If I Should Lose You Read online

  ‘On my way.’

  It’s nice, I suppose, to not have had to explain. To know that four words are enough. It is a kind of intimacy. Biliary Atresia. The sound of the words makes me think of sea dragons with their oddly shaped but delicate limbs floating like fronds of leaves through a forest of seagrass, hiding until you get just close enough to see their more deliberate movements. That is not what I thought of when I first heard the words after Addie was born. Then, I thought of witch’s fingers probing her liver, finding each bile duct, destroying them, and then wriggling with joy as the bile built up, unable to flow into the intestine, and instead killing off her liver.

  The next words were Kasai Procedure, which sounded distinctly more medical. Japanese perhaps, highly technical with a strong scientific pedigree, something to believe in, to trust to fix the problem. And it is Mr Kasai and his procedure that almost made the witch’s fingers disappear and the sea dragons take their place. But now they have all failed and we are left with varices: a scarred liver and constricted veins that have weakened and swollen to the point where Addie is vomiting blood. These are the facts that the doctor concentrates on when he explains it to me. Not the ability of a sea dragon to camouflage itself so perfectly within an ocean of weed.

  I have just a few moments with Addie after the doctor leaves and before Paul arrives. I feel like the kin I see at the hospital every day as I hover by her bed, unable to pick her up and hold her and unwilling to resort to the two obvious alternatives, hair-stroking and hand-holding because I know that when she hurts herself, these measures will not stop the tears. I move to lie on the bed beside her, to press my forehead against hers. But Paul comes in and I stop because it is forbidden to lie on a patient’s bed in PICU and I want no one to see me break rules that I enforce in my work every day.

  Paul walks over to Addie and kisses her cheek. ‘Not feeling so good baby?’ She doesn’t reply of course. She’s sedated and transfused with fluid and blood.

  So I reply on her behalf. ‘It’s varices. The cirrhosis is worse. She needs a transplant.’

  A transplant. It is simply the process of moving something from one place to another. These are two words we have known, since Addie was born, that we would have to face. Yet we have not, because that kind of conversation requires the closeness of an evening meal for two where we sit side by side and drink champagne, not a half-shouted string of instructions as I run out the door to work or to jog or to visit a gallery; not an always interrupted exchange over a dinner of spaghetti bolognaise where my focus is on cajoling two girls to eat; and not a casual enquiry about one’s day as we sit on the sofa at night in the kind of stupor that can only be indulged in once the children are in bed.

  Paul’s reply is the same as my own to the doctor: nothing. A vast expanse of no words. Because to even start to speak about it is to know that it will never end, that life for some indeterminate time will be governed by something so fickle as the death of another child with a perfect liver and the ability to keep Addie in a space of being sick enough to be near the top of a transplant list but not so sick that she dies of waiting.

  Paul falls into a chair and rubs his face with his hands as if that could erase the word transplant. He leans forward, elbows on knees, chin held up on both sides by his palms. ‘I wanted her to be older when this happened. How soon?’

  ‘She’s not critical enough to be at the top of the list.’ Best Match, Best Outcome, Most in Need: phrases that I use every day at work. That is how a patient is chosen to be the one lucky enough to receive the too few hearts or lungs or livers that might, through someone else’s bad luck, suddenly become available. But these phrases that rule my days do not seem to apply to my daughter; I want to bend the words in some way, to change them, because I know from looking at Addie that she is unlikely to be deemed Most in Need. At this stage.

  ‘How much sicker does she have to be?’ Paul asks.

  ‘She’ll have an endoscopy when she stabilises. That could cause more bleeding or an infection which would make her a lot sicker.’

  ‘It was a rhetorical question, Camille.’

  I know it was, I want to say. And I also want to reach over and pull his hands away from his chin, watch his head jerk forward, shock him into seeing the reality of what a transplant really means. Because how do you explain to a journalist who works with something as pliable as words, who thinks that because he has been through the jaundice, the poor weight gain, the Kasai, the cholangitis, the fevers, the stays in hospital, the IV antibiotics, that he has seen the worst, that this time will be the same as all those other times when he has not and it will not?

