Day Twenty-Three

1. Downton Time

On most days I sit down to write this blog in the evening, after I’ve done William’s TPN and IV drugs, set up his drains for the night and done the ‘normal’ mum stuff like helping him clean his teeth, cuddle and say goodnight. I’ve always been a bit of a night owl and find myself at my most reflective and creative in the evening and early night. But Sunday evenings are special times set aside to watch Downton Abbey with Ellie (would be Hope too but she’s now off at university).

It’s very hard for siblings when you’re on the kind of journey we’ve been on with Wills. I tried to express this in my poem, A Letter to His Sister. When Wills was in hospital for a long set back a few years ago, both girls came to stay with me in the fantastic Ronald McDonald House. All three children went off  to the hospital school in the day and we spent time together as a family between school and William’s bed time. Then, when I was settling him for the night, the girls went across and cooked tea. We’d spend the evenings snuggled up together on the sofa watching Downton Abbey. We hadn’t seen it before and had two seasons of box sets to catch up on at the time. ‘Downton Time’ was really special for us. It was the time we got to forget about what was going on across the road in the hospital and spend precious mother and daughter time, often accompanied with munchies, chocolate or our good friends Ben and Jerry. We totally fell in love with the series, the characters and all they meant to us during this time. We have sat down every Sunday evening it is on together ever since and it always evokes those cosy evenings of just being together and losing ourselves in the world of Downton. We were devastated when they decided to kill off some of our favourite characters, Sybil and Matthew in later series and on Christmas Day of all days in Matthew’s case!!! These characters became like family to us and We haven’t forgiven them for that! When we were given the opportunity for a special day out together, we chose to go to Highclere House, together with one of our closest friends, to step right into Downton Abbey itself.

I always think of those evenings in the hospital whenever I watch Downton and often watch it just to place myself back there on lonely evenings now the girls are older and don’t stay in the hospital with me. It’s the same too for some other programmes. We watched the Gavin and Stacey Christmas special together on Christmas Day in 2008. The four of us hadn’t spent proper time together for months before William’s transplant as the girls were living with my parents and we were living in hospital. William’s transplant happened on November 20th and we had some big ups and downs in the early days. The girls finally came to spend time with us for Christmas. We spent the day together on the ward and then, when William’s Dad came in the late afternoon, went over to the hotel (before Ronald McDonald House was built) and watched Christmas TV, stuffed ourselves with chocolates and a few drinks for me and spend Christmas evening as close as possible to the way we would at home. Gavin and Stacey was the big TV event of the evening and forever reminds us now of that special Christmas when we got our Wills back through the biggest gift of all, organ donation.

2. Bone China 

This is a draft poem I wrote earlier today as an exercise playing with metaphor



Bone China


You held me in your arms
warming my cold, pale skin
And when you were finished
you would place me in a box
where I dreamt of the world
I yearned for you to share with me.
I tried to peek
but the lid was too tight.
I tried to hear
but sounds came muffled.
And in your box I lived
growing paler
growing colder, until
your arms could no longer warm me,
your kisses could no longer make me glow
so you shut my lid more firmly
Then, one day, you slammed my box so hard
a tiny split appeared in the middle of my chest.
You saw my imperfection
so threw me down
and walked away
As I lay discarded on the floor
sunbeams danced around me
waltzing through the crack in my heart
filling my soul with warmth
filling my eyes with light
Making me shine again.

3. More than just a blog

I wrote yesterday about the importance writing this blog has on my ability to process and cope with everything that is going on at the moment. I have also been really encouraged to hear from people who can identify with what I’ve written and especially those who have been touched in anyway. That’s why I write and what this is all about. Most amazing has been hearing from two people that they have joined the organ donor register since reading the blog. This is what I am hoping! I am a writer. I write and I want to use this blog to raise awareness of organ donation and transplants.

It is more than a blog though. When we get the call, I’ll stop the ‘three a day’ but will still continue writing. Along side the new material though, I will be going through all that has been written here, taking the best bits and editing them into an anthology of writing to use to further raise awareness. I want to make a professional job, both writing the pieces each day and in editing and producing the anthology. This will make the biggest impact on my aims but also costs in time and money.  It's Nanowrimo Novel in a Month time and I am writing 2000 words a day minimum on my novel as well as a target of at least one poem a day so there is so much coming to share with you.

Alongside the anthology, I will design and produce a set of 10 postcards with these depicted on them. These will be available within the first couple of months after William’s transplant - once we have come through the most difficult and critical stages and I can relax and think creatively. During William’s recovery in hospital, I will look deeper into the work on the blogs and take some poems, extracts, ideas and stories and work on them more to turn the unedited, raw material on here into finished works. I will select some of these and put them into an anthology, together with images and photographs from our journey. I will only make 100 of these at the most. The postcards and anthologies will be available only to those who help me crowd fund this project. I have set this up as a  project on Go Fund Me because, there, you the funds are dripped to you as they are pledged, rather than having to wait and see if you get the target and then receiving it all in a lump sum.

 An investment of £5 will get you a postcard, for £10 you will receive 5, for £20 the whole set of 10 and for £50, the set of postcards and the anthology. I’m sure I will add in other goodies as I think of them.

I had to come up with a target for the Go Fund Me page. I would rather have just left that blank as it’s difficult to put a price on writing. If I was to set the target at what creative writing should be worth, or what I get paid to write features in magazines, it would have been much higher and totally unrealistic. Instead, I found out that the average waiting time for an intestinal transplant last year was 188 days. I priced each piece of writing, three a day, at £10 each so £30 each day for an average wait.

If you are enjoying this blog, please think about helping fund this writing project.  I can promise, the postcards and books will be as lovely as I can make them and my thanks will be as heartfelt as can be.  I know I have written about this before but not for a while and having heard that people are signing up to the donor register having read this blog I really do want to double my efforts and need your help for that.  Thank-you so much to those who already have invested. I can’t wait to send you your cards and anthologies.