add, ‘Let’s order one tonight online.’
When we arrive home, there is a foil-covered casserole dish lying on the front step. There have been a few of these nearly every week, and they’re all from Anna. As I pick it up, Alice asks me who it is from.
‘Just a friend,’ I say, and we head inside.
‘My friend? My friend Violet?’
‘No, a friend named Anna.’ Saying the words feels momentous, but of course Alice doesn’t register their import; she just keeps asking questions.
‘Anna? Do I know her? Has she met me?’
I keep my gaze on the casserole as I answer. ‘Yes, you met her a long time ago, when you were a baby.’
‘A baby? Not since then?’
‘No,’ I say heavily. ‘Not since then.’ I pause and then look up. Alice is standing in the middle of the living room, listing to one side like a ship in a storm, blinking at me from behind her thick glasses, but she’s smiling, and I realise that even though this terrible disease has stolen so much from her, it can’t steal that. She is still Alice. She will always be Alice.
‘Alice,’ I say. ‘Do you want to meet her sometime? Our friend Anna?’
Her face lights up as she nods. ‘Yes, oh yes!’ she cries, even though she doesn’t know anything about Anna. She’s always been up for meeting a new friend. ‘I want to meet her. Can we meet her today, Mummy?’
‘No, not today,’ I say, the words feeling important and necessary, a promise I am making not just to Alice, but to myself. ‘But soon.’
Amazingly, I am feeling optimistic, for the first time in what feels like forever. The sun is shining, and Alice has a friend. For once the future doesn’t feel as if it is yawning in front of me, dark and terrible. A few weeks ago, Matt and I started therapy again, and we are stronger than ever. Finally there is a break in the clouds of our lives, and for a few moments I allow myself to enjoy the sunshine, to breathe, to be.
Then, that night, Alice has a grand mal seizure, and everything changes again.
Thirty-Four
Anna
The soil is dark and rich as I plunge my hands into it, turning over the earth to plant the tiny seed. It is late May, and Will and I are working on his uncle’s allotment; his cancer returned and it’s unlikely he’ll be able to work it, at least this year.
It’s been good for us, working together, growing things. We’ve cleared away all the winter’s debris and have planned raised beds of onions and lettuce, as well as a new chicken coop and six lovely little chicks, fat and yellow. It’s a fresh start, something I think we both needed, especially me, after all the sorrow of the winter.
Five months on from Alice’s diagnosis, and I have begun to learn to let go. It’s been a slow process, a painful separation of myself, and yet I know it’s been necessary. It’s been five years since I last saw Alice, and I’ve finally stopped looking for her.
Will, despite or perhaps because of his initial concern, has been unwaveringly supportive. I make meals for Matt and Milly once a week or so, and every so often I send her a text, just to let her know I am thinking of her, without any pressure or expectation.
After five years, I’ve finally relinquished the expectation that I am somehow owed something from Milly. And while Alice is never far from my thoughts, she doesn’t dominate them.
‘Tea break?’ Will suggests, and I straighten, easing the crick in my lower back. We’ve been working for several hours, and the plot is taking shape. All around us people are busy on their own strips of land, raking, hoeing and planting. The world feels lush and brimming with possibility, with new growth and fresh starts.
‘Sounds good.’
We troop into the little shed, where we’ve now spent so many happy hours. Will lights the propane stove while I fill the kettle at the outdoor tap.
‘I’ll make it,’ he says, taking the kettle from me when I return. I shrug and sit down, grateful to have a bit of a rest.
It’s a lovely, sunny day, and I tilt my head to catch the light from the open door, my eyes drifting closed as I listen to the drone of bumblebees, someone calling in the distance.
‘Here you go.’ Will sounds a bit hesitant, even nervous, as I open my eyes and see a tin mug of tea in front of my face.
‘Thanks.’ I take a sip while Will watches me.
‘You looked as if you’d fallen asleep.’
‘I almost had.’ He’s still watching me, and I let out a little laugh. ‘What is it?’
‘Nothing.’ Abashed, he looks away. I glance down at my mug, and I start at the sight of something floating in the hot liquid. Something bright and glittering.
‘Will…’
‘What?’ He looks entirely too innocent, and I laugh incredulously, unsure even now. Carefully, wincing a bit because the tea is hot, I fish the ring out of the mug – because it is a ring, a diamond ring.
When I look up, Will is kneeling down in front of me. ‘Anna, I love you so much. Will you marry me?’
I laugh again, still incredulous, and so joyful. ‘Yes… yes, of course I will.’
He slides the ring onto my finger and then I grab his hands and pull him to his feet, as he kisses me. ‘Shall we set a date?’ he asks.<
br />
‘Already?’ I laugh. I still can barely credit the ring sparkling on my finger.
‘The sooner the better, as far as I am concerned.’ He gives a playful grimace. ‘Neither of us are getting any younger, I am reluctant to admit.’
‘True.’ A sudden, terrible thought jolts through me, and Will sees it in my face.
‘Anna, what is it?’
‘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.’