Peter Pan

Craig and I were having a conversation yesterday which always crops up now and again. We spoke of what Kian may have been doing at his age without his disability. 3 year olds are doing quite a bit and are very inquisitive. Kian is very inquisitive in his own right. I remember a therapist saying to us a long time ago that for "everyday parents" the development of their child is like a train going by quite fast, you dont see every single window on that train. But for us what we experience is that we see every single window on that train. Each element of Kian's development is a massive step and we get to experience that and enjoy it. We know that the money we put in Kian's bank account each month will not be going to pay for driving lessons or for university. People may say you never know, but I do know that those are two things that Kian's money wont be used on. The gap of development delay does widen but the thing that keeps you going and keep striving for more is that Kian continues to develope. He is definitely a tryer. There is not enough medical interest in Wolf Hirschhorn Syndrom to make a difference at this time, this is my opinion, but I am grateful for all of the families that I have met with children of the syndrome. Without them my knowledge would be little. At the end of our conversation yesterday, Craig said Kian would be our Peter Pan, he would be young forever and I think he probably will be!

It is our 4th easter with Kian, how time flies. Next september he will be at school full time, that is scary. I remember not long after diagnosis some people asking if Kian would even go to school. There is alot for people to know and learn about disability.
On saturday we visited Kian's great aunt and uncle up at a caravan park. He loved it there and I have to say I love the atmosphere that you get from that environment. Over the last two years we have taken Kian to different sites and we have all really enjoyed them. It would be nice to have somewhere of our own to go to where Kian could feel comfortable and where other children would become familiar with Kian and his needs. Craig says we will buy one when he gets his pension from the army but we may have to work on him before then.
On sunday Kian's grandad took him for one of his famous walks whilst I made dinner. I quite enjoy making dinner on special occassions. Dave's special walks means it is sometimes best not knowing everything that actually happened on that walk, I say that in the nicest way. Kian did come back with a new dummy, a bag of candy floss, and plenty colour in Kian's cheeks. We then had a lovely dinner, I may be biased with some great company.
Two of our neighbours called to give Kian an easter treat. Some children were playing outside so we took Kian outside to watch, he got really excited watching them. One of the boys said, when Kian is older he can come and play cant he? Bless him, Im not sure what the future will hold, but I know we chose the right street to buy our house. It is not a big house, but I love it and the street is right for Kian, I know that.