Friday, November 12, 2010
Wow, it's been a long time since I've updated this. To be honest, I didn't want to write here when William was so unwell over the summer. He had 8 weeks with his new bowel not working after a tummy bug and was back on TPN again. The internet connection was dicey to say the least and I just couldn't bring myself to write entries about a new Hickman Line, pouring stoma output and TPN. After an unsettled time, Wills is thriving more than ever and even beginning to find the confidence to start eating.
Our biggest news is that we have a new addition to the family and with the new start we hope he'll bring, I've decided to start a new blog. I'll leave you with that cliffhanger and invite you to hop over to the new blog and I'll see you there...
Saturday, June 26, 2010
If you've been following this blog for a while, you'll remember how William had a fair few ups and downs while he recovered from his transplant and how I likened it all to a game of snakes and ladders. We had a nemesis snake every time we tried to turn his feed above 15 mls per hour and became more well known than I would have liked in X-Ray and Theatre to identify and fix blockages. When you go for transplant assessment, it is made very clear to you that transplant, although a wonderful, life saving thing, is not a golden panacea and that having a transplant is swapping a set of chronic medical problems for another, all be it a less dangerous and immediately life threatening, set. Sometimes, it is all too easy to forget that that game of snakes and ladders goes on throughout life after transplant. We've just had a bit of a reality check and have hit a very long snake indeed, one of those you land on when you think you're home and dry in the game and that takes you all the way back to the first line of numbers.
William had his stoma revised in April because it had prolapsed. He'd never been right since then and seemed to be losing a lot through his stoma, especially after his special milk shakes (scandishakes). His weight had stuck a bit and I was concerned but not too worried because he seemed well in himself. I did have the feeling we may be facing a hospital admission before too long for a review and, perhaps, a change of feed. What I wasn't expecting was for Wills to wake one morning looking more dreadful than I've seen him since his transplant, white with dark rings under his eyes and floppy. I called his Dad who, luckily, wasn't at work and we took him to Chelsea and Westminster. He was very dehydrated and his stoma was pouring. Tests showed he had a lot of sugar in his stoma fluid, indicating he wasn't absorbing much at all and his blood sugar levels were low, even after a milk shake. I was worried he was rejecting his bowel and I wasn't the only one.
The next day, tests came back showing he had rotavirus. We all breathed a sigh of relief and he was started on immunoglobulins (factors in the blood that help fight infections) into his bowel to help him combat the bug. Things didn't settle and, as rotavirus can cause rejection, we were rushed by the most stomach churning blue light ambulance ride to Birmingham Children's Hospital for a scope and biopsies with the concern that he was rejecting. Thankfully, all the tests have shown that William has not had any rejection. It's always a relief to rule out the 'big R' but it's only half the story. Infection is another big worry after a transplant, especially infections that directly affect the transplanted organ. Wills had rotavirus but the team feel he has had another, probably norovirus, from about the same time he had his surgery and that his bowel has been grumbling about that before the rotavirus tipped it all over the edge. His bloods were the worse I have ever seen them to be, such a worry when these viruses, although nasty, are pretty normal and, even more worrying, are everywhere!
That snake really has taken us to one of the very first squares. Wills is back on TPN (the IV artificial feed he depended on before his transplant) while we wait for his bowel to be ready for feed again. He is having 5 mls an hour of the simplest of feeds, an 'elemental feed' made of nutrients at their very simplest, single molecule state. We'll wean it up very slowly and wean down the TPN but have a long way to go to the 50 mls per hour William needs. It was upsetting to see him back on TPN and see that white line in his chest again but he's lost 3 kg and needs some nutrition. It's even more upsetting to be away from Hope and Ellie for a prolonged stay in hospital again.
I am trying to remind myself that, although back to the start, we are still on the board. This is not William's own old bowel. This is a healthy bowel that looks great on the endoscopes but has just got a little unwell and needs some time to recover. I just hope we don't meet our nemesis snake again on the way back and struggle to get past that 15 mls per hour!
Friday, June 04, 2010
Wow, I have neglected this blog! I changed the name to something exciting and then didn't come back again. Sorry. I will attempt to do better.
Needless to say, we've been busy! I have been very busy writing features for various magazines. I have a real-life health feature in this week's Take a Break (available until Wednesday) and have more due to appear in the same magazine in the coming weeks, as well as Grazia, Cosmopolitan, Mail on Sunday YOU and Woman Alive. Next week, I aim to start a new blog as a companion to my writing. It will contain some 'behind the scenes' commentary on some of the features, together with snippets from press releases and my research etc. I promise to keep this one going a lot better than I have of late at the same time!
