Guest post: "We treat cystic fibrosis like a lodger, not a prison guard"
Once she stopped fearing her daughter's condition, Helen Stevenson says her mother's instinct began to develop
Author, Love Like Salt
Posted on: Thu 03-Mar-16 16:28:38
(10 comments )
When my first child was born I had nothing to go by. Was she big? Small? Average? Normal? I had no idea. I was unfamiliar with babies, though I quickly discovered that I was as crazy about them as the next person - the feel, the smell, the miraculous coming-into-life of them. Perhaps people hide their babies away. Or more likely I'd just been looking the other way - travelling, running away from any likely looking home for the twenty years since leaving the one I'd grown up in.
She was scarcely bigger than my hand. After a week a health visitor said I must feed her more. Then she rang me and told me to take her to the hospital immediately. I did, but the consultant put his hands on his hips and shouted: "What's this baby doing here? Take her home and feed her!"
I rang my mother. "She's six months old and weighs 5 kilos." But my mother's mind was clouding with dementia. "I shouldn't worry, dear. None of us is very big." People always assumed that she'd been premature, that she was catching up, not lagging behind. I pumped milk, right side, left side, fed it to her in bottle, fed her on the breast, agreed after four months to give her formula, felt bad for doing so, watched her throw it all up anyway. Then she started to cough.
My sister-in-law said: "Something's not right with her" and I was furious. She was perfect. Wasn't she? "What do you mean? How do you know?" "Mother's instinct", my brother said. They'd already had three babies. All those years when I'd been travelling and looking the other way, I'd failed to develop the mother's instinct. So now I didn't know what was wrong with my child. What wasn't right with her was that her mother had no instincts.
One day I noticed that its hold on us had slackened. Clara had become a person, with her needs and desires, her games, her delight, and there wasn't so much room for fear.
A friend visited from Ethiopia and we were about to set out on a walk. I had a pram, a push chair, two kinds of sling, all lent by friends who'd had babies. She seemed far too small for everything. I stood in the hallway dithering. "Look," said my friend, "just take her like this," and he picked her up and walked out into the street. Of course. I carried her down the street wrapped in a blanket and felt her heart beating against mine.
It was, I suppose, a relief, when she was diagnosed with cystic fibrosis, a serious inherited disease which affects the passage of salt from cell to cell. The organs fill with sticky mucus, making it hard to breathe or digest food properly. At the time she was diagnosed, life expectancy was around 30 years - now rising. From then on, the fear of what her life might be sat with us in every room, came on every holiday, slept by us every night waiting for us when we woke.
Then one day I noticed that its hold on us had slackened. Clara had become a person, with her needs and desires, her games, her delight, and there wasn't so much room for fear. The relationship became bigger than her condition. Our love for her, the day-to-day knowledge of her, crowded out our fear. We did everything we had to, treatments, medicines, precautions of various kinds. We treated cystic fibrosis like a lodger at the top of the house, not a tyrant in whose fortress we were imprisoned. My instincts began to develop. I shed those bits of baby-education which had never seemed to match even a second of my experience. When Clara's sister - who doesn't have cystic fibrosis - was born, I carried her round in my arms, fed her when she wanted and slept with her in the bed, as my instincts told me. It was bliss. It felt safe, and right.
I'm not advocating that everyone ditches every piece of advice they were ever given or was ever published in a book. And when people say 'trust your instincts', you do have to hear them first, get acquainted with them, and of course that's easier to do when there's a context, a relationship, a history, precedent, mistakes made once, avoided second time. But that moment I picked my baby up and carried her down the street was when I began to recognise myself as a mother, and I think my daughter did too.
By Helen Stevenson
That's really lovely to read and a good message for us all.
Good luck to you and Clara
My beautiful friend had cystic fibrosis and some people who knew her didnt know at all or not at first because she was X first not a condition. It never stopped her doing anything and being the person she wanted. Sadly we lost her last year but her spirit and belief that she was more than a label was something we should all learn from and I am so pleased you are raising your little girl the same way
That is a lovely post. My DD has cystic fibrosis - I look forward to the day when I can move away from the fear.
My son is 11 and has cf, I still live with the fear, every damned second. I'm glad you don't, it's exhausting.
Can relate to so much of this. I find it very hard to look at pictures of Dd2 pre-diagnosis, she looks so tiny and ill. I was given so much bad advice about feeding her as well, it makes me angry that I even listened!
The fear does subside....but then at times it hits you like a ton of bricks again
I know. I didn't mean to belittle that fear. Or make anyone feel worse. It is so hard, you feel so isolated. The fear comes and goes. I shared our experience as I feel it now but I'm not going to pretend I haven't felt that too. I don't want to be upbeat and glib but I do believe there is more reason to be hopeful all the time. Helen x
My DD2 with CF is almost four, she is amazing. Hard as nails. Despite all that mycobacterium and pseudomonas has thrown at her these past 18 months (those in the know will know what I mean!) she makes me laugh every day. she's feisty, clever and funny (biased or what?) She lives just as full and fun a life as her big sister and I wouldn't have it any other way. Loved your blog post..
My DS has CF - he had his 17th birthday last week, just managed to get discharged from hospital in time to celebrate at home. He has big problems with his lungs and has at least 3 different bacteria/fungus set up home in his airways. He needs overnight tube feeds to keep his weight up, has CF related diabetes and spends weeks rigged up to an IV pump every couple of months. He has hours of physiotherapy, nebulizers and other meds to manage every day of his life. BUT he enjoys life and is fiercely independent. He has become his own person now. He's got a beautiful girlfriend and packs up all his medical stuff and takes the train to go and visit her for the weekend whenever he can. At that point I may need a large G&T and to remind myself that it's now his life, his decision what he does. I don't think I'll ever totally lose the fear but it's no longer there all the time.
Some of the best patients I have worked with are CF patients. I met the most grown up and brave 5 year old with CF last month and her spirit was amazing. What is great about CF is that with good care, wellness and life expectancy is improving slowly but surely. I was heartened to read last year about the first consultant surgeon in the UK with CF. May your little girl thrive and have a very full and fulfilling life
I have no experience of CF but your blog is so well written. Best wishes to your family.
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