As I write today we are nearing the end of a short break in Perthshire. Andy is at respite and has been on my mind on and off. The normal guilt around going away has been dulled somewhat by sheer tiredness and Jen and I have been spelling each other to allow plenty of additional naps.
I had just awoke after another short afternoon snooze and as I made a cuppa I felt a little disoriented. I am a little ashamed to say I was experiencing mixed feelings about coming to the end of our break. Tomorrow life would return to normal and normal has been hard of recent much as I miss my precious boy.
As the lodge was quiet I took my cup of tea through to the television – a novelty to be honest. Today’s day time offering featured Aled Jones hosting a show about a family who had four beautiful girls, one of whom had quite severe disabilities. The other girls and mum were clearly very devoted to their family and specifically their sisters needs. The young woman with the disability had the most beautiful smile and was so clearly happy and secure despite the challenges she faced. As I sipped my tea I realised that the program was actually about a philanthropist who wanted to help the family. Mum explained that her daughter had really benefited from having a loan of a day chair that could be moved and allowed her to relax with her sisters in front on their television or to participate in social occasions. The cost of this essential piece of furniture? Less than £2000 and happily the good soul purchased it for the family. It never helped my conflicted emotions about living with disability though. It felt bittersweet. The family and young woman in particular were clearly delighted but why were these inspiring people having to rely on charity for such an essential piece of equipment? How much would the type of care being provided cost a health authority ? Why was there no state provision for equipment that allowed this young woman a basic human right to ordinary family life?
These feelings drive me to want to keep challenging. As carers we accept life is different in many ways. The desire to ensure the powers that be keep their end of the bargain will always be a struggle. These thoughts I realise have strengthened my resolve and I can’t wait to see my precious boy tomorrow.