Tuesday, 27 March 2012

Life goes on

When I last blogged it was about the emotional turmoil caused by discovering that Max's condition is much rarer than we had previously realised. The gut wrenching moment when the reality that your child's condition is very real, very rare and very significant hits you again. Of course this is not the first time that we have had to process unpalatable information about Max, but each time it feels just for a few days like you have taken a huge step backwards.
I think it's probably made worse in that a lot of the time we live in a bubble. We just get on with dealing with the here and now and don't allow ourselves to dwell on what the future holds or the true reality of our situation. It's our coping mechanism and most of the time it works quite well but it does mean that when reality does slap you in the face, it still feels as shocking and as raw as it did in the early days.
 Fortunately I seem to be have gained an ability to process things and bounce back pretty quickly. Being able to write about my feelings in the form of this blog helps and over the years I have learnt not to dwell on negative thoughts and to try and see the positives even when they sometimes seem hard to find. I am lucky that Richard and I are able to express our feelings openly with each other and we are in the fortunate position that it rarely causes disharmony. One thing that I do feel is useful is if we both receive information about Max at the same time. Obviously this is not always possible and can be very time consuming and impractical, but if at all possible attending conferences and important appointments together means we both hear the same information and are therefore able to then process and discuss it.
 So life goes on and we both seemed to have recovered our joie de vivre, put our heads firmly back in the sand and got on with caring for Max, planning for Disability Rocks and the many other jobs that occupy our time.
 Richard was recently appointed as Regional Parent Rep for the Yorkshire and the Humber region on the National Parents Forum. He attended his first meeting in London and felt privileged to be able to contribute to a Forum that influences National Policy in relationship to Disabled Children and their families.
 Max's behaviour has been much better I think mainly due to the warm evenings and him being able to play outside when he gets home from school. This is a bonus we never take for granted, the tangible relief felt at the end of a day when Max has only had minor outbursts is amazing.Every day is a bonus when things are good.
The card Max wrote for me at school was the icing on the cake! 

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