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.

Darren, transplant buddy.

Hi all, well one year ago today the lovely Darren Salmon lost his fight for life, just one week prior to his first year transplant anniversary. Darren was a lovely man, one of the best, he had a loving family and 3 beautiful children.

We met Darren, just a few days after he and Ellis received their transplants and a great friendship was born. They recovered together, laughed together, cried together and shared an understanding of what the other was going through. They both always had a twinkle in their eyes, a cheeky smile on their face, a wicked sense of humor and a lust for life and laughter.

When in hospital, they would always be together on what became 'their table in the corridor'. This was their place, to laugh and watch the comings and goings of the other patients and staff. The doctors and nurses would always know where to find them. As time went on, and they grew different infections, they were no longer able to mix, but it didn't stop them from standing in each others door ways, until they were marched back to their room!

A little while before Darren lost his fight for life he told Ellis that, when he had to leave, he would send her a white feather, as a sign that he is watching over her. After saying goodbye at his funeral, whilst understandably upset, the whitest fluffiest feather literally came from no where and landed on Ellis. A sign as promised, he would never let her down.

Ellis always knew she had a friend in Darren, as did I, he was always there for us, even though his health was deteriorating. Well I'm sure their friendship remains as they are, once again, continuing their journey together.
                                                   
                                          Exercising at the Gym in Papworth.  

                                       
                          These are Darren's songs, which Ellis loved listening to.

Happy 21st birthday my angel.

Words are worthless today my beautiful, brave, witty girl. I miss you with every heartbeat.I will forever cherish every second we shared together, Happy 21st birthday my angel.

Keep thinking of our verse.

God grant us the serenity to accept the things we cannot change, the courage to change the things we can
and the wisdom to know the difference.

I will love you until I take my last breath and then we will be re-united xx

Live life then give life xxx

Well I have been thinking about what to write on the blog, don't want to keep boring you all with my shitty stuff. After all it is Ellis's blog and I want it to stay that way.

Then a ray of sunshine came in the way of the attached link. Ellis knew many of the people featured in the link., after watching, it bought tears to my eyes and saddened me but it also gave me joy and hope.

Mike (pictured with wife Claire) had been in the next room in hospital with Ellis for a long period, and sadly passed away just a week or so before Ellis received her transplant. This was the day of the meteor shower so he really did go out with a bang!

Mike, who shared a very unique bond with Ellis, passed away just a few days before Ellis. When Ellis heard this very sad news and after shedding a few tears, Ellis smiled and said "I told you I was doing the right thing,  we always knew he would pass to the next life just before me so he can be waiting with a drink and a big smile on his face"  They had said this for many years, maybe somehow they knew x

Then there are the lovely girls, Kirstie, Amy, Kerry, Sophie and the lovely Chantelle who was Ellis Papworth buddy, often getting into trouble with the nurses for chatting too late into the night or not being around for their IVs.

So please take a look at the link and if you are on or are thinking of joining the organ donor register, please please discuss your wishes with your family.

http://www.youtube.com/watch?v=t5qLimCppbA&feature=share

A busy week.

Firstly, I went to visit our friend Gary, who on the 24 June had his much needed double lung transplant. I was a little unsure as to how I would cope returning to Papworth. Would I turn into a blubbering wreck, would I get half way there and decide to turn back? Well, I actually felt totally at ease, like I was returning home, I felt uplifted and at peace. To top it off seeing Gary looking so well, with colour in his cheeks and a twinkle in his eye's was priceless.

Secondly, The arrangements for a final resting place for Ellis have nearly been finalized. Yes, I know it's been a long time but it is the last thing we can do for her and we want everything to be perfect. After all Ellis was a very special young lady and deserves only the very best.

Thirdly it was Georgie's birthday yesterday, (you will know about Georgie from previous blogs) so we lit a candle for her and posted her songs on Ellis' Facebook page. I know that Jordan and Ellis will make sure she has a good time and parties in style.

                                                    Ellis & the Lovely Lisa

Finally, today is the Lovely Lisa's 1st transplant anniversary. After a very difficult recovery she is now getting back on track. Wishing you all the luck and good health Lisa, look forward to joining you in your celebration later tonight. You know the three girls will be looking down on you - watch out for those water bombs and no doing the Macarena.. lol x

Sometimes you just have to laugh.

Well, it's two months now since Ellis had to leave us. Yes every day is still incredibly difficult, things we can take comfort form one day will not help the next so every day is very different. I think the trick is to not look too much into the future, keep as busy as possible and allow a little time to cry and grieve but not to let it override everything else. So if I feel my emotions getting the better of me I literally try to start the day afresh,   as one of Ellis favourite songs says "pick yourself up and try again".

I now feel able to start compiling Cáel's memory box, following the instruction's which Ellis left for us of course! Cáel has also chosen some pics of him and Ellis to go in his room, so off to buy some frames.

Also wanted to say thank you to everyone who made a donation to dreamflight in memory of Ellis, over £540 was collected.

Lastly I thought I would leave you on a note that I know would have made Ellis laugh and she probably would have used it as her facebook status, so hope it puts a little smile on your faces too.

So Cáel is talking about different parts of the body and asking about the heart and lungs etc. When we get to the kidneys he says "well I have Kidneys now because I am small but when I grow up like daddy I will have adult knees" 

Sometimes you just have to laugh. After all, whatever life holds in the future, life will go on. So we owe it to ourselves, and to those we have lost, to try and make the most of it  xx

The most beautiful gift.

My Darling Ellis, seven weeks have passed since I saw you last and it certainly isn't getting any easier. Some days I cope ok and others, like today I don't. This indescribable feeling washes over me, engulfs and consumes me. I think of the life that you will never have, going on holiday with your friends, getting your first job, your wedding day, seeing Cáel  grow - his first day at school. I think of the laughter, shopping, your beautiful happy face, your witty remarks all things I will never have again.

I find myself asking why, why did this happen to you, I know I promised I wouldn't think this, that I would focus on the lovely life you had and the pleasure that you gave me, but you know what it's so damned hard.

Today I took down all of the cards that people had given us, re-read all the kind words. We put up your photos along with a painting of a daffodil that Cáel made for you and the lovely heart and white feather from The Salmon family.

As I write this I think why am I moaning, what am I complaining about. I was given the most beautiful gift, which I was lucky enough to have for 20 years. Some people will never be blessed to experience the love which I hold in my heart. That gift Eliis is you, you have truly made me the proudest mummy in the world. x