Copyright

Published by HarperCollinsPublishers Ltd

1 London Bridge Street

London SE1 9GF

www.harpercollins.co.uk

First published in Great Britain by HarperCollinsPublishers 2018

Copyright © Hannah Begbie 2018

Cover design: Claire Ward © HarperCollinsPublishers Ltd 2018

Cover photograph © Trevor Payne / Trevillion Images

Hannah Begbie asserts the moral right to be identified as the author of this work.

A catalogue copy of this book is available from the British Library.

This novel is entirely a work of fiction. The names, characters and incidents portrayed in it are the work of the author’s imagination. Any resemblance to actual persons, living or dead, events or localities is entirely coincidental.

All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins.

Source ISBN: 9780008283230

Ebook Edition © July 2018 ISBN: 9780008283247

Version: 2018-06-26

Dedication

For Tom, my North Star

Contents

Cover

Title Page

Copyright

Dedication

Prologue

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Epilogue

Acknowledgements

About the Author

About the Publisher

PROLOGUE

We were a normal family for exactly twenty-five days.

On the second day we brought her home from the hospital in a car seat. We put it down on the black-and-white weave of the living room rug and Dave said, ‘I feel like I can breathe again.’ Because for most of the pregnancy it was like we had held our breaths.

‘Dave, come on. She’s almost asleep.’ My smile was fading but his was wide and bright like a row of circus bulbs and part of me thought, let him just enjoy it.

‘BABY!’

His volume made me flinch. ‘Dave, please stop.’

‘What? Come on! Mia is here!’

Mia. Found on page 89 of The Great Big Book of Baby Names and circled like a bingo number. He kissed me on the forehead and I smiled for him. I kissed Mia and there we were, connected in a Russian doll of kisses. What a lovely family, someone looking on might have said.

‘It’s all right,’ he whispered. ‘Nothing’s going to get us now.’

And I believed him. I really think I did.

It was the kind of summer where everyone knew it was going to be a good one, right from the first days of the end of spring. The week she was born, the doorbell rang twice a day with deliveries of fresh-baked muffins, wrapped packages of soft toys, and cards printed with storks, peppered with sequins.

Mum, my sister Caroline, Dave’s mum. Our house seemed constantly full of people making the tea, padding in and out of the living room in their socks holding plates of cake, burbling their news. I would look up occasionally, to make a show of listening, but she was always there, cradled in my arms – a tiny person wrapped warm and safe in blankets, peacefully living out her first days in soft, new skin that shone like crushed diamonds.

I am lucky, I thought, in the mornings, as Mum emptied the dishwasher and waxed lyrical about the church pews being cleaned with an alternative furniture polish that had given Sarah-from-six-doors-down a terrible thigh rash.

I am so fortunate, I thought in the afternoons, as Dave and I walked – no, strolled – in the local park, gripping pram handle and coffee cup, like all the other parents.

A hood and a hat for the blinding sunlight.

Balled socks and folded babygros in neat stacks.

Floral fabric conditioner and frying onions lacing the air and warm, sweet milk everywhere. Bubbling away in me. Poured over the porridge that would feed me, so that I could make yet more milk to feed her. I never felt like an animal, not in the way of feeling hunted or preyed upon, but I also didn’t feel any more complicated than an animal. It was hard to explain exactly. Grazing and feeding her. Sun up, sun down.

There were plenty of times when, despite how happy I was, how honestly happy I was, I would start to think about the past. But I could always stop myself, because the important thing was that she was here.

Dave and I had spent ten years together already, looking at each other – across kitchen and restaurant table. Staring and blinking and watching and glancing in bed, meeting rooms, waiting rooms and at parties. De-coding the hidden messages in each other’s eyes. We knew every wrinkle, line and tic in each other: the single eyelash that ran counter to the rest. How the face contorted with laughter and tears.

The right time, then, to greet something new, a new version of ourselves with her barely there hair and tense red fists wrapped in a cellular blanket – cellular, like the mathematics paper marked with its complicated workings and rubbings out.

And there were other times, more than I care to remember, when Mia writhed and bobbed and made her warning siren sounds with a rounded mouth. And I worried. Like any mother would. I would pull her away from a feed, the sweat that had once sealed us now escaping, tickling and itching, all the while thinking: She is in pain. Something is hurting her.

‘She needs a new nappy, that’s all,’ Dave would say. ‘You’re just worried about things going wrong.’ That smile again.

Didn’t he know that after ten years together you can tell a genuine smile from a fake smile?

Why didn’t he say what he meant? Don’t spoil this for us, Cath.

On the early evening of the twenty-fifth day I drew the curtains against the setting sun and answered a phone call.

‘Is this the mother of Baby Freeland?’

Her mother. Hers.

Yes, I belonged to her.

‘Mia Freeland is her name now.’

