Monday, December 28, 2009

Christmas Magic


Jess and Natalie Imbruglia at Save Jess-tival


Jess's Magical Grotto



On Boxing Day, I blogged how I amazing our first healthy Christmas has been and how I hoped those friends I have who are waiting for their transplants can experience the same next year. My Christmas wish was for them to get their call, not least Jess, the inspiration behind the savejess campaign. I saw Jess on Monday when myself and some of her other friends went into her room at Kings Hospital, London ahead of her on an emergency transfer to transform the room we all feared she would spend her last Christmas into a magical grotto. I have never seen anyone fight for their life so hard. Both Emily (the friend I was with) and I went away feeling we had seen her for the last time. We all hoped a little of the magic would be real enough for her to get the only Christmas present she wanted this year, a pair of new lungs and a chance to see in the New Year.

Jess is an incredible fighter and, over Christmas, although on a non-invasive ventilator 24 hours and day and very unwell, she seemed to be regaining a little strength. Therefore, I was surprised and upset when Emily called me yesterday to tell me Jess had taken a big turn for the worse and that we needed to prepare ourselves for the very strong possibility she wasn't going to make it through the night. At around midnight this morning, I received a text from Jess's Mum and hardly dared to open it. It said one sentence "Jess is having her transplant NOW". I had to read it several times. Right at the very 11th hour, someone somewhere had said thought about someone else at a time of immense tragedy and said yes to donating their loved one's organs. Although she was very ill and very close to death, Jess's team allowed her to travel to the hospital where the transplant would take place, knowing that there was absolutely nothing to lose. Jess has had 9 false alarms and, should this prove to be another one, the stress of the journey could have been too much for her but there was the chance this was the real thing. And it was! Once the news went out that Jess really was now so very very ill, we had all been praying really hard and sending positive vibes that Jess's call would come. She had fought so hard for so long, it couldn't just end this way. It really wasn't fair. Those prayers and vibes were being sent out all over the country and my facebook homepage had nothing else one it.

Prayers are answered, wishes can come true, miracles can happen, maybe there really was some magic in that room because, just hours after it looked like it was too late for Jess, the call came. The nature of Jess's call reminded me very much of William's call, that also came when he was experiencing a medical drama with his own damaged bowel (you can read about that in my blog entries from November 20th 2008). Readers who have followed our story will know that we had a real bumpy ride of a recovery with Wills after his transplant. I called it a game of snakes and ladders and I know Jess and her family are just on their first square. But like I said for us, they are on the board at last and the final square is there waiting for them. My thoughts and prayers are with them all, as well as with the wonderful donor family who made it possible for them to rejoin the game of life. My thoughts are also with those who are still waiting for their chance to play.

Please, if you are not already, do think about joining the organ donor register. Organ donation saves lives. Please call 0300 123 23 23 now or visit www.uktransplant.org.uk.

Saturday, December 26, 2009

The Christmas That's Been 5 Years Coming

One happy, healthy little boy


Relieved big sis

Playing with the new toys - Planet Protectors


Waking up together to see what Santa's bought - for the first time in 5 years


For the first time in 5 years, we've spent Christmas at home together with the family. No hospitals, no painful treatments, no drips, no anguish that this could be the last Christmas fro William. It has been wonderful. William was as excited as any 5 year old and had the energy to be able to feel and express it. We spent Christmas in Stoke-on-Trent with Mum and Dad, the first time ever they've been able to see William over Christmas. I could say more, but the pictures say it all.

Of course, my thoughts and prayers have been with our donor family, with those I know who died waiting for their gift of life this year, for friends we have lost over the last 5 years and for those who, like us in previous years, spent yesterday trying their best to enjoy the day, knowing that this could be the last their loved ones will see if their gift of life doesn't come soon. My Christmas wish is that those I know who are waiting for their transplants get that call very soon so that they can spend a Christmas full of happiness and peace next year like we have this year.

It has, once again been a while since my last blog and blogging much more regularly is on my list of New Year's resolutions I promise. I will blog over the coming days about what has been going on to distract me but, for now, I want to hold the memories of a truly special day and I hope you have memories of the same.

