We are away for a short break this week at Crieff. This is the trip where Andy has his own holiday at his fabulous respite house. The care is wonderful and due to a cancellation he has the house to himself as well as two staff. He has their undivided attention, their vehicle, sensory room, gardens, play equipment. He will be looked after by different staff all of whom he knows and who know him. Actually they pretty much love him. I have plenty of experience through my day job of respite units and we are fortunate enough to have an establishment of the highest standards. I am eternally grateful to both our local authority and Sense Scotland for this. But still we suffer from guilt. But still we worry. Such are the emotional trials of parents of children with disabilities.
Jen and I were enjoying a ramble in the wonderful Perth countryside this afternoon while David and Helen enjoyed their activities at the Hydro. The autumn weather was perfect, the scenery beautiful. It was a very rare chance to relax and walk and talk with my wife. After a short while our conversation (predictably) turned to our precious boy. It turns out we had both been thinking about him. He had been a wee bit tearful at the respite house yesterday for a while but it passed. We had found this out in a call to the respite house for an update. Privately we both had experienced the same thoughts. It’s almost too painful to talk or think about but I want it out there. Was our precious boy upset because he was not on holiday with his mum and dad? Was he wondering why he was not with us? This thought is like an emotional electric shock. It comes out of nowhere and hurts like hell. Today we had the luxury of talking to each other about it. We acknowledged it, explored it together and comforted each other.
Here’s what we came up with. Firstly we both recognised that Andy does really like his respite and as I said earlier the care is of the highest standards. Secondly our other two children deserve a chance to have a break and holiday that allows them to have experiences that are not dominated by their brother’s care needs. Finally we need to recharge in order to continue to meet Andy’s support needs on a 24/7 basis. Our discussion led us to these logical conclusions and helped us feel better. As the parents of a child with disability however our hearts are constantly broken.