I wanted her tone to change, to lilt into a floral exclamation of how lovely a name, but she was hesitant. She told me that her name was Kirsty and she was a health visitor, based at our local GP practice in Terrence Avenue.

‘There were some results from the blood test, the heel-prick test,’ she said.

I got hold of a flap of skin on the edge of my thumbnail and sucked through my teeth as it tore. Test. My four-letter word. Dave and I had failed so many tests already, each time more stinging than the last. But Mia was here now. Our final pass.

‘Are you still there?’ said Kirsty.

The heel-prick test, yes. They had taken a spot of blood from Mia’s heel when she was only a few days old, like they did with every newborn in the country. I had flinched when the thing like a staple gun had punctured her snow-white skin, so much worse than if it were piercing my own. A card was pressed to this tiny new wound and then lifted away to reveal a roundel of red. Now there were results. They hadn’t told me to expect results.

‘Yes, I’m here. Do you phone everyone with their results?’

‘Not unless there’s something, you know, definite to say. In Mia’s case they are inconclusive, which means we need to do more tests. Can you come to Atherton General tomorrow morning at eleven?’

‘The hospital?’

‘Yes, Atherton General, a bit past Clyde Hill … Fourth floor, paediatric outpatients’ reception. They’ll know to expect you.’

‘But what are the tests for?’ My stomach twisted and complained.

‘Her levels look a bit abnormal.’ There was a pause and paper shuffle. ‘For cystic fibrosis. I’m putting you on hold for a moment.’

The soft thump of blood drummed its quick new tune in my ears as I googled:

Cystic fibrosis – A genetic disease in which the lungs and digestive system become clogged with thick and sticky mucus …

Stomach pain …

Trouble breathing …

Must be managed with a time-consuming, daily regimen of medication and physiotherapy …

Over the years, the lungs become increasingly damaged and eventually stop working properly …

Debbie Carfax, twenty-three, was diagnosed with cystic fibrosis at the age of two and has been told she has less than …

Catching the common cold could kill this young man with cystic fibrosis as he waits for a life-saving lung transplant …

End-stage cystic fibrosis and how to manage the final days …

One in every 2,500 babies born in the UK has cystic fibrosis …

Average age of death …

Like drowning …

Just breathe.

A piece of hold music droned on, vanilla and classical, chosen to calm interminable situations.

I could feel the adrenalin rise inside me. Everything sharpening, narrowing, ready for flight as I stared at that single question.

Her levels looked abnormal.

I understood that there was a level to everything.

Under the right level, you drowned.

Above the right level, you overflowed.

Finally, a new crackle as the hold music was killed.

‘Yvonne says it’ll be something called a sweat test. You’ll need to bring lots of blankets for the baby to make her sweat. Do remember that. Blankets. And maybe some snacks and mags to pass the time?’ I had no time to reply before she said, ‘And make sure that your husband is with you. Have you got the address? Paediatric outpatients …’

‘Yes. Thank you.’

‘Best of luck.’ And with that, Kirsty was gone.

I hung up, the appointment details scribbled on the back of a tea-bag box with a free T-shirt promotion.

Make sure your husband is with you is the same thing as saying: Are you sitting down? It’s what a person says before they give you the news that will knock you to the floor and turn out the lights.

The consultant with a blunt fringe took a deep breath before she said, ‘I am sorry to have to tell you …’

The hospital, God, just the smell of the place – the mashed potatoes and disinfectant and newly opened bandages – the only way to have kept that air from crawling into my cells would have been to stop breathing altogether.

I threw up when she told us, but I made it to the sink. Still holding Mia, there was no time to pass her to anyone.

Everything emptied.

Chapter 1

Late one afternoon, on a day that was hot and thick and had been promising a storm for too long, I boarded a red London bus. Three passengers on the top deck, dotted far from each other, heads bowed to their phones. Windows closed, greenhouse conditions. I pushed hard at my nearest window pane and was the only one to flinch when it opened with a bang, like something being fired.

I sat, felt the scratching nylon pile beneath my fingertips and resented the electric blue and fluorescent orange chosen to cheer the commuter. Don’t tell me how to feel with your upbeat seat fabric! I will make my own decisions about how I feel.

And I felt fine, actually. Probably better than in the three weeks and six days since diagnosis because now I was on my way to do something. I was on my way to meet people who shared my new language, to ask them: What is this island we have been exiled to? How long have you been waiting for the boats and how do we bring them here quicker?

Mum would be pleased because the kind of thing she might have said if it hadn’t sounded so harsh in the circumstances was, You’re a mother now! Take responsibility! Then I could say to her, But that’s exactly what I’m doing! Taking responsibility for my family. And my feelings.

Because the truth was that no one else – no husband, doctor, sister or friend – was actually doing anything to change the fundamental facts of it and so it was up to me. That was how I felt.

