Back to School

Gosh, it has been a long time since I last blogged. So much has happened since that it would be a very long blog indeed if I listed it all and I'm sure I would loose you long before I finished. I am on Facebook (Sarah Milne) and on Twitter as Sarah__Milne (the line is a double underscore) and do 'tweet' several times a day so, if you want to see what is keeping me away from this blog, you can follow me here . Now all three children are back at school, I hope to have time to keep this blog updated more regularly.I have been crazily busy over the last few weeks, perhaps it wasn't my most sensible plan to decide to go self employed and launch a new career in the Summer Holidays, with the children home. I'm not known to be the most sensible about these things though. Getting things started and entertaining William all day was a challenge, but one I think I rose to.

Over the Summer, I have submitted articles to magazines, provided photographs for several charities, a number of events, four local newspapers, national newspapers and magazines. I have also started portrait photo shoots. I will sit down this week and list everything in order to update my CV. It is a good start and I am very happy with how things are going. I have now done enough writing and photography to see where my strenths lie and where I should specialise. After some analysis, thought and some suggestions from those close to me and some of those I have worked with, I will be specialising my feature writing on child health and illness, transplants and organ donation and and family issues around chronically ill and special needs children, although I will write more widely as well. As a photogapher, I will specialise on documentary and public relations, PR, work (which I will approach as a documentary project of a day or event). Work is developing nicely but I do need to work out a marketing strategy to sustain it. I hope to finish a draft of my novel by the end of the year and, of course, have the hospice artist in residence project to plan. There is something else that I will soon be able to tell you about as well :).

There is a lot going on but it does now hinge together.Most of my work is still at home but I am beginning to get out more to meetings and photo shoots. It is lovely to work with people and not have to worry that a meeting will almost certainly have to be cancelled or moved because of a crisis for William. For the last year, I have lived pretty much in jeans and converse boots. This was perfect for hospital and is great for sitting at my desk at home and for informal shoots. Apart from the odd thing I bought for a specific occasion, this is pretty much my wardrobe. Having sorted the children with new uniform for school over the last couple of weeks, Hope and I went into town today to buy a few bits for my new term. I needed some things that can be worn for meetings and more formal photo shoots. While we were out we talked about how things have changed for us as well as William since the transplant. Both of us are feeling more free and self-confident and enjoying being able to make plans. Even short-term plans were impossible to make before William's transplant. We are all enjoying the stability and the security that is enabling us to develop our own lives. William's transplant bought new life for the whole family and we are all making the best of it. September has always been a time of year that energises me. I love the 'back to term' feeling, the new start, clean sheets of paper and new pens. This September is bringing about the biggest and best fresh start of them all

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.

William's 'Favourite Day Ever'!!

Well, it had to be something to do with Thomas...

When Wills was in Birmingham, recovering from transplant, he saw Thomas Land at Drayton Manor being advertised on TV. He asked over and over if he could go there when he was better and 'could mix again'. Today was the day. Grandma, William, Ellie and I went off to Thomas Land, leaving Hope and home with Grandad. In fact, Hope had an ideal teenage day - in PJs all day long and the day shared between the TV and Computer!! We had loads of fun in Thomas Land and Wills was a real daredevil - going on all the rides he was able to go on. I was a bit less care free as, due to his cerebral palsy, he has limited core strength and is a bit wobbly at the pelvis. While he was screaming with delight, I, or Mum, were holding him tightly to stop him falling. We had to draw the line at 'Trevor's driving school' as they were bumber cars in the shape of the tractor with no belt or way of holding him in and he would have to sit on his own. Cranky was also out as he would have to sit on his own and be dropped up and down at a great height! He went on everything else though. Maybe there is no fear left for fairground rides when you have been so poorly, had such huge operations, including a transplant and had so much to go through in recovery. I was almost relieved when he showed a little fear on the 'troublesome trucks rollercoaster'.

William declared the day his 'favourite day ever' and he was still singing Thomas songs in bed and studying his map of Thomas land at 10pm this evening! This was another day where I constantly felt so lucky we still have William and so thankful to his donor family.

School Holidays Day 2

I am not going to blog like this every day of the school holidays - I promise you!

But, today was also rather eventful:

• For the first time in months, William's blood tests are a bit out, particularly his blood counts. He is fine in himself though so I am hoping it is an inaccuracy. Still, until they have been repeated and we know we have a little hint at something to be concerned about. We have had a good run with not a single worry so it is overdue really. Hopefully, it is all something and nothing. I am waiting to hear back from Birmingham.

• I got my first proper professional photography booking :) The first of many I hope.

• I was live on Radio 4 -You and Yours you can listen here I am on in the first 10 minutes, second caller. I started listening but had to switch off a few seconds after hearing myself but others say it came across well.

