by Kate Hewitt
‘That’s what I keep telling Alice.’ She gives me a twisted smile, her face crumpling a bit. ‘She keeps apologising for being clumsy and things. It breaks my heart.’ She thumps her breastbone. ‘I feel it, right here, every time, breaking.’
‘I can’t help but feel this is my fault,’ I blurt. I have to say it, even though I don’t want to make this about me. It has been weighing on me ever since my mother told me about my brother. ‘If I hadn’t offered…’
‘Oh, no, no, no.’ Milly shakes her head firmly. ‘I can’t go down that route, Anna. I can’t let myself think that way. Because if you hadn’t offered, and I hadn’t accepted, then I wouldn’t have had Alice. And even now, especially now, that’s unimaginable.’
‘Do you really feel that way?’ I ask quietly. I want her to. So much, I want her to.
‘I have to.’ Milly gazes at me brokenly. ‘What’s the alternative? To wish she’d never been born at all?’ She leans forward, suddenly urgent. ‘Do you wish that?’
‘What…?’
‘I’ve thought about that day a thousand times, Anna. A million. How it all unravelled so fast, before any of us could do anything… it felt as if I was watching a train crash in slow motion and I couldn’t do anything to stop it, but at the same time I was the one driving the train.’
‘Yes.’ It’s hard to get any other words out. I never thought I’d be sitting here with Milly, talking about that day. ‘I never should have…’ I begin, then stop, trying to frame my words in a way that is truthful to what happened as well as to my own feelings.
‘No, I shouldn’t have,’ Milly says. ‘I know we put you in an impossible situation, Anna. We asked too much of you. We didn’t give you any leeway, any permission to feel something, or be something, other than our oh-so-helpful friend.’
‘And I took advantage,’ I admit painfully. ‘I was so besotted with Alice. I didn’t expect it… the strength of how I felt. I really didn’t.’
‘And I didn’t expect not to feel that.’ Milly looks down at her drink.
‘I wouldn’t have gone through with it,’ I blurt. ‘I’ve thought and thought about it, and I really don’t think I would have.’
Milly nods slowly, and I can’t tell whether she believes me or not. ‘I don’t suppose it matters anymore.’
‘Still…’ I feel I have to say something, I want to, although I’m not sure what. ‘I’m sorry, Milly,’ I finally whisper. ‘For all of it.’
‘So am I. For so many things.’ She shakes her head and lets out a long, low breath. ‘Why didn’t you tell me about, you know, your termination? Was that why you bombed your exams? It must have been…’
‘It was two weeks before.’
‘I can’t believe I didn’t know.’ She grimaces. ‘I can’t believe I didn’t ask.’
‘I didn’t want you to know. I was ashamed.’ I look down, at my untouched drink.
‘Who was it, Anna? The father? I didn’t even know you were seeing anyone. I feel as if I’ve had to recalibrate our whole friendship, based on all the stuff I didn’t know—’
‘I wasn’t seeing anyone.’
Milly frowns. ‘Not even… I mean, there was someone. Wasn’t there?’
I shake my head. ‘Not in the way you think. It was…’ I blow out a breath. ‘Mr Rees.’
‘Mr Rees?’ Milly’s shocked and horrified expression is almost comical. ‘Our history teacher?’
‘The very one.’
‘But he was so…’
‘Old? Unattractive? Yes.’ I try to smile, but I can’t quite manage it, so I take a gulp of wine instead. Even twenty years on, with all the therapy and healing, this is still hard.
‘It wasn’t… I mean, he didn’t…’
‘It wasn’t rape, if that’s what you mean,’ I say in a low voice. ‘At least, he wouldn’t have ever thought it was.’
‘Oh, Anna.’ Milly reaches for my hand and squeezes it. ‘I should have known. You should have been able to tell me. I feel as if I wasn’t a good friend to you at all.’
‘You were, Milly.’ Over the years, I’ve tried to cast her as the villain, big bad Milly who took me for granted and used me in the worst way, but it’s never had the ring of authenticity. It certainly doesn’t now, no matter how guilty and appalled Milly feels.
