A Year Home Together

Wills has been home after transplant for a year now! It's been a year since we've had any of those terrifying days, juggling a blue and gasping child, a phone call to 999, another to a friend to arrange for the girls to be picked up immediately and another to Mum asking her to get in the car and get the girls from whoever was holding them for me. It's been a year since we've had to step over the sets of bags in the hall, ready for any emergency - and one packed for transplant. Strangely, the post-it note, holding the check list of all the things that had be taken to the hospital, fell off the front door last week. I gave it one last glance and threw it away. We've had a few close calls over the year, two in recent weeks, but we've (so far) managed to cope at home when Wills has been ill with the inevitable colds and bugs that can be so dangerous for a child whose immune system is suppressed by drugs to prevent their body from rejecting their transplanted organ

So, one year on, where are we all? Wills is thriving. The main focus of care and therapy is his physical disabilities and Asperger's Syndrome at the moment. From time to time, I do get nervous. I wonder when the bubble will burst because it will. One day, we'll wake up to a major post transplant complication that will send us tumbling back, hopefully temporarily, to the world of Hickman lines, TPN and long term hospitalisation. It could be rejection or a big infection or even a (treatable) type of cancer that is quite common in transplant recipients. Even after a year of relative stability, it's hard not to go into a tailspin at the first symptom of something. During the last week of term, William's school bus escort arrived at the door telling me to bring a buggy up because Wills was asleep and they couldn't wake him. My mind was immediately transported to those 999 days. He was poorly but only really like any 5 year old can be and nothing that a dose of Calpol and a few cuddles couldn't sort.

You don't snap out of what's gone before overnight. We've just had a fantastic half-term break - the best we've ever had. We went out as a family several times and had lots of fun and laughs. Hope, Ellie and I went out together on a day Paul had William. We ate out several times and were all very relaxed with each other and with life in general. I think it's taken us a year to reach that state. It's taken that long for our minds to settle from living on the knife edge when life and death emergencies could happen suddenly, without warning at any moment, and so often did. That, coupled with the gradual decline in William's overall health was difficult for us all to live with. I've said it before and I'll say it again and again - William's wonderful donor and her brave family did so much more for us than save his life, they saved our family. They saved us all really.

The girls are settled at school and we're all looking towards their futures and what they will be. Hope takes her GCSE options this year. Her interests are in subjects like geography and history and we've been wondering what she'll do with her life. Following the earthquake and the writing I've been doing about the Haiti Hospital Appeal she's now decided to look towards a career in third world development. That will be a stark contrast to Ellie's dreams of becoming a fashion designer. We made a pact to support each other in all we want to be and help each other realise our ambitions - including mine. It's what we'd be doing anyway but we made an extra special promise to each other. The Milne girls, all three of us, mean business.

I'm still at the stage of rebuilding my career. There are still a lot of bits and pieces that need to be bought together to form a clear plan. Right now, I feel my career needs some strategic thought, planning and self-imposed deadlines etc. I need to be more business like about things. To have a 'mission statement' and make decisions on what I do and don't do based upon that, as well as helping to pay the mortgage and feed my children of course! The first step in 'branding myself' I guess is that I've revamped my website to give it more focus and will put clippings to my work on there as and when I can.

I was going to talk about the whole love and dating issue here too. In fact, that is what this blog was going to be about. There's no new big news, I'm still very much single! It was just going to be some musings about how it works, (or rather doesn't) when you're working at home, doing something as isolating as writing and have three children, including one with complex needs, to look after, not to mention approaching a delicate age!! How does one find that special person again? Sometimes I wonder if I really want to. Some days I feel really lonely and want someone who is there for me, that special person you tell as soon as something big happens in your life. Other times, I think I'm best off on my own and don't need or want a man in my life again. I'm certainly more creative and productive when single. For now, it's family first and career second. My next blog will be about existing in the social world again after so long away from the 'real world' existing in hospitals. I'm sure I'll touch on love and the dating game....

Thomas and the travelling milkshake!

I've mentioned it and skirted around it in previous blogs and today, I'm addressing it straight on the nose - Asperger's Syndrome!

