Saturday 1st August

Another month gone!

I thought I'd write a little update though there's not much for me to say really.

I was a little upset a couple of weeks ago to find there had been some thefts in the cemetery and the solar lights me and my mum had put on Rebecca and my Dad's grave had been nicked. Can't do much about it I know but it's a shame people can't have more respect. Sadly I suppose, it's a sign of the world we now live in.

I think about and miss Bec every single day and at least once a week I still think she's just out somewhere and get a stab of pain when I realise she isn't. The pain isn't as bad as it used to be though and it's better to cope with although that's usually dependant on how strong I am at the time. At the minute I'm quite strong so coping OK but losing my child, my only child changed me and my life isn't and never will be the same choose what I do.

I'm a bit out of sorts with the Cystic Fibrosis Trust at the minute and have decided to not do any media work for the moment. This came about when I wrote a story for someone's fundraising event and was told I couldn't include the median age of death for someone with CF as 27. Each story I write includes information/facts about CF for the papers to use if they choose to in the hope it raises awareness and support. When I queried why I couldn't include this, I was told it isn't what the trust wish to portray and it annoyed me because although the life expectancy is now 41, the median age of death is in the twenties and until a cure is found, young people will still lose the battle against this bloody illness. Anyone who watched Great Ormond Street hospital a couple of weeks ago will have seen three kids with CF aged between 11 - 14 who all had lung transplants. They hadn't a hope of reaching the life expectancy without a transplant!!

I feel strongly that in order get CF into the limelight, raise awareness and support, the facts about this life threatening illness needs to be as hard hitting as possible and as a far as I'm concerned, this can be done along side the positives and successes.
I fully understand the need to be positive, as a parent whose lived with the worry, anxiety, trauma, trials and tribulations of CF I was always looking for the positives and hope of a cure, but I was also realistic enough to know that sometimes the bad things have to be shown to make people notice. Watch any other charity advert, you'll see what I mean. That's another thing that bugs me, there's never any adverts about CF and any media coverage is usually about a young person needing a lung transplant and the main focus there is for organ donation and a little bit about CF.
More needs to be done to raise the profile of CF.

Anyway, rant over. I've spoken with the trust and been assured there are some changes afoot about how CF is portrayed so I haven't hung up my pencil just yet, just put it in my pencil case for a couple of months. :)

Fund raising will still be on my agenda though. 

On a less serious issue, I'm impatiently waiting for my hair to grow and even though it is, it's not fast enough for my liking. I'm bored so I've had it coloured blondish, of course Paul thinks it looks horrible but that's par for the course with him, he never likes anything I have done. I've never been this colour before so it was a shock when I looked in the mirror but not as much as having it shaved!!

On that note I'll say bye for now and as always, thanks for reading.

Sue x