Mother: A gripping emotional story of love and obsession

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‘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.