The biggest family news since my last blog is that William has finally been diagnosed with Asperger's Syndrome. There is a lot to come to terms with and think about and this will, no doubt, be the focus of many blogs over the coming days and weeks. The main thing I want to say about it today is that I am fast learning Asperger's is NOT a disorder! It's a different way of perceiving the world. William has a higher than average IQ, is creative and very funny - so funny, I think he should be a comedian! He is very intuitive in some ways but he is also has obsessions with things, especially Thomas the Tank Engine and 'disasters', likes things to happen in a way he predicts and struggles with the unpredictable nature of human social contact. He is a walking encyclopaedia on his 'chosen specialist subjects' and can read as well as his 10 year old sister. He has a photographic memory for words and only has to be told a word once and he has it. He would read as well as me if he was told the words, but, of course, wouldn't understand the content of 'The Girl With The Dragon Tattoo.' One of William's biggest challenges is that he is very sensitive to sensual over stimulation. In fact, over stimulation is the wrong word. It's not just that sound is louder and colours brighter. Some children with Asperger's and other forms of autism can actually feel noise as pain and I wouldn't be surprised if Wills feels the same, especially the kind of noise that vibrates. William is very stressed at our church and I fear we may have to find one that doesn't have the bright lights and vibrating organ we have. You can't simply expect him to behave if the environment is physically uncomfortable. Getting the balance right between normal childhood naughtiness and where he really is too uncomfortable will be a challenge. One thing we have already learned is that he can't cope with stopping an unfinished game or TV programme. He really gets very stressed. It's much easier on everyone to give him enough notice of bed time or going out for him to finish his activity and since we've adapted our home life to include that it's all been a lot easier here. I'm looking forward to finding out more ways of dealing with the more challenging aspects of Asperger's - especially how to cope with his 'melt downs.' We had a few of those today when I had to stop a game, for example to change a leaky bag and I have the pinch marks on my arm to show how distressed this can make him. He's always sorry after he's calmed down and doesn't want to react in that way.
Along side his Asperger's, we learned this week that William has delayed cognitive processing. This means that it takes him longer to respond to an instruction or a question. All the small bowel transplant recipients are showing the same and the team now believe it's due to dependence on the artificial, intravenous feed, TPN, when the brain is still developing in babyhood and toddlerhood. William will need longer to complete activities in school and for exams etc. It is heightened for him because he always comes back with complex and complicated responses to things and likes to be funny. It takes him a bit longer to put all that together. This is something else that is very important and useful for us to know about. It's sad that those years when he was so unwell have led to some impact on his development but it's a minor one and to be expected really. As with the Asperger's, my job now is to teach him to make the very best of his talents and abilities and how to cope with his differences and adapt around them so he can make the amazing contribution to the world that I know he can. I wouldn't want to change anything about William. He's a little character and his differences are a big part of what makes him that way.
Sunday, April 25, 2010
Do you like the new blog title? When I started this blog, our lives revolved around William and it quickly became a blog centred around life in hospital and sharing the daily news about his illness and fight back to life after transplant. I have talked a lot about the journey I, Hope and Ellie have been on with him but life is about so much more now.
It's very easy to get stuck in a rut when you have a child with any kind of additional need. Life can be exhausting and, with autism of Asperger Syndrome, it can seem easier at times to just let the child get on with their routines. This isn't good for anyone and this spring, our first home together and with Wills out of the isolation he was this time last year during the early days of his transplant recovery, I am determined to get us all out doing new things and meeting new people. We all need to broaden our horizons - hence the new blog title!
William's spiky ball
With William, you just have to get on with things, support his anxieties but throw him in the deep end because, with the right care and help to feel safe, he'll enjoy himself in the end. I did that literally on Friday and took the children swimming for the first time ever together. Wills swims at school but had never been in a busy public session before. It won't be long before he goes again. He's a natural water baby. Once he knew his arm bands would hold him up he was determined to move about independently and even had his face in blowing bubbles. It was so lovely to be doing something together that so many families take for granted. With the Swim4Life programme, the children can swim for free and pool membership is free for me on tax credits. All this means, we can enjoy the pool for just over £1 for the family. We'll be doing our best to go once a week.
