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, TWO FUCKING MONTHS) we’re still waiting on an outcome from the review I blogged about a while back. You know, the one where no one did their job, but I was thankfully savvy enough to know how to do all their jobs for them. In the past few months, B’s epilepsy has steadily increased; we’re now seeing a lot more of the ‘old’ seizures, plus some new stuff and some nasty prolonged stuff too. The management of that falls on us as parents- his condition is so rare that the doctors have less of a clue than us, less time than us, and frankly, less fucks to give. Add into that his absolute phobia of anything hospital and we’re left making fairly significant clinical decisions on a regular basis. It’s got to such a point now that B’s regular quality of life is starting to suffer- there are days where he’s completely wiped from seizures, days where the spark is gone and his function is limited, and days where there are glimpses of pure rage at the hand he’s been dealt. Obviously that has a knock on effect for the other kids. He seems to typically target BH, which sucks, and yesterday was the first time I’ve experienced his frustration firsthand and been unable to stop the situation. He was intent on communicating his anger through lashing out physically, and it scared me. Right now he’s smaller than BH. What happens when he gets bigger, and stronger? How do we deescalate those scenarios effectively to ensure the safety of everyone concerned?  And not just physical safety, but the whole holistic package. Currently my girls are exposed to ongoing emotional trauma as their norm; the chronic stress of helping raise an extra-special edition kid who we all love to death and would do absolutely anything for, but whose needs come with inordinate amounts of extra life admin. His moods and behaviour are unpredictable, and they witness that plus seizures on a daily basis. Now c’mon. It’s sharp, it’s sour and it stings like a bitch. If anyone reckons they have a recipe to turn that crap into sickly sweet loveliness, come at me mofo.

I also have deadlines for uni coming up, and I’m having to learn some serious necessity vs best-case discrimination skills. Truth be told, I can be a total competitive arsehole. Don’t nod too furiously guys who know me, I can feel your agreement from here! That drive is actually a really good thing……..to a point. So far I suck at working out where that point is, and end up near-killing myself to do everything at 150%. This is not sustainable. I do not, in fact, possess the magical powers of Wonder Woman (although I reckon I’d look just as hot in her outfit), and I definitely am not the best at admitting defeat. Back to the necessity vs best-case skills. Prioritising, it seems, is excruciatingly painful.  I’ve ended up having to look at which pieces of work are assessed-the bits that ‘count’- and concentrate solely on those for the time being. No fun extra learning. No bells and whistles and going above and beyond. With everything else, I need to just get through. Scrape a pass if it keeps my sanity intact. And my best within the constraints of my circumstance will have to be enough. For someone who’s spent their whole life fighting against being defined by the shit hands they’ve been dealt, this is a seriously bitter, gag-inducing pill to swallow.

Life isn’t fair. And no amount of positive thinking is going to magically produce delicious fucking lemonade. So my biggest lesson right now? Learning to eat lemons. Or at least being content in grabbing the tequila and salt….