  I speak to him like a relative at work, small bites of information, not too strong, not too much. ‘This is not as bad as it gets. She’ll need a liver in the next couple of months.’

  ‘Can she come home?’

  ‘I hope so. But not for a while.’

  A code blue is called on another child in PICU. There is a lot of beeping and rushing and shouting. So I move onto the logistics, talk louder than the sounds. ‘Someone will need to be with her all the time. We’ll need to organise it with work so we can be here in shifts. And be with Rosie as well. She’ll feel left out.’

  Paul’s gaze sweeps the room, as if he has remembered for the first time that he has another daughter. ‘Where is Rosie?’

  ‘With Julie. She was with Julie anyway. I was at work today, remember?’

  Paul nods briefly, as if not caring about this part of the conversation, so I press on. ‘Let me know when you can be here and I’ll put it into our diaries so we know when each of us is supposed to be here, when we’re supposed to be with Rosie and when we can work. I’ll get Julie to work an extra day or two as well.’

  Again, the response from Paul is a nod.

  I say, in order to stir some kind of action in him, ‘We can get Louisa to help. And your mum. And Michelle.’

  Paul leaves to call his mother and sister and I wonder why it couldn’t be a kidney that she needed, something easier to find, not a liver, which is like searching for one specific piece of salt within the vastness of the ocean.

  THREE

  ‘Louisa, it’s Camille.’

  The woman who raised me, my father’s sister, knows straight away that something is wrong.

  ‘What’s happened?’ she asks.

  ‘It’s Addie.’ I tell her what’s wrong and ask her to help with the bedside roster. She agrees and says, ‘Make sure you have some time with Paul too. Otherwise you won’t see him, except when you’re both flying in and out of Addie’s room.’

  I try a joke. ‘I only see him flying in and out of the house now.’

  ‘You’ll need each other.’

  That should be true. And I do need him, because I know I can’t be by Addie’s bed all of the time. I need to look after Rosie too. But when I left him in Addie’s room to make my phone calls I did wonder if it would be easier if he was not there, someone else to comfort, someone else to explain things to, someone else to stop me from lying down beside my daughter and tucking her into my arms to make everything better.

  I change the subject. ‘Sarah called last night. She wants me to curate an exhibition for her. Of Dan’s sculptures.’

  ‘What did you tell her?’

  ‘I said yes but I think I should tell her I can’t. Not with Addie getting worse like this.’

  ‘Do you want to do it?’

  I pause and remember how I had felt last night when I spoke to Sarah. Like a child learning to crawl, stretching out for an object placed just beyond reach. Understanding for the first time how it might feel to inch forward and grasp it. Knowing that if I pushed a little harder, I probably could. ‘Yes. I really do.’

  Louisa laughs. ‘So you just need me to tell you it’s okay to do it. To tell you that you’re not abandoning your sick child in her hour of need.’

  I laugh too. ‘Something like that.’ Then I stop laughing and say, ‘I just want something more than damaged bodies and
shitty nappies and squabbles about never being home in time for dinner. I want something fine. Like ... I don’t know...’ I scrabble around in a mind that has fallen out of the habit of such discussion. ‘Like falling in love. That’s what the exhibition should be about.’

  ‘Sounds like you’ve thought about it too much to say no.’

  I realise Louisa is right. As usual. And then it slips out. ‘The exhibition’s a joint one. With Jack Darcy’s paintings of Alix as well.’

  Louisa pauses and then her words almost shock me. ‘That’s a love story too, Camille.’

  ‘How can you be so generous?’ I blurt. ‘Dan was your brother.’

  ‘Dan was dead, Camille. And Alix grieved too much. Until Jack came along. She needed him. Because she had you and you can’t raise a child with grief.’

  I wonder if that is true. If I am raising my own children with grief, an insidious grief that is all the more dangerous for being unsaid. Because it is for a loss that hasn’t yet happened, a loss that might not happen. A loss that we have simply been threatened with, ever since Addie was born. And grief over another loss, one I have never quite understood. That of my mother.