Sunday, December 06, 2009

I can't believe I was there! Downing Tweet Christmas Party Pt 2

I've said numerous times in this blog that it wasn't just William who got a new life when he had his transplant. It has been an incredible year for him. It has been an incredible year for Hope and Ellie who have been able to settle back at school with their friends and live the kind of life a 10 and 13 year old should live without waking up every morning the fear that their brother may die today. My own journey this year has been somewhat challenging and, at times, surreal. Like most Mums of a sick child. William and his care has dominated my life. I had to give up my work and completely fell off the social radar. There was no getting life back to normal for me after William's transplant because the life I lived before he got so sick had gone for good - my career, my partner (although he is still a good friend) and some of my other friends too. There was no picking up where I left off - I needed to start again and it isn't easy. I think this year for me can be summed up well in the chorus of Duran Duran's classic "Ordinary World" Even such a fantastic change as a life saving transplant can leave you searching where you go next. Life is certainly unrecognisable from that it was before William was born or to what it was when I lived in hospital with him month after month. I am still trying to find my way back into the 'Ordinary World' but I don't think I'm doing too badly. I look back on this year and see a near finished novel, several magazine features published, The 'Gifts of Life' images - the exhibition is postponed but the project has already had a huge impact, The 'Save Jess Campaign and Save Jess-tival and all the organ donor awareness that came out of that. I am now running the Christmas media campaign for Live Life Then Give Life with great success so far. It has been an exciting year, a whirlwind. I recently updated my website so please do have a look to see what I have been up to and what I will be getting up to in the future. It tells a very different story to that it would have done a year ago.

I am a single Mum and so can't always get out and about easily. A lot of this has been possible through social networking on Facebook and Twitter and, through those, I have made some connections with some amazing and inspiring people. Twitter, in particular, is fantastic in enabling you to connect with people who share your interests and passions. It also breaks down barriers and I have had many a conversation on Twitter with people I could never dream of connecting directly with in any other way. The Save Jess campaign utilised this by asking celebrity tweeters to forward messages about organ donation to their thousands, sometimes millions, of followers. One of the people it has been amazing to connect with on Twitter is Sarah Brown. Through Twitter, she has given us valuable support and personal encouragement towards our organ donation awareness campaigning and I have learned about many, many other campaigns and charities, including the Million Mums campaign I blogged about yesterday. If you didn't read yesterday's blog then please do now before reading onto. The message is important.

Sarah Brown has sent me messages of support and encouragement in the past but a week or two ago, I got a message from her asking for my postal address. A few days later, I received an invitation to the 'Downing Tweet Christmas Party' I had no idea what to expect. It is a very long time since I received an invitation to any party, let alone one from the Prime Minister's Wife to a party at Downing Street. Thankfully, I managed to arrange for Paul's Mum and Dad to look after William and the girls so, off I went to Downing Street. Emily Thackray and Holly Shaw were also invited and Emily and I exchanged several excited and nervous phone calls on the way. We were both grateful that we had arranged to meet and go in together and felt more confident feeling our way and networking as a pair.


That famous door, together with the Christmas tree and special road sign for the occasion.


I met some amazing people and so enjoyed hearing about them and their own passions and interests. With some of them, I shared a particular connection and hope that we will get to know each other better through twitter, following blogs and meeting up again. I'm not going to mention all those inspirational twitterers I met because I'm sure I would miss someone out and feel terrible about it but they were; people who have a disabled child or who lost a child and now run charities to support other families; people who have rebuilt their lives after a difficult break up and now help others to do the same; people who support and help Mums and families through the daily stresses and beyond; people who work in PR and have a particular interest in social networking; some young labour party supporters and political bloggers (a future PM?); writers; broadcasters; choreographers...and, of course Sarah Brown and Gordon.



I can't believe I chatted about William to the PM and his wife


Emily and I had a chat with Sarah about organ donation, cystic fibrosis and parenting a child with a medical condition. She was so down to earth it was incredible. I wasn't at all nervous, it felt just like chatting to another Mum about our children. Later, we went along to introduce Holly and found Gordon Brown there as well. Sarah introduced us to him and I had a chat with him about William and organ donation. He told me about a friend of his who had a heart transplant many years ago and assured me he "is doing everything he can" Like Sarah, he was very down to earth, easy to talk to and very genuine in his interest about William and organ donation.

Beverley Knight performing absolutely unplugged - no mic

One of the biggest supporters during the Save Jess Twitter campaign, and who often 're-tweeted' our messages, was Beverley Knight. She is a very warm and open blogger and someone who you really feel you get to know a little through her tweets. We were really happy to hear Sarah announce she was here and would be performing a couple of songs. Emily and I took the opportunity to thank her for all her support. She greeted us like friends and chatted for ages. You often think that the more famous tweeters won't remember your tweets in the way you remember theirs to you but she certainly remembered some of the exchanges I'd had with her.
She was also down to earth and absolutely lovely. She sang 'Shoulda Woulda Coulda" and "Gold", which she dedicated to all of us there. Both songs are great affirmational songs and have been made really special to me for being played by someone who has been so integral to the twittering that bought me to such an occasion on such an amazing night.

