Wednesday, 18 July 2012

The highest of highs...and the lowest CF low

Today has been one of those ultimate wow days. J attended clinic and after the last two weeks on steroids managed to up her FEV1 by 23....who can do that????? What an awesome girl she is. Works so hard on her physio too. So proud of her. Love her so very much. Things looking up for the first time in forever. Even posted on Facebook about it and so many people shared our joy. So little happiness in that cold CF world. My CF mummas always fight the good fight with a brave face. Even the ones I don't "know", I know their fight. This shitty disease tries to rip everything away. We hold on, won't let it.

Then that horrible news. Another CFer gone. This one's personal. We've "tuned up" with her, I've followed her achievements. Such a fighter. She was awesome. Only 16 when she received a transplant. I've seen so many newspaper articles on her. I've talked to her mum. She's gone. How can you fight SO hard and live less than 2 decades? They fought always. ALWAYS. Just like we do. Those thoughts creep in then. That will be us one day. Almost a given. Crying with another CF mumma - her CFer devastated. Thinking the same thoughts. We will always fight. We need to honour B now...try and live the best life. Keep her OFF that transplant list. Fit, healthy and kicking this shitty disease to the wall.

I won't tell her today. She deserves this special day where she has achieved so much. I cry quietly = like most days. And hold all my girls a little tighter. Yet again.