Before I started my role as a parent carer (one for which I did not apply, was inexperienced in, and felt ill-equipped), I took for granted, like many of us, routine, predictability and to largely have control over my day to day. The day my daughter had her first seizure was the day that this control vanished. I knew in my gut that things would never be the same again, and that I could not stop this bullet train of change that I found myself on. I did try.
I thrashed around in my head, trying to think of a way to get out of this situation which seemed impossible and horrific to me. Googling cures, outcomes, possibilities, support, desperately trying to grab on to something solid and certain. But there was nothing. Everything was in disarray. I had to give up for a bit, to relax and stop fighting. Like devil’s snare in the Harry Potter books, the harder you struggle against it, the worse it gets.
I found that going with the flow released me.
Of course, I haven’t given up fighting completely. I have simply stopped fighting against what I can’t change. I still reserve and deploy plenty of fighting energy to get my daughter what she needs, and to advocate where I am able, for other families and the childhood disability community. Giving up the fight against things I cannot control however has been liberating. I still feel a pang of frustration, annoyance or anger when my plans are scuppered by a surprise seizure, but I quite quickly let it go now, reorient myself and move forward. Importantly, I make a mental note to rebook plans or treat myself in some other way as soon as possible when the crisis has passed. I make sure to do this; I’m strict about it.
I see it as vital to my wellbeing.
I also consciously try to go with the flow when my daughter’s disability causes other life stresses; broken goods in a supermarket, lying on a pavement (or road), spilt (deliberately poured) liquids, ruined clothes (hers and mine), three changes before getting to school, TV being pulled on the floor. I don’t always manage it, but for the most part I do. I think what helps me is having a conscious policy that it does not matter. I’ll sometimes say that in my head – ‘this doesn’t matter’. A bit like when I get a parking ticket, I do not have the reserves to expend energy on getting annoyed or angry. Those feelings are horrible and simply add stress.
This ‘going with the flow’ mentality has taken me years to learn and I still have to work hard at it, but I know it helps me hugely. In the same spirit, when I do of course find myself screaming internally or stamping my feet when my plans have dissolved once again, I will not let myself feel bad about my reaction. This festive season I will be drawing on all of this learning to remind myself that, Christmas is ultimately just a day and, despite what the advertisers will have us believe, most people’s don’t happen without a bump or two along the way. Here’s to a messy, bumpy, happy Christmas.