Thursday, March 26, 2009

'Gifts of Life'

Those who know me know that I never do things by halves. I had a bit of an idea a couple of weeks ago. After testing the water a bit, it has now grown into this...This is my project plan that is now out there in the world and people are already getting involved. It is hugely ambitious but, with a bit of help and support, I know I can pull it off. I am determined to. It could be really powerful and photography is the way I have been expressing our journey for quite some time now. It is time to take it wider. If you can help with any aspect then please let me know. It is going to be fun.

'Gifts of Life'


The aim of the project will be to capture people waiting for their gifts of life or who have received their gifts. I plan to spend a little time with participants, getting to know by having a cofee, a drink or some lunch or simply sharing a converstion before I get the camera. This is so I can capture the essense of their personality and the imact waiting for or having received their gift has on their life. The photos will be used in exhibitions and will form a photo book to create a piece of art aimed at raising awareness of organ donation. I hope to use this specifically to support and promote Live Life Then Give Life. All participants will be asked to sign a 'model release consent form' to give consent for their pictures to be used. The Photos The photos will consist of portraits, candid shots and shots of medical equipment, medications, treatment or hobbies and activities that are difficult pre-transplant and being enjoyed post. It will depend on what is important to capture to represent each individual. I will take a lot of pictures during each shoot to make sure I capture what is important (oh the joys of digital!)

Time Scales

Most of the photos will be taken during June and July 2009 (once William is out of isolation after his transplant and back at school enabling Mummy to get out and about again ) I may be able to take some pictures with people local to me (London) before then. I want to be able to include people all over the UK but this is being funded out of my own pocket and I don't drive so there will be limitations. Photos will be processed in August and September I hope to be able to hold some exhibitions in December to coincide with Christmas and the theme of a gift. Once the exhibtion has been created it can be put on wherever and whenever there is an opportunity.


The work will be compiled into an exhition that can be reused whenever there is an opportunity. There will also be a photo book that will be sold along side the exhibitions. The book will help offset costs and if there is any profit it will be donated to LLTGL. A facebook group to promote the project will be opened at the end of March 2009 and there will be a blog to enable people to follow the progress and see some of the work in progress.

How You Can Help and Get Involved

By being a participant and being photographed.

Helping promote the project among your networks

Helping organise an exhibition in your locality

If anyone knows of any body or company that may be able to sponsor any aspect of the project, please do let me know. I will make this as good as I can within my own finance but there are a lot of costs involved, especially in printing and framing pictures for an exhibition, potentially hiring a venue and in the up front cost of printing promotional materials and the photo books. Maybe you know of somewhere who would house and exhibition for free? Maybe you work for a company or firm who may be able to offer some sponsorship. I don't have any experience in this are of the project but just have a passion and a burn to create this and use it to promote awareness.

If anyone has any ideas please do let me know. I am not too proud to be helped in anyway or for someone to make any suggestions. Like I say, I just have a huge will to make it happen. It is hugely ambitious but I think it could be really powerful.

Sunday, March 22, 2009

The Brightest of Mothering Sundays

Mothering Sunday Dawn

You Know I Don't Like Nystatin

Pensive At The Dinner Table

Looking and Feeling Great

After Dinner Games
Today, I had all my three children with me celebrating Mothering Sunday. This time last year, I would never have dreamed we would have seen William looking like this. The first thing I saw when I got up was the sun streaming into his bedroom, bathing it in colour and his little hand and foot sticking up over the cot, pointing towards the drip stand where his TPN is now replaced by a feed that he is absorbing SO well he is putting weight on too fast. We had a roast at lunch time and a 'Grandma's tea' of home made bread and treacle scones with cakes from the Sunday School bake sale. The children really love these meal times (once William has been prized from his beloved CBEEBIES) and often sit playing games while I clear up. William even managed five tiny licks of yogurt.
Hope and I went to a church quiet day yesterday and lit a candle for our donor's family, especially thinking of her Mother. We dedicated Christmas tree lights and Christmas and a candle today. I think light is going to be central to the way we choose to remember William's donor on these special days. That gift filled him with light so it is very appropriate.

Friday, March 20, 2009

Moving up a couple more ladders

It has been a crazy couple of days. Yesterday, we headed up the M40 to Birmingham for our first clinic appointment since William's transplant, having missed the first one as we were back on the ward following his pneumonia. All is going very well. We are now able to stop a few of the fourteen medicines he has been on every day and reduce the doses of a couple more. We have stopped an antifungal drug, the drug he was on to thin his blood, allowing it to flow more easily through his new blood vessels, and the drug he has been on for the last few years to protect his liver from the impact of TPN. We did stop this one immediately post transplant but his liver got a bit cross about it. For the first time in a year, his liver function tests are not normal so we can stop it. We have reduced the codeine that works with another drug to slow his intestines so they can absorb effectively and have reduced his dreaded 'nystatin', an antifungal he has to take, kicking and screaming, in his mouth.