The bus sped through the paint-splatted, urine-stained, poster-torn mess of a city with its crammed stacks and storeys, its ripped holes and soldered joints. If it were up to me, I’d wipe the whole lot away with a bulldozer and start again.

Learn to clean up your own mess, Mum used to say when I was growing up.

I’m doing it, I’m doing it. Once I’ve finished, can I go out?

I was dealing with the mess. I was taking action.

The consultant with the blunt fringe had said: Delta F508 is the name of the mutated gene that you both carry. Mia has taken a copy from each of you.

Then I had said, She didn’t take them. We gave them to her.

She’d said something nice like we mustn’t blame ourselves. But who else was there?

I had plugged Mia into my own life source and helped her build her heart and lungs and organs using my blood and my oxygen and my energy.

I was her mother. I had given her life.

I was her mother. I had given her a death sentence.

Those were the fundamental facts of it.

I rested my head against the bus window, trying to stop my stomach from swimming and heaving, studying the tiny greased honeycomb prints of other people’s skin on the glass. I watched the sunlight thin under gathering clouds and reached for my belly, longing for the solid, reassuring curve of pregnancy and life – instead feeling fabric and loose, scooped-out flesh. Evidence of that life released into the world, my genie out of her bottle. And now I wished and wished and wished.

The panicky stuff had started small – the hours lost to finding my phone (in the fridge) and my keys (in the door). Those things might have been fine, the kind of thing a person does when they aren’t sleeping enough, but in the back of my mind I recognized the pattern in it all – the way my thoughts splintered and the tears came and any light in me felt dimmed by a choking smoke. But I couldn’t dwell too much on patterns and pasts because there was too much going on, what with the nappies and the feeds and trying to quell Mia’s tears and my tears and the anxieties of other people when they said to me How can we help? as I forced a smile and struggled to find an answer for them.

I got more frustrated and panicked as the words people spoke (mother, mother-in-law, sister, friends and other in-laws) rang hollow, fell flat, downright collapsed on the road to meet me.

Pavlova and lasagne? How lovely! It was kind of them, honestly it was, to think that they could change things with a meringue and a béchamel. They weren’t to know that, along with so much else, taste had been blunted in me.

The letters people wrote were sending me into a tailspin. The last time I’d even got a letter, in proper ink on paper, had been after Dad’s funeral. After someone had died, for God’s sake.

One of them started, ‘Of all the people for this to happen to …’ It made me think of a film I once saw, ‘Of all the gin joints, in all the towns, in all the world …’ People were amazed by the news. Privately relieved, some of them, I think … because statistics had to happen to someone. That’s the nature of the beast. My misfortune kept them safer. At least some good was coming of this.

But none of them did anything. None of them changed anything.

I wanted to throw up on the deck of that bus, like it was the only way I would rid myself of that grinding, persistent angst.

Fat drops of rain had started to fall and I was glad of it. I would be able to wash my face in them. Feel their chill on my skin.

As my stop approached I made my way to the top-deck stairs. The driver braked suddenly, before the lights and before the stop, and if I hadn’t been holding on so tight I would have fallen headfirst. A double tragedy, people would have said of our family. And then, when Mia was old enough, they would have said stupid things about chance and randomness and accidents – things they thought would reassure her. Leaving her equipped to deal with her mother’s death-by-bus-stairs.

A ridiculous balancing of deaths, one stupid but fast, the other lifelong, grinding and airless.

I had thought about running away, every single day since diagnosis. I had a credit card and phone – all that I needed to set up life elsewhere.

She loved you, they would tell her. She just couldn’t … some people simply don’t know how …

It must happen all the time: leaving it for someone else to deal with, telling yourself that someone else will be better equipped to meet the needs of the child. Believing it too, maybe.

Would you teach yourself to forget their face? Would that be the key to it?

My feet made hollow, violent hammering sounds as I ran down the stairs, unable to disembark quick enough into the rain, people on the lower deck looking alarmed and suspicious as I banged at the closed sliding doors with flat palms; Get me off this fucking bus! I couldn’t breathe. I was going to be sick.

Chapter 2

All the windows were opened wide in the main meeting room of Cystic Fibrosis Now’s HQ. It smelt of cleaning product and the kind of damp and mossy earthiness that emerges from old walls with the onset of rain. The lighting was stripped and white, headache-bright. Chairs were arranged in a circle, ten or twelve in total perhaps, and the carpet was office-block blue-grey. The few people who had arrived before me stood in pairs. Were they officials who knew what was what, or were they new parents like me? I twisted a button round on my raincoat, as far as it would go, wondering when the threads that anchored it might snap, considering what would happen if I didn’t have the strength and the words for the strangers in that room, if I left that room a few hours later with nothing changed.

