Guiding star.

Another month has passed,
since we saw you full of light.
You knew the time had come,
for you to give up the fight.

Now you are at peace,
happy and care free.
Keep on shining darling,
a guiding star for us to see.

It's been a while.

So I know it's been a while since I've updated Ellis's blog but it's not for want of trying! I have tried many times since the new year and even on the 16th of Jan I just couldn't manage to do it. Maybe because it was a new year, a year Ellis would not see, or maybe I'm finally beginning to realise that she isn't coming back.

Sometimes I will sit here, all ready to post an update and have the words all ready in my head but then they just don't come out right or I think 'these are just words, they don't mean anything.'

Well I guess a lot of you have seen the transplant programmes that have been on this week, I actually havn't been able to watch them, just brings everything back. Not that the feelings have ever gone away but you kind of bury them and only let them re-surface when you think you can deal with them.

There was something on TV recently about prisoners on death row and it reminded me of Ellis once saying "I'm like one of those prisoners waiting to be executed, only difference is they are all probably guilty of hideous crimes where as I am innocent.  Therefore they don't have the right to choose the date or time of their death, but I do. I wont be a victim and I will always be in control of my destiny, whatever that destiny will be."

How true she remained to her words.

The last post of 2012

Well this will be the last post of 2012, the year that Ellis deteriorated very quickly and of course the year that our beautiful daughter, sister and friend lost her fight for life. The worst year of our lives. I also lost a very close friend in March and I know she will be taking care of Ellis for me x

However I will look back at the good times we had at the start of the year especially seeing New Year in with friends.

So I hope that 2013 brings comfort to those that are grieving for loved ones, brings hope to those who are sick and waiting for transplants and happiness to those that are sad.

Wishing you all lots of love, peace and happiness for 2013 xxxx

Christmas morning.

Christmas morning I awake,
feeling emptiness and heartache.
One less present under the tree,
one less person to laugh with me.

What I would do to have you back,
to open gifts, and watch TV tack.
But I know that will never be,
so I hold you tight inside of me.

I close my eyes and think of you,
and remember that you loved me too.
I see your smile and shining eyes,
then I know that love never dies.

first fundraising event.

8 months ago today we lost our girl and there hasn't been a day go by that we havn't thought and spoken about her. However much we may wish, we cannot change the past, but we may be able to change the future, by raising money and awareness for the Charities close to Ellis's heart.

On Friday as you probably know, we held the first fundraising event which thankfully, went really well. Over 100 tickets were sold and peoples generosity was staggering. I'm so glad that everyone seemed to have a great night. Of course I couldn't of done it without the help of my family and friends, they know who they are.

So how much was raised? Well the money is still coming in and I will tally it all up in a few days.

There are still some Everything Ellis wristbands left, so if any one would like one then please donate £2.50 on the link below or contact me directly and I will post to you.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=everythingellis&faId=265723&isTeam=true

Here a few pics of the evening x

Why are we having to do this?

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

Ellis's memory tree

Hi all just a quick update for you all. The Everything Ellis event, for the CF Trust and L&D Childrens wards,  is going really well. Posters have been printed and going up, tickets selling, amazing raffle prizes, from a meal at a hotel to flowers and spray tans! Auction prizes vary from a family day out at Woburn Safari Park to a one of China Cup with Ellis's picture on !

Finally, we have planted Ellis's memory tree, a japanese weeping cherry, in our local churchyard. I know it looks a little sad at the moment but when it blossoms in the spring it will be stunning, just like Ellis x