As well as the meds, we have also reduced his feed as, after four years of struggling to get weight on him, he is now being over fed by his gastrostomy and putting it on too fast. He is down from 3 to 2 bolus feeds a day so I am hoping he will begin to develop some hunger and be tempted to try something to eat.

The only thing we have needed to increase is his insulin as his blood sugars are still a little too high. He now has to have two injections a day, rather than one, and may need to start another insulin with his feeds. His reaction to that was 'That is not a good change!" My feelings are that is is a very small price to pay for a transplant that has moved him along from lookingand feeling like this:

to this:

So pink and full of life. I still get excited about it every day. Everyone is so pleased with him that we don't have to go to Birmingham until his next admission for scopes and biopsies in April/May and only have to go to Chelsea once a month now. He will continue to have weekly blood tests and be weighed at home. He does still have to stay in isolation until the end of May but time is passing and we will soon be out and about again, not that I want to wish away a single moment of our lives together.

In my last entry, I shared that I was going to take the plunge and put some prints into the competition at the camera club I have just joined. Well, I did and managed to get the maximum marks of 12 for one of William running along the corridoor after a blood and only 1/2 mark short for a portrait of him, entitled 'waiting'. I got merit certificates to stick on the back of the mounts. I was really surprised and very happy. The judge spoke to me afterwards and told me I had an empathy with people when taking pictures and capturing them well and that I should keep going taking pictures of my children and other projects involving people. I am really interested in street photography and 'urban portraits' and hope to concentrate on these areas in my photography course. I also want to develop the work I have done in capturing our transplant journey and have an idea. All will be revealed soon in my 'arty farty blog' so watch this space. In the meantime, here are the two images I entered. I have posted them here before but, for anyone interested, is saves you scrolling through all my ramblings to find them. I love the portrait the more I look at it. A picture does say 1000 words. That was what it was like for William to be waiting. The high resolution version shows the sore lips and the tracks of dried tears. I have taken a lot of pictures of him post transplant but haven't quite captured what life is like for him now in that one single image that says it all. I hope I can soon as the comparison will be a powerful thing.

Tuesday, March 17, 2009

Busy times

Gosh, it has been a week since I last posted! Well, as I said in the last post - we have been living life to the full! The last week has seen me beginning a mega work catch up. I have had a really productive time catching up and moving things forward for The Brompton Fountain I have also been working on my theology course and some photography.

I joined The Croydon Camera Club and am going to take the plunge and submit some of my photos into the print competition tommorrow. It works in rounds and is way in so the points won't count to anything but it will be great to get the feedback. That is what I need as I am developing my skills.

Talking of photos, I have had over 200 printed of all the various aspects of William's transplant journey to put together in an album, some frames and for diaries and work books for my various courses. When the children have gone to bed, I am going to spread them all over the floor and get them into order (why do they never stay in order when they are printed?!). Thankfully, I still have them in dated files on the computer.

Tommorrow will be another big Brompton Fountain work day but I will then start using my organised photo albums and this blog to begin telling our story. First I need to write the article I promised Live Life Then Give Life and, as anyone who has had a look at their website lately will have noticed, I need to re-write our story so that it can be moved from the 'waiting' to 'recipient' section. Then, along with other bits and pieces along the way, I aim to write a book of our story, together with some photos and poems. Oh, and I want to do a more reflective photo book..... now you can see why it has been a week since I last posted on here!!!

Hope, Ellie and I went to a lovely Christening on Sunday. It was so nice to be able to say yes to the invitation.

Almost forgot to say, William is still great. I guess it shows how great he is and how much life is settling down that I did almost forget to mention this. We are off to Birmingham for a check up on Thursday.

Tuesday, March 10, 2009

Living life to the full!

The children having a lovely time at CHASE Hospice at the weekend, and William even licking his fingers after dipping them in yogurt.

I can't believe a week has almost passed since I last blogged. Wills continues to thrive. We can't believe how much life and energy he has not. It is wonderful to see. His personality was always comic and full of fun but he now has a new vibrancy. We spent the last weekend at our hospice and, as you can see, all the children (and their Mum) had a really happy time. I feel a lot lighter now. A lot of worry has gone from all of us. Whatever happens now, it was right for William to have the transplant. Of course, there will always be uncertainties for anyone after transplant but how ever many years he has now will be years of living life to the full. We all are. It feels a lot like life has begun again for us all. Before coming on my blog, I booked tickets to take Hope to see Moya Brennan in a couple of weeks time. I just would not have taken a risk on booking something like that during the last couple of years as it would have been so likely William would have been in hospital when the day came. (As soon as I had booked them I realised Hope is going to be in France on her French exchange 'Doh!' so this will now be a treat for Ellie.)

In my last blog I mentioned how I am trying to put all the pieces together and build my own life. Well, I had a really exciting meeting with my mentor for theological reflection and spirituality in my theology and vocation course. She was really excited by all the material I have collected over the last six months; the writing, photographs and other items. She gave me some fantastic guidelines on how to use it all to create the reflections I need for my course but also to use as the source and foundation for many more projects. I am going to re-start using my 'arty farty blog' - 'MyJourney With William, an Exploration' to share how this work develops so keep a look out over there if you are interested in the creative and spiritual elements of the journey.

