Saturday, 30 May 2009

'So Why Isn't Ubaid Growing Up Any More?'

The Last Ever Photo Taken of Ubaid and One From Happier Times

Zulf and Nyila Ali - A Truely Inspirational Couple

Remembering Ubaid Just Along the Corridoor From Where He Died Waiting For His Transplant

And My Little William Enjoying Life 6 Months After The Transplant Ubaid Was Waiting For
Life Is So Unfair Sometimes!!
Yesterday's photo shoot was one I was really looking forward to and really not all at the same time. Shortly after William was listed for his small bowel transplant, I received an email from Nyila Ali. She was offering support as she knew how it felt to have a life revolving around intravenous feed (TPN) and line infections. She knew all about living long periods of time in hospital and she knew all about waiting for your son's urgent small bowel transplant. Very sadly, Nyila was not able to offer any experience of receiving that life saving transplant. Two weeks before we arrived at Birmingham Children's Hospital for William's transplant assessment, Nyila and Zulf were kissing their son, Ubaid, goodbye in that same hospital, just along the corridoor in intensive care. Ubaid died of liver failure before organs could be found for the small bowel and liver transplant he so desperately needed. I have been following Nyila and Zulf's story ever since I first heard of them. They have been heroic in their media work to promote organ donation and often pop up on my google alert for 'small bowel transplant'. They are awesome and I was so pleased when Nyila mailed me to say they were interested in taking part in 'Gifts of Life' . I was really looking forward to meeting them but so wish it were in two weeks time, at the small bowel transplant recipient family day that I would be meeting them, not like this. As a mother of a transplant recipient, I feel a kind of guilt about those families who never got to enjoy the new life we are living. Guilt is not really the right word as it implies I wish William had not had his transplant. Of course I am so glad he did and I am glad it is my son who got his call and is alive but I wish Ubaid had as well and so had everyone else who died waiting.
Nyila and Zulf decided to revisit the hospital where Ubaid spent so much of his life, and where he died, for their photo shoot. This was, of course, the very place where our new life began with William's transplant which only highlighted the very different paths our lives ended up taking. I was really worried that I would get overcome emotionally during this shoot. I felt it before, I felt it on the way home and I feel it when I look through the images I captured yesterday. I warned Nyila that I may get emotional and apologised in advance. Nyila and Zulf were so wonderful and I felt relaxed with them as we shared our very different experiences, asked each other questions and chatted away. I was also very focused on taking pictures that would portray their feelings. We were really blessed by some fantastic window lighting along the hospital corridoor and in the chapel. The chapel is a place where all families, whatever their faith or belief, find themselves seeking a quiet moment. The wards Ubaid where spend so much time are along the same corridoor and Zulf and Nyila had also sat in there during these times and were happy to be photographed in there. William was with me for the day and spent the time playing in the chapel while we were taking the photos. It is his favourite place in this hospital and he was enjoying the time there, knowing no one as going to take him back to the ward for painful treatments or 'special sleeps'. This made it all the more poignant.
Before the shoot, we had lunch with the lovely Pauline from the donor family network. I have mentioned before the fantastic transplant network that exists. Pauline had followed William's story and came to see us many times during our transplant stay. She features often in our story over on my own personal blog and has become a very good friend. It was really nice to spend some time with her today and, as you can see, Wills had a lovely time with her. I love that picture, their hands held represents to me the unity that exists throughout the wonderful network of people who are involved in transplants and organ donor awareness. What a contrast that picture is with those of Ubaid, held by his parents.
William is very taken by the people he meets and is beginning to take things on board about them. Pauline is a funny lady who makes him happy and has made him laugh when he was feeling unwell, Emily is that happy lady who plays the piano to him, reads him stories, has lots of fun and has new lungs. William was asking all about Ubaid. At one point, he suddenly announced that Ubaid must have no energy if his new tummy was never found - a very interesting insight for me into how William is feeling himself these days in comparison to before transplant. On the way home, William asked 'So why isn't Ubaid growing up any more?' He knew the answer and was seeking confirmation. Ubaid isn't growing up anymore because he never got his new tummy. For the first time, I am going to ask anyone who has stumbled across this blog to help me to make sure that more people share William's story than Ubaid's from now on. Please think about organ donation. Both Ubaid and William needed organs from children so please think about that too. This is the end of my blog for today. Please go here next.