"Tweetipies" - mini mince pies with Twitter birds on them

Other celebrity twitters I chatted with included Brian Friedman from X-Factor who was very friendly and open. I told him how much William loved John and Edward and how gutted he was when they went out. I had a bit of exclusive news about them and when they may make an appearance again and was told he would see what he could do to arrange a hello for Wills, especially because we are supported by CHASE Hospice Care for Children, whom Simon Cowell is associated with. I'm not expecting anything to come out of that but we'll see. It would be an amazing and much deserved special treat for Wills, Hope and Ellie if anything does happen.

We felt quite bad because we would start chatting to people who were feeling upbeat and in a light hearted mood and would then move them with our stories about organ donation and the happy and tragic endings we have seen. The '3 people die every day' line was never far from my lips. Kirsy Allsop, from 'Location Location Location' was wonderful and moved enough to take an organ donor leaflet and form from me. We spoke at length to Margaret Vaughn, wife of Alistair Darling, who had popped next door from No. 11. She also has a dear friend who was one of the first to receive a lung transplant and is very supportive of organ donation. I did get a strong feeling how committed our Government are to improving the outcome for those waiting on transplant lists and I so hope they win the next election to continue the good work (for that, among many other reasons). The comedian, Peter Serafinowicz was also very moved. Sorry we bought the tone down right at the end of your evening Peter! To everyone I met and chatted with, every single one of you was inspiring in a different way and I am so glad to have met you. Please do stay in touch on twitter and, who knows, out paths may cross again in the real world again.

I'm sure there is more I want to say about the night. It was amazing and showed me how far I have come this year. From living a life pretty much entirely in isolation rooms in hospital and, if I am open and honest, pretty low in self confidence - to this, not just standing in No 10 with all these amazing people but everything that has happened on the way to that. It is, as I said earlier, surreal but incredible and something that I just hope I can build on now.

I'll just leave you with a link to the equivalent Friday a year ago so you can see what I mean.

Photo credits: All official No 10 Downing Street, Courtesy of @ SarahBrown (through Twitter)


Saturday, December 05, 2009

Million Mums - Downing Tweet Christmas Party pt 1


I am having a wonderful, although very emotional time at the moment. It has been many years since I have felt so Christmassy. This year, I am able to relax and enjoy advent and the Christmas preparations, the Christmas concerts and sitting round the table with glitter and glue because, for the for the first time in 5 years, William, Hope, Ellie and I are home together and, barring any sudden emergencies, we will be for the foreseeable future.

William had his annual review in Birmingham last week and the transplant team are really happy with him. It is becoming clear that he has "High Functioning Asperger's Syndrome". Most children with complex 'syndromes' involving numerous health and physical aspects seem to have some characteristics that place them on the autistic spectrum. This is something I will come back to in a day or two as it is interesting and deserves a blog of it's own. A quick update was needed but today's blog is really all about one very exciting thing.

I have said on a few blogs that I am a big twitter fan (where I am @Sarah_E_Milne). So much has happened for me and for the work I do to promote organ donation because of twitter. The Save Jess campaign was born out of twitter and I have met some amazing people by exchanging 'tweets'. One of those people is Sarah Brown, who tweets under the name of @SarahBrown10. I have been privileged enough to receive tweets and messages of support from her on twitter. Last week, I got a message from her asking for my address. A couple of days later I received an invitation to the 'Downing Tweet Christmas Party', a reception in support of the Million Mums Campaign. Before I go on to tell you about what an awesome time I had and all the amazing people I met, I want to take you right back to the very beginning of William's story, in fact Hope and Ellie's story too, the very beginning of my journey into Motherhood.

