there hair and tense red fists wrapped in a cellular blanket – cellular, like the mathematics paper marked with its complicated workings and rubbings out.
And there were other times, more than I care to remember, when Mia writhed and bobbed and made her warning siren sounds with a rounded mouth. And I worried. Like any mother would. I would pull her away from a feed, the sweat that had once sealed us now escaping, tickling and itching, all the while thinking: She is in pain. Something is hurting her.
‘She needs a new nappy, that’s all,’ Dave would say. ‘You’re just worried about things going wrong.’ That smile again.
Didn’t he know that after ten years together you can tell a genuine smile from a fake smile?
Why didn’t he say what he meant? Don’t spoil this for us, Cath.
On the early evening of the twenty-fifth day I drew the curtains against the setting sun and answered a phone call.
‘Is this the mother of Baby Freeland?’
Her mother. Hers.
Yes, I belonged to her.
‘Mia Freeland is her name now.’
I wanted her tone to change, to lilt into a floral exclamation of how lovely a name, but she was hesitant. She told me that her name was Kirsty and she was a health visitor, based at our local GP practice in Terrence Avenue.
‘There were some results from the blood test, the heel-prick test,’ she said.
I got hold of a flap of skin on the edge of my thumbnail and sucked through my teeth as it tore. Test. My four-letter word. Dave and I had failed so many tests already, each time more stinging than the last. But Mia was here now. Our final pass.
‘Are you still there?’ said Kirsty.
The heel-prick test, yes. They had taken a spot of blood from Mia’s heel when she was only a few days old, like they did with every newborn in the country. I had flinched when the thing like a staple gun had punctured her snow-white skin, so much worse than if it were piercing my own. A card was pressed to this tiny new wound and then lifted away to reveal a roundel of red. Now there were results. They hadn’t told me to expect results.
‘Yes, I’m here. Do you phone everyone with their results?’
‘Not unless there’s something, you know, definite to say. In Mia’s case they are inconclusive, which means we need to do more tests. Can you come to Atherton General tomorrow morning at eleven?’
‘The hospital?’
‘Yes, Atherton General, a bit past Clyde Hill … Fourth floor, paediatric outpatients’ reception. They’ll know to expect you.’
‘But what are the tests for?’ My stomach twisted and complained.
‘Her levels look a bit abnormal.’ There was a pause and paper shuffle. ‘For cystic fibrosis. I’m putting you on hold for a moment.’
The soft thump of blood drummed its quick new tune in my ears as I googled:
Cystic fibrosis – A genetic disease in which the lungs and digestive system become clogged with thick and sticky mucus …
Stomach pain …
Trouble breathing …
Must be managed with a time-consuming, daily regimen of medication and physiotherapy …
Over the years, the lungs become increasingly damaged and eventually stop working properly …
Debbie Carfax, twenty-three, was diagnosed with cystic fibrosis at the age of two and has been told she has less than …
Catching the common cold could kill this young man with cystic fibrosis as he waits for a life-saving lung transplant …
End-stage cystic fibrosis and how to manage the final days …
One in every 2,500 babies born in the UK has cystic fibrosis …
Average age of death …
Like drowning …
Just breathe.
A piece of hold music droned on, vanilla and classical, chosen to calm interminable situations.
I could feel the adrenalin rise inside me. Everything sharpening, narrowing, ready for flight as I stared at that single question.
Her levels looked abnormal.
I understood that there was a level to everything.
Under the right level, you drowned.
Above the right level, you overflowed.
Finally, a new crackle as the hold music was killed.
‘Yvonne says it’ll be something called a sweat test. You’ll need to bring lots of blankets for the baby to make her sweat. Do remember that. Blankets. And maybe some snacks and mags to pass the time?’ I had no time to reply before she said, ‘And make sure that your husband is with you. Have you got the address? Paediatric outpatients …’
‘Yes. Thank you.’
‘Best of luck.’ And with that, Kirsty was gone.
I hung up, the appointment details scribbled on the back of a tea-bag box with a free T-shirt promotion.
Make sure your husband is with you is the same thing as saying: Are you sitting down? It’s what a person says before they give you the news that will knock you to the floor and turn out the lights.
The consultant with a blunt fringe took a deep breath before she said, ‘I am sorry to have to tell you …’
The hospital, God, just the smell of the place – the mashed potatoes and disinfectant and newly opened bandages – the only way to have kept that air from crawling into my cells would have been to stop breathing altogether.
I threw up when she told us, but I made it to the sink. Still holding Mia, there was no time to pass her to anyone.
Everything emptied.
Late one afternoon, on a day that was hot and thick and had been promising a storm for too long, I boarded a red London bus. Three passengers on the top deck, dotted far from each other, heads bowed to their phones. Windows closed, greenhouse conditions. I pushed hard at my nearest window pane and was the only one to flinch when it opened with a bang, like something being fired.
I sat, felt the scratching nylon pile beneath my fingertips and resented the electric blue and fluorescent orange chosen to cheer the commuter. Don’t tell me how to feel with your upbeat seat fabric! I will make my own decisions about how I feel.
And I felt fine, actually. Probably better than in the three weeks and six days since diagnosis because now I was on my way to do something. I was on my way to meet people who shared my new language, to ask them: What is this island we have been exiled to? How long have you been waiting for the boats and how do we bring them here quicker?
Mum would be pleased because the kind of thing she might have said if it hadn’t sounded so harsh in the circumstances was, You’re a mother now! Take responsibility! Then I could say to her, But that’s exactly what I’m doing! Taking responsibility for my family. And my feelings.
Because the truth was that no one else – no husband, doctor, sister or friend – was actually doing anything to change the fundamental facts of it and so it was up to me. That was how I felt.
The bus sped through the paint-splatted, urine-stained, poster-torn mess of a city with its crammed stacks and storeys, its ripped holes and soldered joints. If it were up to me, I’d wipe the whole lot away with