Mother Read online

  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.