One thing that seriously naffs me off, is when people talk about parents of disabled children experiencing bereavement. I think it’s careless, pat, unreflective and unhelpful. Some may, of course. Fair enough. But I suspect an awful lot don’t.
I think the everyday rules and sense of order, predictability and certainty disappear when you find out you’ve landed a speshy. These rules/order revolve around ‘mainstream’ lives, not the lives of families with eel children. And I think there is a sadness. A deep sadness, that is made up of all sorts of different things. Anyway, this got me thinking about tears and how much I’ve cried since LB was born.
I’ve produced some illustrative materials here, to add a bit of colour.
Picture A; total volume of tears (I’m pretending to be a bit scientific here, though faithful blog followers will be aware that I ain’t got a scientific bone in my body). This is all the tears I’ve cried since LB was two.
Picture B; total tears minus: all those caused by things like filling in DLA forms, insensitive interactions, lack of appropriate support and non existent adult services.
Picture C; it gets very scientific here.. total volume in retrospect: the amount of tears I would have cried if I’d known how LB would grow and become. And the red jar represents all the tears I’ve cried with laughter over the years. Interesting, eh?
Something is clearly wrong here. I no longer think it’s got much to do with LB. And it certainly ain’t grief.