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Raising a child with special needs: B is for Brave

Raising a child with special needs: B is for Brave

They didn’t play together of course, even though my daughter is the same age as her son, he rushed around with his toy cars whilst she lay on her back, legs in the air happily chewing one.

I have to admit I didn’t react to the comment externally as I was inside.

I managed to stifle my scream if only to not frighten the children, but in that moment what had seemed like a fairly ‘normal’ and equal friendship, changed.

Brave.

To me brave is something you call service personnel who go off to war, or hunky firemen and women (although in my dreams it’s only firemen!) who save lives at the risk of their own.

Brave people dive into rivers to save drowning dogs, wade into the middle of pub fights to end them and generally do things of heroic proportions. Or they jump off of burning buildings wearing pants over their tights and a cape. Mel Gibson in Braveheart was, well, brave – you get my point.

What did she see about my being a mum to my daughter that was brave? Was I being put on a pedestal? Then embarrassment gave way to horror, was I being pitied?  Was parenting of a child with complex needs being compared to something horrible that one endured like an incurable disease? Or was I indeed the brave soldier doing battle in an endless war?

Lucy had given up chewing the plastic car by this point and was thinking about mouthing something more nutritious so I made our excuses and left.

I never did find the courage (not brave enough) to ask her exactly what she meant, or why she felt she needed to tell me.

Although we met up a few times following that, things were never the same again.

Partly due to my dented pride and partly the ever growing developmental gap between our kids which drove a wedge between us and made ‘play dates’ empty and a bit pointless.

Fast forward a few years and I feel stronger and more mature now, more able to challenge the throw away comments like that which can sting.

I also realise I’m quick to assume that the person has meant something by it when perhaps they haven’t.

People do need to be given the benefit of the doubt and a break now and again.

I’m not sure I agree with her use of the word brave.

To me brave still suggests someone’s put themselves at risk knowing the consequences.

We are not like that, even those who do know that their child will be born with disabilities can’t possibly know how hard the road ahead will be.

Perhaps brave is the way in which we face that road, but again it suggests to me a ‘stiff upper lip’ and get on with it attitude which is a high bar to set ourselves for those days that we just don’t feel strong enough to be brave.

It’s a word I would like to aspire to, but would never burden any special needs parent with – and especially not their child.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

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