Or otherwise entitled “Unleashing the sarcasm pixies”
“To blurt or not to blurt…that is the question….”
Hi. I hope you’re all ok.
Someone said something to me recently.
I know, I know, that’s not exactly a shocking disclosure is it?
It was all totally well intentioned and I’m sure was without any malice whatsoever.
But it made me cringe.
I mean, REALLY cringe.
In fact, it was the kind of cringe-iness, that takes you aback and sends you into fight or flight mode.
So I cocked my head quizzically and smiled (as I normally do) and then flew, before I caused untold damage to the emotions of a really nice person by opening my mouth and blurting.
And, whether you think that’s right or wrong, that’s what I normally do in situations like this.
Wanna know what made me cringe?…
I was told that I “deserved a medal”
But despite being flummoxed, it got me reflecting on conversations I’ve had with other parents of children with additional needs and what things have been said to them…and, of course, what makes them cringe too.
And…I’m not alone. Oh, no Siree!
Now, before you jump on the keyboard and start having a go at me for what I’m about to say, as I’ve said before…I’m all for freedom of speech and I truly believe that most people say things to you about your child/your situation because they think it brings comfort or whatever. But – and it’s a BIG but – when you’ve heard something repeatedly over the course of several years, then, quite frankly, it…just…gets…a…little…bit…tiresome.
…and sometimes really rather ‘cringey’.
I’ll admit, like most other people, that in the past I’ve also said stuff to other people which I hoped would bring comfort and then thought “doh! why the hell did I say that?” Guilty as charged again “Mi Lord”.
So, I’m not pointing the finger. I’m not having a grump. I’m just highlighting something that many parents of children with additional needs face…in addition to everything else they have to face too!!!
Given that I’m all for freedom of speech and the fact that it’s not my right/I’m not in a position to stop anyone saying anything, I chose the title “20 things (and counting) that I’d rather not hear” rather than “20 things (and counting) that YOU shouldn’t say”.
Because, to be brutally honest, I really don’t want to hear this stuff. At all. Ever.
But I have no doubt I’ll be hit with all these clichés time after time after time for years to come.
However, every now and again the little ‘sarcasm pixies’ that live in my head spring into action, their ears prick up at the merest hint of one of these comments and they’re eager to wreak havoc amongst the unsuspecting. So I either keep them restrained by shutting my mouth quickly so they can’t escape, twitch a little and smile politely or I’d be at grave risk of blurting and hurting someone’s feelings. And that’s something I’d prefer not to do.
So, I’ve written down my ‘favourites’ (pah! favourites?) to share with you…and what the pixies may want to say in response if they ever got the chance to say it in ‘real life’ – but they won’t!.
So, here goes….
You deserve a medal – Erm, oh, ok, right. What for?, pray tell.
You’re a good mum – Gee, thanks.
She’ll be fine – Wow! Will she? Tell me, what makes you so sure?
There’ll be a cure one day – Oh, really? A cure for what? You a geneticist then?
My friends’ daughters next door neighbours cousin’s great nephew had ……… (a totally unrelated disability) and now he’s happily married, with 10 children, speaks 8 different languages, won a Gold medal for gymnastics at the Olympics, has a PhD in Astrophysics and has a really good job in the UN. – Hoorah! That’s made me feel SO MUCH better. That gives me hope that MY child – whose disabilities are SO unbelievably different – will probably emulate the same lifestyle as this random person. Not!
Are you having another one? – Another what? Oh, you mean have another child? Nope, I doubt it. I feel blessed just to have the ‘one’ thank you very much. No need to look so worried, if I had ‘another one’, it’s pretty unlikely that that child would have the same syndrome.
Stay strong – arghhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! When do I not? I don’t really have much choice, do I?.
Keep smiling – double arghhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!! Oh…just…bugger off.
Special children are sent to special people – Firstly, I’m SO not special. Hannah is special of course, but not because she’s deemed as having ‘special needs’. Secondly, if that was the case then why are so many children with additional needs in the Looked After System often waiting for years and years to be fostered or adopted, huh?
