So there is only one week to go until the Everything Ellis event, which myself and others are very busy preparing for. Things seem to be going really well and I'm looking forward to it, but and here comes the but, something inside of me is shouting 'why are we having to do this? We should be preparing for Christmas with Ellis, putting up the tree and our reindeers display, going to Winter Wonderland, Christmas Shopping in Westfield, going to the Carousel and taking Cael to Santa's Grotto in Milton Keynes. All of the things Ellis loved to do at Christmas. But we can no longer do these things with our beautiful girl.
She should be picking a dress and shoes to go out with mandy and her mates and doing what other 21 year olds should be doing at Christmas. But she can not do these things because CF took her life and took her away from us.
Then I remind myself, that's why we are having to do this. To find a cure for this bloody cruel, horrid disease and to make people aware of it and to show just how severe and heart wrenching it is. It's one of those horrble 'invisible disorders'. If someone is going through chemo for cancer, the signs are there and people know. If someone has one leg or downs syndrome, people know. The only way people are going to know about CF and the debilitating effects it has is if we stand up and tell them.
So, I guess that is my new path in life, to keep on raising money and awareness until CF is dead and buried or until I am.
Do your bit and spread the word.
Love to you all. Jo.x