I’m a bad man. I know this because several people told me I was on Saturday. I could protest, I could point to mitigating circumstances but the truth is that I have to plead guilty as charged. My son, Arun turned four on Saturday. We had arranged a very small gathering of some friends and neighbours to celebrate this in the afternoon. However, my wife and I had not communicated particularly well and she had scheduled the party to start at 3 o’clock. The problem is that the England vs Wales rugby match was starting an hour later at 4 o’clock.
I agonised over what I should do for several seconds. I knew in my heart of hearts that there was only one option available to me. I went to watch the rugby in the pub (Come on! There is no way you can watch a game with a kiddies birthday party going on in the next room!)
Some people were surprised at my early departure from Arun’s big day. Others that knew me better understood that there was a certain inevitability about it. However, it isn’t that I love rugby (or beer for that matter) more than my disabled son. I felt I could safely go for my traditional beer with my Welsh neighbour knowing that I had done my bit for Arun over the previous year.
Arun is a marvel. His determination and spirit are inspiring to me. Over the last year he has hit numerous highs: he is walking and he is talking, he is holding and using small objects and he is demonstrating a commendable curiosity about the world around him. If I look back over the last year, he has achieved more than we had hoped for and we are able to look forward to the coming year with genuine optimism. He is unrecognisable from the tiny, grey, 600 gram baby that arrived into the world too early four years ago.
However, he still has a long way to go: he still cannot walk any meaningful distance without stumbling, he cannot get up again by himself should he fall, he has no awareness of danger, he still can’t feed, clothe or bathe himself and the latest news is that we have a diagnosis of autism from a Great Ormond Street clinic. We have our work cut out.
When I reflect on the progress that Arun has made and the benefit he has gained by having a parent at home with him full time every day of his life (Clare for the first three years, me for the last year) I feel proud of what we have achieved. This is the most demanding, rewarding and important job I have ever done.
However, none of this matters. This afternoon I saw Nick and Cath, my neighbours who live opposite. The first thing that Cath said to me was, “I heard that you left your son’s birthday party early to go and watch the rugby in the pub.” What can I say? Guilty.