I searched the room. A tea urn on a trestle table. Everyone congregated around tea. It gave you something to do while you found the words. Make the tea, drink the tea or beat the walls and chew your fingers. I went to the table and began to make tea I didn’t want.

Teaspoons knocked on the sides of mugs and biscuit wrappers crackled. Conversation was at a constant low murmur, as if a church service was about to begin.

‘Can you pass the sugar, please?’ A woman leaned across the trestle table and touched me on the sleeve. She was petite and she carried a plastic mac dripping rainwater in the crook of her arm. ‘I know I shouldn’t, I’m trying to lose a bit,’ she said. I felt my shoulders drop as she smiled and the thin skin beneath her eyes crinkled to reveal pale, unblended smears of make-up – the kind applied to cover dark shadows. ‘But I can’t do tea without it now.’

Sugary tea is what they brought me after I was sick in that hospital clinic. They let me finish the tea, and then the lessons began. Administer this, administer that, was about the shape of it. Administer medicine to help her absorb nutrients because her digestive organs are clogged with mucus. Administer physiotherapy to get rid of the mucus on her lungs. Administer antibiotics to protect her from the ravages of environmental bacteria that might stick in the lungs and cause damage. By the end Dave had taken copious notes, even drawing a bar chart at one stage. He was strong when it came to administrative tasks so I suppose it made a kind of sense for him to pretend his daughter was a problem that might be solved methodically.

I passed the sugar bowl and smiled. ‘Are you a …?’ I tried, faltered because even memories of numbness lodged in my throat like tickling kapok.

‘Parent, yes. I’ve got a one-year-old boy.’ She smiled. ‘With CF, obviously. You?’

‘Two-month-old girl. Just diagnosed.’

She put down her cup after dropping in two lumps. ‘Amazing you’re here. I was still weeping in my pyjamas at your stage. My little bugger didn’t sleep at all, which made things ten times worse.’

‘How is your little boy? If you don’t mind me asking?’ I asked her the question before I realized I didn’t want to hear the answer, at least not if it was about hospitals, or worse.

‘Doing very well. Started walking the other week and it’s adorable: he looks like a penguin. Kind of tips side to side.’ She put her arms on her side and moved her neck, and we both smiled.

‘What about his medicines?’ I said, emboldened.

‘Oh, spits them out, hates them, but you find a way to get them in. My husband covers that kind of stuff. Amazing how creative you can be. It’s a shame he’s not here tonight, but he’s got a rotten cough and nobody needs that from us. He hates missing things like this. What’s your partner like? Is he doing OK?’

‘Endlessly practical, my Dave.’ I smiled weakly. ‘He’s got a list for medicines, a list for before breakfast, one for after breakfast. A list to keep track of his socks. He loves making lists.’

‘Sounds useful to have around the house.’

‘Yes, he is. Tonight he’s at home training his mum to look after Mia …’

‘Wow.’

‘It’s so he can go to football. He didn’t want to come here. Says he’d rather talk to his friends than a bunch of strangers.’ She raised her eyebrows and I worried then, about being disloyal. ‘Don’t get me wrong … I don’t want to be unfair. Being so practical is the way he’s always been and it definitely has its uses. His ability to categorize and look at, you know, what really matters, took the stress out of organizing our wedding. I don’t always agree with … anyway, the real thing here is that he wants to take Mia swimming at some point. It’s on one of his lists.’

‘Oh, that’s good,’ she said, dunking her biscuit. Her face was soft and kind and calm and being like that seemed such an impossible achievement in the circumstances that she was god-like to me. ‘It took me and my husband ages to work out what we were doing.’

My fingers traced a seam inside my pocket, feeling its ridge, searching for another thread to unpick as I fought the urge to grasp her arm and say, I’m so glad you said it takes a long time because I’m still waiting, I am. But I held back because I wasn’t sure whether by ‘doing’ she meant the practical stuff or the emotional stuff you ‘work out’ together as a couple.

To talk about being a couple with someone I had only known for a minute might be too much, too intense, but I wanted her to say more so I said, ‘Sometimes I’m not sure how much my husband gets it … I mean, at the moment, you know. As we work out … what we’re doing.’

Dave was the one who, in that clinic, holding his full cup of sugary tea, had said, How do you cure it? And I’d felt so sad to watch the penny drop. He wasn’t one for in-depth research at the best of times and after we’d got the call, he’d been the one to say, It’s probably nothing. And I’d tried to believe him. Then, in that room, I’d wanted to hold his hand when his eyes filled with alarmed tears as the consultant said, ‘There is no cure.’ But his gaze was fixed, watching the moment of impact when they said our daughter would have a record with them for life.

And then he asked for a pen so he could take some notes.

I put my mug down on the table. ‘When the consultant – you know, the consultant at …’

‘The hospital?’