William is a very clever little boy who was reading fluently at the age of 4. It's easy for him as he has a photographic memory for words. He's fascinated with facts, he stores them and recites his treasured collections over and over again. He can appear someone obsessed, especially with Thomas the Tank Engine and his current interests - natural disasters, planets and 'A Christmas Carol' (still in February!) People often say he's like a mini adult. He talks in adult sentences with a rich vocabulary. Not surprising for someone who has spent his early childhood in hospitals, isolated from the other children, with only adults to converse with. He can be anxious in social situations, especially with other children who have a tendency to be unpredictable. He likes routines and likes things to be ordered. Anyone who has found this blog because of today's title will recognise him, perhaps in their own child. Wills hasn't yet been formally diagnosed but everyone involved in his care believes he has 'High Functioning Autism or Aperger's Syndrome. We have known he is 'different' for a while but it's hard to tease out what is just down to a very challenging start to life and what is a biological difficulty in its own right.

When people first started using words like 'Asperger's' and 'Autism' I refused to listen. I refused to accept it. After all, Wills is charming, funny. He loves cuddles (OK, not always but several times a day). He does understand emotions and has some level of emotional empathy, although, I am learning that he doesn't really understand quite how another person got to be in the emotional state they're in or quite what he should do about it. In many ways, I initially found the idea that he has Asperger's more difficult to cope with than the fact he had intestinal failure and needed a transplant. This is all down to society and the way people who are 'different' are viewed and accepted. Wills is 'different' too. He's not less able than other children. In many ways, he's more able. In others, it will take him longer to get there but he will, eventually. He can adapt, especially if people adapt to him as well.

We're having a great half term holiday. One of the key reasons to this is that we are all learning to adapt to the way Wills is and the way he sees the world. He, in response, is adapting to the world he lives in. This equates to much better harmony among us all, less stress and more fun together. We are learning to read the signs that tell us William is over stimulated and needs a time out. We know that shouting at him, no matter how cross, is pointless at best and distressing at worse. Thanks to his fantastic teacher, who has a particular interest in Asperger's Syndrome, we're also learning to use resources to help William. One of the things that is particularly difficult for him is disengaging from something, be that a task, play time or an obsession. On Tuesday, Wills and I sat down and made a visual timetable with pictures of all the things he does in a day on velcro. At the start of the day, we talk about what we're doing and stick everything on the chart. As something is finished, he takes it off. This really helps him to move onto the next activity but, if he's still a bit stuck and upset, we pull out something else in our 'toolkit'. We have 5, 10, 15 and 30 minute sand timers. They are fantastic. If William isn't keen to move on we negotiate which to use and allow him until the sand is gone before having to stop. These can also be used in anticipation that he won't want to move on from and activity and are great for 'timeout'. In fact, earlier today in a very fraught moment, Wills spontaneously took his timeout picture, stuck it on the chart, took his 5 minute timer and sat in the corner of the room on his big cuddly giraffe! He was lovely and calm afterwards. Children with Asperger's struggle when plans have to change and we've found the chart great for this. He simply moves the pictures around and has been happy to rearrange his day that way.

One of my tasks for the weekend is learning to write 'social stories' where you write an individualised story around something the child finds difficult and needs help with. There is a prescriptive method and the stories have to be entertaining enough to read over and over again. Thankfully (in this instance at least) William likes the same stories again and again.

Tomorrow, we're all off bowling and having lunch out. This means confronting one of William's biggest challenges. He hates drinking his milkshake anywhere other than home and school. This is special, nutritional scandishake and his only nutrition and fluid during the day so not an option! You know, sometimes you can miss the obvious, the simple things. I was thinking all the deep and psychological things he may struggle with drinking his drinks out and about. Is it the over stimulation, the unpredictable environment, the smell.... Last week I asked him, why I didn't before I don't know! Every time we go somewhere like McDonalds, I pick up handfuls of their wrapped straws for William's shakes on the move. At home, we have red, yellow, green or blue bendy straws. He doesn't drink his shakes out and about because he doesn't like the straws to be different or to have it from the tupperware cup! So, tomorrow, we'll take his straws and his cup. With summer on the way, the first one where we are really able to get out and about and, hopefully, away somewhere, I really hope this works. If not, one of my first social stories will have to be all about Thomas and the travelling milkshake!

Hope

I really intend to blog more often this year and I will so please so check in more regularly now. I promise at least a blog a week and will aim for more.