On Saturday, we joined in with the first session of a new local arts project 'Life In London.' This will comprise off seven sessions over the summer, with activities to do together in between. The resulting work will be exhibited in Croydon. There is a project blog here so do go and have a look. Over the coming days, there will be some photos of us all taking part in drawing activities and a montage of images we took in a photo treasure hunt. There is plenty of space for more families to take part so, if you're in Croydon, do join in the fun. We'd love to meet you.
I knew William would find it difficult to settle and participate in the group. Group work at school is something he finds very challenging and he will often play at being asleep or stay silent when he's asked to talk to a group. He was especially upset because getting the tram into Croydon means shopping, not walking up to the Clock Tower to do art. This was a big change in routine, something he finds difficult. As I predicted, Wills wouldn't join in the hellos and staying on my knee, burying his face in my chest. He eventually began to peer towards the group more and more so I encouraged him to sit on his own chair. Hope had decided to play 'just a minute' so I suggested Wills spent a minute telling us all about Thomas and Friends. That did the trick. The minute Wills had held court with the group and entertained them by getting all the engine's numbers wrong on purpose, we were off! William joined in with some lovely art activities doing doodle patterns. I was really surprised. It was lovely seeing him do something completely different and being so relaxed and happy doing it. I got a fascinating insight into how he perceives things during the next activity. We had to feel in a bag and draw what we felt. The bag had smooth, bumpy and spiky balls and, while we all tried to draw what the object we felt must have looked like, Wills recorded what he felt. The picture above is a spiky ball. The one below is a smooth ball. I find it fascinating to see what he's done. It is bringing the developmental and cognitive psychology I studied and taught out from dormancy and getting me thinking.
William's smooth ball (no help was given at all)
William was really entertaining and, often, insightful. I feel more and more that the Asperger's syndrome is not a disorder. It's just different and deserves to be understood and embraced by others. Hope and Ellie did some fantastic drawings throughout the day and we all felt inspired to carry on exploring art together. We will certainly be doing all the activities asked of us between sessions. We want it to be a spring board into new activities we can join in together regularly.
We rushed off from the session to the church one of Hope's friends goes to. Her Mum leads a lovely monthly event called 'cafe worship' where people share tea, sing choruses, pray and listen to speakers. This month, Hope and I were invited along to talk about Wills and organ donation. Hope has been asking her friends to invite her to youth groups, churches and any other suitable event and is doing a big assembly in school on Friday. She is quite the campaigner these days. Hope did really well, I was so proud of her. Wills was good all the way through and Ellie coped very well hearing us relate what was a very difficult time for her too.
From cafe worship, we rushed home to do some filming. I'll tell you more about that later in the week but, once again, my children were super stars. Wills coped really well with disruption to his routines and enjoyed having more people around to entertain. Having settled Wills to bed, the girls and I were chilling with Britain's Got Talent when the door bell rang. It was the guy who had filmed us. I asked what he'd forgotten and he said, nothing, something was bugging him. He knew that he knew me. I thought he looked familiar but was astounded when he said that I'd been one of his lecturers when he was a student at Bath. That's the first time I've ever run into anyone I've taught. What a small world!! It was even smaller yesterday as one of the girls who organised it grew up just up the road and another was someone I met at Downing Street at the Downing Tweet party.
We were meant to be going to London today to cheer on those running for the fantastic Starlight Foundation and, much as I really wanted to, Wills needed down time today. He was fantastic yesterday but you need to be realistic pacing children like him. Not only does he get physically tired but he gets very emotionally tired. We all broadened our horizons yesterday and Wills especially. Today, he needed time to relax playing with his engines and watching his CBEEBIES programmes. I was pleased when he came to me to play some drawing games based on yesterday. He did hold what he learned. Days like that will open his mind and stretch him but they are stressful for him too and I need to remember that.
Sunday, April 11, 2010
From the very first moment the word 'transplant' was uttered as a potential option for William, we were told that no transplant comes without complications and that it isn't a golden cure. Living with a transplanted organ, especially one as complex as the bowel, is a chronic health condition in its own right. William depends on a daily cocktail of medications to keep him alive and we were told there would be times when things don't go as well as others. William had a lot of early complications and his bowel took a while to get working properly but, once it kicked in, we never really looked back. We had the odd little bumpy day but nothing too worrying. The main concern was always William's stoma. He has no colon so has an illeostomy, where the bowel comes through the skin to enable waste to drain into a bag. William's stoma has been prolapsed for over a year. The bowel is an internal organ and wasn't designed to hang out of a lively five year old and so it began to get damaged. We knew it would need fixing sooner or later and, last week, that time came.