‘Yes, the one at the hospital, but the one specifically at …’

‘Diagnosis?’ She looked up at me, hands curled around her cup, chewing her biscuit thoughtfully as I spoke.

‘She told us to get rid of our fish tank because the pump aerosolizes bacteria from its stagnant water. She told us to get rid of it at the same time as saying we should make sure Mia avoids mud and wet sand and lakes and ponds and rivers. I mean, it felt like she was saying avoid life. Avoid fun.’

‘It’s all a balance.’

‘Dave said maybe we could hide the tank in the roof. Practical, I guess. But when bacteria is out there, I mean, when something is out there, it’s out there and it can do damage. Isn’t that right?’ I unbuttoned my raincoat from round my neck to make space for breath, for words. ‘So I said, Dave, let’s throw the fucking fish away. I thought, you’ve just been told your daughter will live a half-life and most of what she wants to do will be off-limits and all you can think about is where we house the fish?’

‘Hey, hey,’ said the woman, laying down her mug and grasping my arm. My eyes stung and my cheeks tickled where they were damp. ‘That’s men. Isn’t it? Not to be a feminist or anything, but they do tend to take their time, you know, processing things. That’s how they are.’

A hand held at last.

The rest of the words I wanted to say were desperate to get out of the airless place they had been living inside me, but I kept my mouth shut, sealed it all in, all the reckless damage those words wanted to do to me.

‘You should help yourself to a couple of those biccies,’ she said. ‘The sugar will do you good. But come and find a seat first.’ She led me to a chair at the circle. ‘They’re about to start.’ I looked round, to smile and thank her for her kindness, but her attention was already turned to her phone and to finding her own seat.

I rubbed at my tired eyes and wiped where mascara had run with the pads of my fingers, remembering why I hadn’t worn make-up in weeks.

Another woman walked into the room at the kind of speed that suggested her day had a momentum that could not be broken. She waved a greeting at someone and settled down in the circle with a clipboard. I laid my coat on the back of my chair and smoothed down my T-shirt, canary yellow – too bright, too try-hard in a room of people shaking off navy rain macs, brushing down grey trousers, adjusting khaki suede boots and pulling out black pens from dark bags.

‘Welcome to our biannual new parents’ meeting,’ said the clipboard woman loudly and abruptly. ‘My name’s Joanna and I’d like to thank you all for coming, both those for whom the experience is still very new, and those who have lived with cystic fibrosis for a long time and are here to show their support tonight. We do appreciate you taking the time to help newly diagnosed families find a path through what can be a very challenging period.’

I looked over at the woman I had cried in front of and she gave me a thin smile before gazing out at the rain still hammering the window panes.

Joanna swiped at her ponytail. ‘A bit of health and safety first. Our cross-infection policy is very strict. For the benefit of newer parents I’ll quickly go over it. The longer you have cystic fibrosis, the more likely it is that your lungs will become colonized with disease-causing bacteria, some of which can become resistant to antibiotics and get harder to treat. We don’t want those infections passing from one patient to another. That’s why people with CF can’t mix.’ She adjusted the position of her biro at the helm of the clipboard. ‘It’s very important to understand that indirect transmission is a possibility too because certain bacteria can survive for hours, sometimes even days, on clothes and skin and surfaces. So I know it sounds rude, but we encourage you not to shake hands with fellow parents because you may be the unknowing vehicle for some nasty bugs. Use the antibacterial gel provided when you leave the event. I don’t want to sound grim but we think it’s crucial that we get this bit right.’

Everyone adjusted themselves for comfort and checked their phones one last time.

‘Onwards! I want the agenda to be driven by you. Let’s start by discovering what your main concerns are.’ She motioned to a man in khaki cargo pants and a black T-shirt. ‘Mark, perhaps you could expand on what you were saying to me the other day about diagnosis being a steep learning curve?’

Mark looked to be in his mid-thirties and losing his hair. He cleared his throat and sat forward on his chair, scratching his forehead, talking to his lumpy leather boots. ‘There seems to be so much to get your head around. What I’d like to know is how you tell a normal cough from the kind of cough that might signal an infection?’ He caught the eye of a few people around the circle, waiting for an answer. ‘I don’t know … that’s it, I suppose.’ I could see the bright but shy flicker of hope in his eyes as he voiced a concern that until then had probably circled his head like a bat at night with the relentless pit-pat flapping of wings.

‘Yes, I worry about that too,’ said a woman hiding in an oversized cardigan, ‘but the other thing … the thing that keeps me up? Like makes me insomniac, and I’ve never been a great sleeper and now I’m like the world’s worst ever sleeper, it pisses my bloke off no end because I’m tossing and turning … The thing for me is the antibiotics? Everyone’s always going on about taking less of them, right? Because, like, you don’t really need them most of the time, right? You go to the doc and they’re like It’s a virus and they leave it because they don’t want everyone on antibiotics and making it so that none of them work. But what about our kids?’ She shuffled on her seat. ‘If our kids are on them a whole lifetime, to treat and protect them … well, they say it in the news all the time. What happens when the antibiotics stop working, like what Joanna said before about the bugs getting resistant. That’s proper bad news for our kids, isn’t it?’