• Ellie and I stumbled into what looked like a huge police arrest in The Whitgift Centre only to discover it was filming for The Bill, complete with all the big stars (most of whom we recognised from Eastenders rather than The Bill)

• I got my long awaited for Canon 5D camera - afterall, if I am a pro, I had better have pro kit. Have played with it already and you can see the difference even when just playing. I had been saving up and then, when I was ready to jump, no-one had any and I promised myself the next one I saw would be mine. I went into Jessops today for a memory card and there it was...

• I wrote an article highlighting the number of people who die waiting for transplants to send out to all those publications currently obsessed with mortality statistics.

• Hope did not dye her hair as I am photographing the children as part of a magazine educational shoot with a pro tomorrow. However, she did buy it ready to do the next day.

All in all, a very productive day with lots more little signs that things are coming together and plans I am making are beginning to come into fruition. I need a master plan to tie them all together though. That is my next job.

School Holidays Day 1

• William, who has been out of nappies for three months now (a pleasant surprise to us all as we didn't know if he had control or not) had so many 'accidents' I actually lost count.

• Hope and Ellie went into town on their own to watch Harry Potter - and managed to loose each other on the way home.

• Ellie and William chanted incessantly that they wanted their birthday presents today.

• Getting up an hour later resulted in the feeling I was playing 'catch up' all day - so alarm set for 6.30 tomorrow.

• Hope has now gone to the aid of a best friend who tried to dye her hair 'chocolate' and it is now 'ginger'. Hope plans to dye her own hair tomorrow!!

Please all you pandemic planners, do not keep the schools closed in September. Swine flu has got to be better than insanity!!

BUT

This is the first school holiday that we have been together for in three years!! Ellie and William will have their birthdays together next week. William has been in hospital for all but one if his so far. I am enjoying collapsing on the sofa with the remnants of the chaos all around me and reaching for a very full glass of red wine. This is the stress that every other Mum experiences and is much better than the stress I was under this time last year when we were in hospital awaiting transfer to Birmingham for an urgent transplant assessment.

Increasing Efforts

There is a lot I want to blog about right now. There were three subjects fighting in my mind to be the subject of today's entry but, then, something happened that blew them all to the back of the queue to be blogged about later in the week.

The children and I spent today at the seaside today with a fantastic lady and her beautiful daughter, incorporating a Gifts of Life photo shoot. I checked in on Facebook and my emails while I was downloading the photos and there was some absolutely awesome news waiting for me to hear. Gabrysia is out of intensive care and recovering well from her heart transplant last week. There was an email from someone who has become a great friend and who I am really fond of with some really amazing personal news - you know who you are and YAY :) :)!!!! But the very best thing of all was that, there right on the top of my Facebook home page, was an update from the very special Jess saying that she had arrived at Harefield Hospital having been called for the double lung transplant she so desperately, desperately needs. I could not have been more pleased, excited and nervous that this was going to be THE call for Jess. This is a girl who knows the routine very well. She has been waiting for her transplant for four years now and has had seven false alarms. When I met Jess, three months ago, she had just had her last falsea alarm. She has been very unwell several times since then and has been very close to dying more than once. Jess has a lung capacity so low that the best breath out she can muster has less than the power of the fizz when you open a coke can! So, this HAD to be the call for Jess. Inbetween getting William ready for bed and sorted out, I kept checking Facebook for the latest news. I was totally gutted when, there it was, this was Jess's eighth false alarm!! The donor had deteriorated too fast so, despite being already brain dead and on the life support, no organs could be saved before the heart stopped beating. My thoughts and prayers are with this family tonight who did make that choice to save lives in their moment of tragedy and then lost even that chance to hold onto something positive in their day. My thoughts and prayers are with Jess and her family too. Jess will be the first to admit that her time is running out. She is 20 years old and it is unlikely that she could wait a further three months for another transplant call. Please join me in either praying or sending some very positive thoughts that she doesn't have to wait that long.

I made a promise to Jess today that I will work harder than ever before to make sure I do all I can to raise awareness and get her those new lungs. I know there are many others doing the same. So, I am now thinking of more ways 'Gifts of Life' more effective than ever and other things I can do to help people like Jess. I have to think quickly though, Jess doesn't have much time.