God gives us things to make us stronger – Well, thanks very much but actually, me and a lot of other parents have had a gut full of things we’ve been ‘given’ and don’t want anything else thrown at us. Our physical and emotional strength is at its peak right now, so enough already, thank you very much!
You MUST take time to look after yourself – time? TIME? If ever I have any time, all I want to do at the moment is do NOTHING because otherwise I’m running around trying to juggle a million and one things most of the time.
What do you think we should do? – Erm, well, lets see…you’ve got the degree in medicine, not I.
I don’t know how you do it? – Do it? Do what? Oh, you mean care for my daughter? Well, probably because she’s the best thing that’s ever happened to me, that she’s a CHILD…MY child, that nothing and no-one will EVER come between us or come close to the unconditional love I have for her, that I do what most parents would do for their children – i.e. provide the best possible care, support, education etc that I possibly can….shall I go on?
I could NEVER do what you do – do what? Look after my child? See above.
What’s wrong with her? – Nothing’s ‘wrong’ with her, she has a genetic syndrome, what’s wrong with your social skills?
You can’t tell she’s got a cleft palate – that’s because it’s a cleft PALATE not a cleft LIP. So, it’s INSIDE her mouth!!
You should write a book – about what? Alpaca breeding? Oh, sorry, you mean I ‘should’ write a book about what it’s like to care for my daughter/our experiences. Ok then.
She’s not like a normal child – what’s normal?
She’s dysmorphic – If I had a pound for every time that’s been said or written, then I’d be a rich woman. Is that a useful comment? Nope! …and actually, now you feel comfortable enough to share your thoughts on the way my child looks, would you mind awfully if I mentioned that you’re not exactly a looker yourself?!! In fact, you need to get your teeth fixed, lose quite a lot of weight and get your hair washed….oh, and your clothes do absolutely nothing for you…Oh, sorry, too personal for you? That’s a shame.
You’re much luckier than some others – thanks for the observation. I am WELL aware of that. Sadly, however, there are times when I’ve a little difficulty holding onto this notion. Like when she’s choking…like when she needed resuscitation…like the nights upon nights I used to lay awake worrying and listening intensely to her breathing pattern and praying that she’d still be with me in the morning…shall I go on? No? Thought not.
Phew! That tiny little ‘sarcasm pixie rant’ did me the world of good…I feel SO much better!
And finally, something totally unrelated….
Have you ever watched the film Good Will Hunting? It’s a shame if you haven’t. There’s one scene where Robin Williams is sat on a bench with Matt Damon. Every time I see it I get goose bumps. Perhaps the script (here) doesn’t have quite the same effect as when it’s said by Robin Williams…it’s powerful. If only I could write like that.
Here’s an excerpt…
“If I ask you about women, you’d probably give me a syllabus about your personal favourites. You may have even been laid a few times. But you can’t tell me what it feels like to wake up next to a woman and feel truly happy. You’re a tough kid…..I’d ask you about love, you’d probably quote me a sonnet. But you’ve never looked at a woman and been totally vulnerable. Known someone that could level you with her eyes, feeling like God put an angel on earth just for you. Who could rescue you from the depths of hell. And you wouldn’t know what it’s like to be her angel, to have that love for her, be there forever, through anything….”
(Good Will Hunting. Screenplay: Ben Affleck and Matt Damon, 1997)
Right lovely people, that’s all for now. Hope you got something from this post. Please remember though, this is my blog, my views/experiences so whilst I do value everyone’s opinions – even if they differ extremely from mine – I won’t change my opinion….although I’d love to hear what (if anything) drives you potty and what’s been said to you….feel free to add in the comment box.
Until next time.
p.s. Just for the record, I do not, repeat, DO NOT have pixies living in my head….honest!
This post is dedicated to Sonia. Who (finally) became a mummy yesterday. Yippeeeeeeee!!!!!!! Wishing you both a lifetime of magical and exciting adventures. Told you didn’t I? ….never, EVER give up!