We don’t need the ‘but’.
I don’t remember the first time someone said “Yeah, but you wouldn’t change him for the world, would you?”. I just know people have been saying it since the very early months of my son’s life. When my husband and I were ravaged by deep fatigue, the endless, murderous-sound screams from our reflux baby, weekly trips to A&E, and the fact that the lovely friends we’d met at antenatal classes were all zooming ahead on milestones… And (rightly) sharing their joy every day in our WhatsApp group.
I’ve heard that phrase so many times in the last seven years. When I would complain about the insensitivity and toxicity of it, my husband would say “but they mean well…”. I don’t blame him for this at all. We were both just trying to make sense of it all. But I have a good friend who regularly reminds me that “sentiment doesn’t negate impact” — and that’s where I fall on the matter.
What you say versus what we hear
For parent carers, it isn’t the innocuous phrase one might think.
It starts with ‘Yeah’. A surface-level acknowledgement of what you’ve just said. That you’re struggling. Perhaps at a level where you’re questioning whether or not life is even worth living. Because this version of parenthood isn’t what you imagined. You’re having to fight for everything your child needs. Of course, people around you — even those closest to you — might not know the depths of your pain. You may not have shared it or they may not be able to hear it. But still, the casual nature of a throwaway ‘yeah’ can feel dismissive.
Then, we reach the invalidating ‘but’… often followed by a reason why you shouldn’t feel the way you do. Again, usually well-intentioned and designed to help give you hope. To cheer you along. Or is it? Is it a way of the other person distancing themselves from a truth they don’t want to hear from you, or face in themselves? Perhaps that this version of grandparent/auntie/uncle-hood isn’t what they imagined. Or they feel impotent because they do hear your pain, but don’t have the resources to fix it. You might be reading this and thinking that I’m a bit uptight; that no one word can hold this much meaning.
It can. Please believe me when I tell you this.
To me, the ‘but’ always feels like the other person is saying I don’t want to hear your truth. I want you to feel a certain way because that’s what I can handle. And unfortunately, when I was or am in the depths of the parent carer trenches, this translates into me deciding you aren’t a person I can truly confide in on my worst days. Thus furthering the daily isolation many carers face.
And then we reach the big kahuna: “You wouldn’t change him for the world, would you?”. The line that drives me absolutely nuts. Because you know what the answer is? Of COURSE I fucking would.
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Let me be clear: I would not change my son’s soul. His curiosity, kindness, humour, and emotional intelligence. I wouldn’t change his beautiful face. I wouldn’t want to live in a world where my son isn’t in it.
However, would I take away every physical and intellectual obstacle he faces because of his rare condition and brain abnormalities? Yes. Would I remove every single vulnerability that his physical and intellectual disabilities cause? Every single time. I would let his legs and voice box work properly, so he could run around and tell us what we can do to make it better when he cries. I would allow him to understand why we make decisions that upset him, but are necessary for his long-term happiness. I would let him have a bloody haircut without feeling like he was under attack! I would do all of these things and a million more to change my son.
A toxic narrative
Ultimately, there are lots of phrases like this that feed into the acceptable version of parenthood — well, mostly motherhood, if we’re being totally honest. You know, the “Please tell me it gets easier — ha!” and the “Oh it’s the best job you’ll ever have.” This is toxic in itself, but it’s much worse when presented to parent carers.
Other phrases on our bingo cards include “Special children are sent to special parents.”, and “I couldn’t do what you do — you’re a hero!”. By saying these things, you’re (albeit inadvertently) perpetuating the moral expectation that parent carers should accept raising a disabled child as fulfilling their destiny. That suffering equals growth, and we should be grateful we were the chosen ones. That we somehow have a choice in holding not only the standard worries of a parent, but the overwhelming responsibilities of fighting through a world that wasn’t built for and doesn’t accept our children as being worthy of the basic essentials in life.
And you’re heaping pressure onto already overwhelmed, overstretched humans. Not heroes on a pedestal, fighting to stay on it while we survive three hours’ sleep a night or paying our rent with dust when we lose our jobs because we’re unreliable. Just like you, we can’t take our children back. We ‘do what we do’ because we love our children but also because we have no other option.
So what can I say?
The truth is, you can say anything you like — but I’d encourage any loved ones of parent carers to think about how their words will be received before offering them up. Or even offer your person some options.
I’m lucky to have some very wise and wonderful medical mamas around me. At least once a week, you’ll probably hear us saying something like: “You’re juggling a lot of stuff right now. I hear how hard it is for you. Do you want me to offer solutions, or just sit in the shit with you?”. Please feel free to steal it for any parent carers you love.
Because we don’t need cliches or inspirational quotes. We don’t need to be told we were chosen for this.
We don’t need the but.
