It was fortunate that Jamie was in respite that night as we were at the hospital for over 11 hours. If he hadn't been in respite it would have been much more difficult to have stayed at the hospital all day, he would have been upset had he come home and everything wasn't as it usually is.
Jamie's respite centre isn't too far from our home, it is just in the next town and it is easy to get there if we are needed. Jamie first went there when he was five years old and he only went for tea for the first few visits. It was quite hard in the early days because I felt that I was abandoning him. When my community nurse first arranged for him to go, I wasn't very keen, especially when she mentioned that we would bulid up the visits and then move to overnight stays. I thought that would never happen. He was my baby and I knew he would be confused and that I was going to find it difficult.
I cried my eyes out on the very first night that he stayed over. It was nice to spend time with my girls, they were younger then, but when bedtime came I fell to bits. I cried to Jeff, I even asked him to go and fetch him but we didn't go and get him. I was quite selfish, looking back, I just wanted my little boy at home and to know that he was safe and happy.
When he came home the next day, he was happy to be home and I swore he would never go again but my community nurse was very supportive and she told me to be strong and to continue with the respite because I would come to need it one day. We did continue and he has been going ever since and these days, it has become invaluable to us. He gets about three days a month respite, usually Wednesdays. I have Wednesday afternoons off work, so it fits in quite well. I still miss him as much as I ever did and I always ring to make sure he is ok but I appreciate the break so much.
Sometimes, if he is unwell, they will ring us to go and get him but it isn't happening so much these days. I still don't sleep well as I miss him and I lie awake wondering if he is awake. However, it does give me a chance to relax much more than I do when he is home because he is very demanding. Jeff and I don't really have a social life anymore and we have got used to that, so I like to read a good book or visit family and catch up with everyone. Sometimes, we might go for a meal with our daughters or I might take my youngest daughter shopping, just normal things that other families might take for granted.
I really don't know what my life would have been like without Jamie but he makes me appreciate the simple things in life. In a way, we have adapted to fit in with Jamie's needs. For instance, Jamie likes it quiet and we still like the house quiet now even when he isn't there. He hates busy shops and although I used to love shopping, I find it a chore now. Like Jamie, we would rather go for a nice country walk on a Saturday than visit a shopping centre. So, respite just gives us a chance to recharge our batteries.
He has never been in for more than one night but I am assured the service will be there, should I ever need it. It is a wonderful resource to have and I feel really sorry for people who live in areas where they have no means of respite. I feel sorry for single parents, in particular, as I think they need respite more than anyone else.
I meet every Tuesday with a group of parents that I have known since Jamie was diagnosed. We support each other and listen to each others problems, someone usually has an answer and anyone new is always welcome. Groups like this are important and you can help someone else as well as be supported yourself. It is through this group that I have learnt about the problems that single parents encounter, they always seem to need more respite and support but find it difficult to get the help they need and it can be very sad at times.
It would be wonderful if more respite centres were built as people would cope much longer if they had regular breaks. The sad fact, however, is that even Jamie's respite centre is not open all week anymore, due to funding and staff problems, and this is such a shame .
Jamie loves the respite centre now and it is a home from home for him. He knows what to expect when he goes there and the staff seem very fond of him. They always let me know how he has been and how he has slept as they know I worry about him far too much. He doesn't go on weekends as that is family time but maybe one day he will, but I am happy with the service we have at the moment. He goes there until he is 19 and it will be a shame when he has to move on but we will cross that bridge when we come to it.
Anyway, my daughter Tamara was diagnosed with kidney problems after months of not knowing what was wrong, so it was thanks to respite that I had the time to sit in the hospital and finally talk to doctors without having to rush off. I know we are very lucky to have the service, I hope there are no more cuts as I would hate to be without it. It is a godsend.