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.
8 comments:
Fantastic as always and I wish you all the luck in the world.
Julie x
WOW is about all I can say!! What a journey you have been on and now at this turning point you are facing a new road - and it sounds so amazing and it sounds just right for you!
Jac xx
WOW is all I can say too! I truly hope it all goes well for you and wish you all the luck in the world.
Emma x
What an inspiration you are to us all hon, I am so proud of you and wish you all the luck in the world you deserve it!! Much love as always C x
Hi Sarah, if i know of anyone who is after a photographer I will reccomend you. Taking pics of families at the hospice sounds lovely, there is a charity in America (the name has just escaped me) which does free photography sessions for families with an ill child, i always thought it was a lovely idea but despite lots of searching have never found a version in the UK.
Good luck with it :)
A lovely update to read Sarah. I'm so glad that you're being able to focus on you now while Wills is so well. The artist in residence project sounds like a great idea, so I wish you the best of luck with both that and your portrait photography business.
Take care,
Moll x x
Woweee!!
I had a lump in my throat reading that hun. You are a huge inspiration you know, I'll be praying for your continued success in your new ventures.
Much love. x x x
Hey Sarah, just saw this post now. Wow.. all I can say is, AWESOME. All the very best for your project xx
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