1. The end of a hard week
It’s the end of another week and this has been the hardest so far on this journey. Wills has been slowly and gradually deteriorating and this week it has pulled him down to being exhausted and just wanting to be cosy and rest all day. His stoma output is so high that it is almost a full time job to keep emptying and changing bags. We are going to our London, intestinal failure unit at Chelsea and Westminster on Thursday to discuss things and see if there is anything else we can tweak in his TPN (IV feed) to try and boost him a bit or if it will help to have more fluids. It may be that we just have to accept this is how things will be now and we’ll have to adjust again around it. Time will tell. At the moment we are making the most of festive cosiness and enjoying our time with Wills chilling snuggled up on the sofa while we watch Christmas specials and I read and write while he plays with his ipad. I won’t be able to go out much this year but my biggest girl is home from university on Monday and us three girls are looking forward to nights in with the TV and festive drink and nibbles. We’re declaring our house open for (healthy and germ free) visitors for the whole season. When the girls are out, there is really nothing to beat a good book and a big glass of mulled wine by the Christmas tree is there!? So we have adjusted our expectations for this Christmas and have now accepted that and are really looking forward to enjoying our new plans.
I’m sure many of the other 8000 families who have loved ones on the transplant waiting list have had to make similar adjustments this year. And then of course, there are the 189 families who had their loved ones with them when I started this blog but who have sadly lost their lives waiting for their transplant day to come. I think of them a lot as they plan a Christmas without them.
2. 'Listen! We are beginning our story!'
Yesterday, I started reading one of my ‘sit by the Christmas tree with mulled wine’ books for this year, ‘The Old Magic of Christmas: Yuletide Traditions for the Darkest Days of the Year’ by Linda Raedisch. Now when I say I stated, I mean I really have just started it but her opening quote got me thinking;
“ Listen! We are beginning our story! When we arrive at the end of it we shall, it is hoped, know more than we do now.”
This is from one of my most absolute fairy tales, and another story I will add to my Christmas tree pile, Hans Christian Anderson’s ‘The Snow Queen.’ This has one of my favourite stories in itself and has inspired so many of my other favourite books and films of this time of year.
I think this quote says so much about writing our own stories with a really open and honest mind, allowing our mind to take us on a journey of self-discovery as we write. This is something I need to reconnect with in my own life and journalling right now to get myself back on track with the spirit of calm and positivity I want, and need, to surround myself with right now. I will be writing it out twice, one for the notice board above my desk and one for my rescue box. I’ll also be writing it at the front of my journal. It’s a quote to meditate and brainstorm on.
I love fairy tales. I have loved them ever since I was tiny and had them read to me from books that are now battered and loved and that I look at often even now. I loved them when I was old enough to read longer versions for myself and I fell in love with them even more as an adult, when I discovered the often dark and mysterious original versions. I love writing based on fairy tales, especially when they are re-told in clever and creative ways. I think I will spend some of these cosy days and nights with Wills re-reading some and coming up with some ideas for my own writing. I came across this wonderful book, ‘Once Upon a Time. A Short History of Fairy Tale,’ by Marina Warner in a review this week and treated myself to it as a companion to my reading and thinking. What perfect reading and writing for Christmas and the darkest months of winter. I’m really looking forward to seeing where my imagination takes me.
3. Make Christmas miracles happen
Christmas is a time for miracles. We have already seen an early Christmas gift of magic for the lovely little Maddiee. One of our oldest friends in the transplant world started this week desperate for a miracle and it happened today. Other friends of ours are in desperate situations waiting for theirs to happen. We’re in our ninth week of waiting for William’s new gift of life. Last time we waited for twelve weeks so, you never know, that could be a Christmas gift and a Christmas miracle too. When I watch the Marks and Spencer’s “Magic and Sparkle’ advert I just wish I could be one of those fairies, just for one night, and make wishes come true and miracles happen.
Organ donors do just this for up to nine people so, if you’re not on the register, please do think about joining this Christmas and don’t forget to make organ donation and giving the gift of life part of your Christmas party conversation this year too.