The charity worker nodded her head. ‘Yes, it’s a serious issue.’ She stood up, pen in hand, and wrote BACTERIAL RESISTANCE and COUGHS on the whiteboard in cramped letters. ‘We’ll cover this. Any other questions to get on to the board?’

‘Does the physiotherapy hurt them?’ said a man quickly, the white-skinned bones of his knees jutting through torn jeans. ‘All that bashing at their chest to loosen the mucus in their lungs. You never know with a tiny baby. They cry all the time anyway. Our eldest saw me do it the other day and he started crying because he thought I was hurting his little sister. And then his little sister started crying. It was chaos.’

‘I think it’s so sad.’ A woman with a thick fringe and a broad Scottish accent spoke. ‘How are these kids with CF going to find a community to support each other when this risk of them cross-infecting each other stops them from meeting? I know we’ve got the internet, but it’s not the same as face-to-face. Seeing the whites of a person’s eyes, right? It’s lonely for them. Can we at least get them Skyping or something?’

CHEST PERCUSSION – HURTS?

The squeak of pen on whiteboard.

COMMUNITY/SUPPORT. The charity worker turned to consult her notes and I looked at those faces, wide and afraid, all their fears out there, swimming around trying to find which way up the surface was.

I understood it, I did, and yet most of their questions were practical and could be worked out by asking doctors and looking at the internet. I knew; I’d spent hours researching that kind of thing.

In the days after diagnosis Dave often found me in the dark parts of night gazing at the shining bright of my computer screen as if it were an open casket of jewels. The talk boards, news sites and pharmaceuticals headlines that kept me enchanted, appalled and gripped, an infinite reel of possibilities and answers and endings.

Cystic fibrosis sufferer Stacey marries her childhood sweetheart only days before her death …

One in three die waiting for a lung transplant …

The first time Dave found me like that, he sat with me and cried and said, Well, this feels like old times. The second time he found me, he kissed me on the head and cleared up the research papers at my feet. The third time he stood at the doorway and offered to make me tea. The fourth time he said he should cut off the broadband, like I was a teenager that needed to be told a thing or two. Then I wasn’t just sad, I was angry. But we have to do something, I’d said, gripping the duvet or my jumper sleeve or the skin on my arm. That’s when he said something like all we could do was try and keep her healthy, day to day, and that we should do something useful like enrol her in swimming lessons until the doctors told us to try something new.

After that, things mostly ended with me crying and him saying he’d put the kettle on and that we should talk again when I’d calmed down.

But we never did, and soon enough all the times I cried and he put the kettle on became one big blur and he’d pick a phrase to console me, one plucked from a carousel of options that turned and turned:

Are you all right?

I don’t know what you mean.

There’s no magic wand.

You should get an early night.

Did you speak to your sister yet?

Things will seem better in the morning.

I won’t be out late.

‘I feel lonely,’ I said to the empty floor at the centre of the circle. The words took me by surprise. ‘And I feel breathless, all the time, like I can’t keep up with everything that has to happen to keep my daughter healthy. It’s only been a few weeks – God, she’s only two months old, but already it feels like a lifetime. I feel like I’ll never get to where I hope I’m going because that place doesn’t exist yet. There’s no end in sight. This is our life now. Constant medication and physiotherapy and protecting her from endless threats hidden in normal places. And then the waiting … waiting for the day it gets worse and worse.’

On another day I might have stopped there because I saw the faces of the people around me and one person looked away from me, like she was embarrassed, but I didn’t, I couldn’t. ‘I … I don’t know if I can live like that. And so my question is, if I don’t know how to live with this illness, well … how am I supposed to teach my child to live with it?’

A crow cawed outside. Maybe it had been there a while, but we all heard it now in the silence I had made. The charity worker crossed her arms as she mused on how to translate my sentences into a single penned and capitalized word. Several throats cleared and for a moment I wondered if what I’d said would be passed over. Too awkward, too ruined. I felt bad and exposed and a failure for not having the right words to share with these strangers.

‘That’s easy,’ said a man in a blue suit sitting opposite me. His voice was clear and deep, he was clean-shaven, broad-shouldered and slim, his shirt white and his tie orange. He held a pen and pad and nothing else. He looked so tidy, so unencumbered by his life.

‘Teach your child not to be an arsehole,’ he said. There was an amused ‘Ha!’ from somewhere inside the circle. ‘That matters. And then work to cure CF. That way you’ll raise a healthy adult with half-decent manners.’