Wednesday, 27 May 2009

A Lovey Afternoon Among Friends

William wandering into shots while he explores the garden

A taster of the kind of of photos we were taking

loads of fun and action
Today's shoot was the lovely Emily and her lovely family. I last visited Emily about three years ago. This was before her double lung transplant and before Willam got more sick, ended up on a list for an urgent small bowel transplant and recieved his own gift of life - a lot has happened since then!! If you haven't already done so, then take a look at Emily's blog for her story.
Emily is loads of fun and has loads of energy. She is certainly living her gift of life to the ful!! The shoot refected this with lots of jumping around and being silly. William was pottering about and being William so it was lovely to watch the two of them and compare it with how things were before their transplants. William was really pleased with the new friends he made and I hope it won't be so long before we see them all again.
It was a very challenging shoot technically with very bright sun, shadows and very blond hair to contend with. The light was at it's best at 5pm when Wills and I had to leave to get home for meds, feed and bed. I must confess to staying a little later than I should have done. I am happy with the results but they do need a bit more editing and processing than usual to correct some of the lighting so, more than ever, the shots you see here and in the gallery are not the finished images. I love learning from the technical challenges I face. On spot, I decided to compensate for the light by setting the shutter speed very fast. That worked well but I had to sacrifice some of the creative features I was seeking. That is fine as I have the images captured but it is why I need to do more work on the editing than usual. So I got home, researched what else could have been done and gave myself a tutorial on exposure bracketing and compensation. I have spent most of the last 3 years and photographing in hospitals so was not fully up to speed on the challenges of a lovely sunny day. I am now ready for the next time. I have also ordered a reflector for ourside portraits. Maybe we will end up repeating this phot-shoot. In the meantime, I am happy with some of the images we have, especially one or two really special shots that you will see for the first time when they are processed and printed and in the exhibition and photo book! I am sure what I am sharing now will give you a flavour of the fun we had and the kind of images that were captured. There are some more in the gallery
I am going to update the stories and news sections on the website over the next few days so do keep on dropping in.
The photoshoots are all emotional in their own way and I really hope this is coming out in the images. I talk about technical aspects of photography and that is important but, above all, it is about capturing and sharing the emotional impact of organ donation and transplants. Yesterday's shoot was fun and uplifting. Over the next few days I have some very different shoots that will be very emotional for me. On Friday, Wills and I are off to Birmingham to meet the wonderful parents of Ubaid Ali. Ubaid tragically died waiting for a liver and small bowel transplant. This is something I find particularly sad and difficult because William received a small bowel transplant and Ubaid was cared for by our transplant team. Ubaid died just as William was being listed for transplant. On Monday, I am meeting a fantastic lady who donated her seven year old daughter's organs when she died suddenly in an accident. Her daughter, Jade, was born around the same time as my daughter, Ellie. This will be the first time I meet a Mum who donated her child's organs. I feel so privledged to be doing this and meeting all these amazing people.

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.

Thursday, 14 May 2009

Lisa and Ricky - Two Lives Transformed.

Ricky had a new kidney three years ago

Lisa is full of life after receiving a double lung transplant two years ago
In the last couple of weeks, I have been photographing people waiting for transplants. It is not an accident that the project started this way. I am hoping that those waiting for their gifts of life get them very soon so am always keen to photograph those individuals as soon as possible to capture them as they wait. Today, I met Lisa and Ricky. Don't they look terrific! I met Lisa briefly three years ago at a picnic following the Hydro Active Women's Challenge when we were all dressed as pink fairies and 'Emily's Angels'. That day, I met a frail and quiet lady who sat in a wheelchair watching. Lisa is now full of life and absolutely radiant. Those who know me will know that I can chat ten times to the dozen but I more than met my match in Lisa. It is fantastic to see.
Before her transplant, Lisa was on 24 hour oxygen and, eventually, 24 hour use of a mask that mechanically helped her to breathe. She is well and truley making up for lost time socially now, always out and about doing things. I don't think I have met many more people so full of life. Lisa met Ricky in the pub one night and they soon found out that they had both had transplants. They have been great friends ever since. Ricky received a new kidney three years ago and was on dialysis every single day in the run up to his transplant.
We had lots of fun on the shoot this morning. We started off in Nonsuch Park. This suited Lisa more than Ricky. I was planning to so some posed shots and lots of candid shots in the park and then in the pub we were off to afterwards. It soon became clear that I wasn't going to get anything candid from these two as they are both great at posing for the camera and did it even when I was trying to get them off guard. This project is all about capturing people as they are and the essence of their story. So, we went for posed shots. There are some more in the gallery We got some fantastic pictures outside the pub, in front of some interesting brick work that I had spotted on my way to meeting up. The results are really fun and quirky but are not going to be posted on the blog or in the website gallery. You won't be able to see them until the exhibition opens and the book becomes available in December.

