Saturday, 11 October 2014

Day One

1. By Way of Introduction

Welcome to Day One of my new blog, Three A Day: Waiting.

I will be sharing three pieces of writing every day on here for the foreseeable future. Then, one day, all of a sudden, I will stop writing here and the blog will be complete.

I know that doesn't sound like orthodox blogging behaviour so let me explain myself. Yesterday evening, my ten year old son joined the transplant waiting list. This isn't new to us. William had a small bowel transplant six years ago. I told that story here  and will soon be revisiting and resurrecting that blog because the story isn't finished. There is an unexpected sequel to tell. After six fantastic years, all made possible by a wonderful donor, we are waiting for someone else to say yes to giving the gift of life and becoming an organ donor. William's bowel is no longer working and he needs a new one. Not only that, he needs a liver, possibly a colon and, to make the plumbing easier, a pancreas and duodenum too. In short, he needs a HUGE operation and one that is all the more risky because it is a second transplant, taking place in a body that has already been through extreme stress and has an immunological system altered by six years of immunosuppressive, anti-rejection medications. I am a writer so words are the only way I can express how this feels for me. I'm feeling better already and I'm only on the second paragraph. 'A Tale of Two Tummies' is William's story. This blog is all about my journey and my feelings but I want to do so much more.

In the UK, three people die every day waiting for a transplant. The tragic fact is that not enough of us say yes to organ donation and most of these deaths could be avoided. I want to use this blog to highlight what life is like on the transplant waiting list, to remember and commemorate those of our fellow members of the list who will sadly never get to see life on the other side of their transplant operations and to challenge people to think about organ donation and help prevent those people from dying in the first place.

So, I am going to write three pieces every day on this blog. They may be poems, short stories, descriptive passages, my feelings or just the random ramblings of a somewhat scared mum. No matter what kind of day we are having, not matter how I am feeling. I will write. Then, that day when the phone rings to tell me that a wonderful person has donated their organs to William and he goes into the operating theatre to receive them, I will stop. The number of writings across the blogs will be equal to those who are on the list with us today, on day one, but whose lives have sadly ended because they were not lucky enough to receive that phone call themselves.

2. Tough Love

When you go through something in life that is so monumentally huge and scary that it could literally crush you there are only two things you can do. You can lay down and let it do it's worst, hoping against all hope you come out of the other side still breathing, still feeling. Or, you can take a deep breath, run at it full on and embrace it as a life time experience, all be it an uninvited one, but an experience all the same and one that has opportunities hiding within it and the secret to coming out the other side still breathing, still feeling, is to find what these opportunities are for you and make the most of them.

We signed the consent forms for William to re-join the transplant waiting list on Tuesday. The paperwork was completed yesterday and at some point in the afternoon or evening he would have been made active on the list, meaning he is a candidate for any suitable organs at any time, day or night. On Thursday, I had a bad day. I was moody, stressed and by the evening had just dissolved into a soggy mess. It felt like my insides had collapsed in on themselves and, for several hours, I could not stop myself from crying and shaking. I had a friend around at the time, someone close enough to tell me things straight. He could have just given me a hug and told me the things I wanted to hear. Instead, he told me that I had to make a decision to get through this and take some active steps to surround myself in positivity and not only seek, but use, the tools I needed to cope. He then left to go and see another friend...but did return a few hours later, holding out a late shop carrier bag and asking; "Do you want some brandy?" I learned that night that there are two types of wonderful friends when you are feeling that crap. The first I already knew about, those that hug you, tell you what you want to hear and give you a shoulder to saturate. Those friends are very much needed a lot of the time, but I learned that, equally fantastic are those who tell you what you NEED to hear, leave you to work it out for a while, painful though that feels, and then return - hopefully with brandy or something similar.

So, the challenge was there. I could carry on as I was on Thursday. After all, I was perfectly justified to feel and act in that way and the release that came with all those tears did me good I know. Or, I could find the opportunities within this challenge and embrace them. I'm a writer so, for me, the opportunities have to be all about exploring and documenting the journey and sharing it with others who can relate to elements of it, if not all of it. I am writing a novel that fictionalises our story and places it in a world of made up characters and situations. That's a lot of fun, tough at times, but fun because I can make anything happen in our parallel universe. I hope my novel is published and you get to read it sometime but it will be a while from now. This blog enables me to share the journey as it happens. Like taking photos on a physical journey and putting them on Instagram straight away. This blog is where the raw stuff will be. I'll write poems and stories but they won't be polished final version. Here you will read what pours out of my brain and out of my heart straight onto my screen - unedited. I thank my friend for challenging me to thing this way. It hurts but we all need a bit of tough love sometimes.

3.  Dreaming The Muse

You can draw yourself on the mountain of my strength,colour your being with my love beaming down from the skies,add texture and shade from the forest of my peace and when you wake my spirit will be one with your soul.

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