If I could undo Ben’s disability I would. I don’t have any time for the idea that it is part of some plan, or that Special People have Special Children, or that this is the way Ben was meant to be. Ben was a healthy, fully able baby in my womb, then his brain was damaged and now he is disabled. When he is older he can tell me what he thinks, but in my view it would be better if he wasn’t disabled. There is almost nothing that has followed from his birth I wouldn’t give back in order for him to be able to walk and talk. Of course this becomes more and more theoretical as he gets older, and we can’t imagine him any other way.
Ben is disabled, and he can’t walk and talk. But Ben is happy and healthy so we must get on with it.
However, one thing that I know now, that perhaps I wouldn’t have known quite so clearly without Ben’s disability, is that I married the right man. I am lucky. For this I am extraordinarily thankful.
Last week marked the anniversary of James and I getting together exactly fifteen years ago, when we were undergraduates spending too much time watching Neighbours and drinking too many pints of cheap lager. In the following ten years we had many adventures and a lot of fun, travelling frequently and building careers.
Then, five years ago, when Ben was born everything changed. I have no doubt that I wouldn’t have made it through the first year of Ben’s life relatively unscathed if I hadn’t had James. We were worried and sad. It seemed hard to have fun. But at least we were doing it together.
There is no equivalent to the shared responsibility of parenting, the person who is as interested as you in some domestic anecdote about something your child has done, who is as pleased as you are with a small development. I have taken on the majority of day-to-day care and co-ordination of Ben’s life, but James is always there listening, commenting and encouraging. James can do everything for Ben that I do and will do it happily, be that getting up almost every night with him for 6 months when I was breastfeeding newborn Max, or feeding him and giving him cuddles.
I do not take this for granted. Statistics about relationships of parents of disabled children are chilling: you are more likely to separate if your child is disabled. The combination of demands (physical, financial and psychological) and stress are too much for many couples.
I can’t help think this isn’t helped by many professionals addressing themselves almost exclusively to mothers. We have had numerous experiences in hospitals, clinics or at home where people talk to me and ignore James. They do not ask his opinion, or literally talk to me about Ben with their back to James (for example, about the risks of an impending general anaesthetic).
But it is a fundamental misunderstanding of the dynamic of our family to think James isn’t interested or involved in Ben’s day-to-day life. It is not only insulting to James by minimising his role as Ben’s father, but also puts more pressure on me as the one who should know everything and shoulder most of the responsibility.
It also doesn’t account for my notoriously unreliable memory versus James’s ability for near-perfect recall. Or that James combines all this parenting with a full-time job. Or that, for example, he’s taken a day of leave from that job to be sat on a hospital ward being ignored by a junior doctor.
Sometimes I look at my kids and I almost can’t cope with the amount that I love them. I felt like this about my younger sisters when they were small – I sometimes almost crushed them with cuddles. Like yesterday when I collected Ben from school; I walked in to his classroom and he was so obviously happy to be there, and then saw me and looked like he was the happiest he had ever been.
The only thing better than that feeling of fierce pride and overwhelming love is witnessing it between your husband and your children. He loves them as much as I do, and we are all Team Ben.