Tuesday, 12 May 2009

Not the entry I wanted

This should have been a blog about meeting some more wonderful people on another photoshoot. Instead, it is a different entry but one that is well worth making as it is an important chapter in my journey through the project and the hurdles I face along the way.

I always intend to get to bed early on the night before a shoot but never do. By the time I have checked my kit (more than once to make sure!), checked all the train times and connections if it is a long jorney (more than once to make sure!), prepared everything to leave for this children, sorted out everything I want to take with me for the journey so I can make the best of the time on the train in keeping up with my job and my get the idea. It is usually well gone midnight by the time I get to bed. Last night was no exception and was made worse by my getting into and episode of LOST while doing it all. I went up to bed at about half twelve and checked William as I always do. His feed had come unconnected and weighing his sheets revealed that he had probably had all his meds, including the all important immunosuppressants, delivered into his sheets! So, a bed change, more medication, and then a stoma bag change was needed, by which time it was gone 1am. I decided to increase the rate of his overnight feed, only by 20 mls per hour, to make up for what was lost and that was where I think it all went wrong for today.

I woke at 6 to set off to Oxford and found William's stoma bag full and overflowing and not looking normal for him. It was way over his usual amount but I guessed it could be the feed and told myself I would go if the flow settled. Thirty minutes and nearly 300 mls more later, it was clear that I was going nowhere, except perhaps to the hospital if this continued. I had to make a call as there was no time to see how things went. As it happens, William's output did settle during the morning and it looks like it may have been due to the feed - who knows. It was a good job I stayed though as his blood sugar was pretty high all day and I would have received some calls about that and needed to chase up the diabetes team to find out what to do about it all. William has diabetes bought on by his immunosuppresant medications.

I was very dissapointed as really look forward to the shoots and hated having to let a participant down. I have been feeling very muggy and half asleep all day so maybe it is for the best that the shoot will be rescheduled and I will be there bright and breezy on another day. I am hoping things will be back to normal tommorrow and then I will be up late again, preparing for another shoot on Thursday.

Friday, 8 May 2009

Jess - Showing it as it is!

I am writing this feeling tired out after a fantastic week but a busy one. Gifts of Life is a national project and involves travel. It is great fun travelling to new places and meeting people but fitting it in around the children and work is a challenge and one that demands I set off early in the morning. So today I was up again at 6am to get William's feeds and drugs and packed lunches for the girls ready before heading off for another photoshoot. It is worth it every time. Every time I meet amazing and inspirational person and family. It is an honour and a privilege to be invited to capture their stories in my photographs.

Today, I travelled across country to Westgate-on-Sea to meet Jess. Jess is an absolutely amazing person. She has been waiting 4 years for a double lung transplant and has had 7 false alarms!! She is so strong and determined to help raise awareness of organ donation. Her photo shoot was very different to Gabrysia's on Tuesday. At a first glance at Gabrysia you may see nothing out of the ordinary. It is only when you look more closely that you see the blue tinge on the lips and greyness in her face. It is not so subtle with Jess. She is attached to a machine or a tank providing her with oxygen every minute of every day and needs a machine to help her to breathe deeply enough to stay alive while she is asleep. Jess was keen that I captured exactly what life is like for her as she battles to beat end stage cystic fibrosis and stay well enough to have that transplant. Early on in the photo shoot, Jess had a big coughing fit. Naturally, I stopped shooting but she motioned to me to carry on and photograph her.

