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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.
