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

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.