Sunday, April 26, 2009

Why things have been a bit quiet on here in the last week...

Gosh, it has been a while since I last blogged. People used to call me in worry that Wills was unwell when my blog went quiet. Hopefully, most people will now guess that it is due to thing being particularly busy and, this time at least, they would be right. Long may that last! William remains unbelievably well and things have been hectically busy. William is a new child, he really is. He is very healthy and things are really settling down. We are enjoying the stability and enjoying hanging out and being a family together. It is fantastic having all my children together. It is an amazing feeling being outside in the garden, feeling the beginnings of summer and believing that we could actually get the opportunity to enjoy it together this year and get out and do things. In the last two years, those summer garden days were generally numbered only a few, a week perhaps at least, before they were snatched away and we were back in hospital and separated from the girls again for many long weeks. I am loving the fact I can make plans and write things in my diary, knowing that it is more likely they will happen that not. The girls are having a great time going out with their friends, having fun with Wills and I and, generally, having some stability to grow up in and start to spread their wings - which they are both doing.

Having a more predictable life is critical at the moment as I have lots going on. I am getting back up to speed with work and catching up time lost with so much disruption over the last few months and years. In my 'spare time' I am working away at the 'Gifts of Life' project. Things are moving very fast and, if you see another gap of more than a few days with nothing new on here, you may want to check the Gifts of Life blog to see what has been taking up my time and keeping me away from blogging here. I am really excited to have Holly on board now. Holly had a living donor kidney transplant last year and is using her photography to explore the relationship between transplant recipients and their donors. Her images will form part of the 'Gifts of Life' exhibition which...drum roll opening in a fantastic gallery in London. The Menier Gallery on Southwark Street near London Bridge Station. The exhibition will run from 14th-19th December so do put it in your diary and come and see us if you can.

We have some really exciting plans but, as ever with this kind of project, we are looking for funds to make it all happen. Among our many fundraising plans, we are offering the chance to sponsor one of my images in the main exhibition. The cost of each image, incorportating absolutely everthing from travelling to the photo shoot, printing and mounting the image, its share in the cost of the gallery hire, publicity...absolutely everything is £250. We are inviting individuals, families, businesses or groups the chance to sponsor an image or images. In return, we will acknowledge them with the image in the exhibiton and in the photo book. We will also invite them to the private viewing on December 14th and present them with a complimentary copy of the accompanying photo book. If you, or anyone else you know could help with this then please do get in touch.

If that were not enough, I am getting well and truly back into writing. I am back at the City Lit adult education college for a couple of hours on Wednesdays for a writing workshop. It is fantastic to be back with people after so long in isolation with William. Not surprisingly, there is an awful lot of material that has to be attended to before my brain has the space to work on anything new so I am writing mainly about my experiences over the last few years. One project is to compile all my thoughts, photos, letters and some of the art work I did with William (and some of his photos too!) in a journal style autobiography. Thanks to Holly for that idea and giving me a purpose for the huge box of stuff I have accumulated. I am also using my experiences as the foundation for a heavily autobiographic, yet fictional novel. This is great to be writing as it give me the chance to really explore some of the situations I found myself and some of the issues I was faced with.

Wow, now you can see why I have been quiet on here for a week - I promise not to be so quiet for so long again.

Thursday, April 16, 2009

Chocolate has never tasted so good!

We had a lovely Easter. It has been so lovely being at home together with William happy and healthy. We have spent most of the time at home as we can't go out to the park in the rain and can't go there on a really sunny day in the school holidays as it is too busy. We have enjoyed playing in the garden together and getting out as and when we can but the best thing has been just hanging out together. This afternoon saw me getting some work done whilst watching the girls play on The Sims on the Wii and William busying himself with his engines. It has been nice just doing our own things but doing it relaxing together at home.

Oh, and the best thing of all has been to see William licking chocolate and sweets and even a twiglet. More tiny baby steps towards eventually eating and getting off his gastrostomy feeds. He likes the taste of chocolate and has now stopped washing away his little tastes immediately with water. The girls and I managed to give up chocolate for the whole of Lent too. Chocolate has never tasted better as it does in this house right now!

Wednesday, April 08, 2009

Easter Holidays in Isolation

Wills TPN and line free, off to investigate some trees

First daisy chain of the year

Back to the daisy chain

Wills enjoying some rough and tumble play with Hope (until his bag leaked in spectacular fashion!)

Showing William the daisies

Ellie frantically picking daisies to finish her chain when William's bag dictated we made a hasty retreat home

Today should have seen us off to CHASE Hospice for our first holiday together in four years. Unfortunately, another child arrived with chickenpox which is a huge deal for Wills post transplant so we had to cancel. We are all very disappointed as we had lots planned and Wills has a lot more space to enjoy in his isolation. Still, we are determined to make the best of the holidays and decided to make the most of the sun this afternoon and head for the park. There were too many children in the playground which was nice in a way as we were forced to make our own games. We are heading off to another park a bit further away tomorrow as we plan to be more organised and go as soon as one feed is finished (and with extra stoma bags with us in case!). If the sun shines warm enough, we may even have a picnic - looking at Ellie in her sundress you would think it was already hot but the rest of us had a couple of layers on today!

