Whenever we go out it is inevitable that some stranger will approach us and ask, “what’s wrong with him?” Talking about how angry and upsetting this makes me is enough fodder for another blog (heck, it’s enough material for an entire book). But today, I want to talk about terminology.
Usually, once I very curtly reply that he has a disease and is sick, the next question is, “but he’ll be ok?” They say this as a question to reassure themselves that all is right with the world.
There are many words to describe Aidan’s current status: terminally ill, palliative, he has a life-limiting illness or put simply, he’s dying. Sometimes depending on the person, I say he is terminally ill. If I’m in a foul mood and think the person isn’t all that bright I might say palliative and leave them looking blankly at me. Some ask what that means, others not wanting to plead ignorance, shy away and I have a little smirk to myself. By the fifth time in an hour that someone has asked me, I say quite rudely “he’s dying” and get a sense of satisfaction at their shocked faces, like uttering the very word would somehow make him drop dead right in front of them. It’s kind of my way of saying, “that’s what you get for being so rude as to ask”.
Strangers find it particularly difficult to comprehend when you tell them your child is dying, they can’t believe you have given up hope and there is no cure. Part of this is because as a society we don’t talk about death very well, particularly when it involves children. Most people only think kids with leukaemia die and surely a child that is running around can’t be dying.
But for the most part I say Aidan is terminal. For a while when we had gone a few months without a major crisis, I even dared say he had special needs, almost convincing myself that that’s all it was.
I find the word ‘terminal’ less confronting than ‘dying’ and less medical than ‘palliative’ (which is actually about dealing with pain and letting nature take its course than ‘dying’ per se), and to say he has a life-limiting disease is far too politically correct for me. For parents in a similar situation, what words do you use?