Tuesday, February 23, 2010

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....

Thursday, February 18, 2010

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!

Friday, February 12, 2010


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.