remember her words

Firstly I would like to say that my leg, which I broke in September, is on the mend and I am very happy to be back on my feet. Secondly, for those that don't know, we are now living in the very beautiful Cape Town, South Africa. Even though today the winds are howling and the rain is pouring it's kind of nice as it reminds me of being back in the UK.

So the other day we were going through some stuff and I unpacked some photos of Ellis, the ones from her farewell service. As I hadn't seen these for a while I said something like "Oh hello Yeah Yeah" Cáel promptly turned to me, with a very confused look on his face and said "who's Yeah Yeah? that's Ellis" This totally shocked me as it was the name that he had called her all of his life. It made me really sad that he had forgotten his special name for her. What else will he forget? After all he was only 4 when she passed away.

I think that this is a big fear that I have, that people will forget her and just how amazing she was and the things she went through and achieved in her short life. So I'm going to ask that you read some of Ellis's original posts, to remember her words and the reasons for her starting this blog.

Our last precious day.

This time 18 months ago, we spent our last precious day with you. We watched rubbish TV, listened to music and acted as though it was just another day. The look of love in your eyes when you had snuggles with Cáel in your bed will stay with me forever, and I know Cáel will always hold that love in his heart. You were so frail and tired but your courage, beauty, love and wisdom stayed with you right until the end, because you had come to terms with your destiny. I wish I could come to terms with it as gracefully as you did but I'm afraid to say I don't think I can. All I can say is that I will love you forever and want to thank you for being my daughter.

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.