She shakes her head. ‘I should have made you tell me. Instead, I just dragged you along with my plans, without even considering what you might have been through.’
‘If you dragged me along with your plans, it was because I never had any of my own. If you hadn’t found me sofa-surfing with strangers, I don’t know where I would be now.’ I shudder at the prospect. ‘I really don’t.’
‘Still, I should have done more for you.’
‘You did a lot. And even if you’d pressed and pressed, I might not have told you.’
‘I’m sorry for what you went through. I really am.’ She shakes her head and then drains the last of the wine. ‘What a pair we are.’
The words warm me, in their way. We’re a pair again. At least, I hope that’s what she means, and the possibility that it is emboldens me to ask, ‘Milly… do you have any photos… of Alice?’
Milly hesitates, the glass half-raised to her mouth.
‘May I see them?’ I ask, trying not to sound too desperate. Surely she wouldn’t deny me a photo, not after everything we’ve just said and shared?
‘Let me see if I have a decent one,’ she says, and starts scrolling through her phone, the screen angled away so I can’t see it, while I hold my breath. After a few seconds, she shrugs and puts the phone down on the table in front of me. ‘Screw it, you might as well see them all. It’s only the last few months, though.’
Hardly daring to breathe, I start to scroll through the photos: Alice on a beach, grinning with a drippy ice cream cone; the first day of reception in a smart new hunter-green uniform; curled up on the sofa, absorbed in a book. I swipe and swipe again. Alice tucked up in bed with a million teddies. In wellies, splashing in puddles. A perfect childhood encapsulated in these precious seconds. Gazing at her, I’d never know she has a terminal disease. Gazing at her, I can’t help think, she looks just like me. The same hair and eyes, the same dimples. The same lanky build and slightly sticky-out ears.
‘She looks just like you, doesn’t she?’ Milly says with a wry laugh, echoing my thoughts. ‘Perhaps that’s part of the reason I’ve thought of you so often.’
‘Is it hard… having her look like me?’ I ask tentatively. This is strange, new territory, the two us talking about Alice.
‘Sometimes. Sometimes I’ve wondered why I mind so much.’
Reluctantly, I push the phone back to her. I could look at those photos forever, study each one and memorise every detail. ‘Thank you.’ Milly nods, and I make myself ask, because I want to so much, ‘Could I… could I see her sometime? Meet her?’
Milly’s expression freezes and I know that it’s a step too far. Never mind the drinks, the apologies, the heartfelt conversation, the photos, she still doesn’t want me to see her daughter.
‘I’m sorry, Anna. Matt and I talked about this already—’
‘It’s okay,’ I interject. I don’t want to hear her excuses.
‘It’s just, Matt is reluctant. He doesn’t want to complicate things, especially when Alice’s health and treatment, such as it is, has to be paramount.’
Complicate things? What does he think I’m going to do? But, of course, I have to respect their wishes. Perhaps it was selfish for me even to ask. ‘I understand,’ I manage, sounding brittle. ‘I shouldn’t have asked.’
‘No,’ Milly protests, but she leaves it there.
I wish I hadn’t asked, because now the door has closed forever, and I was the one to have shut it.
Thirty-One
Milly
I’m sorry.
That’s what Mr Williams said when he confirmed that Alice had Batten disease, having given us all the awful details: that she has a variant called CLN5, that a
ffected children begin to exhibit symptoms after the first few years of life. He tells us it’s likely Alice started exhibiting as long as two years ago. Children with CLN5 develop vision and cognitive issues, along with behavioural problems, and they gradually lose the ability to talk or walk. They usually live into their late childhood or teenage years. I can’t imagine a worse prognosis; I’d almost rather Alice was hit by a car than this slow dwindling to death. And all Mr Williams can say is, I’m sorry.
It reminds me of Meghan, all those years ago, offering the same kind of apology. I’m sorry you have premature menopause. I’m sorry you can’t have a baby. And now this. I’m sorry your child is going to suffer and die.
I’m sorry. I hate those two words. They don’t do anything. They just remind you that you are the one who needs to be felt sorry for.
