It's good to have family and friends with you cause they support you, um… and it um… they can join in with you can talk to them if there's something wrong.
Bayly was very young when it started so basically as far as he's concerned he's had it his whole life, he was only thirteen months when he was officially diagnosed as having juvenile arthritis and it spread fairly quickly it started in his left ankle and it's now at eleven years of age so over 10 years of having it, he's got it from head to foot, he's got it in his jaw both sides, he has it in his neck, in his shoulders, his elbows, his wrists, his hip, his knees and still the ankle, I say that I should have an honorary doctors degree on my wall.
I had to learn how to walk the walk and talk the talk about all the blood tests all the medications, all the hospital visits, all the treatments, all the therapies everything I had to been informed so that I could make the best decision for what was an infant at the time and then as the years progressed and one medication failed we had to then go through it all again to try new one we had to find different ways of delivering medication when they became less effective I had to learn how to give needles I had to learn how to draw up the medication in a safe way and dispose of it safely as well.
There's some great support organisations out there but you need to take people's advise, and let them come to you and you know don't be scared of asking for help if you have to.
Rather than try to dive right in the deep end we've actually started out little bits at a time and celebrated small successes, because anything that's a step forward is a benefit, to all of us, we feel excited, he feels confident, he feels happy that he's achieved this.
Um… well to have a brother suffering from pain it sometimes puts a lot of pressure on me to try not to fight with him and again I said try.
Um… and I basically just, um… act like a normal person to not make him feel any different from how everybody else should feel.
And one thing we try to do with the kids too, is that at the end of every day we try to say, alright tell us something good that happened today instead of focusing on the bad, you know tell us something good or tell us something that made you laugh, you know especially if it's been hard I use the laughter and the humour as a tool with them as well to make them go to bed in a happy mood so that they can maybe have happy dreams and try again tomorrow.