This time last month I was anxiously waiting for news about Jess. I knew things had got a lot worse. I knew she was dying but I still hoped. I still hoped she would defy the experts and show some signs of improvement, even when all looked so bleak. I hoped right up until I received the text from her Mum telling me she had passed away.

I whiled away my time waiting news about Jess switching between facebook and twitter, keeping in touch with mutual friends, all equally unsettled and sad. My attention was caught by 'Haiti' in the twitter trending topics. In September, I photographed a 10K run a friend of mine organised to raise money The Haiti Hospital Appeal and, while there, chatted with one of the trustees about writing a feature about their work sometime. I clicked to find out why Haiti was trending and, finding tweets about the quake, switched on BBC News 24 to watch it unfold. About 15 minutes later, I received the news about Jess and my attention was diverted.

I'm currently halfway through a piece about the Haiti Hospital Appeal and it's the most humbling piece I've ever written. I've heard some amazing stories and it's something I can't just leave alone. I'll be following Haiti and the work of the appeal through the years to come and supporting and highlighting their work and the plight of that little country that was already broken before the quake struck. One in five children already died before the age of five due to birth defects caused by the fact that 75% of their mothers give birth alone with no access to healthcare. Thousands of children are disabled from birth, many of whom end up abandoned by parents who are unable to juggle their needs with the daily task of finding work to earn enough money to get food and water for another day. This was what Haiti was like before the quake. Haitians are used to injustice. They are used to having to get on and find food and water alone because aid from the rest of the world is scarce. This was life for them before the quake and this has made them a resilient nation. I have been told stories about individuals who lost several members of their family, their home and belongings and still came to work the next day. They did that because they had to. If they didn't, they wouldn't eat or drink. It's as simple as that. Just was I was clinging onto hope the night Jess died, so the Haitians live in hope that more aid will come and that the world will walk alongside them and will stay with them as they rebuild their country. The Haiti Hospital Appeal is bringing that hope to many. I'll bring you more stories over the coming weeks.

The Hospital the appeal funds is supposed to be a maternity hospital with a special care baby unit and paediatric ward. At the moment, the facilities are being put to use for all who need it but, in the long term, the hospital will focus on maternal and paediatric care. This is something that is very close to my heart as a mum who struggled with difficult pregnancies, resulting in 3 premature babies. Hope is all you have when your tiny, two pound, baby is born with lungs too immature to breath. Hope and trust that the medical team can offer the support until the infant matures enough to cope without high tech machines and specialist drugs. I find it so sad to think of the thousands of women all over the world who give birth to a fragile baby without any hope at all for their survival.

Today, I read the very moving piece in The Guardian outlining Gordon Brown's interview with Piers Morgan about losing he and Sarah's precious little Jennifer Jane. I read the piece with tears in my eyes. I have been so, so lucky. I was told about the danger of cerebral bleeds for premature infants. Twice a week, until they reached 34 weeks gestation, Hope, Ellie and William had head scans looking for any sign of bleeding. These were among the most stressful days for me when they were tiny. I remember vividly the anxiety waiting for the result and the huge sense of relief another week had taken us closer the the magic 34 without a bleed that could result in severe brain damage or death. For Ellie, this was even more of a worry as she had to have a drug to close a valve in her heart that had failed to close as she was born. The side effect was to drastically increase the risk of bleeding. Gordon's re-telling of the day he realised Jennifer was not going to survive struck a cord with me. I remember watching William get weaker and his need for more support from oxygen grow each day and just feeling this huge sense of intuition that he was in real trouble and wouldn't make it. I wasn't brave enough to question staff but was soon told of their own concern when he was transferred back into intensive care and onto breathing support. We were lucky that he was able to fight back. We were lucky that we live in a country that was able to provide specialist medical care and nutrition to carry him through the years before his transplant. We were lucky that our wonderful donor family said yes on another of the several days in his life that we have come terrifyingly close to losing him. So, so lucky. I hug my children every day and remember that. My heart goes out to Sarah and Gordon and others, among whom are many of my friends, who have lost a child.