Matt and I walk around in a haze of grief for a week after the news. We don’t tell anyone; we can’t. Telling someone – my parents, Alice’s teacher, Anna – will make it too real, and it is enough, it is too much, to absorb it ourselves, the repercussions going on and on, realisation after realisation. We won’t see her get married, or finish school, or even discover who she is. We might not even see her finish her first year of school.
Although children with Batten disease can live into their teens, many die far sooner. There are no guarantees except one, and it is the worst of all.
Then, after a week of dazed grieving, I kick into gear. I realise that the best and maybe even the only advocates for Alice are Matt and me, and we need information as well as strength to handle whatever is coming next.
So I spend hours on the internet, learning facts, memorising statistics. I read about possible therapies and treatments and how to arrange for an Individual Educational Plan at school. I join the local support group for parents of children with neurological disorders, as well as the international organisation for families with Batten disease. I devour books and blogs and JustGiving sites.
Then, after gorging on a glut of information, of hearing people’s heart-breaking stories and sitting in front of the computer, tears streaming down my face as I read about their bravery, I have to stop. I am overwhelmed by Batten disease, by how it has taken over Matt’s and my lives along with Alice’s. It has become my new hashtag, the huge thing in my life; forever I will be known as the mum whose child has Batten disease. Whose child died of Batten disease.
Sometimes I whisper it to myself, just to try the words out. To get used to the idea, because it is coming and I know I need to be prepared, even as I know no parent can ever be prepared for that. Even as everything in me rails against it.
And so we have entered into the unwelcome reality of life with a terminally ill child. Alice is on a dozen different prescriptions to help alleviate some of her symptoms, even as they create new ones. She has occupational therapy three times a week, and we’ve been assigned a social worker to help us navigate this brave new world, but I don’t like her cloying manner and Matt won’t talk to her at all.
Of course, we have to tell everyone – a dozen conversations of grief and tragedy played over and over again, with neighbours, friends, teachers, family.
My parents are the hardest. My mother looks as if she is shrinking right in front of me, her whole self collapsing inwards. ‘To think I might outlive my granddaughter,’ she whispers. ‘Oh, Milly. Oh, Alice.’
‘Don’t say that, Mum,’ I beg. ‘Please, not yet. I’m not ready for that yet.’
‘Oh darling, I’m sorry. I shouldn’t have said… I didn’t mean…’
‘It’s all right.’ I wave her protests away as she fights tears. No one knows what to say, me least of all.
‘Are you going to tell her?’ Mum asks in a low voice, even though Alice isn’t even there. I’ve driven over while she is at school, Matt at work.
‘Right now we’re telling her as little as possible. We want things to be normal for as long as they can.’
And the truth is, we still have no idea how to talk to Alice about this. How do you tell your child she is going to decline and die? How do you even begin to have that conversation? I’ve searched the internet but have found only pithy bits of advice, and then I bought a load of books on Amazon, memoirs and how-tos, but after just a couple of pages, I found I couldn’t read any of them. It was too much, too hard. And, thankfully, it isn’t time yet.
But the reality is, and becomes clearer every day, that we will have to tell her someday, perhaps someday soon. Each morning seems to bring a new challenge – putting on her socks, getting a spoon to her mouth, remembering an obvious word like cat or table. I see the frustration in Alice’s eyes, the way she becomes angry with herself, and I want to cry.
We have told her she is ill, and that all the things she is experiencing are part of the illness, and also that she has some medicine to help with it. Alice hasn’t asked any more questions. She trusts us – to take care of her, to keep her safe, and we are trying, oh how we are trying, but ultimately we can’t, and that still feels impossible to live with.
‘What can we do, darling?’ my father asked. ‘How can we help?’ He meant well, but my parents are both elderly now and my mother’s health has never recovered properly. Besides, there is nothing anyone can do. That is what hurts most of all.
And yet people still try – casseroles appear on our doorstep, and cards in the post, and a well-meaning mother at school, when she hears about it, informs me quite cheerily that she is organising a ‘fun run’.
‘For charity, to go towards research,’ she explains uncertainly; the look on my face must be terrible. I don’t want a fun run. There is nothing fun about this.
