Jane Holmes Blog: Parents can accept their child is disabledBy Jane Holmes
February 04, 2013
Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.
She set up the charity after her daughter Kitty was born with severe cerebral palsy
The other day I met someone whose baby had a naso-gastric feeding tube.
Once I got chatting to her, it turned out that the baby also had other difficulties, a squint, tight legs and a lot of reflux. This little girl reminded me of my own daughter who, thankfully, wasn't with me at the time.
I say thankfully because this mother, after the initial shock of something being wrong with her baby, believed she would be fine. She'd been told that the baby would need physiotherapy and was also getting advice from a speech therapist.
She was incredibly positive.
Despite her baby's obvious disability, this woman's positivity is what resonated with me the most.
I too believed that I could cure my daughter of her cerebral palsy.
In fact, I tried all sorts of therapy from the conventional to the downright crackpot, but that small lesion on her brain stem beat them all and she remains very disabled to this day and always will.
What has changed for me, though, is that I have accepted my daughter's disability.
I have learned that it is not a bad thing, it's just different.
It's largely society that makes disability unwelcome and the system that makes it difficult.
Of course, in the beginning and like the woman I met, I needed the positivity and faith that I had, in order to cope with what had happened to my baby.
I needed to believe that I could change her, when in fact eleven years on, it is very much her who has changed me.
Right at the beginning, though, I wondered whether my daughter's disability was something I somehow deserved.
I'm not religious, but in my agonized state, I even wondered whether something I had done in a previous life had made this happen to her.
I remember asking my mother whether she thought it had.
She replied by asking whether perhaps my daughter had done something, rather than me.
Obviously I flew into a rage and asked her how she dared say that about my baby. Her reply? 'How dare you say that about mine?'.