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‘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?’
