Tuesday, 10 May 2011

Cystic Fibrosis - a mother's perspective.

This frank and emotive piece is written by Paula Elwood, who is mother to eight year-old Holly, who has CF. Above: Holly is on the left, and her little sister Ruby (who does not have CF) is on the right.

I was at a mother & toddler group when the realisation first struck me. Smiling as we watched our children play, my chatty fellow mums jokingly guessed what their sons and daughters would be when they grew up, who they would marry, what sort of men and women they would grow to be. I said nothing. Not once since my daughter had been born and diagnosed with cystic fibrosis had allowed myself these simple daydreams.

Eight years on and Holly is a smart, beautiful, courageous and sensitive girl, who takes everything in her stride. She loves her dancing, swimming, trampolining and getting up to mischief with her little sister and wide circle of friends. Apart from a couple of major bugs and dozens of minor ones, she’s stayed relatively healthy – and it’s easy to forget she’s not exactly like her friends. But still, I daren’t look into the crystal ball.

Physiotherapy, cocktails of tablets, nebulisers, hospital visits and stays are part of our normal routine and have been since Holly was born. Every year another few tablets are added, perhaps an inhaler, perhaps a few additional tests… As CF is a progressive condition and currently without a cure, it’s probably best not to dwell on the past and the gradual tweaks being made to her care.

Instead I live in the present. Balancing Holly’s routine and the day-to-day demands of life with a ‘pathological’ need to squeeze the most out of every day together, every weekend, every bedtime story – to give my family the most fun possible today, because who knows whether we’ll still be able to do the same tomorrow, next week, next month, next year?

Well-meaning friends have said they admire my lust for life and the non-stop adventures I seem to share with my girls, and some have even been misguided enough to call me ‘brave’. In fact the opposite is true.

We live as we do because of my fear. Fear that Holly won’t have the career, the wedding, or grow into the amazing woman I know she could be. Fear that one day CF will have ravaged her lungs to the point that a transplant is her only option. And fear that if we take that option, she will be one of the hundreds who die waiting every year because of the lack of organ donors.

Instead I hope only that Holly is happy, healthy and has the best possible quality of life for as long as possible, and trust that when the time comes, a heroic stranger will be there to give the greatest gift of all – the gift of life – and a chance to dream of the future.

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