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Beginning to Feel Settled

Posted Mar 03 2009 4:27pm

Still pink and happy!

Having fun with Hope - even letting her play engines

Making Thomas cakes

That smile again - meal times are such fun (even if you are not really eating just yet)

A walk in the railway park at the back of our house - we will be able to venture further soon

Hope and Ellie encouraging Wills to lick his fingers after he has dipped them in his yogurt - he did it a few times too!

Having fun building Thomas
It has been another busy and happy weekend. We have been home two weeks today - that is the longest Wills has been home for over a year. We used to get nervous after a couple of days of him being well as it never lasted more than that. Then, we would watch him slowly decline until he was too poorly to be at home, that was as long as he hadn't had a septic shock incident that caused us to dial 999 before then! I haven't quite got that out of my system and keep waiting to find him unwell. I know we will have some worries over the next few years but, right now I am celebrating the fact he has been full of beans for longer than he has ever been in his life. It is hard to relax and remember that there is no reason why he should suddenly get so very unwell so suddenly as he did with all the line infections and I find myself rushing in with the thermometer whenever the poor boy pauses a little too long or looks more tired than usual. I am beginning to feel more settled.
We are certainly getting into routine with the new medical regime and weekly schedules. William has the wonderful Sue, his school one to one health care assistant, during week days but I am only allowed to go out if I am in easy reach of home. So, for most of the time, Addiscombe is my world for the next three months. Well, we have a lovely coffee shop/cafe, a library, three parks, a supermarket, butcher, grocery shop, hairdresser and other local shops in a parade (sadly now minus Woolies - where do you go for that new CD/DVD or birthday pressie for a school friend these days???). I am getting back into my work and writing routine. I do miss other people. It is SO hard not going to church. I miss it so much, especially over Lent. I am hoping to meet up with some friends over the next week - for lunch in that cafe. Paul is around a bit more over the enxt few weeks so I will even get the chance to get into London with my camera to take some shots for my course, to attend some Brompton Fountain meetings and go to some galleries.
Emotionally, the enormity of the last few years has hit home quite hard now I can relax a bit. It was never safe to really get upset over things because, once you start how do you stop? Now, I find I sob at the smallest things. I feel really quite uncomfortable when I think of TPN and all we did and all William had to go through. I know we will have our ups and downs now but at least we have more ups than downs. I feel some guilt about those we have left behind on our journey. For those who never got that call in time, for those we have shared time in hospital with and who lost their fight, for David who shared something of William's journey and had a very special bond with him but lost his battle with cancer so suddenly... so many people. They will always be part of us and close to our hearts. On a happier note, there are also a lot of people who have helped us along on our journey. Many of whom were strangers of new friends at the start and have become close friends now. I am currently enjoying writing lots of letters and cards to those who were there with us, holding our hands, cheering us up and keeping us going. See, there I go again, getting all emotional and reflective... Well, it has been a crazy time and we are getting far away from the intensity now to be able to think about what we have been through and how it will shape our future.
I know I have to use this and I am spending Lent thinking and praying about what I should be doing now. More about that later in the week. I have waffled on long enough and medicines need doing now. Enjoy the photos...

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