So a few weeks ago I was scrolling through my Facebook feed and spotted a post with that godforsaken phrase ‘Special children are only sent to special parents’. I had been mulling over what my ‘Calling Bullshit On…’ article for The M Word might be about and as soon as I saw this, I knew!
I packed the kiddies off to school and sat down at my laptop to have a good old rant. It came very easily. (Perhaps a little too easily.) And it was really only when I began writing that I realised just how deep my feelings on the issue actually ran.
I stormed the keyboard, popped my self-therapy word vomit into the M Word ‘drafts’, noted that I felt much better for getting that out of my system and went about my day, not giving it another thought.
But when the piece went live, I gave it a second, a third and a four thousandth thought.
Because it turned out I wasn’t the only ‘special’ parent who had been feeling more than a little patronised.
The shares started, then multiplied and the piece even bounced around the States. My ‘special’ little rant is now at 35,000+ reads and over 18,000 shares from the website alone. What the actual…?!
I was so flabbergasted when I copped the piece was trending that I asked our editor if there was some kind of malfunction on the site.
But there was no malfunction, I had just touched a nerve; a nerve around a real life dilemma which is that people aren’t always sure what to be saying to ‘special’ families. I do understand this and I know that people can be so afraid of saying the wrong thing, that they say the clichéd thing instead. But being honest (and I don’t know about anyone else), I’d rather people risked saying the wrong thing to me because at least then we’d be having a real conversation.
Being the parent of a child with a life-limiting illness can be so very lonely and isolating. Patronising phrases only fuel that loneliness, however unintended. Real and open relationships are to be welcomed, not feared. So please don’t be afraid to engage in truth talk with me – I promise I won’t break if you put your foot in it! I welcome your left foot as much as your right. And I’m happy to listen to your problems too – friendship is a two-way street. Don’t leave me on the opposite side of the road, all by myself, just me and my ‘special’ problems.
I want us to promise not to dance around each other. I want us to talk openly; like friends, family and colleagues should do. Take this post as permission.
And for what it’s worth, the little gestures below genuinely make a huge difference to my coping abilities (and may do the same for others in similar situations). So please feel free to:
Tell me it’s shit when we’re going through the mill. (Because it’s the truth.)
Ask me if there’s anything you can do to help. (There just might be.)
Ask how my daughter is. (The basics really count!)
Ask how my son is. (My poor frequently forgotten child.)
See do I want to meet for coffee. (I really, really love coffee.)
Text me. (My fingers are willing and able for text-versation.)
Call it for what it is. (A spade. Not a special spade that God made for me because I’m a divinely sent special spade handler.)
Heck, maybe even CALL ME! (That one would really mean a lot.)
But whatever you do, for the love of God, don’t call me special!