Wednesday, March 04, 2009

Putting pieces together

The last couple of days have been very productive for me in terms of work and writing. I have really struggled for the last few months to get things completed. I have been gathering experiences and writing chunks of things but these things were all in bits and pieces in my mind. What I have struggled with is bringing things together to form a complete piece of work or writing. I seem to flit between these chunks and do a bit of this and a bit of that but not really concentrate and bring it all together. I think a lot of it is the stress and intensity of life over the last couple of years and also the fact that snippits of time are all I had to work in whilst I was in hospital with William. I had to adapt to that. I have sat down with the Brompton Fountain 3 year strategy, which ends at the end of this year. I have actually done most of what I set out to do and the rest can be caught up with during this year. What is clear though is that the things I have managed to do lately have been things that could be done in bits and pieces. This week has been good as I have managed again to sit down and concentrate for long periods of time and complete fuller and more complete pieces of work.

Life feels the same. There are lots of bits and pieces that slowly need to be bought together. Some of them are clear where they fit but others not so. What is needed now is time to really reflect and to sit back and get some perspective. Lent is a time when Christians reflect on their lives and how they can be improved in terms of their relationship with God. Lent has never been so timely for me. I am using it to put the pieces of my spriritual life together. One of the books I am currently reading is 'The Day is Yours' by Ian Stackhouse. This is all about living each day at a time and using the natural rhythmns of the day to do so. This is something I am finding really helpful. One foot in front of the other, one step at a time, day by day and concentrating on the here and now. These things have been the biggest lessons I have taken from the last few months and years. I intend to live each day to the full and let those pieces fall into place naturally. The dust needs time to settle before the patterns it leaves behind can be seen.

Sunday, March 01, 2009

Beginning to Feel Settled

Still pink and happy!

Having fun with Hope - even letting her play engines

Making Thomas cakes

That smile again - meal times are such fun (even if you are not really eating just yet)

A walk in the railway park at the back of our house - we will be able to venture further soon

Hope and Ellie encouraging Wills to lick his fingers after he has dipped them in his yogurt - he did it a few times too!

Having fun building Thomas
It has been another busy and happy weekend. We have been home two weeks today - that is the longest Wills has been home for over a year. We used to get nervous after a couple of days of him being well as it never lasted more than that. Then, we would watch him slowly decline until he was too poorly to be at home, that was as long as he hadn't had a septic shock incident that caused us to dial 999 before then! I haven't quite got that out of my system and keep waiting to find him unwell. I know we will have some worries over the next few years but, right now I am celebrating the fact he has been full of beans for longer than he has ever been in his life. It is hard to relax and remember that there is no reason why he should suddenly get so very unwell so suddenly as he did with all the line infections and I find myself rushing in with the thermometer whenever the poor boy pauses a little too long or looks more tired than usual. I am beginning to feel more settled.
We are certainly getting into routine with the new medical regime and weekly schedules. William has the wonderful Sue, his school one to one health care assistant, during week days but I am only allowed to go out if I am in easy reach of home. So, for most of the time, Addiscombe is my world for the next three months. Well, we have a lovely coffee shop/cafe, a library, three parks, a supermarket, butcher, grocery shop, hairdresser and other local shops in a parade (sadly now minus Woolies - where do you go for that new CD/DVD or birthday pressie for a school friend these days???). I am getting back into my work and writing routine. I do miss other people. It is SO hard not going to church. I miss it so much, especially over Lent. I am hoping to meet up with some friends over the next week - for lunch in that cafe. Paul is around a bit more over the enxt few weeks so I will even get the chance to get into London with my camera to take some shots for my course, to attend some Brompton Fountain meetings and go to some galleries.
Emotionally, the enormity of the last few years has hit home quite hard now I can relax a bit. It was never safe to really get upset over things because, once you start how do you stop? Now, I find I sob at the smallest things. I feel really quite uncomfortable when I think of TPN and all we did and all William had to go through. I know we will have our ups and downs now but at least we have more ups than downs. I feel some guilt about those we have left behind on our journey. For those who never got that call in time, for those we have shared time in hospital with and who lost their fight, for David who shared something of William's journey and had a very special bond with him but lost his battle with cancer so suddenly... so many people. They will always be part of us and close to our hearts. On a happier note, there are also a lot of people who have helped us along on our journey. Many of whom were strangers of new friends at the start and have become close friends now. I am currently enjoying writing lots of letters and cards to those who were there with us, holding our hands, cheering us up and keeping us going. See, there I go again, getting all emotional and reflective... Well, it has been a crazy time and we are getting far away from the intensity now to be able to think about what we have been through and how it will shape our future.
I know I have to use this and I am spending Lent thinking and praying about what I should be doing now. More about that later in the week. I have waffled on long enough and medicines need doing now. Enjoy the photos...