Swine Flu

One of the most fantastic things that has happened since William's transplant is that we don't have to worry constantly about the sudden life threatening episodes that were happening so frequently, and almost continually this time last year. We now have swine flu and most parents are concerned about the their children contracting the disease. Thankfully, for most children, swine flu results in 3 or 4 days, a week at most, being unwell before making a complete recovery. I am concerned for Hope and Ellie but really just that they will be feeling yukky for a while and it will be unpleasant for them. I don't have any concerns at all that anything more than that will happen if or when they get it. William is, of course, different in that he is a transplant recipient and is kept alive by a balance of drugs to supress his immune system to stop him rejecting his new bowel but not too much so as he is overcome by infection that his body has no ability to fight. This is explained to parents at great length at the time of transplant assessment and we are fully aware of the life long implications when we consent to the operation. This is why transplants are only offered when there is no alternative and the child will not survive much longer without one. William is amazingly healthy these days. I have had several colds lasting days, even weeks and he has had a sniffle of sore throat for less than a day, if anything at all. So, I hope that he will be able to overcome swine flu if her were to get it. Afterall, he has overcome a very severe pneumonia not long after his transplant when he was on a lot more immunosupression and was still very weak, nothing like his is now. Then, he was really ill and nearly in intensive care but bounced back in days, amazing the doctors. I am sure he will bounce back from swine flu too but you just never know do you. He is immunosupressed and, if he were very unwell, the level of his medications could be reduced to allow him to fight an infection, but then he may reject his bowel.

I was terrified about swine flu initially. I stocked up on face masks and tins of food and was ready to seal the children off from the world until it was over. Then, I chilled a bit and was not worried at all, until today. It seems William could well have been very closely exposed to it over the last few days and, once again, I feel a bit like we are haivng to keep a close watch and hope and pray he doesn't suddenly get sick and end up in hospital again. On the other hand, I could well have had swine flu myself last week and he is fine. At the very least, I had a really rotten cold and he didn't catch that so he is obviously pretty strong.

I'm not sure where I am going with this entry really. It is late night musing and venting to a large degree but I guess the main thing is we all want to be able to predict who will get swine flu, who will get very sick and who will die. The media is going crazy trying to predict these things and, in doing so, terrifying us poor parents, especially us who have more vulnerable children. It isn't helpful. I saw a poor official being grilled on BBC Breakfast this morning and he was doing his very best but he just doesn't know.

I am not going to closet William away. Life is for living and we don't know what is around the corner. We just have to make the best of the present moment. I was talking to someone today about a prayer my Grandma told me to adopt when I was a teenager. It is the serenity prayer:

'God grant me the serenity to accept the things I cannot change; courage to change the things I can and wisdom to know the difference...'

There is nothing I can do to take away the threat of swine flu so there is absolutely nothing to be gained from worrying about it and, as my Grandma would have said again 'dwelling on it'. So, instead of going to bed playing out all the possible scenarios I am going to go to bed with a good book and forget about it.

Having worked all that out for myself, I could delete this post but maybe I will leave it just in case it helps anyone else to try and stop worrying about it too.

National Transplant Week

It is National Transplant Week this week - a week where people are urged to think about organ donation. I could blog on for ages about this but there is one main message really. Today, I woke up, cuddled, got ready and sent three very happy and healthy children to school. If it were not for William's wonderful donor and her family, one of those children would be missing from our lives.

The more I meet donor families and also meet people who lost a loved one but didn't donate organs and wish they did, the more it becomes clear that talking about organ donation is as important, if not more so than signing the register. Your loved ones need to know your feelings about it so that your wishes can be known if they have to make such a decision.

This week, think about it, talk about it and sign up here

Thank-you

A Lovely But Emotional Weekend

William's new special friend

And another special friend

The lovely Holly, making butterflies with Hope and William

And Ellie hard at work with hers

Planting the Memory Rose

Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.

We stayed with a lovely family and made some great new friends. We felt so relaxed with them and had lots of laughs and fun. The children were all up playing and watching DVDs until midnight on Friday, with William asleep on the sofa between them. The adults were sipping wine and chatting and the rest of our time with them followed on in the same way. It was hard to believe we had only just met. William was particularly taken with the family dog. He was somewhat worried at first and declared that he wanted to go home as soon but would not leave her by the end of breakfast time the next morning. The children haven't yet stopped talking about their new friends, the fun we had with them and their hope that it won't be the last time they see them.

The Donor Family Network meet was an emotional day. I felt very privledged to be there with all these wonderful people who have donated organs. I spent a lot of the morning with the children, settling them into their craft workshops but did find time to catch up with the lovely Holly and Oli. I also managed to catch part of a workshop led by recipient donor co-ordinators which I found really interesting. It was a fascinating, emotional, of course, insight into what happens on the other side of the gift on transplant day. We had a very nice lunch, during which we were asked by 'Aunty P' to speak about our experiences as transplant recipients as part of the next session, which was in the main hall and involved everyone. This was the first time I have spoken about William's transplant journey. I followed Holly reading a very beautiful poem and Oli speaking with great confidence about his own transplant. I was very nervous and emotional and nearly got overcome a couple of times. I didn't have anything prepared and was conscious not to say the same things as I was planning to in the address that I had prepared for the service the next day. I think I managed to get our story across in a sensitive way. It is especially hard to talk to donor families as you feel conscious that your story is happy where their's ended in tragedy. It was clear that these families really wanted to hear our storied though and drew strength and encouragement from them. This is the way of the transplant community. We are one big family that are always there for each other. We are so lucky to have each other. My transplant family grew a whole lot bigger over the weekend with new friends that we are looking foreward to meeting again at the transplant games in July. Some of the donor families will be there, cheering on the participants and awarding medals.