William and I have been back in Birmingham for the last week. He now has a very tiny discrete little stoma which is fantastic. All went well. William is sore and tired but that is to be expected. The bowel hates being handled. At first it pulls a total strop and doesn't work at all. Then it pours. William's bowel is at the pouring stage at the moment. I have been reassured by our team that it will settle but it is hard to relax when you've been there before and it didn't improve. Old memories are hard to ignore. I'll be relieved when things start to normalise again. William is hundreds of times better now than before transplant - a different child! The little set backs are worrying though as you are never totally sure they won't lead to anything more. We've been so lucky over the last year as Wills has been so very well and stable. We've got used to it and it's upsetting to see him a little more vulnerable than he has been. Some of the friends we've made over the last couple of years are facing much bigger hurdles and complications and they are very much in my thoughts now. This is nothing compared to what they have to get through.
It is fantastic to be home from hospital but I do tend to feel a little nervous whenever we come back with things a little bit different and some recovery still to be done. I think it feels even more scary when there is just one of you. I do call Paul to sound things out when I'm concerned about Wills but the decisions and responsibilities totally rest on my shoulders now and I have to juggle the girls' needs in there too. It's not always easy. I find the practical things are easier on my own. I have a routine and, although school mornings are a bit frazzled, it works. The emotional worry can be hard though. At the end of the evening, it's just me and there is a lot of time and space to brood. The girls have been at Mum and Dad's and are now off to their own Dad's for a week so a little concern over Wills is coinciding with a lot of quiet evenings.
This blog has talked a lot about post transplant complications and worries. These are all normal and part of the journey. It is a journey and one that would not have been possible without our wonderful donor and her family who said yes when asked during the darkest time in their life if they would be willing to save other people's lives. Had they not have said yes, we wouldn't have had a transplant and a William to be worried about. I was very distressed today to read this Of course, my heart goes out to anyone who may have agreed to donate all of their precious loved one's organs and are now being told there were specific organs their relations didn't want to donate. I am truly very sad for them. However, these numbers are tiny and it is a specific administrative problem that has now come to light and is being sorted. I think the reports have been blown up out of proportion by those who are rubbing their hands with glee at the thought of being able to try and blame the government for something so upsetting and emotive. To anyone using this situation as a part of their election campaign, I want to say how worried I am about their tactics. There are 10 000 people on transplant waiting lists. Of those, 1000 die each year - 3 a day! The way this report has been reported has created a real danger of putting people off registering as an organ donors. Going on to use it to undermine the work the present government has done in promoting organ donation is only increasing this danger. This issue is not something that I feel should be bought into the negative campaigning the Tories and their supporting papers are doing. If people are deterred from joining the organ donor register or saying yes if asked about donating their loved one's organs then people will die. The lovely Tor is on GMTV at 6.45 tomorrow morning to talk about her wait for a double lung transplant and do her best to make sure this doesn't happen. Please tell your friends about her. Tell them about William who is only here because of our wonderful donor. Tell the how grateful we are and how we think of her and her family every single day. Tell people not to be put off from saving lives if they or their loved one's were to die and ask them to sign the register. A lot of people are very upset and worried about the impact of this report. Please help me to show them they don't need to be.
Friday, April 02, 2010
One of the most moving things I've ever seen was the Good Friday drama and walk of witness we watched in Croydon today. We didn't follow it all because it would have been too much for William but we caught the final section in the city centre. We arrived just as the procession did. Jesus' bloodied dead body was carried, swathed in black to a slow drum beat. It was incredibly emotional and the most faith affirming experience I've had in a long time. I've struggled to take time out to prepare properly for Easter this year. I've been somewhat distracted by William's hospital admission being on Easter Monday. It's somewhat hijacked Easter. I'm glad I had that powerful moment today. I always think you have to experience something over Holy Week and Good Friday to really appreciate Easter for what it is. I've had that now and, even though the next few days will be dominated by preparing William for hospital, I will feel that new life and revival that Easter brings.
