Thursday, January 28, 2010

Time To Say Goodbye

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

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

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

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

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

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

This Poem "What Matters" was read

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

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

What will matter is not your memories, but the memories that live in those that loved you.
It's not a matter of circumstance, but of choice
In the face of adversity you chose to live a life that matters

And Jess really did didn't she!

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

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

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

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

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

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

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

Sunday, January 17, 2010

Jess, Haiti and God

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

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

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

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

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

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

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

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

Friday, January 15, 2010

To Jess!

Jess - how I will remember her

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

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

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

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

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

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

Friday, January 01, 2010

2009 becomes 2010

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

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

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

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

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

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

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

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