Love Like Salt
Everyone's life changes when they have a baby. Having a baby with a life long illness is an intense version of that change. When my first child was born no one could work out why she didn't grow. She was like Thumbelina with a cough. A succession of doctors failed to diagnose cystic fibrosis (CF), and it was a dermatologist, in the end, who asked me if she tasty salty when I kissed her.
I wanted to write about our experience;because from the start my instinct was to reach for a book. I wanted to read words, a story, that made me feel there was room for hope - that Clara (pictured) might live happily, despite not always being 'healthy', in a world where it often felt as though you had to be healthy to be happy. At the time I couldn't find one.
I hope I've written a book that might help someone in the situation I was in then to feel stronger - happier, even. I'm not saying CF was a blessing in disguise, I'd never say that about any illness, particularly when I'm not the one who bears it. But it isn't the curse I was made to feel it was by the community nurse who crossed herself and shrank from me when she heard the diagnosis.
CF hasn't ruled our lives in the way we thought it would, though it's accompanied us this far. New treatments, the miracle of watching her grow stronger where we had expected her to decline, all make us quietly, cautiously hopeful for Clara and others like her. I don't feel out on the edge of the world as I did to start with, as a mother with a sickly child. I feel in the thick of it, where things happen.
Helen's memoir 'Love Like Salt' is now available to buy.
Once I knew the cystic fibrosis gene had unfolded itself in our daughter's body, I felt that to write, even if I had had time, or been able, would have been to squander a kind of power which was needed for tending and nurturing.Helen Stevenson, author