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.