Monday, September 08, 2008

The impact of the last twelve months

There has been a lot in the news over the weekend about transplants. I have printed off several articles to read and digest over the coming week. I'm sure there will be a lot more about it here as I read and reflect. I am new to the world of transplants and have some catching up to do. What I do know is that any advances that have the potential to help those on the transplant waiting lists get their organs as quickly as possible has got to be a good thing. The pictures above reflect this. On Saturday, we had our annual family fun day put on by the community nursing team. We always enjoy this day. In the past, William has had a fantastic time joining in with all the activities, especially the music session at the end of the day. The picture on the top shows him last year getting really excited playing his maraca and really enjoying the music. The picture on the bottom is this year. William spent almost the whole day on our knees cuddling with his 'blankie'. He enjoyed brief bursts playing in the Thomas ball pond and making a card with stickers but they really were very brief. He had no interest what so ever in the ceramic painting or the music - both things he loved last year. He didn't even run around when he was off his TPN. He just doesn't seem to have sustained energy these days and Paul and I have seen that as a steady decline over the last year. The picture of him watching all the other children looking pale and tired with his discarded maraca on the floor says it all. When I picked him up, he just snuggled up and told me (for the upteenth time) 'I'm tired, I want to go home' That isn't the William we used to have.
One of the surgeons at Chelsea and Westminster told me that the day we went onto the transplant list was the day we got our ticket. It is a ticket for a journey. We haven't begun that journey yet - that begins the day we get the call and William goes into the operating theatre to get his new bowel. Before we were accepted for transplant we had no ticket to anywhere. We now have our ticket firmly in out hand. What we don't know is where that ticket is going to take us. It will be a very long journey and some of the ground we cover will be tricky. I hope the journey leads us to a day when William is, once again, runnig around, joining in and enjoying all of his life to the full. That is the new life that he will receive and that is the gift that our wonderful donor family will be giving us. William has a wonderful spark and it is still there for all to see, he just struggles to sustain its shine at the moment.
To finish, I am going to borrow another image from the lovely Emily's blog (now listed on the right (this is mu life and I choose to love it) as I have found the gadgets at last! ) Emily talks today about a lovely service she went to over the weekend where donors were remembered. The lit a candle and from it lit six candles that were placed in a circle all around. The first candle was then blown out leaving the six shining. What a fantastic image!

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