After the recipient talks, the really moving part of the day came with families being awarded certificates and angels to commemorate their loved ones. This was done against a back drop of a slide show of photos and accompanied by music. I doubt a single adult in the room had dry eyes. After the ceremony we planted a rose. The families wrote tributes to be planted in with compost with the rose. I wrote a short and simple thank-you to our donor. William was presented with his own angel to remember his donor by. It is now hanging over a frame of photos depicting his transplant journey.

In the evening, I had the opportunity to go out for a meal with Aunty P, Holly and the Donor Family Netork Trustees but opted to stay 'home' with the children and our host family. We had another lovely evening. The children played hide and seek and bounced on the trampoline and the adults chatted some more. We had an earlier night though as adults and children alike were tired after Friday.

On Sunday, we went to church with Aunty P and then met with Holly who treated us all to a greasy cafe brunch sandwich. Thanks Holly, my shout next time! It was then time for the 'Giving for Living' Thanksgiving Service. I was giving the address so pretty nervous. The service began with welcomes and then the wife of a donor lit the Paschal (Easter) candle. Holly, Holly's parents, Hope, Ellie, William and I lit seven candles from it to represent the seven main organs given for transplant (including the small bowel) and the main candle was extinguished to represent that the donor's life is over once the organs are given. It was very moving. The lady who lit the candle gave a really interesting and moving reflection on her experiences. She described being asked about organ donation as a glimmer of hope and light on the day she lost her husband. Nothing could be done for him but this was something positive that could come out of their tragedy. I gave my address and got through it OK after a small wobble at the start, where I thought I may have got overcome, but managed to hold on and recover. William's transplant consultant was there for the service which was lovely and meant a lot to me when I was giving my talk. He said afterwards that he likes to get to it to give thanks for those children he is able to save through transplant. The service was led by the chaplain who has a special responsibility for the liver until where William had his transplant so it really was lovely to be able to share this act of thanksgiving and remembrance with these two members of our transplant team. I won't describe my address on here but I will send a copy to anyone who would like to read it. Holly followed me with a very brave and moving account of her transplant story.

After a buffet and some long goodbyes to some very special people whom we had got to go over the weekend, we were on our way home. We will certainly get to that special service as often as we can do. It is an honour to be able join with donor families in the act of thanksgiving for their loved ones.

Closing doors and looking for open windows

Wow, I hadn't realised how long it has been since I last blogged here. Is anyone still there? I really am going to get back to blogging here more regularly.

We have gone through a strange stage in our adaptation to life after William's transplant recently. For the last few weeks, we have been approaching something that resembles a 'normal family' routine. William is back at school and, at the moment at least, is really very, very well. At the beginning of June, we went to Birmingham for his scopes and biopsies due at 6 months post transplant. All seems to be going well. His stoma is a bit of a mess as it is prolapsed and coverd in sores where it takes a bashing as he runs around enjoying his new found energy. It does need to be 're-fashioned' but it is not urgent and Wills was in such a state over his 'special sleep' for the scopes that the team want him to work with a psychologist to get a bit of control over his phobia before hand. This will be a fairly major op and will necessitate a few weeks in hospital and some more painful and unpleasant experiences for him. There is also no guarentee it won't prolapse again. As William's colon was removed at transplant, his stoma is for life so this is just something we will have to learn to live with if that is the case.

The girls, William and I are really enjoying getting out and about and enjoying the summer. This is the first time we have been home for any decent time in the summer and so we have never seen Croydon in the hot sun or had the chance to enjoy trips to London and further afield. We are certainly making up for lost time. We also have plans for a trip to Mum and Dad's - the first time William has been able to stay there so that will be really special, the British Transplant Games and some 'mini breaks' to combine Gifts of Life photo shoots and seeing a bit more of the country.

Most of all this adapting to life free from the constant threat of a lengthy time living in hospital is very exciting. There are some aspects that have been hard though. The children and I have spent so long out of our social circles that, in some cases, it sometimes feels very difficult to see where we fit back in. William and I returned to our church for the first time in nearly a year yesterday and everything has moved on so far without us, and so much has happened to us and within me that I hardly felt like anyone really knew me anymore. It will take time to see where the 'new me' that has been changed so much through this journey can slot back in. On the flip side, I have so many wonderful new friends who I have met along the way who are just terrific and I love them very much. There is the journey itself too. Now we are eight months after transplant, I am now able to look back on it all and using it as inspiration for new projects. So, there are some great things and some more tricky things that we are dealing with at this phase in the journey. I guess we have reached that stage of reflection where we are processing it all and how it has changed us, mostly for the better and I certainly have that feeling that I have so much to share and to give to others as a result that it is a real need to find how I can go about doing so. A transplant in the family is a real life changing event but it isn't just the transplant itself, it is the three years previously where we spent 80% of the time in hospital. This has had a huge impact and I can't just go back to where I was before, in some cases it is impossible to, even where I would want to.

