Tuesday, September 30, 2008
It is especially hard for Hope who was due to have a French exchange student to stay next week. Once again, plans have been shelved.
Sunday, September 28, 2008
Saturday, September 27, 2008
Indian Summer Splash
'Up on The Roof'
South Bank Beat
Friday, September 26, 2008
Thursday, September 25, 2008
While I have your attention, please read on and support Holly. It will be fantastic for Holly and for William and everyone else waiting for a transplant if she wins a slot on the programme. I have lifted this straight of Emily's blog - hope you don't mind Em.
Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme. To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc. http://battlefront.co.uk/campaign/the-gift-of-life/ Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4. Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...
Wednesday, September 24, 2008
I have had a little play with my new toy, you can see the first results on the other blog. It is a start, there is a lot to learn. I have always enjoyed playing with photography and still have black and white prints of school folders covered in tippex written band names and logos from my attempts to capture my 'Goth' years during the lat 1980s. I love photographic images. I always want to know more and can stand in front of a picture for ages inventing the stories that go with it. I think photography and writing complement each other very well and these will be the main media I will be experimenting with. I had some succes with my writing today. I had an assignment back from my tutor telling me that it was excellent work, that I am improving and developing and I am now ready to begin submitting work for publication.
William is still well, although he managed to fall badly and get a very nasty cut on his chin yesterday. Luckily, we are pretty skilled at using steri-strips as we use them to secure his Hickman Line. His chin didn't bleed much but we did realise at bedtime that it was rather gaping. We did wonder if we should take him for stitches but agreed it was not bleeding and it would be so traumatic for William that it would be better for him to have a wider scar. Paul did a very good job of mending him. The girls are also on good form. We have Hope's French exchange student here in a week and a half. It is important to me that we all carry on as usual and Hope and Ellie don't miss out on things but I do wonder what on earth we'll do if we are called for transplant or have to rush William into hospital. We will have contingencies but it would certainly make for an experience for the poor girl to be woken in the middle of the night and bundled off to a friend's with the girls!
Tuesday, September 23, 2008
Whilst taking a break, I have started my creative experimentation on my new, companion blog 'My Journey With William: An Exploration' Please do take a look and share it with anyone else who you think could be interested or offer some interesting comments and criticisms. You never know what you may find there. I am experimenting with photography, writing - fiction and non fiction and all kinds of genres, drawing... Over time, you will find all of these things there. The blog is my virtual sketchbook, a dynamic sketchbook that people can interact with. Of course, I also have my paper notebooks and sketchbooks - many of them. I have always dabbled with stuff but the 'Transplant' project has inspired me to try and make something of it all.
I want to do it all at a much higher level too, hence doing little courses in writing and theology and working through 'learn to draw' books. I am thinking of adding in a distance learning photographt course. You can find all sorts of good value courses, many subsidised for people in our situation. Paul and the girls role their eyes when I come up with the next idea and it must all seem very 'bitty' to them. It isn't though. I am gathering skills that, I hope, will lead me into pastures new in our new post-transplant life. I am doing exactly what these kind of courses are for, developing myself for the future. William won't be so dependent on me then and I need to create something out of our experiences that I can develop. I want to write, non-fiction and fiction, I want to develop a Christian ministry based on what we have been through, I want to create art. All these things are nothing more than exploration at the moment. One or more may take off or they may all take off in a complimentary way. Nothing may take off at all but I will have had a lot of fun and learned a lot about myself in experimenting.
Monday, September 22, 2008
Having had my hair chopped, I caught up a bit with Brompton Fountain work and sent a submission off for the writing course I am chugging along with. I am still on the non-fiction bit and am doing and submitting bits and bobs anyway so being very slow with the assignments. I am looking forward to getting to the fiction part but am only too aware that freelance features and articles will be the bread and butter work as I try and build something that could resemble a career in writing.
Last night, I watched the 'Transplant' DVD that accompanies the installation. This has a lot more on it than selected for the installation itself. I am now reading through the book and managed to some time today to reflect on this and think about some creative work I could do in response to it. I take loads of photos and never leave the house without my camera. I know I could use this medium to record our life in a different way to the obvious snapshots I take. I also want to write in different ways than the straight forward diary writing that I use in this blog. I am going to experiment and am going to share the results in another blog, a companion to this one. This way, I hope that people will look and read and offer criticisms and comments that will help me shape my work. So, watch this space...for a shiny new blog linked to this one. I hope to have something up as a starting point on Wednesday.