It's not enough for me to just sit here feeling lucky though. I have to do something to help those that are not so fortunate. After William was born I went to work at BLISS, the premature baby charity because I wanted to make a difference for mums who had premature and sick babies and may not have been as lucky as I'd been with my three children. As he became sicker, I had to give up this job to look after him and live in hospital with him. Since his transplant, I have been campaigning for more organ donors and I know we are making a difference and saving lives and I will continue to do this. This work helps others to be able to enjoy the successful transplant story we have to tell but, as I have said in this blog before, our story didn't start there. It's fantastic that I'm now using my writing and journalism to highlight stories of mums and children who are not lucky simply because they were born in a country where there are no specialist medical teams, drugs and machinery to help them. It's a little contribution but it is something.

The more I research this, the more involved I want to be. Hope is also becoming very interested in this. She is about to take her GCSE options and thinking about a career based around her favourite subjects - geography and history, and her desire to work to make a difference for people. Today, we talked about working in third world development and she was really taken with the idea. She's hoping to do her work experience next year with a relevant charity or aid agency. If she does go down this route, how fitting that a little girl who is only alive because she was able to be placed on a ventilator as soon as she was born could one day be working to help other babies have the right to the same.

Time To Say Goodbye

Yesterday, we all said goodbye to 'Our Jess'. It was always going to be a hard day. Hope decided she wanted to come and pay her respects to someone who has so greatly inspired her during her years turning from a child to a young woman. Hope had never been to a funeral before and I wasn't sure about her coming but Jess has been a big inspiration to her in formative years and that will last a lifetime. In the end, I decided she needed the closure a funeral brings as much as any of us who felt similarly about 'our Jess'.

Funerals are tough and you need your friends around you. For that reason, I was really pleased when the lovely Oli and Kati offered to pick us up from a station where their journey from Milton Keynes could intercept with one in easy reach of East Croydon. We met at Oxted, having passed some lovely country areas which Hope and I both said we should come back to one weekend day in the coming weeks, just to get away from it all and have a walk in the woods. We all really need that right now and I hope we get the weather for a day like that very soon.

Oli and Kati were perfect company for the day. We spent the journey to Westgate chatting about all sorts. Oli is a fellow writer and we've both recently read each other's work so enjoyed the chance to chat about a few issues that arose from comments we'd made. Hope was quiet, not quite sure what she should be anticipating when we got there. As we drove into Westgate, we were silenced by the sight of Jess's beautiful glass carriage pulled by two white horses with pink plumes getting ready outside the undertakers. We had a good journey in and had arrived early. I had been called and asked to do a quick interview/tribute to Jess for Meridian TV and, after being reassured the family knew that they were filming Jess's arrival at the church and were happy for them to talk to people, I agreed. Anticipating tears, I had no make up on and, despite Hope's strong suggestion it was a silly idea as I didn't have any waterproof mascara on me, decided to put a bit on when we were on the train. In a moment of parent-child role reversal, she did have the 'I told you so' as Jess came into church and my mascara leaked into black rivers down my cheeks. Future note to self - don't bother with make up at a funeral again.

Even with the interview to do, we were a bit early so went for a drink in a little tea and beach shop on a deserted and cold looking sea front. Hope and I thought it would be nice to come back in the summer. What was so lovely, and important about the day was that we found little things to laugh about and things our memories of Jess told us she would have giggled at. She will be remembered for laughing herself into coughing fits so often. I chose a hot choc and realised it was made of milk so a full big mug of milk, not sensible as I'm a tad allergic. I also fancied battenburg cake, just like Grandma would have had on a sea front, probably in similar weather. There was something comforting about that and we also shared a few laughs.

I was worried I'd get through the little interview but managed to stay composed and say what I wanted to about Jess. We met with Emily, Matt, Holly and her parents, Richard, Aunty P and others I knew from Facebook, outside the church. We were all muted but pleased to offer support to each other. Then we went into church and waited for Jess to arrive. The anticipation built and I felt sorry for those who came in at all later than most as everyone turned round. The door was really clunky, something else we found amusement in.

Jess was beautiful when she came in. She had a sky pink coffin with white heart with her name in pink on each end. A beautiful spray of pink flowers covered the whole coffin. My emotion bubbled over as soon as I saw her, as did Hope. I don't think you can ever prepare yourself for that first glimpse of the coffin. Her Mum, and then her Dad, met my eye and took my hand as they passed and I was pleased to be able to give them a bit of support. The service was lovely. Jess came into her favourite song "Truly, Madly, Deeply' by Savage Garden. She chose everything herself and her hymns were "Make me a Channel of Your Peace" and "Be Thou My Vision"

This Poem "What Matters" was read

What will matter is not what you bought, but what you built; not what you got, but what you gave.
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.

