Monday, July 27, 2009
Tuesday, July 21, 2009
But, today was also rather eventful:
- For the first time in months, William's blood tests are a bit out, particularly his blood counts. He is fine in himself though so I am hoping it is an inaccuracy. Still, until they have been repeated and we know we have a little hint at something to be concerned about. We have had a good run with not a single worry so it is overdue really. Hopefully, it is all something and nothing. I am waiting to hear back from Birmingham.
- I got my first proper professional photography booking :) The first of many I hope.
- I was live on Radio 4 -You and Yours you can listen here I am on in the first 10 minutes, second caller. I started listening but had to switch off a few seconds after hearing myself but others say it came across well.
- Ellie and I stumbled into what looked like a huge police arrest in The Whitgift Centre only to discover it was filming for The Bill, complete with all the big stars (most of whom we recognised from Eastenders rather than The Bill)
- I got my long awaited for Canon 5D camera - afterall, if I am a pro, I had better have pro kit. Have played with it already and you can see the difference even when just playing. I had been saving up and then, when I was ready to jump, no-one had any and I promised myself the next one I saw would be mine. I went into Jessops today for a memory card and there it was...
- I wrote an article highlighting the number of people who die waiting for transplants to send out to all those publications currently obsessed with mortality statistics.
- Hope did not dye her hair as I am photographing the children as part of a magazine educational shoot with a pro tomorrow. However, she did buy it ready to do the next day.
All in all, a very productive day with lots more little signs that things are coming together and plans I am making are beginning to come into fruition. I need a master plan to tie them all together though. That is my next job.
Monday, July 20, 2009
- William, who has been out of nappies for three months now (a pleasant surprise to us all as we didn't know if he had control or not) had so many 'accidents' I actually lost count.
- Hope and Ellie went into town on their own to watch Harry Potter - and managed to loose each other on the way home.
- Ellie and William chanted incessantly that they wanted their birthday presents today.
- Getting up an hour later resulted in the feeling I was playing 'catch up' all day - so alarm set for 6.30 tomorrow.
- Hope has now gone to the aid of a best friend who tried to dye her hair 'chocolate' and it is now 'ginger'. Hope plans to dye her own hair tomorrow!!
Please all you pandemic planners, do not keep the schools closed in September. Swine flu has got to be better than insanity!!
This is the first school holiday that we have been together for in three years!! Ellie and William will have their birthdays together next week. William has been in hospital for all but one if his so far. I am enjoying collapsing on the sofa with the remnants of the chaos all around me and reaching for a very full glass of red wine. This is the stress that every other Mum experiences and is much better than the stress I was under this time last year when we were in hospital awaiting transfer to Birmingham for an urgent transplant assessment.
Saturday, July 18, 2009
The children and I spent today at the seaside today with a fantastic lady and her beautiful daughter, incorporating a Gifts of Life photo shoot. I checked in on Facebook and my emails while I was downloading the photos and there was some absolutely awesome news waiting for me to hear. Gabrysia is out of intensive care and recovering well from her heart transplant last week. There was an email from someone who has become a great friend and who I am really fond of with some really amazing personal news - you know who you are and YAY :) :)!!!! But the very best thing of all was that, there right on the top of my Facebook home page, was an update from the very special Jess saying that she had arrived at Harefield Hospital having been called for the double lung transplant she so desperately, desperately needs. I could not have been more pleased, excited and nervous that this was going to be THE call for Jess. This is a girl who knows the routine very well. She has been waiting for her transplant for four years now and has had seven false alarms. When I met Jess, three months ago, she had just had her last falsea alarm. She has been very unwell several times since then and has been very close to dying more than once. Jess has a lung capacity so low that the best breath out she can muster has less than the power of the fizz when you open a coke can! So, this HAD to be the call for Jess. Inbetween getting William ready for bed and sorted out, I kept checking Facebook for the latest news. I was totally gutted when, there it was, this was Jess's eighth false alarm!! The donor had deteriorated too fast so, despite being already brain dead and on the life support, no organs could be saved before the heart stopped beating. My thoughts and prayers are with this family tonight who did make that choice to save lives in their moment of tragedy and then lost even that chance to hold onto something positive in their day. My thoughts and prayers are with Jess and her family too. Jess will be the first to admit that her time is running out. She is 20 years old and it is unlikely that she could wait a further three months for another transplant call. Please join me in either praying or sending some very positive thoughts that she doesn't have to wait that long.
I made a promise to Jess today that I will work harder than ever before to make sure I do all I can to raise awareness and get her those new lungs. I know there are many others doing the same. So, I am now thinking of more ways 'Gifts of Life' more effective than ever and other things I can do to help people like Jess. I have to think quickly though, Jess doesn't have much time.
Wednesday, July 15, 2009
I was terrified about swine flu initially. I stocked up on face masks and tins of food and was ready to seal the children off from the world until it was over. Then, I chilled a bit and was not worried at all, until today. It seems William could well have been very closely exposed to it over the last few days and, once again, I feel a bit like we are haivng to keep a close watch and hope and pray he doesn't suddenly get sick and end up in hospital again. On the other hand, I could well have had swine flu myself last week and he is fine. At the very least, I had a really rotten cold and he didn't catch that so he is obviously pretty strong.
I'm not sure where I am going with this entry really. It is late night musing and venting to a large degree but I guess the main thing is we all want to be able to predict who will get swine flu, who will get very sick and who will die. The media is going crazy trying to predict these things and, in doing so, terrifying us poor parents, especially us who have more vulnerable children. It isn't helpful. I saw a poor official being grilled on BBC Breakfast this morning and he was doing his very best but he just doesn't know.
I am not going to closet William away. Life is for living and we don't know what is around the corner. We just have to make the best of the present moment. I was talking to someone today about a prayer my Grandma told me to adopt when I was a teenager. It is the serenity prayer:
'God grant me the serenity to accept the things I cannot change; courage to change the things I can and wisdom to know the difference...'
There is nothing I can do to take away the threat of swine flu so there is absolutely nothing to be gained from worrying about it and, as my Grandma would have said again 'dwelling on it'. So, instead of going to bed playing out all the possible scenarios I am going to go to bed with a good book and forget about it.
Having worked all that out for myself, I could delete this post but maybe I will leave it just in case it helps anyone else to try and stop worrying about it too.
Thursday, July 09, 2009
The more I meet donor families and also meet people who lost a loved one but didn't donate organs and wish they did, the more it becomes clear that talking about organ donation is as important, if not more so than signing the register. Your loved ones need to know your feelings about it so that your wishes can be known if they have to make such a decision.
This week, think about it, talk about it and sign up here
Monday, July 06, 2009
And Ellie hard at work with hers
Planting the Memory Rose
Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.