  I shake my head and say, ‘Jack Darcy wants to meet me.’

  ‘I think it would be good for you to meet him.’

  ‘I’m not so sure.’

  After I speak to Louisa, I call work and repeat the story about Addie, organising to drop back from two shifts a week to one. Of course they have to say yes; how can they refuse a mother with a critically ill child? But I can hear them thinking, thoughts that I share, that at one shift a week there is barely any point working.

  Since having the children I can see why so many mothers give up. It is too hard. Babysitting arrangements fall apart like torn skin, children become ill every month and never at the same time and want only their mother at home with them.

  But to be nothing except a mother and Paul’s wife is to be nothing at all.

  Paul and I decide that I should be the one to go home to Rosie. Addie is sedated and is unlikely to wake up for hours whereas Rosie has seen her sister vomiting blood and taken away in an ambulance.

  ‘I’m home,’ I call, as usual, and, as usual, there is the sound of running feet but it is only one little girl, Rosie, who appears at the door, falling over in her rush, let down by chubby eighteen month old legs that don’t quite perform with the skill she demands.

  ‘Mummy,’ she cries as she jumps straight up from her crash-landing and grabs my legs, wrapping both arms tightly around my knees. ‘Cuddle!’

  I bend down and pick her up, kissing her juicy cheeks, then I walk into the kitchen where Julie is packing up her things.

  ‘How’s she been?’ I ask.

  ‘Not too bad. A bit whiny. Asking for you. She knows something’s wrong.’

  ‘Whereabouts...’ I start to ask, looking around the room but Julie interjects and says, ‘She was lying on her little couch. It was covered in,’ she pauses and looks at Rosie, ‘you know, so I threw it in the bin and cleaned up the floor.’

  ‘Did Rosie see?’

  ‘Not at first. Addie was tired so I got her some books and she sat down to read. Rosie was playing with the blocks. But she came running over when Addie started crying. She saw enough.’

  ‘Thanks for cleaning it all up. You didn’t have to.’

  Julie shrugs. ‘I didn’t mind. How is she?’

  Rosie begins to tug at my hair, bored now, wanting me all to herself, wanting Julie gone now that I am home. ‘Not great,’ I say as I try to disentangle myself from Rosie’s fists. Rosie begins to flap, not wanting to let go of my hair now that she has my attention.

  Julie smiles. ‘I’ll go. Give Addie a big kiss for me, Rosie-Posie.’

  Rosie shakes her head and says, ‘No.’ Nothing, not even a sick sister, can stop the incessant no-ing of an eighteen month old. Then Rosie smiles and waves her fat fingers at Julie. As Julie closes the door, Rosie wriggles out of my arms and onto the floor. She runs off down the hall to Addie’s room and says, ‘Addie?’

  So we sit on Addie’s bed together, Rosie cushioned in my lap, and I take out the book we all made together, which has pictures of Addie in the hospital, pictures cut from newsletters showing doctors with stethoscopes caring for patients and a picture of us all home together at the end.

  I read her the story we have created about Addie, who has a bad fairy inside her liver. The bad fairy is casting a spell to make Addie sick. Then a doctor magically appears one night and uses her special wand-shaped tools to take out Addie’s liver, bad fairy and all. The doctor gives Addie a brand new liver, which in our book has been coloured in bright pink by Rosie and has a bow tied around it in festive red. The bad fairy is turned into a sea dragon by the doctor, and is made to swim out into the ocean where spells are drowned before they can be cast. The sea dragon eventually decides that she is sorry for what she has done and sends Addie a magic shell which will stop her from getting sick ever again. Everybody lives happily ever after.

  Every time I read it I can’t help but wonder if we will have to write another book about what happens when the doctor can’t find the bad fairy and so, instead of becoming a sea dragon, she turns into a hooded spinster on a boat, taking children away to a secret place from which they can never return because they are lost in sleep. It is a story without precedent in their Disneyfied lives. Sleeping Beauty, Snow White; these girls are all awoken from sleep in the end and their princes destroy the bad fairies and wicked witches. How do they believe in a story where the simple act of waking becomes impossible?