A little note - My laptop died last week and my saved emails and addresses with it. If you haven't heard from me for a while, could you please email me so I have your address again.
Tuesday, September 16, 2008
The experiences portrayed in the work were very interesting to me. With William being so young there is a lot he can't put into words and probably doesn't even think and feel. There was a theme of having to adjust psychologically to the new organs and learn to accept them as part of you, if you ever do! From my limited experience so far, children don't seem to question in this way - they just have their 'new tummy' and get on with it. I wonder if there comes a point later in life when they question and this psychological acceptance becomes an issue? I can relate to the simultaneous sensory deprivation and overload - I'm sure anyone who has lived in a hospital for any length of time can do so.
The installation was very simple and very complex all at the same time. It was accompanied by a book of essays written by the artists, patients and a psychologist who works with the patients to help them adapt to their transplants. The book also contains a DVD of all the photos, together with the sound recordings. I plan to spend some time looking at it all again and reading the book over the next week or so. I am sure this work will be the subject of more blog entries as I explore it further. There is a fascinating month by month account of the development of the project over the year of residency (http://www.thetransplantlog.com/ )
Hope and I went onto the Tate Modern after visiting the installation. We came home with a bright green 'The Bigger Picture' eco bag full of pencils (and a rubber), sketch books and a couple of books on creativity and techniques. We also came home with a huge amount of inspiration. I write about it avidly, on here and in diaries and journals. I am now exploring other ways to record my experiences and emotions using photography (in a more artistic way, as well as the kind of photos I take and put on here), drawing, painting and writing and putting it all together in a more 'multi media' kind of journal. I am not the best skilled at art but I have always been creative. I have long felt a real need to create something out of this and feel this even more after experiencing this piece of art at the weekend.
Monday, September 15, 2008
William started school today! My little baby now at school. When the girls started I felt really old. Today, to be honest, the main thing I am feeling is how much I am looking forward to my day times and being able to get on with my work and my theology and vocation course without feeling guilty that I am not giving William enough attention. It will be lovely to have time to give every different ball that I am juggling some decent quality time. Daytime for work, after school for the children and evenings to finish work and relax - weekend as family times! I suppose I could also have felt relief that William has made school age as there have been people who didn't think he would. I don't feel this as, apart from some very scary line infections, I have never doubted that he would still be here. Indeed, now I feel more hope that he will be here a whole lot longer with the transplant.
William loved his morning at school. We were picked up by 'T' who will be his personal taxi driver! William was a bit overwhelmed by the prospect of school so comforted himself a bit with 'blankie' on the way but it had to go in the bag when he got there. In the classroom, William enjoyed drawing 'a boy sleeping on the moon' on the table (paper was stuck all over it). The teacher asked him what a little bit was with two circles aligning each other - William considered for a while and then declared it was his bottom! We had to agree, it looked like one. William read a whole book to the teacher and I. She was so impressed she said he will join a mixed age primary school reading group as he is so advance for his age with reading. William wants to read and is easy to teach. With all he goes through, books are a valuable source of entertainment and distraction for him. After reading, he made up a story of his own about a fire engine who got stuck in the sand. It was then outside playtime. They have a lovely play area. William picked a tomato to smell at snack time afterwards. We then sang songs and William did the weather board. William found one of his favourite library books in the classroom 'honey biscuits' a lovely story about a child making honey biscuits with her grandma and where all the ingredients come from. He shared it with his teacher so you can guess what he convinced her to do with him tomorrow! There was just time for some playdough and starting a maths game before we had to see the nurse to show her William's lines, illeostomy and gastro-jejenal tube. Our gastro nurse specialist is at the school this afternoon to teach them all about line safety, his pump and TPN etc. We have had to adjust his times so William is on TPN all day at school to make things a bit safer than flushing him off there. It was then home time.
William did so well on his first day that he will be going in full time from Thursday. I am in with him this week before our lovely Sue takes over next week. William's current school is a special needs school because he is pretty high need with all he comes with right now. After his transplant we will sit down and discuss whether he will remain there or go to mainstream school with Sue. Talking of 'transplant' the art installation was very interesting. I will talk about that tomorrow.