It is a challenge keeping them all happy. Thanks so so much to Postpals and to the wonderful people who have sent the children Easter activities to do. We will be making the most of them over the next few days. At least this year we have plenty of time for making hot cross buns and easter cakes. It is a while since I have done that. Hot cross buns is planned for tomorrow. In many ways, it is nice to have to simplify life so much. I am looking forward to the end of the isolation period though. Just another 5 weeks to go.

Thanks to all you heroes

Thank you so much to those of you who signed the organ register yesterday and who donated their Facebook status or proflie pic and sent emails etc... It was an amazing day and early reports suggest that Holly's campaign has les to a massive three fold increase in people signing the register. That is amazing. So amazing that look what happened at the end of the day here Holly has been invited to meet the man himself to talk about the campaign and how he can help.I spent yesterday eveing at a drinks reception with people who have had a or are waiting for one transplant, donated a kidney or are part of a famiy who made that brave and incredible decision to donate organs. There was an amazing bond between us all. So many people there would not be alive anymore without that gift. We heard all about Holly's success and vowed to keep on figting until people are not having to die waiting for organs. My 'Gifts of Life' project is part of this fight. There is a lot of exciting things going on at the moment and it is all so inspirational. Thank you, thank you, thank you for your help and support in it

Tuesday, April 07, 2009

Take 2 minutes to be a hero

You can be a hero today and it will only take you 2 minutes!
We are looking forward to a happy family summer this year and this is possible because William got his gift of life in November last year. Countless families are still living in the agonising uncertainty that is life on the transplant waiting list. Of these people still waiting, 1000 will not be here to celebrate the 2010 New Year because their gift simply will not come in time to save them. If it were not for our wonderful donor family, that could have included us.
Today is world health day and the lovely Holly, herself a recepient of a kidney transplant last year, is heading a campaign to celebrate world health day by making it Donor Day - a day where people are encouraged to think about organ donation and sign the donor register. You may have seen Holly on GMTV this morning and, if you are in London, have a look at the front page of a Metro - they have changed their banner to advertise Donor Day.
Please, please join the GMTV and Metro team be a hero today by visiting to read all about Holly and her project and sign the organ donor register. It will only take you 2 minutes, as long as it takes to boil your kettle for a cup of tea so go on, put the kettle on and drink your tea knowing that you have just become a hero.
Still need convincing?
Then watch this

Sunday, April 05, 2009

New blog and website

I have another new blog. I have started one to record my journey through the 'Gifts of Life project. You can find this new blog here I promise I will keep them all updated regularly.

Gifts of Life also now has its own website here

For now though, my attention is turning to Spring cleaning my kitchen cupboards and the girl's bedroom. Those who know what that will entail will know that will take a big part of today (and will involve a good few strong words between the two sisters).

Wills is still well. As we were told to expect, it is taking a while for him to get shot of the cold but he is well in himself. Couldn't ask for more.

Thursday, April 02, 2009

Calpol and Cuddles

William woke on Monday with a sore throat. He was totally bemused and troubled by it. Strange really as he must have had several sore throats in the past. Maybe he was feeling so unwell in general that a sore throat was barely noticed. The new healthy and energetic Wills noticed allright! He is so brave about big things but a sore throat or a snotty nose have him running around in circles asking me incessantly to 'help!' and 'do something!'.

He was not himself at all on Monday. No toys came out, not even his engines and the slightest sip of water was obviously painful, so much so that he stopped drinking all together and I had to give him water through his gastrostomy for the first time in several weeks. He was virtually silent all day as he refused to swallow his saliva and had a constant mouthful. I was concerned as last time he became unwell we ended up back in hospital with pneumonia. I called the transplant team who just told me to keep a watching brief.

He went to bed at 6 pm and, after an unsettled first half of the night, slept until I finally woke him at 10am the next morning. I knew the next day would be the make or break day and was relieved to find his sore throat gone. He was clingy, cuddly and very snotty so we spent most of the day cuddling on the sofa, watching Cbeebies. I hate him being ill but it was kind of cosy really once I had managed to reassure myself that he was OK and this was just a normal cold, made worse by his immunosupression. Calpol took the edge of his sore nose and kept his temperature down.

As for today, he was running around again, glugging water and more than making up for the lack of talking he did earlier in the week. He is certainly made of strong stuff!

Hope came back from her French exchange yesterday evening. She walked through the door looking a good few years older than she did when she left, thanks to a new style of make-up and some accesories purchased in Paris. She is growing up so fast. One of the sadest things of the last few years is how much of the closing years of her childhood I lost - she is quite the teenager now. I can make the most of that phase of her life with her but can't get some of those precious childhood moments back. She is not too old for cuddles yet though!