A relieved ripple of amusement travelled the room and everyone looked gratefully in his direction. But my heart crumpled into disappointment at his flippancy.

‘And while you’re waiting for their adulthood and the arrival of their manners and the cure,’ he said, seemingly emboldened by everyone’s laughter. ‘While you’re waiting for all that, I suggest you drink vodka and dance to Phil Collins.’

More laughter filled the room. Joanna uncrossed her arms as if she was enjoying herself too, and meantime I was even more annoyed.

‘And what are you supposed to do …’ I said over the laughter. ‘What are you supposed to do,’ I said, louder now, ‘if mixing a bottle of antibiotics feels like quantum physics because your brain is exhausted from being up all night worrying? I dream about flowers on her funeral casket.’ My words were piling out at speed again, and they were getting louder, so that by the end I was almost shouting, as if this was my last chance to ever be heard.

The Scotswoman nodded gently. ‘It’s all right, pet, we get it,’ she said.

The man smiled and then his brow creased. ‘Sorry, I didn’t mean to be crass. I’m not denying it’s hard. It’s very hard. All I’m saying is, there is light. You can experience being a normal parent.’

‘But how? How are we supposed to dance around knowing how badly all this is going to end? I don’t see it.’ I slid forward on my seat, confronting him in a way I had never confronted anyone before. I wanted to know how and why his smile was so full and so very alive.

Everyone in the room seemed to hold their breaths in one collective lung-filling exercise.

‘I dance to Phil Collins in the knowledge that all my friends and family are going to die. All of us. Life is short and Phil is a gift.’ There was more laughter as the man looked to me for a response and, perhaps seeing something in my face, changed tack. ‘You need to remember that it’s different to the way it was even five years ago. There’s a lot of hope now. There are so many new treatments coming out of America and they will be game-changing for the CF community. Your kid’s going to be OK.’

‘Yes, thank you, that’s useful,’ said the charity worker, cutting him off when I wish she hadn’t, but she’d picked an opportunity to slash through a conversation that was awkward at best and threatened to derail her whiteboard bullet points at worst. ‘There is indeed a wonderful pipeline of drugs in development. Let’s talk through some of the more practical things you’ve all raised, like physio and antibiotics and psychological support, and then we can end with the treatments on the horizon. I think we have a nice full agenda.’

PIPELINE OF NEW DRUGS.

The man in the navy suit and citric orange tie pressed the pen hard to the page of his notebook and wrote quickly, as if the words were too important to lose. I would have craned my neck to read them, had I been sitting closer.

As the event drew to a close everyone gathered back at the trestle table but I buttoned up my raincoat to leave. To return to Mia. To cuddle her.

I turned towards the door but the man in the suit and orange tie stopped me, holding out his hand to shake. ‘My name’s Richard.’

‘Ah, Flippant Richard.’ I held out my hand. ‘Cath. Pleased to meet you.’

He grasped mine heartily. ‘I bet you’re only slightly pleased to meet me, at best, but I am honestly pleased to meet you. And I’m sorry about earlier. I’ve been living with my daughter’s CF a long time. You find a way of looking at it, of living with it. But my way doesn’t suit everyone.’

‘I was probably a bit …’ I looked down, taken aback by his new humility. I saw his polished shoes and it made me wish I’d worn the red ones I’d bought while pregnant that were still wrapped in tissue paper.

‘My daughter is a teenager now. Black humour has probably become my … Anyway, I wanted to apologize for behaving badly.’

‘How’s your daughter doing?’

‘She’s doing very well. She’s healthy and … stroppy but happy. Her name’s Rachel. But what about you? Look … what I wanted to say in that discussion – and I didn’t, because I wasn’t sure it applied to the rest of them – was that you have to believe. Believe that your daughter will be cured. Be positive. Know this can end happily and then help make it happen. I’ll continue to pitch Phil Collins as a good soundtrack to that endeavour though. Some of his work, particularly with Genesis, is very emotional.’

I smiled as I turned the possibility of feeling differently about CF around in my mind, like I was examining the facets of a diamond. I looked back at him and his face was an invitation to say anything, so I told him, ‘Diagnosis felt like failure to me. Perhaps because the consultant looked like my old maths teacher and I always did badly in maths. She had exactly the same fringe.’ He laughed. ‘They told me my baby’s sweat test scores were in the nineties and eighties and the first thing I thought was, who doesn’t want 87 per cent on a test? But then they said those scores actually meant her symptoms would be severe. Requiring daily pills and antibiotics and physio. High scores equals bad results. Fail.’

‘Your world’s been turned upside down. I get it. What’s your kid’s name?’

‘Mia.’

‘Mia will be more than fine. You,’ he said, ‘will also be fine.’

My eyes stung, staring at him like that: like I didn’t want to miss anything about that moment. The idea that she might not …

I looked at his suit and how well it fit him, at his clear skin and dark eyes, at the clean and scruffy coal-black hair.