As well as being Good Friday, today was World Autism Awareness Day. William asked my today why they crucified Jesus. One of the reasons I gave was that they didn't understand him and so were scared by them. There is a parallel there for William. He is charming, funny and engaging and everyone who meets him adores him. But, there are elements of his behaviour that the world doesn't understand. His rigidity, his obsessions, his utter panic and distress when things don't go the way he anticipated look now like an immature tantrum but, as he gets older, they may seem threatening, even frightening to people. People will think William odd. He's not odd. William just sees the world a little bit differently to most others. He sees things in back and white and struggles with things that don't fit rules and structure. Like many people with Asperger Syndrome, William is extremely intelligent and gifted and has a huge amount to offer society. The greater society's understanding of autism and Asperger Syndrome, the easier it will be for William and those around him to communicate and appreciate each other. I'm grateful for those who have supported today. It gives me hope that William will grow up in a world that understands him and are prepared to adapt to his needs. He is certainly working very hard to adapt to the needs and expectations of those around him so it's only fair we all try a little too. Please visit the National Autistic Society and learn three things you didn't know about autism.
William wasn't moved by Good Friday at all. Our curate told the children the story of Jesus' death, explaining it's a sad story. William turned to me and said;
"But Mummy, it's not a sad story at all. Jesus had to die didn't he. It had to happen that way."
When I asked why, he replied;
"Because he had to die so we can see him when we die."
Maybe sometimes just accepting things and not looking further than the black and white is the best thing. You could read several theology books focusing purely on that William had summed up perfectly in two sentences.
Saturday, March 27, 2010
A few weeks ago, I booked for Hope, Ellie, William and I to go on our first ever holiday together - the first time we've been ever to get away in six years. Thomas the Tank Engine is coming to Butlins and I know a little boy who adores Thomas and friends! I thought Butlins would be an easy holiday for the first with all the medicines and feed and, as I don't drive, we could get there easily by train and then have all we need on site. With everything booked for Easter Monday until the following Friday, I was devastated to hear yesterday that there would be a national rail strike that week. We'd be able to get there OK but the strike could prevent us returning home. I spent ages on the phone working out alternatives and came up with a contingency plan to stay an extra night if necessary. It would add to the cost but no 'spring of discontent' was going to ruin this special holiday!
Before William's transplant I would never have dared book anything any further than a day away. Every time we ever planned anything, he always ended up in hospital and we learned it was better not to set ourselves up for the disappointment. William is doing really well after transplant. The only thing that is causing slight concern is that the bowel that comes through his tummy to form his illeostomy has been prolapsed for quite some time now and has a few sores where the delicate internal tissue rubs on his clothes. [For any new readers, William's colon was removed at the time of his transplant but wasn't replaced. You can cope fine without a colon with the end of the small bowel being bought out through the skin to form an illeosomy] When we were at transplant clinic last week, we discussed the prolapse and our consultant said he felt it was time we thought about fixing it. He asked me to send a photo for him to discuss with the surgeon and then come back to me with a plan. I was surprised this morning to get an admission letter for William to go to Birmingham on 5th April for surgery. The day we were meant to be going to Butlins!
My initial reaction was to call the team on Monday and ask for this admission to be postponed. Then I thought about it a bit more. Being on my own, I can't cope with these admissions without Mum and Dad being fantastic and looking after the girls and they are away for 3 weeks from the end of April. Ellie has her SATS in May and then will begin her preparation for secondary school. It would be awful for her to be away then and miss meetings and visits to the new school. The girls are looking forward to a week with Grandma and Granddad and they're off to their Dad's for the second week of the holidays. If it wasn't for the fact we'd booked our holiday, this admission is actually perfect timing. Thankfully, a quick call and our holiday was rebooked for the first week in August. Thomas won't be there but I think it will be better for William overall as his plaster casts will be off so he can go in the pool and play on the beach.
With the holiday sorted, I'm now planning how I'll juggle work. I have lots of fantastic stories that need working into pitches so I'll get as much as I can worked up and pitched to editors this week. Hopefully, some will be commissioned and I'll be able to do the interviews, write them up and write features while we're away. The 3G reception is pretty ropey at the hospital so I'll have to negotiated an hour or so away from Wills to find an internet cafe if I need file any copy to meet a deadline. A couple of new DVDs will help me win a few hours. For the most of the week, I'll concentrate on my novel. I think one big push during the evenings while Wills is asleep and I'll have the first full draft finished. I can also research some more agents and work out a strategy towards getting a publishing deal by the end of the year. There are two main reasons why I'm a freelance writer. I am passionate about writing and telling stories and the flexibility of freelancing is essential to my life. My work can be worked around William being home if he's unwell, hospital appointments and admissions. I'm lucky this time to have a week to manage the work I have on so I cam make it easier to take with me to the hospital and assess what can be realistically done from there, what needs to be done before we go and what I can leave for when we get back.
