Day Thirty-Six

Today has been the most incredible day! Truly one of those days I will remember for the rest of my life for so many immensely special things. There is a lot that I will come back to over the coming days and write about a lot more deeply when I have had the time and space to think about things more. Right now, Wills and I are busy making the memories, rather than a  reflecting on them but there is, and will be, very much indeed to reflect on.

1. A  Parade of Bright Green Stars

The reason we are in Devon this weekend is because, today was the day Christmas was officially launched, with bands playing all day, a lantern parade through the town and music with fireworks and lasers over the harbour. All very exciting sure, but why would we travel all this way when our home town, Croydon, switched their lights on this week too and we live near London where all the big A-list get Christmas going. Simple, Torquay did something really amazing this year! Our beautiful friend Julie and her husband Chris have a charity called Bright Green Stars, I’ve mentioned it before so regular readers will already be familiar to the concept. The Bright Green Stars are our amazing organ donors, Green Star Man is a superhero, representing our super hero donors and with a mission to get everyone in Torquay first, the UK next, talking about organ donation and considering joining themselves. This was inspired by their gorgeous little daughter, Lottie, who had a liver transplant as a very young baby and was the youngest surviving recipient at the time.
We actually Julie and Lottie here in Torquay eighteen months ago, even though they are under our transplant team.

This year, Torquay decided to do something different and base their Christmas Parade and switch on around Bright Green Stars and organ donation. What an amazing idea!! William also has a charity, William’s Wishes, and within this William’s Big Wish is that everyone would want to be an organ donor when they don’t need them anymore. So, Wills was very excited to hear what was happening in Torquay. I was asked to contribute something really amazing to the whole Christmas campaign which I am so very near to being able to share with you. I told you on Thursday that Bright Green Star Man had spoken to our other Torquay superhero, Luke Tillen whose charity, Torbay Holiday Helper’s Network made it possible for Wills and I to be here for the parade today.  What we weren’t expecting was that Wills was to lead the parade at the side of Green Star Man!

I was the proudest mum in the world this afternoon when Wills set off through the town, carrying a big bright green star that he said represented his ‘A,’ the donor who saved his life six years ago next week, when he was four years old, as well as Julie’s big brave boy, Daniel, who became a donor a few weeks ago and all the other donors, especially those who saved our many friends in the transplant community. Wills himself represented all those who, like him, really need a bright green star of an organ donor this Christmas. Wills found it really hard going but was determined to keep walking with his star and not to hope into the car ahead of the parade. He wanted to do this for his A and we said that she would be watching and would be really proud of him. At the end of the parade, we went up onto an open top bus where Green Star Man gave a speech to the 20 000 people who had gathered to watch the lantern parade and light show. How amazing that these people got to hear about Lottie - a recipient, Daniel - a donor and William - waiting on the transplant list (although he is also a recipient too) and all the others they represent, instead of hearing a celebrity say a few sentences about their latest book, TV show, album or pantomime. Wouldn’t it be amazing if more towns could do the same and. These events are really all about the Christmas shopping, shopping for gifts and what better opportunity exists to raise awareness of giving the greatest gift of all?!

2. Time to Just Be...Mother and Son

Luke, being the wonderful and caring person that he is, invited Wills and I to come back to Devon right back in January, when Wills was so unwell and spent so much time in hospital. When we knew we were going back on the transplant list I was very much in two minds whether to come as soon as we could arrange things, creating more magical memories…just in case… and to bolster us through what is to come, or whether to leave it as something to look forward to one summer afterwards. In the end, Luke worked his THHN magic and got us here for today and we’ll stay until Wednesday morning. We plan to pack as many fantastic experiences as we can into those precious days and started off very much as we mean to carry on today.

After a yummy breakfast we were straight down the Cliff Railway to Oddicombe Bay Last time we were here there were beach shops and cafes open and the children hired pedal boats. It was an amazing day and one we remember and talk about very often. This morning was very different, Wills and I spent an hour looking for striking and interesting stones to add to our collection, throwing others into the sea and running from the odd wave leading the incoming tide. There were only a handful of others on the beach in all the time we were there, people walking dogs and two very brave people out swimming. It was a really peaceful and intimate time between Wills and I. I could feel all the tension and worry disappear as we played and Wills chatted about wanting to do lots of exciting things in his holiday. I knew that, the Green Star Parade aside, it was really good and important for us to have this time. It would be lovely to have the girls with us but they are older now, Hope is at university and Ellie had things on.

I think it was meant to be really that Wills and I have these few day, just the two of us. When we are usually away from home together it’s for hospital. It does us so so much good to have fun and play, rather than doing treatments and soothing him through painful procedures and surgeries. That’s what THHN is all about!! Three years ago, we had out first ever holiday all together as a family thanks to them and that was incredibly important and special. That was a time when Wills was as good as he has ever been and it was a celebration of having come through so much and looking to the future. This time feels, and is, very different. This time, we are putting memories into the bank to carry us through the very tough times we know we have coming This morning, down on the beach, I realised how much we need this.

3. Tempered by Waves 

Here, I have to apologise for sharing another idea and kernel of a poem rather than even a draft poem. As I said at the start of the blog, I am very much in living mode rather than being reflective. I was watching the sea drag over the stones today and then thinking about how it has tempered those we chose to take home, making them into whatever it was that made them stand out from all the other millions on the beach for us to pick them. I took this photo because I know I want to come back to this idea when I get home and look back on this week.