Monday, October 29, 2012


Utterly emotionally drained after saying farewell to a beautiful soul today. I cried for my friend, who lost her sister. I cried for her mum whom I share a common bond with. I cried for myself. The sadness in the chapel was tangible. No-one wanted to leave. No-one wanted it to be final.
Amanda was well loved. Her friends grief and tributes left me wishing I knew her better. She was an amazing person and I look forward to hearing more stories about her life, when her sister is ready to share them with me. A life so full of love and living that it's hard to understand how such a progressive illness eventually takes over.
The drumming tribute calmed and grounded me. What a beautiful parting gift her friends gave her. Observed by a lone girl, dressed in colour, shrouded in sadness. A woman who has lost her best friend. What can you say to ease the pain?
Amanda did not let Cystic Fibrosis get her down. Anything I say about her will sound like a cliche. Her life was about kindness and nature and for standing up for what you believe in. In 28 years, she did more, felt more, helped more than others do in 80 years.
I know I am now going to live every day better, for having known Amanda.
Today was a sad day, my friends and I held each other and cried. Friendship is a beautiful thing.

Sunday, October 21, 2012


My skin is getting thinner instead of thicker. My bubble is popping. Reality is setting in. I don't like it, it shakes my soul. I have started this journey backwards.

Most people who have had a baby diagnosed with a chronic illness start off on shaky ground. They are worried, fearful. Who can blame them for thinking the worst? Their whole world has been turned upside down, and not for the better. After time, they start to find normality. No sorry, normality is the wrong word. Nothing about this is normal. They learn to live, and see the positives through the shit. They find hope in medical advances, feel purpose in being proactive. Like most things in life, I seem to have gone about it the wrong way. I started off full of confidence and purpose. I hit the ground running. Don't get me wrong, it didn't take me long to find out what CF was about. I made sure I knew as much about it as early as possible. And to me, this was (and still is, always so much more to learn) a way of coping and preparing. Much like you explain to young children what is going to happen in a check-up so they know what to expect be less fearful, I have tried to prepare myself for whatever challenges may come. Osteoporosis, diabetes, IV antibiotics, more hospital stays, lung function decrease, nasty bug, transplant list. Can't shock me CF, I know it all. And I won't let you scare me enough to fear life itself.

But now, Cystic Fibrosis has taken on a form for me. It's dark and fluid, and just out of the corner of my eye. It watches me give treatments to Ruby, it follows me around. CF isn't scared of me anymore, it's just loitering around us. Nothing has changed with Ruby health wise. In fact, she is clinically doing quite well at the moment. But it's still there, waiting.

Cystic Fibrosis claims lives all the time. You just have to be part of any CF group online to see how often. It hurts when we lose a member of our community.

 Then someone you know personally dies of CF. Someone I knew as a real-life person, separate to the CF world where we are joined by the same disease. Someone I got to know before I had Ruby and even knew what CF was. And it rips my heart out. It's the pin that pops the bubble. Her death leaves me wide open to questions I usually I would not tolerate. To the fact that this journey will not end well. No matter what I do. But most of all, I feel sadness for my friend who has lost her sister. I hope with all my heart that Eliza and Ruby will have the same kind of relationship that J & A did.

What difference does time make? If you know you are going to watch your child die, why should that hurt any less now, compared to when it is actually happening? Is the knowledge just as bad as the event? I'm guessing not. There is always more room for pain.

There are older people with CF out there. They teach us that there is the chance that my daughter can live to past her 30s. I should take comfort in this. But instead I get a bit sad that these people have something special about them, and that special something is their age. An age that is midlife to the rest of the world. Greedy me, I want Ruby to grow old and wrinkly.

I don't really know where I am emotionally at the moment, but I am happy to just drift along and see where I land. What will be, will be.

Dum Spiro Spero