I'm pretty confident I can juggle everything and not get behind during the week to ten day stay they've predicted. The girls will be fine for that long, and would have been away for half of the time anyway. I just hope William's bowel settles quickly after the operation so it doesn't drag on. At least our new holiday is several months away so we should all be back on track by then.
Thursday, March 25, 2010
Being a freelance writer can, at times, be a bit lonely. Most of my time is spent tapping away on my laptop at my desk at home. It's great that most of my writing is about other people because I get to talk to interesting people most days but there are days when it's just me and the keyboard. I very much welcome days that take me out and about, meeting people so was very much looking forward to yesterday. With a couple of coffee meetings during the day and a social gathering of fellow freelance journalists from the Journobiz forum in the evening, I spent most of the day going backwards and forwards in and out of London. I knew it would be hectic but it turned out to be a bit more eventful than I'd bargained for.
Over Christmas, the UK security alert status was set to severe, meaning we are, apparently, very likely to experience a terrorist attack at the moment. We were given that information, not to ruin our Christmas and fill us with a sense of fear that 2010 will see another 7/7, but to let us know that we all need to have our wits about us. A 'severe' threat level tells us to be on the look out for anything suspicious and unusual and be ready to respond quickly. Transport hubs and stations are always high up on the list of potential terrorist targets. After 7/7, a lone suitcase made us feel uneasy at the very least. Now, I'm not even sure I would notice. We so quickly become complacent. So much so, it would seem, that even when sat in Starbucks outside Victoria Station, witnessing police rushing around evacuating and blockading an area surrounding a bus, I was more interested in knowing what was going on than getting the heck away. Even in these times of high threat, my curiosity far outweighed any fear. Even when two police officers came in and told us that there was an incident involving a marksman on a bus just opposite us, people were keen to carefully gather their belongings and put coats on before legging it. We've become so close to false alarms that my thoughts were that someone was about to become very embarrassed to find their lost rucksack at the centre of such a circus. It wasn't until I got home that a good old google search revealed that a few feet and a panel of glass was separating me from a man wielding a gun! Thankfully, the police were quick to get the situation under control but it could have been a lot worse. I have to admit, the fact we are on a state of alert suggesting a terrorist attack is likely completely slipped my mind, even though I was in the middle of what could have been that very event unfolding.
The threat of terrorism isn't all we Londoners have to think about as we go about our daily business. Another we are constantly being warned about is pickpockets and bag snatchers. I like to think I'm pretty careful on this one. I hold my bag close to me on public transport and am paranoid about my iPhone - I constantly check it and keep my hand on it when I have people crushed against me on the tube. Yep, I'm vigilant about this one...until I'm deep in a heart to heart over a glass of wine. I was having a lovely evening, meeting up with fellow writers I've met on the Journobiz forum. One of the things I find so amazing about this group of people is how much we encourage and help each other, sharing contacts and helping each other with case studies. Freelance journalism can be a lonely game and it's fantastic to find colleagues and friends among others sitting at home bashing out words on the keyboard. Someone had just shared a useful contact with me and I was keen to scribble it down straight away. I was sitting at the end of the table and my bag was right by my feet. Or was! How on earth someone managed to sneak up to our table and steal my bag without any of us noticing I don't know! We searched and searched but it was gone, together with my cash, card and ticket home. My overwhelming feeling was one of total embarrassment with having to rely on people I'd only just met bailing me out so I could get home. They were fantastic and, of course, I'd have done the same. I lost £30. Not much in the grand scheme of things but that's a lot of Primark clothes and Lush goodies to my two girls and would have got William 5 of his treasured Thomas engines. Worse is the fact that someone took my stuff. The bag I chose for myself, my diary, a magazine, a notebook (empty thank goodness) and a pen. Worthless to them and, no doubt, slung in an ally in Richmond somewhere by now, but my personal things. For once, William's situation and my need to be within easy reach of his carer, saved the day. The thief didn't get the main prize - my iPhone was safely on the table!
I felt really bare going home with no bag at all and had a bit of time to feel that way too. London had one more thing to throw at me. All trains from Victoria to East Croydon were delayed...because of a trespasser on the tracks in Brighton!
