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