We carried on the shoot in the same way and the result is a powerful set of hard hitting images that show how life is for Jess and others like her battling cystic fibrosis and waiting for lung transplants. The more I got to know Jess and her Dad, the more I could see the spirit that has kept Jess on the winning side of that battle for 4 years. I hope that has been captured in the images as well. I think the very fact that Jess not only allowed, but encouraged the kind of pictures that were taken is testimony to that. Do have a look at them in the gallery. I am going to have a hard job deciding which of those to use in the exhibition.

Tuesday, 5 May 2009

A Journey To Meet Gabrysia

I had a lovely day today, meeting Gabrysia and her Mum, Angela. It was an important milestone of a day for me too. Gabrysia and Angela live in Leeds and I am in London. Today was the first time I have left William to travel anywhere beyond which I can return quickly if any problems arise. I had a mix of liberation and fear in my tummy as the train pulled further from London but this was soon forgotton when chatting to Angela and taking literally hundreds of photos.
Angela told me all about Gabrysia. She found out her daughter would be born with a severe heart defect during a routine antenatal scan. At the time, the family were told their baby was unlikely to survive a week and, if she did, would need major open heart surgery. Gabrysia is a little fighter and has overcome two open heart operations and heart failure during her 15 months of life. Life is fragile and she has been listed as urgently needing a heart transplant since March 2009. We had lots of fun during the photo shoot and I got so many cracking shots that I really am spoiled for choice for which images to use. At a glance, Gabrysia looks very well but, as you get to know her, you begin to notice the purple tinge to her lips and the grey patches on her face. These become more apparent as she tires. I am looking forward to being told she has had her call.
Angela treated me to a lovely lunch which, after leaving the house at 7.30am, was very much appreciated. We nattered some more and then it was time for me to make my way back to William and the girls. I couldn't resist browsing through the images on the way home and don't think I fully contained my excitement over them. It was a fantastic day but I was relieved to be back home to find William was fine (of course!). I will get used to leaving him. It was a long day and I am tired but couldn't wait to get some pictures up in the gallery on the Gifts of Life website so do pop over and have a look. You can read more about Gabrysia in the stories section.

Monday, 4 May 2009

Looking at stories

Gifts of Life is gathering momentum fast. I am in contact with someone about it every day, often several times a day. I am delighted to be working in a formal partnership with Live Life Then Give Life and that the Gifts of Life project now includes a sub set of work entitled 'Give and Let Live' by the photographer Holly Cocker. Last year, Holly received a kidney from one of her close friends and her work explores the relationships between live kidney donors and their recipients. For me, it is fanstastic to be working closely with Holly and the Live Life Then Give Life team. Over the last two years, I have been working pretty much alone at home, or in hospital most of the time before William received his own gift. It is so nice to be doing a project with other people again. Thie gift of life extends beyond the transplant recipient and the very process of doing this project is, to me, a celebration of that and how I am using the gift we were given the day William received his transplant. I am constantly amazed of how the transplant community comes together to support each other. I am blown away by the support I am receiving in this project.

The more I get to know people, I also see how well we support each other in general. We share celebrations when someone gets that wonderful call or meets a significant milestone. we cry together when someone gets a knockback or loses the fight to keep going while waiting for a transplant or when post transplant complications knock an already weakened body down just a notch too far to recover. We all remember that transplants involve the giving of a gift and that act has two sides to it and I know that we all think of our wonderful donor families during all these times too. Sadly, I already know too many people who have lost their fight both waiting for transplants and due to post transplant complcations. Yesterday, the transplant community came together again to support each other over our sadness to hear another very young life had been lost. News like this makes me all the more determined to make this project as powerful and successful as it can me. My work is dedicated to everyone in this precious community and I so hope I produce something we can all be proud of.

Everytime I am in contact with a new individual or family who are offering to be involved in this project I am introduced to a new story. These stories inspire me so much. These are stories of hope for people on transplant waiting lists, stories of joy for those enjoying their gifts and stories of loss mixed with pride for those who donated their organs or who lost their loved ones while waiting for them. Tomorrow, I am off to Leeds to meet and photograph a little girl waiting for a new heart. I know a little of her story and can't wait to hear more about her. I also love the challenge of ensuring that these stories are captured in the images that will be seen in the exhibitions and in the photo book. I want the viewers to be able to understand something of these stories in the images they see. I want them to look at the pictures and experiences something emotional but I also want them to feel they have been looking at a collection of stories.