Thursday, March 11, 2010
This Monday saw the 100th year of International Women's Day. All over the world, women got together to form an alliance of support for those facing challenges. Many organisations led events focusing on their own issues, issues including freedom, justice and health. Us women really can make a huge difference when we get together to make a point - just look at the huge political interest in Mumsnet in the run up to the election. My previous blog about the amazing women campaigning for bone marrow donors is another example.
I spent Monday being a busy journalist and so missed the opportunity to join other women on bridges over The Thames, to show my support for those whose lives are affected by war. As this was going on, I was busy interviewing the inspirational Jonnie from the Haiti Hospital Appeal . This was the only time he was free but it was perfect timing, given that their amazing work was inspired by the 75% of Haitian women who give birth alone in a country where seeking health care is "impossible."
In support of Jonnie, all at the Appeal and those women whose lives they are dedicated to change, I decided to play my part for International Women's Day in joining the White Ribbon Alliance at their 'Global Dinner Party.' All across their 140 member countries, women joined together for fun, food and fellowship and to think of those the Alliance reaches out to help. Every minute, somewhere in the world a woman dies in childbirth, 99% of these women are in third world countries. These are the women we were thinking about throughout our evening. Every single woman who came to the party has their own incredible story. I didn't set out for that to be the case, it simply reflects the circles I move in since I had William. For many of our peers, we are women who have been through unimaginable challenges but we all came together to share an evening thinking about those who needed the health care and support we had, or our children had, in order to be alive today but just happened to have been born in a country where that level of care just doesn't exist. We may have been through our own difficulties but we are the lucky ones!
With William living in and out (mostly in) hospital up until coming home from his transplant a year ago, I haven't organised anything like this for about four years! He's been home for the last year but it has take a while for us all to resettle and allow ourselves to take it step by step back into life again. I just hadn't really thought of inviting a group of friends round. I guess I was so far out of that mind set so I'm really grateful that this inspired me to just do it. I will be doing it again very soon! Because it was been such a while, it wasn't until 3 hours before the party, just as our local shops were about to shut, that I realised I didn't have enough bowls and glasses. I am now fully stocked for eight dinner guests so there has to be a next time.
We enjoyed our food and a good natter. Only two guests had met each other before. In fact, not only met each other, but one gave her friend an incredible gift - one of her kidneys! We chatted about that for a while and went onto debate the ongoing question as to whether we should have an opt in or opt out system of organ donation. Another of my guests donated her Mum's organs when she died so, between us, we had a lot of thoughts, feelings and experiences to share on this.
While organ donation was a big issue that every woman in the room has experienced, we were keen that the evening didn't become dominated by it. We are all grateful for the second chance we, our family members or friends were given, or gave, through organ donation but the night was for thinking about those who don't even get a first chance at life.
After a yummy dinner of Chilli, Sue's lovely milk jelly (that was a staple dinner party treat in my childhood reminded me of my Mum and Grandma - very appropriate), coffee and some of the really gorgeous mini cup cakes from my favourite Love Bakery, we sat down to watch a video. I wanted to focus our party on the work being done by the Haiti Hospital Appeal. There are lots of videos on their website and You Tube showing what they are doing now with the children in their respite centre, their clinics and their work with the earthquake injured. I wanted to go right back to the beginning, in 2006, to when two amazing 21 year olds arrived at Haiti and saw first hand what healthcare is like there. The video we watched is here We watched in silence, amazed at what we were seeing - not only the level of deprivation, the grief for Julia and her family, but also the inspirational response shown by two young men. I will come back to the Haiti Hospital Appeal again soon to talk more about these amazing guys.
We could have sat and watched all the videos the Appeal have on You Tube and I'm sure will be doing over the coming days. I hope you will too. If you do, please go here afterwards and do your bit to help them.
The Haiti Hospital Appeal are a partner of the White Ribbon Alliance, and having watched such a moving piece of film, we decided we wanted to do something to support them. We decided to do a 'fashion swap" - exchanging bits and pieces we no longer wear and paying £1 for each item we took. It took us a while after the film to want to do anything other than just sit, think and talk about what we'd seen but, when we did, we had a lot of fun looking at each other's bits and bobs and picking out what took our fancy.
