Well life had changed. Well when I say changed I mean totally and utterly changed. To be honest I doubt that I would recognise our old life now. Every morning and evening, and several time in between if I was worried, I was taking Billy's temperature. I was so paranoid about it, what if it was up, was he ill, what did I do? He also had to have medicines morning and night, extra ones at weekends and I had it all down to a quite good routine now.
The hospital visits became second nature to us now and Billy was becoming very used to the way things happened when we were there and becoming very used to the staff. It made things a bit more bearable, as going into see the consultant knowing that your child was going to have to have something done isn't nice. I still don't think that I am used to that even now, nearly 22 months later. Your first instinct is to protect them and not let anyone hurt them so having him upset is the worst thing in the world.
Although you know that this is the best thing for them and the only way of beating this nasty disease the mum part of you hates it. I remember holding Billys hand and covering his eyes so he wouldn't cry as much. Heartbreaking especially when they are looking at you to stop this and stop them being hurt. You could tell some things really hurt him and being on my own there was no one else I could ask to go in with him, it was all down to me.
Being on my own with Billy did have a lot of advantages through the treatment though. On the bad days when Billy was under the weather or tired we could go to bed or have a duvet day without having to worry about anyone else's feelings or do things we didn't want to in order to fit around someone else.
Billy was getting used to being back at school, I think just seeing his friends and being back to being a normal boy boosted his spirits. With the exception of the Piam Brown appointments we were quite lucky and managed to work them around school. He did give me one major scare though, not long after he started back. I had dropped Billy off and then gone to a Comet to order us a new fridge after one of the charities had given us a voucher for a new one. Now the comet store is literally a 3 mile drive from school and I'd gone straight there. Whilst I was finishing buying the fridge a had a call on the mobile, it was the school. My heart dropped, I felt sick. His TA said that Billy had said he wasn't feeling well and wanted to go home. I was out of comet like a shot and at the school. When I picked him up he looked fine, didn't have a temperature. We got in the car and me being fussy, panicky mum was asking whats wrong, are you ok? Billy just looked straight at me and said Yes Mum, I just didn't feel like school today!!
I must admit I saw the funny side to that, and took him home. It just showed he still had his sense of humour and he was still a right cheeky little boy with a massive personality! There were so many things that happened that made me realise that although certain aspects of our lives had changed we were both still the same underneath.
I have mentioned before that the diagnosis has made me look at life differently, made me realise that life is for living and that you need to make everyday worth it. We have done things that we may well not have done if Billy hadn't been diagnosed. The life was totally different, the bits we needed to take if we went out, the countless hospital visits, the many phone calls. The having to watch my child unhappy as he was having various procedures. But we have tried to be positive and I think this has made a difference in our lives.
Don't get me wrong I still have days when I want to shut the door, close the curtains and cry my eyes out, but I try and do lots with Billy, go lots of places, see lots of things. These memories make the darker days easier to cope with and give us something to focus on when things are bad. Planning things although not easy if we can gives us something to aim for.
Life is for living and we are trying to make sure we do.
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