Red wasn’t able to say much at all.

The test results came back, and Nora and Red learned this: they were both carriers of a faulty gene. When their child was conceived, she inherited this gene from both of them. Having this faulty gene meant that the mucus secretions in Anouk’s lungs and pancreas were thicker than they were supposed to be. Her pancreas wasn’t able to produce the enzymes her body needed to absorb the food she ate – she was getting very little nutrition. She cried all the time because she was always hungry. This faulty gene meant that the thread-like hairs in the branched pathways of her lungs, the cilia, were sticky and matted together, harbouring bacteria, trapping fluids, almost as if she were drowning. Her life would be marked by coughing fits, lung infections, malnutrition. A daily regime of antibiotics and physiotherapy, and later a nebulizing machine that would allow her to inhale her medications by mist. The condition was called cystic fibrosis and her life expectancy was twenty-six years.

After the surgery, Anouk stayed in the hospital until her bowels worked the way they were supposed to. This took two weeks. Nora pumped her breast milk and Anouk was fed safe, enzyme-rich food through a tube in her nose. People came to speak to Nora. This was a whole new education. She was visited by a CF specialist, a dietician, a psychologist and physiotherapist. This seemed an initiation. This esoteric world, and all those who populated it, had been there all along, and now Nora and Red and their baby were a part of it but their arrival hadn’t made so much as a ripple. No one had been surprised or even impressed to see them. No one said: Hey, you’re not supposed to be here, or, this shouldn’t be happening to you. After two weeks in hospital, Anouk passed some kind of yellow jelly and the intensive care nurses said that was good, she could go home. Nora and Red were taught how to cup their hands and hit their baby on her chest, under her arms and around her back. This loosened and dislodged the gunk in her lungs, made it easier for her to cough the stuff out. Twice a day, five minutes each time. They had to be careful of bruising, of breaking a rib. They were shown how to lace fruit puree with tiny balls of Creon, the acid enzyme she would need to digest food. If they weren’t careful, the Creon would burn her mouth.

When they took Anouk home from the hospital, Nora said, ‘This is a different baby than the one we had two weeks ago.’

And Red said, ‘No. She’s the same. Everything else has changed.’

7

Pieter

Stavanger, 1951

My son. my bear. There was a time, before you and your sister came along, when your mother and I didn’t think we were going to get our family. We tried and we tried and nothing ever came of it. Your mother’s heart was broken and I was just angry. After a while, you begin to accept your lot because there’s nothing else you can do, and you learn to rewrite your future. And then, after almost eight years of trying, there was Tilda. And then not even two years later, you. You were born in the late summer of 1951 and I was not in the room with your mother when you drew your first, rattling breath. I was made to wait in some kind of family lounge. Your sister had been left with neighbours.