Sunday, September 14, 2008
Friday, September 12, 2008
I have had one of the most trying days of my recent life and I was all set to blog about how Wills and I travelled into London for his vaccination, except it was only ordered this morning and wasn't in stock, and neither was the alternative, and then I locked myself out in the afternoon school run so I and William's nurse and Sue, his one to one, who were here for a meeting with me about school next week were locked out and had to meet in the park (at least it was sunny).... I would have been bloggin about a frustrating and traumatic day for Wills and I but, instead, I have some happy pictures of 'Prince William who lives in a bouncy castle' to share with you.
I had an email a few days ago from Viks at postpals to say they may be able to get some 'bouncy tiggers' and would we like one. My sensible head told me we have no space but Paul and my spontaneous side knew Wills would love one. He rarely gets the chance to bounce at fetes and parties etc because he is usually on his TPN and it is too risky to be bouncing with other children. Now he is on TPN until 4.30pm it is even less likely he will get the chance to play on bouncy castles while we are out and when he is in isolation after his transplant he certainly won't be able to play with lots of other children for a while. He does have a lot of fun on them so we said yes please. Yesterday, I got a mail saying it was waiting for us at our local Woolworths. We went to pick it up after our trip to the hospital. We had half an hour home before getting Ellie from school when I set about trying to blow it up with my bike track pump - after half an hour it still looked like I hadn't even started! Luckily, the toy shop at the end of the road still had some electric pumps (everyone else only stocks them in the summer) and Paul blew it up with that while I was still talking about William's medical needs in school - after Paul had returned home, early thankfully, with a key to let us all in! William was on it before Paul had even finished and soon delcared he was 'King William and he lives in his bouncy castle' (what ever the bouncy item - it always seems to be a bouncy castle to children - this is a bouncy castle that looks like a tiger apparently!). Well, Prince William played in his castle all the time until we managed to drag him out and to bed. He was able to bounce and fall and then relax and rest when he needed to. It is fantastic. Thank-you SO much Post Pals - William has a huge smile today!! It does take up the whole living room, and that is without it's tonge and mouth - a mini slide into a paddling/ball pool! We will save those features for another day. Paul and I are relaxing around it this evening as it is up for the weekend. We will put it up for the day whenever Wills feels like being 'Prince William' or having a bouncy day, or whenever he needs a bit of extra fun.
William also had a lovely Thomas activity book and an ocean colouring book and stickers from HT and, rather appropriately, someone also known as Tigger! He got on with looking at them and doing some colouring while he was relaxing in his castle. Thank-you!! What would have been a traumatic and frustrating day for William turned out to be a real play day!
I have blogged about Postpals before and how fantastic it is. I have added it as a link from my blog now (as I am getting clever and can do this kind of thing all by myself!). Please do have a look and help post smiles on faces like William's, and Seren and Dylan's - see Rebecca's blog 'Life as Mum to 2 Children with Cystic Fibrosis' in my 'blogs I read' section - see, I really am getting clever!
Meanwhile, Ellie and I made museili bars and Hope made pizza (from scratch, all by herself - and made a decent job of tidying up and cleaning afterwards!) in readiness for tomorrow's Parish Show. Prince William was too busy in his castle to make his chocolate chip muffins but will do them in the morning when I also need to do some flower arranging. It is so nice to be home joining in with the show tomorrow. Wills is not all that well and we acknowledged at the hospital today that we are probably living on borrowed time right now before he gets his next line infection. Let's hope that borrowed time lasts a few more weeks!
Thursday, September 11, 2008
There has been a lot in the news lately about carers struggling to look after their own health. I have found this to be very true for me. Those who have known me for a while will know that I have my own health issues, namely diabetes and brittle asthma. It is very tricky fitting in appointments for me and they often get cancelled because we are back in hospital again. I had cancelled my diabetes checks loads of times and, when I eventually got to go for my annual blood tests, I had to cancel the follow up. I haven't been able to fit in hospital appointments so am managed by my GP these days. We have a few 'traditional' receptionists at our doctors, you know, the ones who seem to think their job is to protect the doctors from their patients! The last time I spoke to one I was told that I could not have any more mediations until I had seen the doctor. This attitude was maintained even when I explained that I was stuck in hospital and about to go to Birmingham and could not get to the doctor!!! I got one last prescription by stating clearly that I was on life saving medication and was being told I could not have it! Yesterday, I finally had the chance to get to the doctor when Wills was with his nurse. The good news is I have perfect blood sugar and a perfect BMI (although a less than perfect height - I was sure I was 5'3"but I am, in fact, only just 5'2 when standing very straight and tall!). My diabetes is OK too. I knew I was huffing and puffing a bit lately and the idea of running anywhere seems a very distant memory. So, I wasn't too surprised to know my asthma is a little ropey. My peak flow (a measure of measuring asthma) was very wimpy. The first is always rubbish but I couldn't blow the dial much further on than 150 on any other attempt either - and I blew my absolute hardest! I think 160 was my best. I can blow 270 on a very good day so that wasn't the best news but did explain a lot. I am now on extra steroids, more oxygen at night and a new inhaler on top of my usual 2 and 'theophyline' tablets. I am glad I went now. A bit of self TLC is needed for a while. (note to Mum - I am fine, no need to worry at all, I just need to remember I have this condition for a while!).