What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you're gone.
What will matter is not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.

What will matter is not your memories, but the memories that live in those that loved you.

It's not a matter of circumstance, but of choice

In the face of adversity you chose to live a life that matters

And Jess really did didn't she!

Jess left to "Time to Say Goodbye" sung by Katherine Jenkins. I'll never hear that song in the same way and seeing it on You Tube now brings back those tears that still come too easily. Gosh, Jess would be telling us all off for the number of tears that have been shed for her and the words that have been written about her over the last few weeks.

It was a hard funeral for everyone and watching Jess set off in her carriage on her final journey to the cemetery was heart breaking. The journey also led to a few of those moments that Jess would have chuckled at. We had no idea where the cemetery was and 'Sean' Oli's TomTom was not too helpful either. Luckily we caught up with the cortege and enjoyed watching the plumes jiggle about ahead of us, knowing we were with Jess on that last trip. A journey where she was surrounded, not by machines and tubes as she had be the last time I saw her arrive somewhere, at Kings Hospital just before Christmas, but by beautiful pink flowers. It was so sad yet beautiful and free. The horses turned into the cemetery road, straight through red lights which made us all giggle, especially as the huge, long line of cars behind it followed and did the same. I'm sure Jess would have approved with us finding some funny moments, even if the humour was a little black. It all added to our memories of the day. We really felt her giggling at us when all of us who'd worn high heels and funky shoes in her honour (as she had a thing for shoes) had them sink into the wet grass at the cemetery and covered in mud. Oli, Kati and Hope had awesome shoes on which got really mucky and were not best comfy either. In fact, Hope donated hers to me as soon as she took them off to reveal the blisters.

I warned Hope that the burial was the hardest but she found it OK. In fact, she said she felt very peaceful watching Jess be put to rest. She's such an amazing girl that Hope and I was so proud of her. I found it hard, not least finally having the opportunity to give Jackie, Jess's Mum a big hug. She held me so tightly and told me not to cry because Jess was strong. I'm sorry for crying again now Jess, you were so strong and we are trying to be but we loved and miss you so much. I told Jackie to keep in touch and she said she has to because she needs me now. She needs me to help her do some things for Jess. I promised Jess in my toast the day she died that I will do anything for her, even now, so feel less helpless knowing there are still things I can do to help her to do the work she began before she was taken so young.

Oli, Kati, Hope and I went 'secret roading' after the burial. This is where Oli and Kati explore unknown roads in search of places of interest, in this case a pub for one final toast to Jess. We found a quirky little place with some interesting regulars, so more opportunities for some amusement. Hope had her first shandy in a pub, she more than deserved it.

The journey home saw day turn into evening and we were a lot quieter. No doubt, reliving our memories and all feeling pretty tired. In fact, I was absolutely drained for the evening. More drained than I can remember feeling in a long time. It's been a long month. It started with so much hope for Jess and then went so wrong. Work has been busy with the media interest and, as I have blogged before, I found it very hard dealing with media in such tragic circumstances about someone I had become close to, but I did it and I know Jess would have been proud in that. Paul and his parents were with Wills and I wasn't really feeling very sociable so had a bath and then, later, Hope and I relaxed with a take away (Ellie had tea already but shared some). For a rare evening, I did nothing. I didn't even switch on the computer. I just watched mindless TV, dosed a bit and then chatted on the phone with someone who cheered me up no end.

Last night was restless. At the start of the year I wrote this entry as I was working out where this year would take me. The next entry was about Jess and we've had the snow disruption and, for me, a pretty nasty cold that gave me a muggy and useless head for a while. January 2010 has been an interesting month. There's been a lot of change, good and bad. I'm now sitting here going back to where I was before it all went so strange and thinking about where 2010 will take me, especially in terms of my work and where I'm going with it. I know I've taken on a bit too much and some projects have developed well, others not really getting off the ground. It's time to prioritise and, in some cases, take some tough decisions. My priorities I think have to be the organ donation awareness work and writing. In my writing, I need to diversify more. I have my novel well on the go and some interesting things to write about transplants but also need to get away from all of that sometimes. I'm really enjoying the work I'm doing about the Haiti Hospital Appeal.. that will be the subject of a whole blog entry of it's own over the next few days.

