Tuesday, 24 December 2013

Sister Love.

We tip toe down stairs to take a peak, it's Christmas morning we're too excited to sleep, 
there we see them all under the tree, wrapped up presents for you and me.
We'd compare our presents, laugh and play just like 2 sisters on an ordinary Christmas Day. 
Years go by, we grow into our own, even though you are ill I never hear you moan! 
Now we're older and its Christmas Day we buy each other gifts and they're exactly the same, 
then You have a transplant a 2nd chance of life and boy aren't you living it, out every night! 
Now you're loosing your energy you are getting very ill, nothing can cure you not even the pills, 
you lay there peacefully your life's coming to an end, cystic fibrosis not even the medicine can mend. 
You are being so brave, inside I want to cry, you're only 20 I'm not ready to say good bye, 
then I get the phone call you have fallen asleep your out of pain now and you are at peace. 

Nearly 2 years have gone by since you became an angel in heaven and I miss everything about you every day love you always. You are out of pain now and at rest, it certainly is true god only takes the best!

Love you always your big sister Mandy.

Monday, 16 December 2013

Merry Christmas and Happy New Year.

I would like to dedicate this post to three of Ellis's friends, each of them suffer from CF and were all awaiting lung transplants. Within a few weeks of each other they all received the gift of life and are making amazing recoveries. So Bernice, Emily and the Lovely Laura I'm praying you continue to have a speedy recovery and happy and blessed life.

Of course we must also remember the brave and courageous decision that the donor families made, in their time of loss and sadness. I hope they can take some comfort in knowing how important their decision was and what a difference it has made.

Merry Christmas and Happy New Year.

Monday, 2 December 2013

The only outcome.


After reading the above article and the comments and feelings it has provoked, I feel that I am in a position to voice an opinion, unlike many of the people who have made some negative and very hurtful comments.

There are so many layers to this story and there is no simple answer or right or wrong ending. The only thing that matters and the only person who needs to be listened to is Jennie, not her mum or family, not the doctors nor the pro/anti euthanasia campaigners. It is Jennie's life and ultimately it will be her death, one that she no doubt would have thought about from a very young age.

So here's a few things that need to be considered whilst reading the article. The young, attractive, smiling Jennie will at one stage be facing the end of her life. With every breath that she struggles to take, CF will take away a little bit more of her life, her personality, her whole being. She will probably be scared, in pain, be unable to get out of bed, be attached to wires and machines, that are keeping her 'alive' and so many drugs that will overtake her mind. Ok so she might be alive, but will she be living ?  There she could lay for days, weeks or even months, knowing there will be no miracle cure, no chance of a happily ever after, the only outcome is death.

So Jennie decides that she doesn't want to die that way. She wants to be as pain free as possible, comfortable and in control. Is it then right that she will have to travel to a strange country, with unfamiliar surroundings, without the comfort of home and all her family and friends supporting her and holding her hand?

As a mother who has been through this, I still struggle with the decision that Ellis made. But I have to tell myself she was mentally strong and determined, once she had made her decision I, or no one else, would not have been able to change her mind. So I have two options. I fight against her, tell her to carry on, to keep going, tell her she is making the wrong decision and not support her. Or I disregard my feelings, I don't want her to die, but that WILL happen anyway, I want to spend as many days and minutes with her as I can, but at what cost? So I tell her with tears in my eyes, completely devastated and in denial, that I love her and that whatever she decides we will support her and be right there with her until the end.

Was this the wrong thing to do? Some people might think so, but in my heart I know I made the right choice, not for me but for Ellis.

Friday, 15 November 2013

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.

Tuesday, 15 October 2013

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.

Wednesday, 18 September 2013

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.

Wednesday, 28 August 2013

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.

Wednesday, 31 July 2013

Happy Birthday Ellis.


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

Tuesday, 16 July 2013

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.

Tuesday, 18 June 2013


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.

Wednesday, 15 May 2013

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

Friday, 5 April 2013

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


Sunday, 31 March 2013

In memory of Gary

In memory of Gary, friend of Ellis, myself and many others, who very sadly could no longer continue his journey here on earth. The final message that Ellis sent him remains in my mind now, more than any other time.  I know that Gary carried her words with him, as he told me that he takes great comfort from her wisdom and is less afraid of what lies beyond as his jouney will be easier knowing he can follow her footsteps.

Thursday, 21 March 2013

Fly High Sweetheart

Fly high sweetheart.

Here on earth you could not stay,
you gained your wings and flew away.
In our heart's you will always be,
our beautiful young lady, Lisa Marie.

For Lisa, a friend and guide to Ellis and I am honoured to have been just a small part of your life x

Monday, 11 March 2013

Cáel Harlem Shake

Just a little something that we put together to keep up Ellis's tradition of mucking around and silly dancing  x


Saturday, 16 February 2013

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.

Thursday, 14 February 2013

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.