If Only

Right now I’m taking a break from the copious amount of admin I seem to be slowly drowning in and coming up for air via the snorkel of this blog.

First up, I’m proud to say WE SURVIVED! By survived I mean we got through the full 60,480 minutes of the school holidays in one piece; alive, breathing, and relatively unscathed. I wouldn’t go as far as to say we got through it well, that would be an altogether different scenario. The reality is the matrix of destiny (aka the calendar) that dictated who was where at what time and for how long left its inevitable imprint on our uber tolerant children. Like a game of human Tetris any deviation from the perfectly tessellating plan resulted in it all spiralling out of control pretty quickly. D and O were fairly amenable, but BH did not take kindly to being shunted about like a heavy piece of luggage. Holidays for us do not equal lazy lounging days or fun spontaneous day trips. They involve a carefully executed master plan of action, involving a juggling act with lots of lovely carers to ensure B’s 1:1 support needs are met at all times. Mostly it isn’t all that fun, and it leaves a constant bitter taste in my mouth that I am failing someone somewhere along the line, which in reality, I probably am.

I can’t begin to explain the frustration of knowing the parent you are capable of being versus the parent you actually are due to the shitness of your circumstance. But then, we all have our limitations. I mean, we could all be these perfect parents if only… if only we had more money, or if only we had more family support, or if only our kids were less like little shits, or if <insert personally appropriate situation here>. So why do we beat ourselves up by conjuring up the mythical if-only version of ourselves and pinning it firmly to the fridge of life where it perpetually haunts us, reminding us of the shiny life and kids we might have had. If only.

I call bullshit on the if-onlys. The life we have is the life we have, warts and all. Now some of my friends would get all philosophical at this point and tell me that everything happens for a reason, including the nasty bits of existence. I hate to be the person to shake it up and cause controversy (gasp) but I call bullshit on that too. Here’s why.

I recently read a FB post from a dear friend who also has a child with B’s condition. In it she detailed the differences in the detail of a typical child returning to school after the long summer break, and one of our kids returning. It honestly broke my heart, mostly because her boy also struggles with seizures like B, but also because key times like this (back to school, Christmas, birthdays) act as a spotlight on that mythic if-only fridge picture.

Our morning goes a bit like this; we still have to dress our kids for school because they can’t do it independently. We have to tally the number of seizures our kids have each day. Let me say that again, we have to tally the number of seizures B has because it is the only feasible way of recording the vast numbers he experiences. We have to feed our kids breakfast because they can’t do it themselves. We start the day with no clue as to what is going through our kids heads, and we end the day no closer to any understanding. We watch our kids seize multiple times before the school bus arrives, always watching carefully to decide if we need to take any further action. We play medication Russian Roulette religiously every morning. We constantly shun our other children because we are too busy preparing the paraphernalia around our special kid; writing in the home-school communication book, observing and recording behaviour, gathering the meds, change bag, and anything else needed for the day. We (try) to use the cue cards to prompt our kid as to what happens next. And so the list goes on.

I call bullshit on the if-onlys, and I call bullshit on the everything-is-for-a-reasons. It is what it is. Do I learn and progress? Of course. Does this crap make me a better person? Probably. Could I have learned those things without losing my little boy one seizure at a time? Definitely. Do I love my kids but wish it were different? Yes, yes and yes! But like I said, to a greater or lesser extent, don’t we all wish it were different? I suspect so. So friends, stand with me today in a unanimous middle finger raise to the if-onlys and the everything-is-for-a-reasons. Grab this little bit of life right now, minute-by-minute, day-by-day, beautiful bits, beastly bits and all.

‘Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.’