‘But is that true?’ I asked him.

‘I don’t know you well enough to bother lying to you.’ He had a smile that was generous and full of china tea-cup white teeth.

I laughed and sneezed, covering my face. ‘Sorry, I’m getting a cold. It’s not bad but …’ I scooped a plastic bottle of antibacterial gel out of my handbag and poured it into my palms.

‘I should use some of that too. You shook my hand.’

I looked up and we locked eyes. ‘Sorry, I forgot. We weren’t supposed to do that because of cross infection. Sorry.’

‘They’re only being careful. It makes sense: as a charity, as an expert in the field of CF, it’s their responsibility to give you the worst-case scenario. But just because something could happen, doesn’t mean it will. Right?’

‘Right.’ And I smiled again because there was something about him that insisted on it.

‘The research is still being done and it’s not conclusively proven that bugs can transfer from patient to patient via a third party and survive long enough to cause symptoms. It’s a bit of a stretch, in my opinion.’

I saw a loose thread at his collar and a patch of stubble he had missed.

‘I’ve read some of the papers,’ I said. ‘There actually is some evidence to suggest …’ He raised his eyebrows as I spoke and it occurred to me that though I may have read a lot, he had experienced CF for years longer than I had. Of course he knew more. ‘In any event, you really don’t want to take my cold back home to your daughter.’

He smiled. ‘No, I do not. She’d kill me if she missed any more school.’

I poured antibacterial gel in to both our hands. I rubbed it into my palms and then around my fingertips as the CF nurses had taught me to do. My broken cuticles stung.

‘I suppose people aren’t used to meeting without shaking hands. Without touching,’ he said. ‘But it can be done. Life with CF can be done. You just have to find new ways.’

He looked at me then, like he recognized me. Perhaps I looked like someone from his past. I had one of those faces, lots of people said it.

Joanna’s voice tore through the moment. ‘A few final things, folks.’ She held her arms aloft and called out again to address the still chattering room, ponytail swinging obediently in her slipstream. ‘Please, folks! A moment of your time before we have to lock up for the evening! Thank you all for coming. There is more advice and further tips for getting involved in fundraising on the website. And our annual conference is coming up in the last week of August. That’s in only six weeks’ time and we’re still hoping that the parent of a newly diagnosed baby will speak. Please do give me a shout if you’re interested. We want to make sure that all the research talks are balanced with the real-life stories of people actually living with the illness. Thank you, and good night!’

‘I need to go,’ I said, glancing at my watch face. Mia would need a feed.

‘Me too.’ Richard walked with me.

‘Is your husband babysitting?’ he said, opening the fire door for me to step through.

‘Kind of. Not exactly. My mother-in-law. She’s trying, I guess.’

Outside the rain had stopped, the rush-hour traffic had thinned and soon the sun would set. The air was still warm but clearer for having been washed by the rain.

‘Let me get you a taxi,’ he said, as he tried to hail one without an orange light.

‘No, it’s OK. Thank you.’

‘You should think about talking at the conference. You’re the kind of person they need.’

‘The kind of person who rambles about how they don’t understand anything any more?’

‘Someone who’s honest, and brave, but doesn’t know all the answers.’

‘But I don’t know any of the answers.’

‘Exactly my point.’

My stomach knotted. ‘I have to go. It’s getting late.’

He touched me lightly on the sleeve as I turned to leave. ‘My daughter and I are very close. There’s nothing I wouldn’t do for her and CF has given me countless opportunities to fight for her. To make her proud of me. In a strange way, it’s been a gift. Be brave. Go out and fight for your cub’s life.’

He looked down at his feet then, overcome by emotion or else sensing that he had gone too far – I didn’t know which.

But he was quick to look up, smiling, recovered. He loosened his very orange tie and undid a button and I thought, yes, he’s right about going out to fight.

An answer, at last.

‘Here, before I forget.’ He tore a piece of paper out of his notepad. ‘It’s a list of Phil Collins’ most upbeat ballads to cheer you up … and also my contact details in case you want to run that draft speech by me.’ He folded the page and handed it to me.

‘Thanks, but I’m thinking I might do better starting with a fundraising cake sale than standing up and talking to a whole load of people.’

‘Like tonight? Tonight wasn’t all bad, was it?’

‘Goodbye.’ I smiled.

‘Let me know about that speech. Or if you just need other advice, help, whatever.’

I stood on the kerb and watched him hail another cab – a single sharp swing of his arm to command its attention, after which it cut through a lane of traffic to meet him. Its orange light flicked off and I heard him say, ‘Hampstead.’ A mumbled address that I didn’t catch, then, ‘That’s right, near the running track.’ He took his seat and looked out of the window at me.

I smiled, waved, then looked away first because I’d been taught never to look as desperate as you feel.

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