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.
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