This morning I started my day with the typical cup of coffee while perusing social media. What wasn’t typical, though, was to discover a comment left on one of my blogs addressing the difficulty in finding suitable housing when faced with the requirements that come along with severe disability and profound medical care needs.
“Would it not be possible to place Brendan in a hospice so you and your younger son could more easily find a home?”
Even now, as I re-read that question over and over, I somehow can’t fully wrap my mind around it. That initial smack in my face continues to sting even hours after the first reading. There are some things that people should never, ever, say to a parent of a child with a disability and/or a life-limiting condition. This is one of them.
Over the past 13 years on this journey with my beautiful son Brendan Bjorn, I have heard it all…
You should put him in a home and get on with your dreams and your life. (He was only a year old at that stage)
If I knew I was going to have a baby like that, I would have aborted it. (FYI – I didn’t know)
When is he going to die?
He doesn’t have any quality of life so really it would be better for all of you if he passed away sooner rather than later.
Some of those above comments were made by family members. The impact is tenfold considering the source. When it comes from a stranger, you can nearly forgive and forget – but still, the sting of that initial smack lingers as it intertwines with the heartache that a parent like me carries, hidden in the deep recesses of our soul, daily.
Here’s the deal: Don’t say those things, ever. Don’t suggest that we place our disabled children anywhere else but home. If we want to, we will, but it is not anyone else’s place to suggest such a decision should be made. Our disabled children are our children. Get that? They are not something that we could – or would – readily dispose of like yesterday’s newspaper. Again, they are our children.
Disability does not equal disposable.
This journey is hard enough having to fight the system and the government for equality, fairness, specially required exceptional services (ie: disability suitable housing), much needed respite care, medical appointments and operations to be done in a timely manner, and so very much more.
This journey is hard enough when fighting the system and the government, that we are made to feel like our children are unworthy – if not even disposable in their view – so the last thing we need is personal commentary from family, friends, or social media followers suggesting the same.