So, with my health sorted out, today I set to sort out my life a bit. William starts school on Monday. I have to go with him for the first week but, after that he will have a one-to-one at school (our lovely Sue, who has been working with William for a while now and is virtually family!). So, when he is well and at school, I will have school hours to myself. I have my job at The Brompton Fountain (I will come back to that) but it is only part-time and not enough to guarantee my future solvency on its own. I am doing my theology and vocation course and am always working hard to develop my career as a writer. That is all plenty to be getting on with but it is all done alone from home so a bit isolating. I decided today to do a course once a week to get out of the house and meet some new people. With most of the courses starting in the next week or so, I have left it rather late and there wasn't much left. I was torn between an arty, crafty course just for fun or a writing one. I decided to do some writing as I really have a lot to do right now and it isn't the time to add in a new hobby, fun though it would have been. A freelance journalism course was all I could find to fit the school day and William's regular hospital appointments. I wanted a creative writing course but this will be good and may help me make some more money from my writing to keep me going while I write that 'best seller!'. The course is the middle of London at Covent Garden, from 10.30-12.30 so I will even have time to 'do lunch' and/or visit a gallery or museum before rushing home for the children. I am going to cherish that day each week.
Work at The Brompton Fountain is going well. We have been struggling in the current economic climate and I have been worried about our future. I thought hard and prayed about it all. Almost immediately, I had some offers of help with writing grant applications and some fantastic fundraising news. One girl raised two thousand pounds at Sunday's Women's 5K at Hyde Park and there are several others who are still counting up their sponsor money. I was also contacted by a wonderful runner who wants to work with us and raise money running marathons next year. He wants to see what we are doing and how the money will be spent. I am so chuffed about that. I can't relax and have to keep working hard at the fundraising but I am more confident we can ride the current economic storm. We had a training session for our up and coming sibling day yesterday and several of the hospital staff are getting involved with us though that. Things are looking good.
Wow, I have blogged all this with no mention of Wills and how he is doing. He is doing OK. We bought a Thomas lunch box today for him to take some food to school to smell at lunch time. He was very chuffed with that. He has another vaccination tomorrow, which he will be less chuffed with. He has a lot of extras now he is on the transplant list.
The girls are OK too. All is settling down again.
Monday, September 08, 2008
Friday, September 05, 2008
I made a list of all the things I miss in hospital. The girls were top of course and next came; freedom away from asking permission to leave a locked ward, singing out loud, playing loud music, my bed and all my 'stuff'. I have been enjoying all of that over the last couple of days. It does feel a bit strange going about normal things like school runs and shopping with the phone safely in my pocket, knowing we could be called at any time. We are getting on with things but hoping to get that call soon as we can see that William seems to pick up less and less after these infections. He is fine but he seems to stay a little more lethargic and pale each time. It does seem harder for him to beat the bugs too as we are in hospital longer each time.
I am getting used to the transplant now and 'white nights' are less of a problem at home. However, a new problem for me seems to be waking several times in the early hours. I think it is similar to how you sleep lightly and wake a lot when you know you have to get up really early. Subconsciously, your mind stops you from sleeping too deeply so you hear the alarm. I think my mind is stopping me sleep too deeply to make sure I hear the phone should it ring. In hospital, I knew a nurse would come and shake me if necessary. I'm sure it will pass and, anyway, we were assured we would be roused if we had the call. I think they send the police round if all else fails! With my moblie and home phone on my bedside table, I'm sure that wouldn't be necessary!