Saturday, 29 November 2014

Day Fifty

1. Heebyjeebies

Gosh, when you blog everyday and especially when the posts are titled with the days gone, it really does mark the passing of time!  Sometimes I look at the numbers and it seems that time is running away with itself and at other times it seems to be going so slowly.

Today has been another of those days when I have the 'heebyjeebies' and just don't feel right. It's a real sense of something coming and it always makes me wonder if the call is coming, or something else. It's real physical nervousness with butterflies and makes it really difficult to concentrate on anything else.

William's stoma output (the measure of how well his bowel is doing) has increased a fair bit this week. It's still steady, nothing dramatic thankfully. It's more that he has a bad day, followed by a bad day...and then you realise that this is the new norm. He doesn't digest but does want to eat very small tasters. In fact, he wants food more than ever now he can't have it but I have to limit it to a mouthful or otherwise it is dramatic! His output is now green or yellow bile with basically vomit floating in it. In fact, at times you can just see what looks exactly like vomit coming from his stoma. It's all very soul destroying but no longer worrying because we know where things are and are putting hope in finding a second wonderful donor and getting him another new tummy. The worst thing in practical terms is that his stoma never really stops seeping and so it is very difficult to change his bags as the area around it just doesn't stay dry enough, even for a few seconds, to stick them. This is resulting in a lot of changes - day and night - and a very tired mum.

2. Pay It Forward

Wills and I have spent many Christmasses in hospital. One year, we went in on 20th and were transferred to Birmingham in the night of the 23rd. We couldn't really take Christmas with us and had to make the best with what was still in the shops. This year, Wills and I, together with our amazing supporters of our charity, William's Wishes, decided to make sure others who will be finding themselves in hospital this year, or who have had a hard year, get Christmas sent to them in a box. Today, I've been sorting the fantastic pile of donations. We can't walk across our living room right now. I am having so much fun sorting out piles of presents, crackers, decorations, chocolates, cake, wine, craft packs... for each family to receive. I can just imagine what it will be like for them to receive them. I have talked before on here about the amazing random acts of kindness people have shown us and how much it lifts you, makes you feel loved and cared about and gives you memories to hold onto. It's great to pay it forward. I love the concept of 'pay it forward' and there is a great movie with that title if you fancy a good, lighthearted feel good movie and be challenged to see what can be achieved when we live that way.

3. Christmas in a box

This is a poem I wrote when I was first putting together the wish list for donations for the Christmas hampers. I thought I'd share it again rather than just putting a link to it. I won't make a habit of re-posting things (unless I have developed them) I promise. It hasn't been a day for writing though. I will do better tomorrow!

Christmas in a Box

I’ll pack you a box full of Christmas;
Mugs with hot chocolate and candy cane spoons
Chocolates and toffees
Jellies fruits and fudge
Christollen, lieberkucken, gingerbread and shortbread
Royal Iced Christmas cake
Nuts, clementines and dates
Bottles of wine, brandy and Baileys
Crackers, paper chains, snow globes,
Real snow
A snow man
A pine scented Christmas tree
Twinkling with fairy lights
and bright decorations
And a pile of wrapped presents
Books brimming with adventures
Handmade Dolls, cars and trains
Candles and perfumes
Board games,
I’ll pack you a box full of Christmas;
Days packed with fun with your loved ones surrounding you
A magic box that makes wishes come true
A pillow to sleep on that stops all your nightmares

An end to the pain and the sickness you’ve struggled with
Face cream for mummy to wipe off worried frowns
Promises that next year will bring good health forever
Energy to run, dance and play like a child should
Days full of happiness
Days full of smiles
I’ll pack you a box full of Christmas
and send it with all of my love.

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