Epilepsy-the hundred-headed shape-shifter

Sorry not sorry for the angry undertone of my title. We've been struggling with a seizure shitstorm for the past while. I say we for a reason. Epilepsy takes no prisoners in relation to who it affects, and although B bears the brunt of the brainfuckery, the whole family reaps the unsavoury results.

Usually, when someone mentions seizure, the first thing that springs to mind for most people is the classic jerking fit. B has (thank fuck) only ever had a handful of these. Before my up close and personal encounter with the epilepsy hellscape I would have thought the exact same thing. But it's a myth. The reality is seizures can present in a million different ways; it's like the ultimate hundred-headed beast. 
Considering our very existence boils down to billions of electrical signals being fired at lightning speed inside our heads, it's not surprising that when it all goes to shit, this could pretty much mean anything in terms of what actually happens. Everything is contro…

Predictably Unpredictable

Whenever anyone asks me to summarise what it's like living with a complex needs child, I always know exactly what to say. Predictably unpredictable. Essentially, the only thing we know for sure is that we have fuck all clue about what happens next. And this pans out on a number of levels.

At home, we have no idea how B will behave from one moment to another. It's a real struggle to put into words the utter chaos that causes without sounding completely hyperbolic. The nearest I can get to an (entirely non-pc) description is it's like having a big, non-verbal toddler on crack. But even then we're barely close.

Hands up parents who remember that helicopter phase? You know, the bit of life where you can literally do nothing for fear of your small person completely trashing your house, themselves, or some other child in the vicinity in the three seconds it takes you to express pee the bladderful you've been hopping about with all bloody day? I remember those days well. …

The Twelve Days of Shitmas


Learning to Eat Lemons

So I was reminded recently of that trite little positivity pearl we’ve probably all heard slip out of the mouth of a well-meaning friend or five in times of need; ‘When life gives you lemons, learn to make lemonade.’ Personally, I prefer to grab the tequila and salt and get completely fucked, but that’s hardly my point. My point is this. I call bullshit. Some things will always leave a bitter taste, no matter how much we try and sugar coat them. Essentially, some situations just suck. Period. Of course it would be lovely if we could transform all our shit into sparkly unicorn magic through the sheer power of positive thinking, but hey guys, newsflash. Sometimes it all goes tits up. Sometime’s life’s not fair. And sometimes there’s fuck all you can do about it.
Right now stuff is tough. It feels like I mainly exist to manage situations outside of my control. I’m at the mercy of strangers to ensure the care package we have for B continues at the rate it does, and after two months (yep…