Very sadly, the main casualty of the life we have led over the last few years is my relationship with Paul. I am not going to blog about the details but for a variety of reasons, Paul has found it very difficult to fit into the family. There are, of course, other things that have happened to our relationship during these last very stressful years. This kind of journey either makes you or breaks you and, unfortunately, it broke us. It is sad as we did have something really special once upon a time in a world before our vocabulary was dominated by medical terminology and the expressions we shared became limited to anguish and stress. This next chapter of my journey with Willam, Hope and Ellie really started a long time ago . It does, inevitably, bring about some tough times but I know I can turn to friends and my wonderful parents for support. I have three wonderful children and we have lots of fun things planned for the summer. On the whole, life is very good.

Long overdue catchup!!

Sorry it has been such a long time with no catch up on here! If you have been following my Gifts of Life blog here you will know that I have been very busy with that. With catching up at work now things are more stable at home, the Gifts of Life project, getting going with my writing and making plans for the future...I have been very busy in the evening when the children have gone to bed. No excuse not to keep things updated here though and I will try harder.

William went into Birmingham Children's Hospital last week for his 6 month review endoscopes and biopsies. I was relieved to be going in as we had been having some strange, sudden high stoma gushes after feeds and we were worried he may have some problems or a bit of rejection. He was fine in himself though so we were all a bit confused. Everything looks good inside, we are still waiting for his biopsy results. His prolapsed stoma does need re-doing and it will be another fairly major operation. William was very, very traumatised by the 'special sleep' needed for his scopes so we are not rushing into this surgery. There is no need as it is all working fine. It just can't stay that way for life and he does have some nasty sores on it from where it receives trauma as he plays. We have been asked to arrange some psychological and play specialist help for William to over come his terror of surgeons and anaesthetics first. The good news for him is that, because of the trauma that everyone witnessed and because things are looking so good, we are missing the scopes and biopsies that he should have in three months time and going straight to his annual review ones in November. Hopefully, he will stay well with no major complications over the next 6 months and we will stay home. We have been home now for over 3 months - a huge record in recent years!! He really is doing better than we could have dreamed. This is one of the main reasons why I am so committed to the Gifts of Life project and raising the awareness or organ donation. I want to see more outcomes like ours.

The girls are loving the stability of us all being at home together, although they are away on holiday in Wales at the moment. William's hospital admission clashed with Mum and Dad's holiday and, with no other childcare options for the girls, they just had to go along - I'm sure you can imagine how gutted they were...not!! William should be re-starting school next week and so the children will be enjoying the end of term and we are all looking forward to an action packed summer holiday to make up for lost time.

An incredible 6 months!!

Yesterday was 6 months since William's transplant!! What an incredible 6 months it has been and what a huge difference it has made to his life and to all of us.

I have blogged on the 'Gifts of Life' blog here a lot of what I would say here, and there are some pictures too, so please do hop over and have a read.

Just to add here, thanks so much to Jessica for 'Emily' the wonderful balloon William received through Postpals yesterday, on his half transplant birthday. Perfect timing. He absolutely adores 'her' and plays with 'her' nonstop. He always loves balloons but is having even more fun with it being a little person, whom he has named Emily.

Two Huge Thank-Yous

I have lots, as ever, to tell you all but today's blog is all about thank-yous. I have two massive thank-yous. William received a special parcel today, a wonderful quilt of Thomas and his friends, characters and the ones in the real world today from Love Quilts. It is a fantastic quilt, made of cross stitched panels from all over England and from Northern Ireland, Majorca and the USA. Thank-you Katherine, Karen, Stephanie, Sandy, Jan, Jan, Gilly, Victoria, Sue, Debi and Patricia. William is a very happy little boy and I know he will love it and treasure it always. It will be a family heirloom and will be used as it is meant to be but equally well looked after and cared for.

I have another huge thank-you which I have been waiting for a good time to make. Well, we are on the subject of thanks and these thank-yous are linked too. A huge, huge thank-you to David and Jacqui. David and Jacqui are cousins of Paul and Paul once sung at David's wedding, a good few years before I met him. We received a very amusing letter about this and David wanting to return the favour but not really being a singer himself. David decided to return the favour by training for and running the Edinburgh Half Marathon on 5th April which he completed in an impressive 2 hours and 4 minutes. In doing this, he raised some money for us to help William and the family. This was a total surprise to us and we were amazed by the generosity of David's sponsors, especially the Staff at Support Services and The University of Edinburgh. Thank-you so, so much.