For now, it's time to snap out of the sorrow and move on. Jess has inspired us and we'll have that inside us, with memories of her, forever but we owe it to her and others whose passing came too early to live our own lives to the full. I found this song earlier on today. A good one for taking me from a tricky January into what, I hope, will be a happy and settled February. It's time to say goodbye to Jess, goodbye to January 2010 and goodbye to all that should be left behind to make space and energy to embrace all that the rest of the year has in store.

Jess, Haiti and God

I'm still struggling to put my feelings about Jess into words so bear with me.

Right now, I should be at Church. Hope and Ellie are there but I am feeling a bit lousy with a cold and Wills is coming down with the same. That's the reason we're home but I would have struggled there today anyway. We've been through lots with Wills and I've never once questioned my faith as a Christian or really been angry with God for putting us through it. I trusted him that he was in control. On Tuesday night, I, like many others who knew and loved Jess, was in a total pickle! I spent a lot of time chatting on MSN to others and really felt unable to sleep. At about 3, I realised that I had to get up and do William's medicines in 3 and half hours and had to calm down and sleep soI did 'as Grandma would have' and poured a cup of tea and a tot of brandy left over from the Christmas cooking. While I was in the kitchen, my upset turned to anger and I found myself shouting "It's not fair!" a couple of times (which Hope heard and through was part of a dream). Part of this was venting but I was also shouting that to God.

It's not fair that Jess did so much to fight for people on transplant lists. It's not fair that she loved life and was so determined to hang on to it that she defied the odds and lived on the lung capacity of a coke can for the last 2 years of her 4 and half year wait for transplant. It's not fair that she waited that long. It's not fair that she got her gift right at the least minute and began recovering well only to have it snatched away again. None of this is fair and I am pretty angry with God about it. It makes no sense at all. I'm not having faith crisis, my faith is too strong for that but, it it wasn't for our colds, I would have felt a bit like "I'm none too happy with you right now God and today I'm not quite ready to come and visit you. Let's try again next week!"

Jess cared so much about other people, in fact a text that got in tears during the SaveJess twittering, was one that simply said "Thank you so much, if it's too late for me at least you're saving others." Jess was never that comfortable with the attention all being on her, she didn't see herself as important enough. She liked being the face of a campaign that would help others but didn't want it to be just about her. She would have been very moved and humbled by the impact her passing is having on us all but there would have come a point very quickly on when she would have wanted us to keep her in our thoughts but channel our energies into helping others.

I had some great meetings at the end of last week about how I can do more to help those waiting for organ transplants and will blog about those soon but, on Friday, something else came up where I can used my skills, some of which were gained in the Save Jess campaign.

A good friend of mine did a trek last year for the Haiti Hospital This is a Christian organisation who run a hospital in Haiti to help women and children. Even before the earthquake, 75% of Haiti women give birth at home alone. I in 5 of their children died before the age of 5. I met the trustees at a sponsored run organised to raise money for the trek. I was there photographing the event but we spoke about writing some features about their work and getting them some media coverage. I didn't hear anything else until Friday when a trustee called me to ask if I could write about their work following the quake. They are still standing in the North of the country but are expecting refugees this week, many of whom will beed medical help, many of whom will be pregnant women and children. They also plan to send some extra teams out to the worst affected areas of the country. This morning, I got a call asking me to come to an emergency trustee meeting this afternoon to discuss the plans further, how they manage the media response to the crisis and how I can help with with this and write some features for them.

I imagined what Jess would have said - something along the lines of 'pull yourself together girl, you can make a real difference here, just as you are with the organ donation awareness work, stop thinking about me so much and get on with it!' I have a lot of work to do with Live Life then Give Life this week which is fantastic and I have time also to do some work with Haiti Hospital, but not if I keep brooding about things I can't change. They'll be some tearful moments this week I'm sure. Jess's funeral is not until the following week so it will be a while before we feel the closure to move on with her memory. Life goes on though and one thing Jess taught us all is to make the most of every opportunity and every minute. This won't be the last you hear of Jess here but I am doing that now.

