Sunday, May 21, 2006

It was all yellow...

OK, so usually you see a lovely cute picture of William here. This time I have put a delightful picture of 6 baby grows heavily stained in the yellow stuff that pours out of William's bottom, gastrostomy and jejenostomy. Last night was particularly spectacular and this is the result - yep, one night! and there are 7 sheets too! I took this picture in case I have to convince our water company that we have a medical need for a large water usage if the shortages get worse. I put it here because one key purpose of this blog is to show people what it is like to have a severe intestinal condition and this is a large part of it!
Poor William's bottom is stained yellow - I often sing the Coldplay song to him. It will become even more relevant when he finally goes yellow with jaundice - well, you have to find the funny side don't you! Not that it is easy to find when you have changed a child and made his bed every couple of hours all night. Luckily for me, our lovely night respite nurse, Margaret, was here last night and usually this only happens about 3 times a night.

It was very moving in church this morning. There had been a funeral on Friday for a young girl who suddenly died due to a huge epileptic fit. Her Mum is a regular member of the church and so a wonderful display of her art work and horse riding rosettes had been left at the front where it had been for her funeral. I was so moved, she was so talented. I thought this was such a lovely idea and certainly something that will go into the notebook I have in case we ever suddenly find ourself in that position. Wills has some lovely art work and photos. I have to capture every moment of his life and have a special scrap book. It will be lovely to have whatever happens as this period of our life will always be worth looking back on as we have gone through, and are still going through, so much. Still, I do have my notebook because if anything does happen I want to be able to remember all the thoughts I had to make it a really special day and I know the grief and shock would stop me being able to do so. Oh and yes, "Yellow" is down there - a bit of a joke to myself to make me smile if I am ever in the situation to need to refer to it!

1 comment:

Shadow again! said...

WOW! I'm not sure what to say to that last post, except that I now realise my nights with Ocean aren't really that bad. Poor, poor William, he must be so uncomfortable yet keeps on smiling through it all. I don't know how you cope, the night nurse must be such a help - do you actually sleep through it all when she is there though?
I'm proud to say that I have some of William's lovely artwork. I shall cherish it all the more now!
Shadow