Day Fifty-Eight

2. Christmas hospital traditions

It has been a fantastic weekend. Yesterday was just wonderful and magical and today has been another fun and festive day. I’m now sitting in the living room, in front of the Christmas tree and surrounded by decorations with Ellie. We’re watching a repeat of the Christmas Gavin and Stacey and talking over Christmases past. I’m sipping on mulled wine too which is heavenly. It’s lovely and cosy but we are both feeling nervous.

For some reason, Christmas seems to be William’s tummy’s favourite time of year to misbehave, and it’s not to do with the food or any of the things that could make the rest of us a bit under the weather. It’s just one of those things. Our big set back that led to William being back on TPN and back on the transplant list happened just after Christmas, in fact, it all started on New Year’s Eve, bringing our festivities to a very abrupt end. A couple of years before that William was feeling unwell on the last day of term, the morning of his Christmas assembly.  He was determined to go in and take part and I watched his stoma bag fill and him look increasingly pale. It was December 20th and we were in hospital by bed time. We worked out a plan to make the most of Christmas day with friends offering to bring Hope and Ellie to us in the hospital early in the morning and William’s dad and girlfriend lined up to take over at the hospital in the afternoon and take the girls and I back home so we could have Christmas dinner in the evening. But during the night of 23rd we were transferred to Birmingham. Before William’s transplant we spent several Christmases in hospital.

Christmas in hospital is always disappointing (although I will make an exception to that this year if we are in hospital following a transplant!). We have always tried to make the most of our Christmases spent in there though and have some happy and amusing memories of canteen Christmas dinner eaten out of polystyrene take away trays with plastic cutlery, hiding Father Christmas presents in hospital rooms and bays waiting for Wills to get to sleep and all the fantastic staff, volunteers and visitors who do so much to make our Christmasy as great and magical as possible.

Having spent so many Christmases in hospital we have picked up some things along the way that have been built into our traditions. Chelsea and Westminster hospital (AKA our ‘Chelsea Pad’ and so much our second home before William’s first transplant that we spent more time there than in our real home) is bang opposite a Carluccio’s. They Christmas range is amazing and we ended up eating and giving lots of their goodies that year. I bought a big panettone and opened it for my Christmas Day breakfast with a big mug of freshly brewed coffee. This has remained my special ‘me time’ moment of Christmas. My coffee and panettone. The Gavin and Stacey Christmas Special is another one. It was first shown in 2008, the Christmas after William’s first transplant. His dad came up in the afternoon and the girls and I went over to the parents accommodation, then in the Thistle Hotel as they were building the Ronald MacDonald House. I had put up a mini tree and bowls of chocolates and crisps ready for us and we spent a wonderful girly evening. They were a bit young for Gavin and Stacey then but were amused at bits of it and at my giggles so we all ended up giggling together, munching on Quality Streets. Gavin and Stacey became firm favourites as the girls got older and got the humour and the Christmas one has always had a very special place in our hearts.

2. Christmas Fair 

After a lovely day of winter wonderland magic yesterday, today was equally magical with William’s school Christmas Fair. His school really go to town with their Christmas Fair and it’s a huge highlight of the year. I’m a bit nervous of big groups of children at the moment after our recent chickenpox contact scare when we learned that just being in contact with the dreaded pox would mean three weeks suspended from the transplant list. Contact for Wills means 15 minutes in the same room as someone with chickenpox, or who goes down with it within the next couple of days. So Wills and I went off to the fair with a plan that we’ll have loads of fun and just keep moving - five minutes in each place and we should be OK. It did mean that he couldn’t join his friends in playing the part of Santa’s elves or waiting in the cafe but at least we got there and we had lots of fun. The grotto was simply magical and I did pretty well in the bottle tom bola and will enjoy sharing my prizes with visitors in the run up to Christmas.

We stayed at the fair for about an hour and half but it was enough to wear Wills out. He was asleep very early again. It's getting bit too consistent for my liking now. Seeing him along side the other children today made it easier for me to see how he is lacking in energy and vibrancy these days. I can't wait to see him firing on all cylinders again. I just hope not too many burn out while we wait for his new wonderful gift.

3. Wisdom from Stan 

A Christmas special ‘Dinner Ladies’ has now replaced Gavin and Stacey on GOLD and, just as I was thinking about what to write next, I heard this;

“Them wires were in a dreadful tangle yesterday but they’re flashing away this morning so there’s a metaphor for you.”

Stan in Dinner Ladies after Bren has told him about a complicated evening.