And as for God and church this morning, well, had I gone, by the time I'd picked up a message about the meeting this afternoon it would have been a lot more difficult to arrange to be there. So, God, maybe there is some sense in all this somewhere and you are in control and have a plan for me. Right now, I still think life is very unfair and I am cross with you. I'm still listening to you though, communication hasn't broken down.

To Jess!

Jess - how I will remember her

I made a New Year's resolution to keep this blog updated at least every few days. So far, I have failed. The truth is, I may be a writer, but this week I've been finding it hard to find the words.

On 28th December, just 3 weeks ago, I wrote this

Jess's call really was magic, something I was beginning to think wouldn't happen. The magic continued and each day bought news of a slow and steady recovery. I was beginning to look forward to the day she'd be well enough for visitors so I could give her and her Mum a huge hug. I was beginning to look forward to watching her mature into the amazing woman I knew she'd be. Jess took those wonderful breaths with her new lungs and she and her family will have been making plans for a wonderful future. Then, on Tuesday night, all this was snatched away from them. Jess had waited so long her body just couldn't cope. It's just so unfair and I' struggling to come to terms with it. To get the call, to receive the gift, to take those breaths and have it all taken away again. I'm devastated and can't begin to imagine how her family are feeling right now.

All I do know is that I, and those others involved in Save Jess and live life then give life did all we could, we really did. I've been going over it and over it and we did. I will continue to do all I can. I'm redoubling my efforts, trippling them!

Wednesday was one of the most horrific days of my life. We embraced media with savejess and save jess-tival. We made it high impact so, naturally, the media wanted to share how this story ended. I can't begin to explain how horrible it is to confirm over and over again that your friend has died when you're only trying to come to terms with something that happened the day before. I had prepared myself for it. I even told someone earlier the same day that I had steeled myself and was ready, could cope. How wrong I was. I don't think anything could have prepared me for that day in all honesty. It was a very long day and I'm still pretty exhausted. I'm just glad that, by doing that, I was able to spare her family having to face such calls. I must say, the media were fantastic, sympathetic and understanding. Most had been following her story and she had touched their lives too. Here are some of the tributes they paid her:

Stuart Linnell on BBC Northampton (33 mins in)

BBC Kent

KMFM

Sky News

and here, Jess tells her own story:

Jess touched so many lives. I had to email, call and text all sorts of people from the media and celebrity world on Tuesday. I even had a conversation with Sarah Brown, who was wonderful and so supportive. In fact Sarah, it you're reading, you were so calming and made me feel so much better.

I'm honoured to be able to call her my friend. Just before Christmas, her Mum told me she saw my family and I as her family. I see Jess and hers in the same way. This is agonising but I will keep her memory and her legacy alive and keep on working and fighting for a day when people don't wait too long for transplants.

Now my tears are back and I'm in Starbucks and don't want to look a numpty so I'm leaving this entry with the toast I made to Jess when we all raised a glass on Wednesday:

To Jess! To your fight, your spirit, your smile, your love for life, your tenacity, your passion and to everything you should have been with them in the future you never had. I promise I will fight to make that future possible for all those waiting for transplant you cared so much about. God bless you. Fly High beautiful angel. Heaven is a better place for you being there and earth is sadder x x x

2009 becomes 2010

It's 1.ooam on January 1st. Mum and Dad have gone to bed. I have a left over glass of bubbly, a few nuts, some chocs and rubbish on the TV and am full of hope for a wonderful 2010. I'm really enjoying the feeling, one of those moments to hold onto. This is the first time in 4 years that I can really see a new year in and wonder what excitement and opportunities it will hold for the children and I, rather than just wonder if Wills will make it though the year, how much time we'll be away from the girls in hospital, how many days we'll be home together.. Of course, there will likely be some health scares for Wills this year but, overall, things are good. This time last year, we were still in Birmingham recovering from his transplant and it was the end of February before we were home. The year before, Wills was really ill in Chelsea and Westminster and, again, we weren't home until February (and then home very little throughout the whole of 2008). A lot of people are reflecting back on the whole decade today but, for me, the years before Wills is like another lifetime. I have memories, good and bad. There are things to look back on and learn from but I am such a different person now. It's not until you see first hand how fragile life can suddenly become that you really learn to appreciate what you have and make the best of it. While 2009 has been a journey for Wills back to health, or I should say really to a health that he had never had before, for me it's been a journey to work out what I will do with the rest of mine. With 3 years out of life looking after William in hospital, I have had to rebuild everything; my career, social life, even family life and it's still very much work in progress.