I have severe asthma. On the whole, this is just a pain. It makes me cough and wheeze when I walk around and can stop me doing some of the things I want to do, some days more than others. When I am pregnant, it becomes much more of an issue and actually made me critically ill and needing intensive care. I was in hospital from 26 weeks with Hope, desperately trying to get her to 32 weeks gestation when it was felt her delivery would be safe for her. I made it to 30 and for 3 days, she and I were in intensive care, our lives in the balance and my poor family not knowing which end of the hospital to be in. Thankfully, we both did amazingly well. This could have been a one off so I ventured into a second pregnancy. With Ellie, I was in hospital a bit earlier and spent time in intensive care before her birth as well as after it. She was smaller and sicker than her sister and had a few more 'premmie issues' to get through. We even had one of those horrible moments, and one I will never forget, when a doctor calls you into a counselling room and utters those sickening words "We are doing everything we can but...." Thankfully, they did everything they could and, by the end of one of the most terrifying days of my life, there was no but. William's conception was not planned but he was very much wanted from the minute I knew he was there. With Wills, I was in hospital from 24 weeks and in and out of intensive care for several long weeks. There was talk of putting me to sleep and ventilating me until he reached a viable age. There were suggestions that I should terminate - suggestions I couldn't hear of. In the end, I used a non-invasive ventilator (NIV) that delivered a full breath as I breathed in and helped me get enough oxygen to support him. On better days I managed with high flow oxygen. Again, he and I were in intensive care for several days after the birth. William needed a lot more support than his sisters as he had 'Chronic Lung Disease of Prematurity' and was on oxygen 24 hours a day for the first 15 months of his life. He has continued to need a huge amount of medical, educational and physical support since his birth. Some of these problems are likely to be because of my state in pregnancy and his premature birth, others could have happened anyway.

I, and my three children, are incredibly lucky. We had modern medicine and intensive care units with skilled staff. Without them, I wouldn't be blogging now and there would be no Hope, Ellie or William. Yesterday, I had a long chat with Jo Cox, the Director of the Maternal Mortality Campaign. She told me that 50% of the world's Mums have given birth on the floor, alone. Half of all Mums. That is an incredible statistic. Every minute of every day, a woman is dying in childbirth. 99% of these deaths happen in developing countries and almost all could have been prevented, often by an easy and inexpensive intervention. The Million Mums Campaign is working on changing this. Please visit the site and register your support. If you can, give them just a little money too. If you can afford it, give them more. I work hard to promote organ donation because, without our wonderful donor, William would not be here but, without the care I had and the children had in pregnancy and birth, our story would not have begun at all and that is why I want to do all I can to help the Million Mum's Campaign.

I was going to move on to all the exciting things that happened yesterday but, you know what. I think I'll leave you with these thoughts and come back tomorrow with the story of the reception itself. Before I tell my next story, please go here that site and help women in developing countries to have a story of Motherhood to tell.

Saturday, November 21, 2009

Reflection and Celebration






Remember this?

November 20th 2008
Someone told me a couple of weeks ago that we would get our call for William's transplant when we least expected it. Well, yesterday was quite a day!!! I will post properly later with the whole story but for now, the big news is that William is in theatre having his new tummy. He went in at 7am this morning and we are expecting an update at about 12.00pm when they will be half way through the op. I am excited, happy, relieved, worried...and very sad and thankful to the donor family. My thoughts are with them.


Can you believe that was a year ago?? It has been an incredible year. I am feeling very reflective and, I'm sure, will be blogging more about our transplant story over the coming days. It is surprising how much you just deal with on auto pilot at the time you are going through it and it comes back raw some time later. It's a good thing I think. Some things can't be comprehended fully when you're experiencing as thinking about it all too much. You just go on autopilot and get on with the practicalities of the situation. If you have been following this blog, you will remember that we had our ups and downs during William's transplant recovery. I called it a rollercoaster - and it was for 3 months. William was well enough to come home at the end of February and the journey to that day contained a good few times when things were very worrying. Things just took their time with Wills though and since then he has never looked back - 9 months of excellent health, something we could never have dreamed for before his transplant. Here's to many more! We have our donor and her wonderful family to thank for that and we do that very day.

Today, we remembered them by lighting a candle while we shared our thoughts and said a prayer. We were hoping to let of a chinese lantern but it is a tad too wet and windy so we'll do that over Christmas instead. Reflection was an important part of today but so was celebration. Celebration of William's gift and celebration of how far he has come this year. He is now off tube feed in the day and drinking strawberry milkshake instead, supplemented with a tube feed overnight. Today, we celebrated strawberry style with strawberries and strawberry fluff for breakfast and a strawberry birthday cake at home and at school. I gave the children a new breakfast set each so they all have a lovely Cath Kitson cup, bowl, plate and egg cup to commemorate this special milestone. Wills chose a birthday tea at MacDonalds - a happy meal to play with (not quite eating that yet). It has been an amazing day, an emotional day, weird at times but amazing.

