Today was a special day. I watched my son’s ten year old classmate – the son of my good friend Hazel – walking into school for the first time, after years in a wheelchair and thousands of pounds spent on physiotherapy. He was holding his mum’s hand and beaming with pride. Hazel’s son Oscar, like my J, has a physical and intellectual learning disability and there is a special relationship between us mums who know only too well the meaning of that ‘one small step’, which means nothing for mankind, but means the world to us and our children. It means that all the weeks, months and years that we’ve spent trying – and praying, and trying again until we are shattered - have finally paid off. That one small step will keep us nourished mentally and will give us the renewed energy to keep on going for another year.
Finding out that my son was so severely disabled was without a doubt the most difficult challenge I’ve ever had to face. The progress is so slow and the rewards are so few. Imagine having a goal – losing weight for instance – which requires you to cut out all your favourite foods and run five miles every day. But every day when you get on the scales you are the same weight you were last week and the week before and the week before that. You can NEVER give up, stop running, lay down on the sofa and eat chocolate. You must keep on going day after day, week after week, month after month, even though there is little hope to give you the motivation you need. One day, you get on the scales and you’ve lost a pound. You are so happy, even though you know that this will probably be all you will lose for another few weeks, months or even years.
This is what it’s like being parents of learning disabled children. Hope is crushed on a daily basis by the reality of our children’s limitations. But we will never stop trying to help them learn, walk, talk or achieve their potential, whatever that might be. I could be sentimental and tell you that our children’s smiling faces are all we need to keep us going. On a good day, we feel that way. Of course we do. We love them and we wouldn’t be without them for the world. But any parent of a kid with special needs will tell you that more often we feel crushed by the weight of the responsibility, the exhaustion of the sleepless nights, the stress of the behaviour problems and the relentlessness of the constant supervision that’s required.
My J has taught me so much, though. I’ve learned the value of those small steps, and the meaning of the words ‘charity begins at home’. When I qualified as a lawyer I had such high aspirations. I wanted to change the world. I wanted to travel to socially deprived or poverty-stricken countries for Oxfam or for Amnesty International, to work on big miscarriages of justice cases, or or to help the thousands of women who are the victims of regimes of inequality. But life got in the way. Having a disabled child has meant that I can no longer travel or sometimes even leave the house very easily. But I’ve learned the value of loving my neighbour, of donating to a project to help a child walk or a friend’s dog beat cancer, or of taking the time to talk to someone who’s lonely or who’s suffering mental distress (however challenging that might be) and trying to ease their pain.
I love people and I love writing about them – and that’s one thing I can do from home. I may not be able to save an innocent person from death or help the starving millions, but it makes me really happy when readers contact me to say that that my novel has resonated with them and has inspired them or made them feel less alone.
I’ve learned that there’s more than one way to leave your mark on the world. You may not get your name in the history books, but you’ll leave your footprint on someone’s heart.
Photo: J walking down the road with the help of his little brother
Hazel’s physio fundraising page for Oscar: http://www.justgiving.com/SCOTTTOWERS