emotional madness

Another month has passed, I didn't have the energy on the 16th to update the blog, sometimes it's like what's the point, I'm clinging onto someone that's not here and besides, who wants to read about all the emotional madness that rages in my head and in the pit of my stomach? I know for sure that I wouldn't. Maybe it's because I broke my leg and have too much time to over think and question everything. Maybe it's because I sold our house, the home that Mandy and Ellis grew up in, the place we had all our good, and bad, times. Maybe It's the thought that I will have these moments of complete insanity, guilt, frustration, anger and loneliness forever. I'm powerless to these things and have no control over them. Ok so I have a loving family and fantastic friends whom I couldn't live without and am extremely grateful for their love and support but I am and always will be incomplete. 

Hopefully my next post will be all positive and happy like that my cup's half full rubbish. Until then I send lots of love, peace and positive vibes to you all.

Just a passing thought that has kind of cheered me up, maybe it's just because it's so damned cold, wet and gloomy here at the moment and I'm in need of that little something called sun! Hey Ho maybe there is a little light at the end of this dark and gloomy tunnel.

In a blink of an eye.

Three years ago, I was living with Ellis in her room at Papworth. Unable to get out of bed, being kept alive by a ventilator and too short of breath to talk more than a few words at a time, we was watching her fade away. It was the Saturday of the bank holiday weekend and the night before had been really tough, her sats dropped down to the 30s and her heart was under extreme pressure, I really thought that's it, but amazingly the CF team kept her alive. However the deterioration meant that she would be too sick for transplant and the doctors told us that if she survived the next few days she would be officially taken off the list once the transplant team returned on Tuesday. We didn't really need to be told this as in our hearts we knew and Ellis had said, "it's ok mum, I've had a good life and I'm ready to go". Unless you have heard your child say these words you will never know how that feels.

On that Saturday night Ellis had another turn and blacked out, once again the crash team and doctors fought to keep her alive and thankfully she pulled through. So when Dr Barker came into the room a few hours later and said "we need to talk" my heart sank, I truly believed that it meant Ellis wouldn't survive the night. Instead she said that there was a potential donor and the rest, well, you know the story.

I think that these times should remind us that we need to live for every minute, fight when needed and laugh whenever we can. Our lives can change, for better or worse in a blink of an eye and we owe it to ourselves and those that we have loved and lost to live our lives to the fullest. I know for sure that if Ellis's destiny had been different and she was still here she wouldn't be crying or sad and would be living and not just existing.

I will carry Ellis's life, and death, with me for ever but I will do everything in my power not to let myself be consumed by it.

Happy Birthday Ellis.

https://announce.jpress.co.uk/29056149?s_source=jpmi_lhp_lun

Words can't describe our feelings today so I'm not going to try. Just want to say Happy Birthday Lovely x

Happy Birthday Mum x

16th July, thinking of my mum as it's her birthday today and wonder what she and Ellis are doing. Ellis loved her nanny so much, when Ellis was at college, forcing herself to struggle on, she would still manage to stop at at nanny's on the way home for a gossip and a giggle. Happy Birthday Mum x

Also it's now been 15 months since Ellis departed, time isn't a healer and things aren't getting easier. We carry on our lives as best we can but really it's all kind of make believe as nothing seems real anymore. We miss her with every breath and that's the one thing we know will never ever change.

Life

Life is not measured by the number of years that we live,
but by the happiness, the laughter, the love that we give.

Life shouldn't be filled with hatred, sadness, regret or fear,
but with courage, hope and wisdom and the people we hold dear.

Life is not about going grey and getting old,
but by sharing good times and the stories that we told.

Life is for dancing, giving, caring and having fun,
so go outside breathe the air and do kart wheels in the sun.

Play your music loud and sing with all your heart,
for if the joy of your life lives on we will never be apart.

Ellis, you lived your life with love and strength to the end,
I will love you always my beautiful daughter and best friend.

My tears still flow.

Hi all, well you may be wondering why I didn't update the blog last month on Ellis's 1 year anniversary well, the truth is, it would of hurt too much. Last Saturday, the 11th May, was the day of Ellis's goodbye service and this coming Sunday, the 19th May is the day that my mum passed away in 2009 and the day that Ellis was accepted onto the transplant list in 2010.  Funny how these dates will never be forgotten and will always remind me of Ellis but there is always something, every day, that makes me think of her. My tears still flow unexpectedly and my heart still skips a beat without warning. I don't want this to change either as it's just my heart and soul reminding me how strong my love for her was, still is and will always be xx

Lisa's words x

This song was chosen by Ellis, to be played at her service. As you know, Ellis's dear friend Lisa recently passed away and she chose this song, among others to be played at her wake. These were Lisa's exact words as to why she chose it.

Forever Young
OK so completely nicking this off Ellis cos it is us! we are forever young! we don't have to worry bout growing old think CF crowd just brought up t live in the moment it's so important cos it goes so quick even if u live t 90

http://www.youtube.com/watch?v=lP5U4rQq3s0&list=UUOjxPe9Y16nZ9UlUgSKsjQQ&index=9