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Cystic Fibrosis - getting the diagnosis

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Our son Finn had cystic fibrosis. One day we had a normal, happy, healthy life, a happy, healthy one year old and a happy, healthy pregnancy. Within just three months we were arranging a funeral for our beautiful baby son, we were cystic fibrosis carriers, I was a different person and our lives had changed beyond all belief. This is a very brief snapshot of how our journey started. Finn was meant to be healthy, there was no reason why he wouldn’t be. My husband and I are from large, healthy families; a very boring first mid-wife appointment with me answering ‘nope’ on default just went to show we had nothing to worry about. I happily walked and ran and chased my one year old around throughout my pregnancy with no worries. I was fit and happy and within touching distance of the two kids, two dogs, loving husband family I’d always expected.  I remember going on a weekend break to Loch Tay when I was about 32 weeks pregnant, we’d just come in from a walk, the rain wa...

I miss my son

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I miss my son, I miss him daily, I miss his hands, his feet, his little chin, I miss our fight, his life, the chance we'd win. I miss the moments he'd hold my hand, his fingers curling, gripping and clinging to mine,  I miss him every moment, every second, I miss our time. We should have had longer, he shouldn't have died, I should have seen him grow up, grow stronger, I should have watched him learn and live and love, We should have had longer. 

Cystic Fibrosis - deluding myself with statistics

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Our son Finn had cystic fibrosis (cf). He was meant to live until he was 47. More precisely that’s the median life expectancy in the UK according to the cystic fibrosis trust. What that actually means is that half of people who have cf will live beyond their 47 th birthday, how far beyond is anyone’s guess. That’s how it’s always written, no-one likes to point out that half of all people in the UK with cystic fibrosis will not make it to their 47 th birthday. Obviously our Finn was meant to be in the good half, so it was a comforting statistic to know. I would generally consider myself a lucky person, things fall on the right side for me, always have. I landed in a good family, had an idyllic upbringing in a nice house with dogs that didn’t need a lead. My exam results were always on the right side of average, I went to uni, fell in love with the first guy I met, got my PhD, landed my dream job, married Paul and life was perfect. My first uncomplicated pregnancy and beautiful...

Running for Finn

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This isn't technically a new post, I actually wrote most of it 2 months after Finn died without any idea why I was writing it or what I was going to do with it. I was still in a daze but I had decided to run the Edinburgh half marathon. I know plenty of people think I was/am nuts, but it was a massive help for me. I'm viewing this as a sort of filing system so consider this filed. --------------------------------------------------------- Running for Finn More accurately my story should be ‘running through bereavement’ but to be honest, which is what I really want to do here more than anything else, I don’t feel ready to see those words in bold text quite yet. Hopefully one day that’ll come but for now let’s take it one step at a time. Finn is my son, we lost him just over 2 months ago when he was not quite 11 weeks old. He spent the entirety of his short life in hospital. Details aren’t really important so much to say he was born premature, he had complicati...