At the end of 2009, I have three amazing children who I am so proud of and who have a lot going for them in 2010. I have fantastic friends, many of them people I have met and come to love since William's transplants, some old friends who have been with me through the thick of it all and some old friends I had lost contact with and am getting to know again. I am looking forward to having more time for my family friends in 2010.

Career wise, 2009 has been an exciting journey of discovery. I have always wanted to write and my ambitions there are being realised. I've had several features published in magazines and am about to send my first novel to a scout to have a look at and, hopefully, work towards finding a publisher. A big surprise to me in 2009 was photography and how that took off. The Gifts of Life exhibition may have postponed for 2010 but the images are there and many have been used in local and national papers. The other huge development career wise has been the PR and media work, with Live Life The Give Life, promoting organ donation. This is all something that just developed and snow balled. Save Jess grew from just a few tweets and resulted in loads of celebrity support, over 5 million people reached through twitter, loads of media coverage, a text to Natalie Imbruglia that resulted in her, Ed Byrne, The Yeah You's and Glen Wool playing a gig to help us raise awareness and, ultimately, an invitation from Sarah Brown to the Downing Tweet Christmas Party. This time last year, I would never have dreamt any of that would happen.

One of the best things about the PR work is getting to hear all the inspirational stories people share with me. People waiting for transplants, people who have new lives because of their gifts and people that were brave enough to say yes when their loved ones were put in the position to become organ donors. It's all incredibly humbling. I am so passionate about these stories and get such a buzz when an editor wants to run them because I know how much that means to those whose stories they are. Several people have told me how this work keeps them going while waiting and gives them hope to cling to. This means the world to me. To be able to really make a difference to other people's lives like that is a real privilege. A report has just come out to show that organ donor awareness campaigns are leading to sharp increases in people signing the organ donor register and that the percentage of people on the register has risen from 27% to 28%. That's great but it's a baby step. There is still so much more to so.

So, what are my goals for 2010? Above all else, I want to to be there for my family and friends. There is still a lot of lost time to make up.

Other than that, well there is a lot to build on from the things I've achieved in 2009. It has been a bit of a whirlwind and, with a Christmas and New Year media campaign, there hasn't been space to reflect back on it all yet. Save Jess will continue and will be used to highlight other stories of people waiting for a transplant who are desperate and running out of time. Save Jess-tival was organised in 2 weeks!! If that can be achieved in 2 weeks, I am wondering what can be achieved in a year and have my thinking cap on...I am now working with Live Life Then Give life on specific projects, which is fantastic, and I will explain more about that later in the month. I'm meeting the transplant tsar, Chris Rudge, in a couple of weeks to discuss the work I've been doing and some of his plans. I'm sure that will result in more ideas for things I can do to help see the day when the 96% of the population who support organ donation are on the register and no-one has to die waiting because a suitable donor can't be found. I've seen that happen to too many people now, and most of them children. Children's organ donation is something I particularly want to discuss with Chris. Campaigns at the moment are all about signing the register for yourself and it's a very different thing to think about what you would do if your child were to die suddenly. I as told that only 25 children donate organs a year and that William had only 4 chances a year to get his transplant, and would be in competition for those chances with anyone else with the same match. Thankfully, he did get his chance but others I know were not so lucky.

Outside the campaigning, I want to build on the writing by doing more features, getting a publisher for the novel and getting more established as a novelist and feature writer. Holly and I are about to start a new project, documenting the year in the life of the Shooting Star Children's Hospice in Hampton. This will involve photography and writing and I'm really looking forward to getting started next week. I'll blog more about that in the coming days.

All in all, 2010 promises to be an amazing year. I'll carry on discovering more about my new skills and experiences and how they can be put to good use. At the moment, I'm freelancing on things which is great as it gives plenty of opportunities to do lots of things and I can work around William's health and hospital appointments etc. I hope I'll keep getting enough work to pay the mortgage and bills and feed, clothe and entertain the children. Maybe 2010 will bring me a big break, who know. What I do know is that William's donor not only saved his life but has given me a whole new one that I'm only just beginning to explore.

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.

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.

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)

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.

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.