When you have a disabled child people often say the most ridiculous things. I’ve heard a few over the years and here are a few of my favourites and why they’re really not helpful and at times quite upsetting…
“God only gives special kids to special parents”
When I hear this I want to reply “Well what does that make you Sharon??” But seriously, God does not give special kids to special parents. Most of the time I am fairly uncertain as to God’s role in what happened with my son. Did she stand by and let the worst happen? Or did she step in and save him?
My mum said to me quite early on if ever there was evidence that there was not a God, this is it. Meaning, how could any loving God allow this to happen to a baby. I can certainly see her logic, especially when my boy is plagued with pain and discomfort. But when she said it, we were just so grateful that he had survived, that for me I felt if anything, this was surely evidence that there was a God, and that she had saved him for me. These days my faith is as uncertain as ever, but I do know that I was not handpicked for this job because however special my son might be, I am positively mundane, which leads me to….
“I don’t know how you do it, I couldn’t!”
I promise you, Sally, you could.
There have been many times where I wished I didn’t have to do it, but unlike a faulty mobile phone, you cannot send a baby back when it doesn’t support all the latest apps. So where you want to, or not. Whether you believe you can, or not. You just have to. Every day you put one foot in front of the other and before you know it, you are doing it, and doing it really rather well!
“God only gives us what we can handle”
God clearly thinks rather highly of me! But actually, this too is rubbish. Once again I wasn’t handpicked for this role, and the idea of The Almighty sitting down to assess how far to push me this week is definitely not one I can get on board with. And you know, we all have our limits. You can push and push and push and eventually I will break, just like anyone will when placed under extreme pressure. Because I promise you, there really isn’t anything special about me.
“Everything happens for a reason”
Another platitude that plays into this idea of a grand design. One of the hardest things to learn to accept, in my opinion, is that not everything happens for a reason. Sometimes really awful things happen to good people for absolutely no reason other than bad luck. It turns out there is so much in life that is beyond our control. And maybe there is a sadistic God testing us? how very old testament! But that’s not an idea I can get behind, and it is definitely not a God I can have faith in.
So maybe some children are just disabled. And at this point, I feel I need to point out that having a disabled child isn’t even bad luck. The circumstances around my son’s injury were awful and difficult, but having a disability isn’t bad luck, it just is. This leads me on to…
“As a parent, it’s the worst nightmare”
It’s not. It’s just not. My child is not my nightmare, and he shouldn’t be yours either. There is no denying that being a parent of a disabled child can be challenging. But 100% of those challenges come from the society we live in and the systems that don’t provide the necessary support. My child is all kinds of awesome, from his cheeky smile to his wicked sense of humour to his immense Paw Patrol obsession. I’m as proud to be his mother as I am for any of my other children, and you would be too if he was yours.
So what should you say?
If you’re anything like some of my friends you might have read this and realised that you’re guilty of expressing similar sentiments (with the best of intentions!) And are wondering what you can say that would actually be helpful? I’ll tell you what I told my friends.
We know there are no magical answers, no one can fix the broken systems that fail to support us and our children, and no one can take away the hurt and pain of disability-related illness and trauma. What we need is for our nearest and dearest to hold space for everything we might be feeling while we support our children through any difficult patch.
A significant amount of the usual platitudes are othering, are setting us on a pedestal, and making it hard for us to be truthful about the times where we are struggling. Usually just acknowledging how crap it is all we need. And coffee. So much coffee!