“I said I’m sorry, you fucking stuck up bitch” he said.
I looked up from disentangling my skirt from under my foot after a near ankle-ectomy caused by the neon pink wheels of his daughter’s trike.
Apparently I was allowed only 5 seconds to thank him for his apology. So I called after him.
“What did you say? You didn’t give me a chance. Do you talk to your little girl with that mouth?” I said.
He wasn’t expecting that. He had no comeback. He slouched off after his partner and child, a naughty schoolboy. Tail between his legs after Swearing in Selfridges. I’d treated Dulcie to a fancy nappy change, she’d responded by eating a corner of the paper changing mat which she chewed bovine like through all of this.
But there we were, between our snap judgements. He thought I, like probably every other customer in this shop, thought they were better than him. Did we? We’ll never know, but in his mind we did. And to be fair, after his performance, I kind of thought I was.
“Stupid. Stupid. Stupid.” he said.
“Stupid. Just Stupid. Stupid”. A blazer and chinos. Sports casual. Two minions that I presume were his offspring trailling behind him, also attired in blazer and chinos in the Tate Modern.
Tries to walk up a down escalator.
“Oh cooome on. Stupid. Stupid. Stupid.”
I couldn’t help but watch, transfixed. And judge. And laugh. I wasn’t the only one, it was quite the show. But who was I to know what was going on, or why he was acting so irrationally. Or clocking his wardrobe and pigeonholing him as a screaming Tory.
I know I’m returning to a recurring theme here, I only spoke of judgement in my last post. You can judge me as a tad repetitive if you like. Or a little dry on material. I guess it’s because when you produce extensions of yourself, you’re suddenly able to take a step back. People don’t need to avoid eye contact with a child in a room, down a corridor, from a supermarket trolley, trying their best to attempt owl like feats of head spinning from a sling. So you can take a better look at them.
When you have a child that ‘doesn’t display in the normal way’, you expect some looks, some interest. But actually what surprises me isn’t that. It’s the speed to which they look away once it’s clocked that this conversation is going to be awkward. Rather like a Monet, Rufus gets a bit confusing close up. He’s been awarded his blue badge this week. I fully expect that I’ll be tackled when parking in a disabled space and directed towards the nearest mother and baby one. I say fully expect, but actually I sort of hope to be. And what if that doesn’t happen? You may be judging me as deluded given it was awarded in a heartbeat. No further questions ma’am.
I had a stand out row this week, beyond the usual domestic bicker. And in telling it I’m going to have to reveal who my opponent was. But not to ruin an ending, it’s in honour to him, the true victor of this argument. Bear with me, there’s going to be some medical information about Rufus here, and it’s a bit, well dry again. But they’ll be some mush to put on this Ryvita at the end.
Since Rufus has been tiny, there has been an overhanging syndrome. It’s name is Galloway Mowat Syndrome. And to save yourselves running away to enter that into your search engine of choice, and quite possibly come up with some information that scares you silly, I’ll summarise. At it’s core is nephrotic syndrome (congenital or otherwise) and central nervous system abnormalities, usually evident from microcephaly (small head) or structural brain changes that are normally evident in an MRI scan. It’s very, very rare (40 cases since 1968), they are unable to test for it genetically so based on a clinical diagnosis. So why does Rufus have this overhanging and yet not given that he has the two key features? Well, it’s true he has nephrotic syndrome and that his gross motor skills are severely affected. And he has the large ears that are a common dysmorphic feature. And he does have a little head, but not markedly smaller than him as a whole. And in fact, until he was 2, it was actually bigger than his little frame beneath. And an MRI scan showed ‘nothing significant’.
But here’s why this has cropped up again, the bit that makes the little box of fear open again. It’s key marker is seizures, and intractable epilepsy. And Rufus has been having some ‘episodes’ of late. Nothing long lasting, a head drop here, some jaw gnashing, eye flickering and arm jerking there. Difficult to discern out of his general oddities, but I looked into it. A case study of Galloway Mowat described exactly one of these episodes, and talked of one of these as a form of epilepsy. I’m at a stage now where rather than burying these little fears, I’m tackling them head on. I say head on… Well, as near as damn it. So this came up over tea with my parents. My Dad rolled his eyes, talked about pigeonholing Rufus, trying to make him fit a syndrome. A touchlight to my slow burning spirit. I exploded spectacularly. How dare I be judged? Patronised? This was not what I was doing, I was trying to make sense, be his advocate, explore avenues, push for a neurologist in his team of professionals. Interjected with a lot more swearing and slamming down of items and leaving the room in a spin, a teenage door slam in my wake. I felt judged as neurotic.
Of course, my Dad was mortified. He had not meant this, and through his apology and our reconciliation I saw something I had not judged correctly. A man scared, trying to protect, help. To be a father. Living through this vicariously, and that, in many respects is harder.