Monday, 24 November 2014

Day Forty-Five

1. Our Second Family 

I have just finished watching our wonderful chaplains at Birmingham Children’s Hospital on the BBC2 Series dedicated to their amazing work. I watch it every week and I don’t think I have managed a single one of the five episodes (all on iPlayer) yet with dry eyes throughout. Our own ward 8 has been featured several times and this week the program followed a young heart patient and her mum as they waited for the decision of her transplant assessment. I knew just how she was feeling, and how she feels now waiting for that phone to ring, simultaneously dreading it and willing it to do so. It was another emotional watch for me and has left me a bit churned up too.

Birmingham Children’s Hospital is a very special place. It really is a village of little families with each ward, and speciality full of such amazing people who become so close knit and those, like the chaplains, who work across them. This makes us so comfortable and secure when we need to be there and makes it feel exactly the right place to be when our little ones are sick. When they are well, we remember it fondly but are happy to be away at home. Being on the transplant list is a funny kind of experience in that we are happy to be home but, at the same time, want to be where Wills can be mended again and get as well as we know he can be. You kind of don’t feel completely settled where you are when you are on the list because you know that at literally any minute, day or night and usually night, you will have to jump up, pack up and go. Your roots can’t go too deep when you will have to up and leave in such a rush. Seeing our hospital world through the little window granted by the TV today left a big part of me wishing so hard for the phone to ring. I’m looking forward to seeing our Birmingham family, including Nick, the chaplain who covers our ward. I’m looking forward to talking with people who fully get how we are feeling. Yet, at the same time, I am loving every second of being home with both children, sleeping in my own snuggly bed with my books and my treasured things around me. I know Wills is feeling the same mix of feelings and desires.

The only thing that is certain when you are living on the transplant list is where you are now, this moment. So it is a fantastic exercise of living in the moment, making the best of it, not dwelling on what has already happened that has got you to this point and not looking ahead to what may happen tomorrow, or even in just a few minutes. I am beginning to find the first bit pretty easy now, in fact it’s becoming a way of life for me to make the best of the moment. The not looking back or forward is a lot more of a challenge! When you are living the moments in hospital you can’t get a birds eye look of yourself in that situation and the people who are there around you. Watching the TV series gives me a really valuable chance to see that and I am really lucky to have it. From that, I am reminded in a very real and visual way how much we will be welcomed back with love and supported every step along those difficult early days and weeks after William’s next transplant. It is incredibly reassuring.

2. Turning Challenges to Opportunities

Before I got all emotional watching Children’s Hospital: The Chaplains, I spent most of the day catching up with journalling on prompts and ideas from the ‘Write Your Freakin’ Heart Out’ prompts. A big section was about reflecting on our own story and seeing it as a journey with endless horizons and possibilities. I wrote the main points of my entire life story on a very wiggly line across the stage. When you have a child like William it seems that life become steadily less stable and it is so easy to look around at everyone else’s life and dwell on the ‘if onlys.’ I wrote about that earlier in the blog here. One thing I am fast realising is how totally futile and pointless  that is. Everyone has their challenges.

Every family has their challenges. I wrote a piece that will get worked into the novel in some way where my heroine takes an evening stroll away from the hospital and looks in on the homes that seem to have everything she is so longing for. I shared that section here if you’d like to read it. A lot of my novel is autobiographical. One way I am using my story is by giving it to my characters and then letting them run with it and see where it leads them. I really did go on a walk along the streets in Chelsea and look into the windows of those beautiful homes and beautiful kitchens and wish so hard to transport my family into those worlds. But, if we had got there, what would we have found? It wouldn’t have been the perfection it seemed I’m sure.

My reflecting and writing on this blog has made me realise that I am tired of trying to battle against the path life has given us. I am tired of trying to put that square peg into a round hole and think that I can live and work in the way that others around with different challenges, but challenges that can be squeezed around a none to five day, or at least a stable flexible hour working can live and work. I have to learn to look at the opportunities the path we are on gives me; the things I learn about myself, the things that can become my strengths and USP and find a way to work and support the family with those tools. I have some ideas, some cunning plans…. so watch this space.

3. A chance to invest in some wonderful goodies

While I am coming up with my new master plan, I am going to shamelessly plug the ‘Three A Day Waiting’ project on ‘Go Fund Me'  again. I am not very good at plugging myself but I need to learn to be better at it if any of my ideas are going to take flight!

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 and these messages are inspiring me too with ideas for how I could build on this and help others along their own journeys.  Most amazing has been hearing from several people  now 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.

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.

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