Thursday, 21 May 2009

A Precious, Fragile Gift To Cherish and To Nurture

19th November 2008
William on his way to Birmingham after receiving the call - very poorly!

20th November 2008
The day our that wonderful gift of life was given to William and to all of us

24th December
After a fair few ups and downs and trips to theatre, Wills was well enough to enjoy a very special Christmas in hospital with his sisters

January 2009
Home for less than 48 hours - William very ill with pneumonia then took a month to get his new bowel resettled and back home again.

February 2009
One very relieved Big Sis, finally home together again.

March 2009
In isolation at home and enjoying trips to the park.

April 2009
First ever taste of an Easter Egg.

16th May 2009
6 months post transplant. Out of isolation and enjoying the first day out in London for over a year.
Very, very well on that day, minor set back a few days later, very, very well again today. It really is a precious and fragile gift and every moment of it has to be treasured.

The series of photos above are some I selected to post on my own, personal blog, today to illustrate William's first 6 months after his transplant. My overall message is - just look how far he has come!!! On Monday night, William was pretty poorly. His new bowel was pouring our undigested feed, his blood sugar levels were plummeting and then rocketing and I was sufficiently worried to start packing my hospital bag. By the end of Tuesday, with a couple of minor feed adjustments, he was fine again. It was just an off day. It got me thinking though. A donated organ is a wonderful, wonderful gift. It is fragile too. Every transplant recipient knows of the care that is needed. This is a gift comes with lengthy care instructions and we follow them to the letter. Our, or our child's, life depends upon it and we think of our donors too and how we must treasure and nurture such a precious gift. We all know that there are lots of things that can go wrong. Transplant is not a cure, it is swapping one medical condition for another. However, the previous medical condition was leading to certain and often imminent death or life dominated by kidney dialysis. New life is a life that can be lived to the full and enjoyed but a life that does have ups and downs and a life that can bring complications that will shorten it. We were told to expect two or three emergency admissions in the first two years after transplant. So far, we have had one very big complication where William could very easily have died. Since then, it has been more a case of seeing how finely everything is balanced and how quickly things can go wrong if one element of that balance is upset.
I have blogged before about the wonderful and supportive transplant community that we have become part of and that this project reflects. Among that community, I know of people whose loved one's gifts of life were, sadly, shortlived. Every single one of those people remain forever thankful for the extra time they had together, be it a few days, weeks, months or years. These times bought moments and memories to treasure that could not have been possible without the transplant.
On Monday, I was due to meet and photograph one of the most inspirational women I have ever spoken to (am yet to meet but am so looking forward to doing so). Louise recieved a lung transplant and lives her gift to the full, despite the fact that she has met with some very tough complications. Please gave a look at her blog, she is amazing. Unfortunately, Louise was too poorly on Monday. I spoke to her on the phone. She sounded very unwell but her joy and hope was clear in every sentence.
Gifts of Life is all about telling stories with an aim to raise awareness or organ donation though these stories. Some of these stories are of happy endings, some of long waits and hope that the happy ending is around the corner, some are sad stories of losing a child but feeling so proud that their final act to the world was to save 6 lives through their donated organs. These are just some of the stories the exhibition and book will potray. I felt something was missing though. There are stories of people whose gift of life was just a little too fragile to last for very long but was still a gift that was nurtured and cherished and will be in memories forever. I am now going to include those stories and am photographing families who had those precious moments but they didn't last forever. It is an important aspect of the transplant story and completes the picture. I am glad to have made that decision as it feels right.
This has been a quiet week but that has been good as it has enabled reflection and, with Wills being unwell at the start and my becoming only too aware of the fragility of his gift at the moment, I would not have wanted to venture too far from home. I have also had a chance to look through the images of William's journey over the last 6 months. These are now processed and are being put together in a journal, together with my thoughts and some other bits and pieces. When the Gifts of Life exhibition opens, we will have just completed our first year post transplant so I have decided to make these journals available for visitors so they can share our journey with us and where my inspiration comes from.


  1. Thanks for sharing the photos Sarah, they're very powerful and portray the huge journey Wills has been through over the last six months. I'm glad he's doing so well now :)

    Glad to hear your plans for Gifts of Life are still progressing, I'm sure it will be a fantastic exhibition when it all comes together.

    Moll x x

  2. Great Blog Sarah and fantastic pics! I agree with Moll what a huge journey Wills has been on and you as a whole family. So glad that this week was just a minor blip and he is doing well now!

    Like I said to you before, can't wait to be photographed by you, I love your work!

    Much love
    Hol x