We have been thinking hard about how to spend the money. Now, here is where this is linked to the quilt. William's bedroom resembles a hospital room. He has a hospital cot that was to enable us to access his line easily when he was on TPN. He has no bedroom furniture but has a drip stand and a trolley to prepare intravenous medicines and his TPN and, in place of toy shelves, he has a set of drawers full of medical bits and pieces. Some of this he still needs as he has his feeds and his stoma bags and things we need to change them. Sometime over the next year, William will be having a brand new bedroom. We are having a downstairs extension as his physical limitations mean he can't go upstairs without a lot of help. Our house is due to be adapted for his needs. We still don't know if he will eventually need to use a wheelchair in the house as a lot depends on how he copes with his body as it grows. With this in mind, we are having major work to widen and move doors and open up extra ones, as well as a downstairs bedroom and wet room for William. We will have a huge job to re-floor and decorate the whole of downstairs after this (so be ready for a painting party anyone who lives near enough). We wanted to be able to make his room extra special as he has never had a little boys bedroom with medical care taking it over. With so much to do to the house, this would have been limited but we are going to spend most of the money on a really great room for Wills where his medical equipment can be hidden away and it will be a bedroom he can enjoy and play in and retreat from his sisters in. This will be something he will really enjoy as he grows up. The girls had to go into a room together when William came along and are going to have a room each again when he moves downstairs. The time I spent on all William's care meant that I have neglected their room and it has run down a fair bit (the whole house has really). So, they will each have some of the money to spend on personalising their rooms. They are really excited about it.

This will all be a fair way down the line as we are waiting for the work to be done and don't know when it will be. So, in the meantime, a little of the money will be spent on a few days by the sea - the first sea-side holiday we have had since William was born. We can only manage a few days away this year as William's care needs are still high and, as I don't drive and Paul is at Glyndebourne every single day of the summer, there is only so much feed and medicine I can carry. We will make it really special with the extra funds we can put into it and the children are really looking forward to it.

To help with this holiday and to make the best of our new lives having loads of great days out, I wanted a fold up special needs buggy for William as his electric chair and big frame buggy, although best for him for school and local trips, are very limiting on a day out. Last week, I bought one of these buggys from e-bay to put a little of the money to immediate use and we put it to the test on a day out on Saturday (blog on that to follow as this is long enough already!).

There is one last thing we will do with it (we are really making it work so I hope you will all be pleased and David will think those miles worthwhile!). While William was isolated in his cubicle for three months after transplant, the very best £20 we spent was on a cheap and cheerful freeview digibox to supplement the TV in the room and enable Wills to watch round-the-clock CBEEBIES, which was his lifeline really. We want to purchase a similarly cheap and cheerful box for the five cubicles to enable other children to be able to enjoy the same after their transplants. I will be sorting this out when William is in for his 6 month post transplant tests in a couple of weeks. It isn't a huge amount of the money but will bring a lot of joy and comfort to the children, and to the parents who sleep in there with them. Cheap boxes work well and are not too expensive to replace if they get stolen so, within reason, we will try and make sure there are always boxes in the rooms.

I really hope you are happy with our choices and will post photos when the bedrooms are done. We were totally amazed by this so thank-you so much again.

Oh, and David and Jacqui, you did include an invite to come and see you. I hope you meant that because we hope to combine a Gifts of Life photoshoot near Glasgow with taking you up on it sometime. We are really looking forward to meeting you

Hold the Front Blog Page!!!

It has been another amazing week and there is a lot to tell you about. This was going to be another newsy, catch up blog but something so exciting has just happened that all that can wait for the next few days. Such a major milestone deserves it's own 'front page!!' William has eaten a whole fromage frais this morning!! It is the first time he has done anything more than lick something. He decided he was going to do this yesterday to earn the engine Paul has waiting for him for when he eats a whole pot of fromage frais.He has known about this for ages and held the 'one day' view but, all of a sudden, he decided for himself it was time. I fed him to make it easier and he enjoyed the first half pot. It became a bit of an ordeal after that but we made it eventually.

This is great news as it has broken William's aversion to put anything into his mouth and swallow it. So, now it is a case of weaning. William needs to learn all the skills he should have learned in his late babyhood. I have told him that I will be feeding him various soft foods and purees every day from now on and will be a little forceful if necessary to get him to the stage of eating enough in the day to be able to stop his daytime gastrostomy feeds. If he eats a little something every day this week he gets a present on Friday. The next challenge will be to eat a little something at every meal time, and then he will get another pressie. After that, he will be expected to eat because he wants to and because he needs to. He just needs a little push to get started.

