“In the deep, dark recesses of the mind, a disease known as fear feasts upon the souls of those who cannot overcome its power…”
I stayed up late (which these days is after ten thirty) last week and found myself watching a documentary. It followed the stories of several families whose disabled children were growing up. It made for terrifying viewing, not because the children were suffering but because it laid bare the deepest and darkest fear of any parent of a disabled child – “what happens to my baby when I am gone?”
Arun is four now. He is a happy, cute and smiley child. He is beginning to make sense of the world around him in his own way and he makes us very proud as he does it. At the moment he has a fit, able and switched on Mum and Dad to help him with every single step into the big wide world. However, what does the picture look like in twenty years time?
We have the highest of hopes for Arun and, like most parents, we are investing everything we can in making sure that he and his sister get the best possible start in life. We hope for the best but we must plan for the worst. In the future, we must face up to the fact that his Mum and Dad will no longer be able to cater for all of his needs. Arun will have changed: he will be bigger, he will want to have his own life and independence. However, he will always remain vulnerable. We, on the other hand will be older, frailer and less able to help him. There will come a point when we are no longer around.
How will Arun get the additional help and support that he will need? As a parent, none of the scenarios are very appealing. State care for disabled people is dwindling even today and may well be non-existent in twenty years time; the money we hope to put aside for him will almost certainly not be enough and we don’t want to unfairly burden his sister as his lifetime carer – she deserves the chance to live her own life.
I have found no easy answers and the documentary I watched could offer no hard ones either. When people ask me what keeps me up at night, rest assured it isn’t Leicester City’s appalling form. The only thing we can do is to make sure we work with Arun every single day to give him every opportunity in the future.