  I put the book away and make some burritos for dinner. Rosie picks at her food and I do not bother to play aeroplanes or sing songs or threaten her with no dessert because one poor dinner will not kill a child, not today. Then I run the bath and she laughs when I let her splash water everywhere so that my hair is dripping and I end up taking off my clothes and hopping in the bath with her. She tips cups of water over my head and pretends to wash my hair, she jabs her fingers at my nipples as if she expects them to squeak or beep like a plastic toys and then she sits still and serious and intrigued as I blow-dry her hair and mine.

  We read Addie Versus the Bad Fairy five times over; even Maisy Mouse has lost her charm in the face of such a story. Then it is time for bed.

  ‘Addie,’ she says to me again as I zip her into her sleeping bag.

  ‘Let’s blow her a kiss all the way to the hospital,’ I say. ‘Ready?’

  Rosie nods and we kiss and puff into the air with all our might, listening until we are certain we can hear the faint sound of Addie plucking the kisses from the air and sticking them to her cheeks.

  Then I kiss Rosie’s cheeks and her forehead and her chin, just like Addie does to her every night before bed.

  But it is not enough. She tucks her head into my shoulder and starts to whinge. ‘Addie. Addie. Addie.’

  ‘She’ll be home soon,’ I lie.

  I close Rosie’s door, go outside and walk straight across the lawn to my father’s studio. I slap my feet against the path, driving out the anger and the sadness and the frustration before it can turn to tears.

  I sit and turn on my laptop and then type an email to Jack Darcy instead of calling him. My fingers batter the keyboard, then I skim over my words.

  Dear Jack, I can meet you on Friday at noon during my lunch break. If we could meet somewhere near the hospital, that would suit me best. Camille.

  There is no need for introductions. He knows who I am in the same way that I am very aware of who he is. So I press send and then I take out a notebook and pen. I push into the paper, nearly tearing it, and after I have written Dan’s Sculptures at the top of a page, I underline it twice in a gesture that looks like a flourish but is more of an assault. At the top of another page I write Jack’s Paintings; my pen is not so harsh now because lists are a way to organise things, a way to think of something other than my child and her dying liver. I can be a curator for an hour or so until it is ti
me to go back and sit with Addie.

  But I need a theme or an idea first. I remember that from my uni days. Something to coalesce the exhibition, otherwise it is just a motley collection of pieces, strung together like mismatched jewels on a rusty chain. What if things have changed, though, in the intervening years? What if themes are obsolete in this digital age? I feel sure that postmodernism must have passed us by but I have no idea what it has been replaced with.

  Falling in love, I had said to Louisa; that was what the exhibition should be about. Because that perpetuates the legend I have grown up with – that Alix and Dan shared a grand and glorious love for too short a time before he was stolen away by Death. Then somehow, impossibly, Alix found Jack and fell with him into the same kind of love, that which you surrender to, utterly.

  Or did she? That is always the question I have wanted to ask but who can you ask such a thing of when there is no one left alive? Except Jack.

  I reach across to the phone, to call Sarah, to tell her I cannot do this. I’m an impostor who has nothing to say about her father’s art, who has nothing to say about her mother’s lover’s art. As my arm moves, it knocks a postcard that I keep propped up on the desk; it is of a bronze sculpture by Camille Claudel, sculptor, Rodin’s lover, the woman whose name my father wanted to give me before he even knew I existed and which was, in the end, given to me by my mother.

  The bronze is called The Waltz. It was my father’s favourite sculpture. Two figures clasp one another, dancing, heads bowed together, their legs a drapery of fabric. They seem on the one hand precarious, as if their absorption in dancing with one another might cause them to topple over. But to look at their hands and their necks is to discover otherwise. The grip of their hands speaks of their strength together more clearly than if they were to come alive and declare it to the viewer. And Claudel has sculpted their necks so that these pieces of their bodies say more than any pair of eyes ever could about desire; their necks are like tentacles of yearning. They float together, unbalanced but in no danger of collapse, rapt, entranced, unrecoverable.