There is lots more news but it can all wait for a couple of days. The only other thing that I will tell you for now is that Wills is also out of nappies. He has been a total superstar over the last couple of weeks and we are so proud of him.

Bye bye nappies

It has been a lovely day today. Most of the day has been busy sorting out deliveries of feed and their giving sets and containers etc. I never have the space for it all when we are fully stocked so it is always a challenge. I still get a kick of seeing all those bottles of feed arrive and looking at them knowing they will be tolerated and absorbed. It is soooo much nicer than a delivery of TPN! Today was even more chaotic than usual as we had our delivery of 2 months supply of nappies yesterday. I have 18 packets of nappies in a big pile in the conservatory and they may be there for quite a while as....drum roll.... William was in pants and dry all day today!! What a star! I decided to have a go at potty training on Wednesday and he used it straight away so I put him straight into the Thomas pants I bought as an incentive reward. He had a few accidents on Thursday and Friday and today was the first dry day. He is still in nappies when we are out and about and at night but I think it will be night time only within a few weeks, although I may invest in a travel potty as he does tend to go little and often. He thinks it is all very funny at the moment and is drinking as much as he can to 'make more wee'.

Potty training is one of those things thay got put on the shelf while we dealt with the more life threatening things. This will not be too difficult to catch up with but there are other things that need addressing now we are coming up to 6 months post transplant and William's health has stabilised (for the time being, I always say this because you can never be complacent after a transplant). One of these things is his cerebral palsy and maximising his mobility. We have never really done a huge amount of physio with him as it was not the priority. Now Wills is so well, we are able to see what of his physical limitations were due to him being unwell and what needs attention. He has a foot deformity and some tightness in his legs. His foot deformity would normally have been addressed when he as a baby but it was not in his best interests to do it all then and was out of the question once he was waiting for a transplant. I had a long chat with his physio about it this week and the time has now come for action to be taken. We are waiting to see his orthapeadic consultant but it is likely that William will have something called the 'ponseti method' carried out on his feet. This entails around 6 weeks with his legs in plaster up to the knee. Each week, the angle of the plaster is varied slightly to correct the deformity and bring his feet to 90 degrees. After that, he will probably need to wear boot joined with a bar for a proportion of the day. He is going to hate it and it seems a bit cruel when he is enjoying running around without his TPN. However, he has a great chance now to be healthy for, I hope, a good few years, maybe more. So, it is also cruel not to correct the deformity as that would mean he would almost certainly loose the ability to walk in time. He will probably still tire easily and use a combination of walking around the house and wheelchair for longer distances but that is still a lot better than being unable to walk at all. So, we will do this and we will keep him going through the process. I will ask that we wait until after the summer though. He deserves the summer on his feet, having fun first.

Despite being busy most of the day, I did steel some time sitting in the garden with a coffee and the paper. It is so lovely feeling the beginning of the summer and knowing that there is a very good chance we actually will spend it home together this year. Moments like that over the last few years have been spent in the knowledge that enjoying being at home and enjoying the garden would not last for long and we would soon be back in hospital.

Why things have been a bit quiet on here in the last week...

Gosh, it has been a while since I last blogged. People used to call me in worry that Wills was unwell when my blog went quiet. Hopefully, most people will now guess that it is due to thing being particularly busy and, this time at least, they would be right. Long may that last! William remains unbelievably well and things have been hectically busy. William is a new child, he really is. He is very healthy and things are really settling down. We are enjoying the stability and enjoying hanging out and being a family together. It is fantastic having all my children together. It is an amazing feeling being outside in the garden, feeling the beginnings of summer and believing that we could actually get the opportunity to enjoy it together this year and get out and do things. In the last two years, those summer garden days were generally numbered only a few, a week perhaps at least, before they were snatched away and we were back in hospital and separated from the girls again for many long weeks. I am loving the fact I can make plans and write things in my diary, knowing that it is more likely they will happen that not. The girls are having a great time going out with their friends, having fun with Wills and I and, generally, having some stability to grow up in and start to spread their wings - which they are both doing.

Having a more predictable life is critical at the moment as I have lots going on. I am getting back up to speed with work and catching up time lost with so much disruption over the last few months and years. In my 'spare time' I am working away at the 'Gifts of Life' project. Things are moving very fast and, if you see another gap of more than a few days with nothing new on here, you may want to check the Gifts of Life blog to see what has been taking up my time and keeping me away from blogging here. I am really excited to have Holly on board now. Holly had a living donor kidney transplant last year and is using her photography to explore the relationship between transplant recipients and their donors. Her images will form part of the 'Gifts of Life' exhibition which...drum roll please...is opening in a fantastic gallery in London. The Menier Gallery on Southwark Street near London Bridge Station. The exhibition will run from 14th-19th December so do put it in your diary and come and see us if you can.

