Every day my heart breaks.

I just want to reach into the photo's of you and give you a big cuddle, look into your beautiful eyes and tell how much I love you. I want to comb your hair and see that bright smile, that could light up a room and hear your laughter. There's so much I never said and did and every day my heart breaks. Life is so unfair, there I said it, the thing I try to avoid. But it's so true and I miss you.

A new chapter.

I hope you are all having a wonderful New Year and looking forward to 2014.

As you have probably noticed I haven't updated the blog on the 16th of each month as I normally do. The thing is, I have had some amazing drams since the start of the new year and I feel it's time for a new chapter, to write when I want to write or have something to say and to try and let go of the emotional ties to specific dates. This may be easier said than done but we will have to wait and see.

So on the 1st day of the New Year I awoke after having a strange dream that Ellis was taking a test and she went to Lisa for some advice, then a cupboard randomly fell off the wall and Daren came to the rescue and put it back up. They all then went to watch some TV and Gary was with the cast of TOWIE.

Lisa, Daren and Gary were Ellis's friends, all of them sadly losing their fight after having had lung transplants. The thing is, it felt so real, Ellis would of gone to Lisa for advice as they were friends from childhood, Daren was Ellis's transplant buddy and was very protective of her and Gary, well he loved TOWIE.

I also had a dream that Ellis was going to get a haircut and our beautiful friend Bibi was taking her. Bibi's car broke down so they got out and began to walk through this field when it started to rain and they were laughing, laughing so loud. Bibi was holding Ellis's hand and wrapping her up in her coat.

I was so moved by this dream, Bibi was such a wonderful person, whenever Ellis had an unexpected visit to the hospital or when things weren't looking good, I always got a call from her, like she knew instinctively that something was wrong. She died very suddenly in a car crash a month or so before Ellis, so the dream was very significant.

So here's looking forward to the new chapter's in our lives. We never know what is going to happen tomorrow so try and enjoy today as you won't ever get the chance to again.

Much Love to you all xx

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.

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.

The only outcome.

http://www.dailymail.co.uk/femail/article-2515815/Why-Ive-promised-help-beautiful-daughter-life.html

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.

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.