International Women's Day is over but we don't have to stop thinking about women all over the world who live, work and bring their families up in the face of challenges we could never really imagine. Three women who wanted to be with us, but couldn't are women who are bringing up children with very complex and life threatening conditions and another for whom, every day she wakes and breathes, she's defying all medical expectation. We all face huge challenges to get through the day but we know we have a home, food, heating, clothes and health care to enable us to get there. There is always space in our lives to remember and do something, no matter small, to help those who face the same challenges as we do but without all the things we have in the UK, the things we hardly even notice sometimes because we take them so much for granted.
Tuesday, March 02, 2010
Imogin, aged 7
I have so many things I want to blog about, so much is happening in life right now and there is lots to muse over.
I'm sitting up tonight, waiting for the right time to switch off William's feed and swap if for water, and then to switch off the water. It's going to be a long night and a very early start, leaving at 6 to get to hospital for 7 so he can have a minor operation on his feet. The procedure is minor but poor Wills has been through so much in his life so far and is terrified of 'special sleeps'. He hates the way the gas makes him feel and the sore throat he always wakes up with.
Our children are so brave. I have met a lot of children and families in hospital over the last 5 years. A few years ago we met Imogin and her Mum, Sheila. Imogin had just been diagnosed with Leukaemia and Sheila was in a state of shock and disbelief. We bumped into Sheila and Imogin from time to time when both children were in our local hospital and at a christmas party at out local hospital. I hadn't seen them for a while, but often wondered how Imogin got on. I assumed she'd have been treated and was well again. Over the last 6 months they started appearing in our local paper, appealing for bone marrow donors and then, in January, Sheila was in the paper breaking the heartbreaking news that Imogin had passed away. She was 7. I was planning to write to Sheila via the hospital.
On Saturday, I had arranged to meet with the lovely L for coffee. Shortly before leaving, I read on twitter that there was a street theatre team out in Croydon. Only 1% of those on the organ donor register are from Southern Asia, meaning many have to wait twice as long as white people for a transplant that depends on tissue match, such as kidneys. There is a vibrant campaign on at the moment to address this, using street plays and faith road shows to promote organ donation among the Asian community. You can read more about the campaign, and find out if it's coming near you here . I suggested L and I met to watch the play. It was really entertaining and effective in addressing the myths about organ donation. I think real life stories are incredibly powerful but will be looking to incorporate some of the ideas in talks I plan to do. It was really refreshing to see a different approach to things I've seen and taken part in so far.
L was surprised where the event was taking place as she had heard it was somewhere else in the shopping centre. As we wandered around, we found out why. At the other end was the event she had been told about, a pop up shop raising awareness and registering people to donate bone marrow and enabling people to give blood on the spot. It was being run by aclt, a charity highlighting the lack of bone marrow donors in the Afro-Carribean community. L and I went along and there I saw a familiar face - Sheila was out, just 10 days after burying her daughter, to raise awareness of the lack of bone marrow donors and encourage people to sign up to save the lives of other children. It was lovely to be able to give her a hug and share some memories. She is so strong, a truly amazing and inspirational woman!! She is determined to raise awareness of the fact that children from the Black community have a 1 in 250 000 chance of getting a match from a registered donor should they need a bone marrow transplant. White children have a 1 in 5 chance! What a huge disparity! I promised to do what I can to help them in their campaign.
L and I came away feeling incredibly refreshed and energised from what I'd seen both sets of campaigners do. We are still talking about Sheila and the other amazing people we met in just a couple of short hours.
Now, as I'm preparing myself for another day of procedures with Wills, thinking about how brave he and I will need to be again, I am drawn to a poem Imogin wrote just a month before she died. This, and the image of Imogin above, comes from the aclt website here and the words are written in exactly the same way as Imogin wrote them.
'Help me Heel me'
Heel me I pray make me sing, dance and be fine.
Help me eat I will help mummy be strong and I will get out of bed and not be depressed.
And on monday the 4th I will ‘whoshame’ (Ghanaian term which means ‘I will show them’) the hospital and my mouth will be open.
And I will go out with mummy to show's!
and go to school.
I WILL NOT DIE!! I WILL NOT DIE!!
I WILL LIVE FOREVER!!!
I WILL DIE NEVER
AND I WILL BE SUCCESSFUL WITH MY LIFE.
Ritten by Imogin
Tuesday, February 23, 2010
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
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.
Thursday, January 28, 2010
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 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.
Sunday, January 17, 2010
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.
Friday, January 15, 2010
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)
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