I haven't been very good at all about posting lately, in fact its been over 2 months since I last posted. Life has been pretty busy for us, Billy has actually been really well over the last couple of months so we have been able to do a lot more. This has been great but it also means Billy has been a lot more tired and wanting a lot more cuddles than before.
He is also far more aware than we was as to what having Leukaemia means. He is now aware that some people die from it. This has been a very hard time as he is struggling to understand how or why he got it and why he is having to have such a long amount of treatment to make him better. This has upset me a lot, having to try to explain to your child things that you really wish that you never had to explain is so hard.
Its very hard especially trying to word it in such a way that its not scary for him but yet to help him realise how important all the treatment is and how he has to realise and accept that there are a lot of things that other children do that he can't. For example the school had baby chicks that the kids watch hatch and watched grow. All the other children could handle them but poor Billy couldn't. The school were brilliant and made sure there was no way that Billy could pick up any kind of germs or bugs from them and at least he could see them from a distance.
I am also a bit hurt by the attitude of others around us. There are a gaggle of mums at the school who seem to be under the impression that because Billy's hair has grown back and because he is not on intensive treatment then he is better and should not be treated any different to other children. If only people understood. Its so hard as Billy still wakes a lot at night, even when he is not on the steroids. The steroids effect his behaviour so so much, for at least 10 days a month he is really hard work, he has no comprehension of things and gets so so upset.
I would love to be able to educate others on exactly what having a child with Leukaemia entails. What all the different drugs mean and what they do and how they effect life. What different bugs can do and how horrible it is to see your child ill. It is something that I am seriously considering how to go about. To have other people understand would make life a lot easier.
I think people think that because I am not working the hours I worked before Billy was ill then it must mean my life is easy. I would give anything to make it that my son was better, being a full time carer and working is hard going. I am so so so proud of my son for the courage, tolerance and strength that he shows on a daily basis and he is my inspiration and my reason for smiling even when things seem bad.
