Last Saturday as I left the house, I met my neighbour. He is a tall attractive man and he was inclining his head in order to hear what his daughter was saying. She is just 4, and was obviously on her way to ballet class. She had her special skirt on and that ballet cardigan that ties behind the back, and looked proud and confident in the way that only little children can. She was clever and off to ballet with her daddy who loved her a lot. And he gave the same impression: look at me, I’m taking my daughter to ballet.
It was hard not to think about the contrast with Hazel’s mum. She brought her daughter to see me this morning, pushing the wheelchair carefully so as not to bang the paintwork. Hazel is a bright and bubbly, pretty nine year old. She has some sort of problem which means her mobility is severely restricted, although she can walk a few steps. She’s also diabetic and has difficulty in coping with the regular physical interventions – particularly the injections. Hazel cries then, and her mum hates it – she feels unhappy for Hazel and guilty that she should be hurting. And then maybe cross with Hazel for needing all this help and even more cross with herself for putting her daughter in this position. We all feel guilty when things go wrong for our children – and wish we could take the emotional or physical hurt for them. What I think aggravates all this, is our own secret expectation of the child. From early childhood and playing at mummys and daddys, we develop ideas about what our own children will be like – whether we will give them opportunities denied to us – wearing a special scarf and hat, going horse riding etc – or being at least as good and possibly better than us at chess, football, English etc. We all have our own dream child in our head, so private that we rarely share them with anyone, and possibly aren’t even particularly aware. Until the baby is born. With the best will in the world, we try to accept the baby we get, but some little part still plans for the secret dream child. Often the gap is not enormous – your daughter becomes a tomboy, enjoys clothes and looks fantastic but doesn’t shine in science, or your son is great in school but doesn’t enjoy sport – but when the child has a disability, things are harder. The child can not walk independently and therefore will need help. The child can not talk fluently and will not be able to express himself. The child can not make sensible decisions and will depend on you to determine what he really wants. This is a very hard thing. Most parents love their children unconditionally and will do anything to help them, even if it means modifying the idealised version of a beautiful daughter who will eventually be happily married with children of her own. And most parents are little aware of the loss, changing their expectations in the light of the child they are getting to know. The parent of a disabled child has further to go in letting go of a dream they are barely aware of. Hazel’s mum is a star, and Hazel will have every opportunity she can be given, she will be loved and cherished, perhaps over-protected….. And if her Mum occasionally acknowledges a regret, or dreams about a different world where Hazel is also off to ballet class, well that’s OK.