‘Thank you,’ I manage to say. I know she means well. Everyone does – from the parents at school to our neighbours to the people who matter most – my parents, Matt’s family, Anna, Jack. Jack just hugged us when we told him; there were no words.
As for Anna… I think back to the drink we shared, how nice it was, to be together again, and I wonder if I should have let her see Alice, even though I know Matt would never allow it. Then I decided I couldn’t think about it anymore. I am second-guessing so much already; I don’t have enough energy to worry about Anna.
Although Matt and I are in this together, it feels as if we are floating in our own isolated bubbles of grief, handling each day’s challenges in our different ways. Matt never wants to talk; he doesn’t want to make a plan, the way we always have before, complete with bullet points and to-do lists.
I understand his reluctance, because God knows I feel it, too. Who wants to discuss how best to handle Alice’s toileting needs at school, since she is struggling to manage by herself? Or what foods she is able to eat now that she is having trouble chewing? And yet we have to, because we have to make decisions, more and more every day, in order to help Alice.
‘I feel as if I’m alone in this, Matt.’ We are sitting at the kitchen table one rainy evening in February, and Matt has an obdurate look on his face I’ve come to know well. ‘I need your input.’ We have been discussing the school’s Individual Educational Plan for Alice, and how it needs to be amended – again. Miss Hamilton has been amazing, but even she struggles to keep up with Alice’s increasing needs.
‘Why do you need my input?’ He sounds surly, and I tense. ‘It doesn’t change anything.’
‘What is that supposed to mean?’
He shrugs, not looking at me. ‘Whether Alice has help cutting up her food, Milly. It doesn’t change anything. It doesn’t change what’s going to happen to her.’ Already he’s looking at his phone, one thumb scrolling mindlessly, the conversation over.
‘Do you really mean that?’ I ask quietly. ‘You don’t think this matters?’
He looks up, his expression set, almost angry. ‘She’s going to die, Milly. She’s going to decline and die – it’s just a matter of how and when.’
My hands curl into fists on the table. ‘And meanwhile her quality of life doesn’t matter? You don’t care about that?’
‘What quality of life?’ he bursts out. ‘Do you think it seriously matters that she learns her letter sounds when she’ll be blind within a year? Or that she has her food cut up for her when, according to Mr Williams, she’ll be on a liquid-only diet by the time she’s seven? Do you really think any of this matters?’
‘It matters to Alice.’ My voice is shaking. ‘I thought we agreed we wanted to keep things normal for her as long as possible.’
‘Nothing about this is normal.’ He pushes away from the table so hard it moves across the floor, and I have to stop it from hitting me.
‘Matt—’
‘I can’t do this.’ The words come out low, flat, despairing. ‘I can’t do this, Milly.’ His back is to me, one hand raked through his hair.
‘What do you mean, you can’t do this?’ I’m afraid to dissect what he’s telling me. ‘We have to do this, Matt.’
‘It’s too hard.’ His voice breaks. ‘Seeing her this way… losing something almost every day… it’s too hard.’
I stare at him, caught between the wild grief I know he feels and anger that he’s making this about him.
‘And how do you think Alice feels? She’s the one who has to endure it all. For her sake we have to be strong. Please, Matt.’ I don’t think I can do this without him, and yet I realise I already am. Over the last few weeks he’s withdrawn, not just from me, but from Alice. ‘Matt, please. I need you. Alice needs you.’
He shakes his head again. ‘I’m sorry…’
I can’t stand to hear that stupid sentiment yet again. ‘Don’t be sorry,’ I snap. ‘Be strong. Do you think this is easy for anyone? I feel as if I’m bleeding out, every single day, and I have to hide it, act like I’m coping when I’m not. But I do it, Matt, because if I don’t, what will happen to Alice? Don’t you want whatever time she has left as a normal little girl to be happy for her? Don’t you want these memories to count?’
‘Count for what? The ending is still the same.’
‘But the way we get there can be different.’ I think of Anna’s mother, who torpedoed her whole life, and Anna’s childhood, in her grief. I won’t be like that. ‘These moments matter, Matt. They have to.’
