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

Everything Ellis

Well another month has passed by, time is going too quickly. Soon it will be Christmas which I am really not looking forward to then before we know it, it will be coming up for a year. A whole year, it just seems so unreal! I had found myself wallowing a bit so I finally pulled my finger out and with a little help of some friends, set up 'Everything Ellis'.

The aim is to raise lots of money for the charities that Ellis supported and we are starting with the CF Trust and the Luton & Dunstable Hospital Childrens Wards. We are kicking the events of with a Disco on the 14th December. An old friend of mine, Michael, who is a DJ, has very kindly offered his services for free. We have some great raffle prizes have some great stuff to Auction. The amount of support which we have received has been overwhelming and I am sure it is going to be a fantastic night. Tickets are £5 and can be purchased on line (link below) If you can't make it but would like to donate a little amount you can do that too. I'm sure it will be a little emotional too as it is being held in the hall that Ellis celebrated her 18th Birthday and Daren is going to sing Ellis's song. Get the tissues ready !!

Over the last few weeks I have also met some amazing people online, who sadly have also lost their children due to CF or lack of organs being available for donation. It's kind of sad knowing that others are feeling the same pain as me but also kind of comforting too. I would also like to mention Ellis's friend Kerry who at just 21 is in desperate need of a lung transplant, please spare a thought or a prayer for her.

Finally Mandy, Ellis's sister, was reminiscing with Jodie their lifelong friend, about a game they used to play when they were young called 'what's wrong with me'. So two of them would leave the room whilst the other would put their top on inside out or change their socks and the others would have to guess what was wrong. When it was Ellis's turn she wouldn't change anything and after Mandy and Jodie failed to guess Ellis would just laugh and say 'whats wrong with me - I've got CF' it would get them every time. Just shows what an amazing sense of humour Ellis had even at such a young age.

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

Keep shining angel.

6 months ago tonight was the last time I heard your voice, saw your beautiful brown eyes and your lovely smile. The last time I got to say "goodnight sweet dreams" and tell you that you had made me the proudest mummy in the world.  I will treasure the memories you gave me forever and will carry them deep within my heart. Your courage, wisdom and love for life is my guiding light, keep shining angel. xxxx

Summer Breeze

The view ahead is clouded, the road ahead unclear, how can I move forward knowing you're no longer here. There's an emptiness inside my heart, a gap inside my soul, a part of me left with you and now I am not whole.                                                                

"But life goes on" I here you say, "take one step at a time and I will help you find your way. Don't spend your days weeping and asking why I couldn't stay, I am with you in your darkest moments and in the brightness of the day".

So now I need to dry my eyes, and wipe away a tear, for if I can see clearly I will see that your still here. I will feel you in the summer breeze, in the patter of the rain. I will fill my heart and soul with your love, until we meet again.

Back on track.

Well, after the last post I am now, once again feeling more optimistic and getting back on track, (whatever that is meant to mean !!)

So at the weekend Ellis's good friend Jenni held a charity disco, in aid of the Cystic Fibrosis Trust. A great night was had by all and I think lots of people woke up with a sore head the next morning x I believe that over £1000 was raised. Well done Jenni.

Ellis's favorite little boy, started school this week and Ellis would be so proud of him and how well he is coping without her.  I know he misses her but he always talks about her with a smile on his face and remembers the fun they had and the songs they sang together.

When we was on the plane and Cael was looking out of the window, he asked  "Are we in the sky" Yes I replied. "Ellis is in the sky with the fairies and angels so can we pick her up, take her on holiday with us, and drop her off on the way home". Oh If only it was that simple.

Finally Ellis was involved in a number of different charities and I promised her I would raise money and awareness for these. So now that I am redundant as a full time mum, I now have more time to focus on getting the ball rolling. So details will follow shortly hopefully with details of a Christmas Celebration.

Note to myself - we don't know what lies around the corner, so just try and enjoy life as much as possible. xxx  Until next time - laugh a lot, love a lot and live a lot. xxx

Set the record straight.

This day 2 years ago I was given the chance of a future with my beautiful daughter, who at just turned 19 was dying in a hospital bed, too weak to eat or get out of bed, too out of breath to talk, aching with pain and who was simply ready to die.

Then her chance, that no body believed would ever happen and to be frank without the persistence of Dr Helen Barker who battled through red tape, bureaucracy and the medical team who simply said Ellis should be left to die as she was too ill for transplantation, there it was, the chance of getting Ellis back.

Well you all know the story from here, but I need to set the record straight. I am not and have never been the perfect mum, the strong courageous mum, the one without any flaws. I made mistakes, some bad ones. I made wrong decisions and wasn't always there when Ellis needed me. Maybe I was scared, she was turning into a stunning young lady, no longer my little girl and I don't think I knew how to deal with this.

And now, well I find myself stuck between the life I once had and the future, without Ellis in it, and to be honest I don't know how to move forward. Moving forward may mean I will forget her, leave her behind, but being stuck in this place may mean I will lose my future, my son and my family. I'm not looking for sympathy as anyone that knows me knows that isn't me, I'm just trying to explain the scary feelings that I have and that I don't know how to process.

I have always been an optimistic person and hope that I will find my way back very soon. I just can't trick you all into thinking that life is all rosy because it isn't and most of all I can no longer trick myself.