We have some really exciting plans but, as ever with this kind of project, we are looking for funds to make it all happen. Among our many fundraising plans, we are offering the chance to sponsor one of my images in the main exhibition. The cost of each image, incorportating absolutely everthing from travelling to the photo shoot, printing and mounting the image, its share in the cost of the gallery hire, publicity...absolutely everything is £250. We are inviting individuals, families, businesses or groups the chance to sponsor an image or images. In return, we will acknowledge them with the image in the exhibiton and in the photo book. We will also invite them to the private viewing on December 14th and present them with a complimentary copy of the accompanying photo book. If you, or anyone else you know could help with this then please do get in touch.

If that were not enough, I am getting well and truly back into writing. I am back at the City Lit adult education college for a couple of hours on Wednesdays for a writing workshop. It is fantastic to be back with people after so long in isolation with William. Not surprisingly, there is an awful lot of material that has to be attended to before my brain has the space to work on anything new so I am writing mainly about my experiences over the last few years. One project is to compile all my thoughts, photos, letters and some of the art work I did with William (and some of his photos too!) in a journal style autobiography. Thanks to Holly for that idea and giving me a purpose for the huge box of stuff I have accumulated. I am also using my experiences as the foundation for a heavily autobiographic, yet fictional novel. This is great to be writing as it give me the chance to really explore some of the situations I found myself and some of the issues I was faced with.

Wow, now you can see why I have been quiet on here for a week - I promise not to be so quiet for so long again.

Chocolate has never tasted so good!

We had a lovely Easter. It has been so lovely being at home together with William happy and healthy. We have spent most of the time at home as we can't go out to the park in the rain and can't go there on a really sunny day in the school holidays as it is too busy. We have enjoyed playing in the garden together and getting out as and when we can but the best thing has been just hanging out together. This afternoon saw me getting some work done whilst watching the girls play on The Sims on the Wii and William busying himself with his engines. It has been nice just doing our own things but doing it relaxing together at home.

Oh, and the best thing of all has been to see William licking chocolate and sweets and even a twiglet. More tiny baby steps towards eventually eating and getting off his gastrostomy feeds. He likes the taste of chocolate and has now stopped washing away his little tastes immediately with water. The girls and I managed to give up chocolate for the whole of Lent too. Chocolate has never tasted better as it does in this house right now!

Easter Holidays in Isolation

Wills TPN and line free, off to investigate some trees

First daisy chain of the year

Back to the daisy chain


Wills enjoying some rough and tumble play with Hope (until his bag leaked in spectacular fashion!)

Showing William the daisies

Ellie frantically picking daisies to finish her chain when William's bag dictated we made a hasty retreat home


Today should have seen us off to CHASE Hospice for our first holiday together in four years. Unfortunately, another child arrived with chickenpox which is a huge deal for Wills post transplant so we had to cancel. We are all very disappointed as we had lots planned and Wills has a lot more space to enjoy in his isolation. Still, we are determined to make the best of the holidays and decided to make the most of the sun this afternoon and head for the park. There were too many children in the playground which was nice in a way as we were forced to make our own games. We are heading off to another park a bit further away tomorrow as we plan to be more organised and go as soon as one feed is finished (and with extra stoma bags with us in case!). If the sun shines warm enough, we may even have a picnic - looking at Ellie in her sundress you would think it was already hot but the rest of us had a couple of layers on today!

It is a challenge keeping them all happy. Thanks so so much to Postpals and to the wonderful people who have sent the children Easter activities to do. We will be making the most of them over the next few days. At least this year we have plenty of time for making hot cross buns and easter cakes. It is a while since I have done that. Hot cross buns is planned for tomorrow. In many ways, it is nice to have to simplify life so much. I am looking forward to the end of the isolation period though. Just another 5 weeks to go.

Thanks to all you heroes

Thank you so much to those of you who signed the organ register yesterday and who donated their Facebook status or proflie pic and sent emails etc... It was an amazing day and early reports suggest that Holly's campaign has les to a massive three fold increase in people signing the register. That is amazing. So amazing that look what happened at the end of the day here Holly has been invited to meet the man himself to talk about the campaign and how he can help.I spent yesterday eveing at a drinks reception with people who have had a or are waiting for one transplant, donated a kidney or are part of a famiy who made that brave and incredible decision to donate organs. There was an amazing bond between us all. So many people there would not be alive anymore without that gift. We heard all about Holly's success and vowed to keep on figting until people are not having to die waiting for organs. My 'Gifts of Life' project is part of this fight. There is a lot of exciting things going on at the moment and it is all so inspirational. Thank you, thank you, thank you for your help and support in it