Wednesday, October 28, 2009

Dropping back home out of the whirlwind

Hello...is anyone there? I wouldn't be surprised if not. I am so sorry it has been such a while since I last blogged. I have been incredibly busy and working flat out until the wee small hours every night then crashing. I have been meaning to blog but haven't been able to squeeze it out of myself. Well, today, I have come here before getting stuck into the evening's work.

So, what have I been up to? Before I explain, let's just revisit my first blog of November 2008.

MONDAY, NOVEMBER 03, 2008

Bugs, bugs and more bugs!

We are not home! William got more bugs in his line so we are here for a while longer. His blood tests are not too stable and he is needing more potassium and is back on TPN for 22 hours a day. We need things to be a bit more stable before we can think of home. The main thing the doctor had to say was that we need his transplant and we need it ASAP!
Things were so unstable for William this time last year. Every day, all I could do was pray that his transplant call would come and, if it didn't, that he would still be there in the morning for me to pray the same again.

We were so, so lucky and William's call came when he was at his very sickest. It really came at the 11th hour. In three weeks, we will be celebrating the huge milestone of reaching a year after transplant. We were told the first 2 years after a small bowel transplant are the most critical and we are almost half-way there. Of course, we will be remembering our wonderful donor and her family who made this possible for us as we give thanks for the William we have today with all his energy and love of life.

We were the lucky ones. Others are not so lucky. If you have been following the gifts of life project, you may remember Oliver. Have a look here if you can't remember. Isn't he the cheekiest chappy? Very sadly, Oliver died 3 weeks ago. His little body just couldn't wait any longer for his new kidney. I got to know Oli and his Mum, Lucy, very well since meeting them in April and often popped into see them when I was near the Evelina Hospital where they had been staying since Oli fell ill the afternoon after the photo shoot. I feel so sad whenever I pass now, knowing Oli isn't there anymore.

You may also remember Jess. Jess is still waiting for her double lung transplant and has been critically ill several times since I last blogged and this is why I haven't blogged. Myself, and many of Jess's friends started posting about Jess on twitter and I had the idea of turning it into a media campaign. I sent an email suggesting this as an idea on Sunday morning, a week after my last blog post here. I had no idea where that mail would lead. If I explained all here you would still be reading at Christmas so, suffice to say, I have been on an incredibly steep learning curve, managing a campaign savejess, doing lots of PR and media work and persuading the likes of Natalie Imbruglia, Ed Byrne and the Yeah You's to play a gig for Jess and to raise awareness of organ donation, oh, and organising said gig in 2 weeks! It has been a whirlwind and I am only just winding down and getting back to normal. It has been exhausting but Jess doesn't have time to wait. Oli was struggling so much and I thought he would just keep on having close shaves but coming out the other side. I just hope Jess gets her call (the right one, she has had 9 calls that didn't result in a transplant, either because the donor lungs were too damaged or because Jess was not well enough.

There is a lot to tell about all this and it has had a huge impact on me and what I am doing now. I am aware I have missed a huge chunk out of the blog. I am now going back over the last few weeks and collating it all so I may well throw in a couple of catch up blogs. I will certainly be blogging about where this all takes me next. At the moment, your guess is as good as mine. For starters, I suggest you get hold of a copy of The Sun tomorrow as they should (and I say should as you never know in media) be running an exciting story about what happened at the 'Save Jess-tival' gig (another reason why I haven't blogged in the last 2 weeks as I had to stop myself blowing the exclusivity).

Meanwhile, the novel is coming along very nicely and I hope to try and get a publisher early in the new year. My other writing is also going well and I have a feature in 'Yours' magazine out next week. Writing is developing faster than photography at the moment. It is nice to have the two things because sometimes the door opens for one and others for the other. I also really enjoyed the PR side of Save Jess-tival and managed to get some great media coverage. This is something else I would like to do more of. As ever, I have lots of ideas and wish there were more hours in the day and days in the week. Some of my ideas are big but, after what has been achieved over the last month, I will no longer think that an idea is too big for me. If you have the passion and the belief that you can do it, you can do it!

I know I keep saying this but I really do promise to blog regularly again now so do get back to the habit of dropping by... I WILL see you soon...

Sunday, September 13, 2009

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

Saturday, August 22, 2009

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.

Monday, August 10, 2009

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.

Monday, July 27, 2009

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.











Tuesday, July 21, 2009

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.

Monday, July 20, 2009

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.

Saturday, July 18, 2009

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.

Wednesday, July 15, 2009

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.

Thursday, July 09, 2009

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

Monday, July 06, 2009

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.




Monday, June 29, 2009

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.