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
