Day Fifty-Five

1. The story behind the first missed day on the blog

Yesterday was the first day I missed a day on this blog. My brother was so surprised he thought we must have got the call. No, we haven’t yet although I am hoping more as the days go on that today will be the day. I missed the blog because, this time yesterday, my living room looked like this!

I was in the midst of sorting out eleven more of our ‘Christmas in a Box’ hampers from our charity, William’s Wishes. I couldn’t stop until I’d finished sorting out all the presents into piles for the right age children in the right families, together with gifts for the parents and lots of Christmas decorations, crafts and goodies. It took mw well into the early hours. Most people would be able to leave the piles as they were until next day but William wakes early and has to get around with his TPN on a drip stand with wheels and so I had to clear everything to enable him to get around and ready for school.

It’s been a wonderful project to work on to be choosing and packing up goodies with lots of love and sending them on to families, knowing a little of what they are going though and how much joy the parcels will bring. It’s also be fantastic to be able to motivate so many others to join in and see our original plan of eight small boxes grow to sixteen very much bigger ones. It has bought a great start to the Christmas season, centring on what Christmas is all about. I can take a big huge sigh of relief now it’s all done though. My worst fear was getting the transplant call with all that all over the place. I would have struggled to sort out what we needed to take and I doubt anyone would have been able to jump in and make sense of it all.

2. As the days go by..

I mentioned that I am hoping more than ever as the days go by that we get the call. Wills is still amazing but his stoma output is consistently up at around two litres a day now and the nurses that look after him at school have been commenting on how much it is and how much more than at the start of the term. He is also going to bed straight after school, resting with his ipad and then falling asleep at around six several times a week. I think we’ll have to look at him going into school more part time next term so he has some energy to enjoy home as well. I really want him to get his new wonderful gift when he is as strong as possible. Most people on the transplant waiting list will decline whether steeply or gradually as William is. This is why we need more people to say yes to giving that amazing gift of life so more people can get their gifts without having to wait too long. In the meantime, the best we can do here is to keep Wills going as normally as possible so he stays as up and positive as he is doing.

3. One of my favourite quotes 

This is one of my favourite quotes.

The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart.
Helen Keller

We need to take the time and be in each moment long enough to feel it with the heart. I’ll be writing this in my journal as something to remember to do.