The power of art..

Some samples of my photography. You'll see why they are here as you read on..

I must apologise for the long period of time between this and my last post but you will see why as you read on. I am always pretty busy but have been uber so over the last couple of weeks and it has all been pretty big, life changing stuff.

The title of this blog is 'My Journey with William' yet, regular readers will notice that the 'My' is often somewhat neglected as 'William' takes over my life. He has done. He has dominated it and I don't blame him or the situation nor do I think I could have done anything different over the last few years when he and I spent 80% of our time living in hospital. However, thanks to our wonderful donor and her family. He is home, well and, although he still needs a lot of care, it is care that others can learn to do. So, I have been thinking about my future and how I can use what we have all been through to shape it and how I can use the lessons we have learned the hard way, often too late, to help others cope with similar situations. I have been thinking hard, and praying too, to work out what I can do and, last week, my thoughts and plans came together.

During the months leading up to William's transplant, while we were facing losing him, there were times when life was unbearable. I was trapped in out 'Chelsea Pad' with a poorly and fractious child, often in isolation in a world that I found myself being rapidly absorbed into while losing contact with life outside. The girls were away with Mum and Dad in Stoke-on-Trent. I knew my relationship with Paul was crumbing and all I could find the energy to do was to look after William. I didn't really know what I was thinking and feeling and certainly had no strength to deal with it. Afterall, what did I matter. I just willed myself to get up in the morning and hold the thinning strings that kept our family and our lives together. I have always been a writer and was working on projects in hospital. But then, I discovered photography and, with it, my creativity was re-awakened. Suddenly, I had a means to explore and express the way I felt. I photographed everything, I journalled avidly, I scribbled, I collected pictures from magazines that expressed how life felt and how I wanted it to be. That became my lifeline. I turned our experiences into art and it saved my sanity. Suddenly, within my confines, I had a reason, other than looking after my Son, to get up in the morning. Something that was just for me and I had a means to understand myself.

This continued throughout William's transplant journey and I now have boxes of material from which I am writing stories, poetry and a novel and creating photo books and a small art 'installation'. From that the Gifts of Life project was born. I will be forever committed to using the talents I have been developing in promoting organ donation. I will be continuing with Gifts of Life next year and will be doing other projects to raise organ donation awareness too.

There is something else I want to do. I want others to be able to unlock their own creativity to help them cope with their journeys, particularly other mums of sick and life limited children. So, another very exciting project has now been born. Throughout 2010 I wil be working as an artist in residence at a children's hospice, which I will name when the families have been told in their newsletter in the coming weeks. I will be photographing a year in the life of the hospice and a year in the lives of some of the families during their every day activities. Through this, I will document the challenges these families face; the poverty, the relationship strains, the impact on siblings, the anguish of knowing you will bury your child. I will also document the joys that such a child brings, those special moments when you get a smile or a chuckle from a child who generally has very little obvious interaction with the world. I will write articles, poems and books and, as in Gifts of Life, raise awareness but I will also be doing something to help more directly. My artisit in residence programme will include workshops to help others use art and creativity in their own lives. I am really looking forward to what they come up with. I am so excited about this.

My next job is to find funding for this, although I will do it regardless but it would be nice to do it comfortably. I am hoping to get it from Arts Council funding but am also thinking more creatively too. Any ideas, please do let me know.

In addition, I need to find a way to fund my own family. So, here is where you find out the relevance of the pictures at the top of this entry. This week, I also launched my own potrait photography business. I have a passion for taking images of people and, while I have a drive to document and raise awareness through the medium of photography, I love just capturing people. So, I am hoping I can make a sucess of a business as well to earn the income that is very hard to earn through documentary work.

It is a big leap and a big risk but all of this feels right. It is certainly a new road on my journey and this time it is mine. I had such a good feeling yesterday as I sat back and thought of all I had created and that is what I have done too. No-one handed me these projects, no-one wrote me a job description on how to be an artist in residence and come up with the business. It is all created from scratch by me and I am really proud of it.

The British Transplant Games

We have been very busy since my last post. We had a few more wet but lovely days at Mum and Dad's AKA Grandma and Grandad's and then we were off the the British Translant Games. The games opened on William's 5th birthday, a birthday I am pretty certain we may not have seen were it not for his transplant coming when it did. The games were amazing, emotional, inspiring... I will blog properly about them but it has all be crazy busy since. I took photos and have been writing, hoping to get an article out about the wonderful children in the Birmingham Children's Hospital team who have now won the children's trophy at the games for 14 years in a row! You can see my pictures here I hope they show something about what a fantastic weekend the games are and how much everyone takes from them.

William certainly took a lot from the games, especially seeing other children who have had transplants like him. He loves Aaron and calls him his 'transplant brother'. We are going to participate in the UK Transplant Sports activities as much as possible as we all had a really great time. William enjoyed meeting people but was somewhat reluctant when it came to running. Quickly realising that his physical limitations were going to mean he came last by a long way, he decided to come last in style and go as slowly as he could, much to the amusement of the crowd who had been urged by the announcer to support the youngest competitors. William enjoyed the ball throw more and did very well to come 4th, nearly getting the bronze medal. He did get participators medals in the sportshall for the obstacle course and in the tug of war. He was featured in our local paper, where they made a bit more about the medals that his did get than I just did. You can read the article here accompanied by one of my photos. A few from the games have made it into print which is really exciting. I learned a huge amount form the seasoned pros who were there covering the event and aim to build on this straight away...watch this space.

I am hugely proud of William and of the whole Birmingham team and the fantastic staff that give up their own time to manage them right from the application process through the games themselves. If the games ever come near you, do go along and see it for yourself. It is easy to forget that all those 2000+ adults and children taking part are only alive because of the kindness of their donor families. When you do remember for a second, it is impossible to stop the tears from coming.