Summer Breeze

The view ahead is clouded, the road ahead unclear, how can I move forward knowing you're no longer here. There's an emptiness inside my heart, a gap inside my soul, a part of me left with you and now I am not whole.                                                                

"But life goes on" I here you say, "take one step at a time and I will help you find your way. Don't spend your days weeping and asking why I couldn't stay, I am with you in your darkest moments and in the brightness of the day".

So now I need to dry my eyes, and wipe away a tear, for if I can see clearly I will see that your still here. I will feel you in the summer breeze, in the patter of the rain. I will fill my heart and soul with your love, until we meet again.

Back on track.

Well, after the last post I am now, once again feeling more optimistic and getting back on track, (whatever that is meant to mean !!)

So at the weekend Ellis's good friend Jenni held a charity disco, in aid of the Cystic Fibrosis Trust. A great night was had by all and I think lots of people woke up with a sore head the next morning x I believe that over £1000 was raised. Well done Jenni.

Ellis's favorite little boy, started school this week and Ellis would be so proud of him and how well he is coping without her.  I know he misses her but he always talks about her with a smile on his face and remembers the fun they had and the songs they sang together.

When we was on the plane and Cael was looking out of the window, he asked  "Are we in the sky" Yes I replied. "Ellis is in the sky with the fairies and angels so can we pick her up, take her on holiday with us, and drop her off on the way home". Oh If only it was that simple.

Finally Ellis was involved in a number of different charities and I promised her I would raise money and awareness for these. So now that I am redundant as a full time mum, I now have more time to focus on getting the ball rolling. So details will follow shortly hopefully with details of a Christmas Celebration.

Note to myself - we don't know what lies around the corner, so just try and enjoy life as much as possible. xxx  Until next time - laugh a lot, love a lot and live a lot. xxx

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