I have read (seen on TikTok) a few times in the last week the idea of not feeling like we need to ‘behave like summer’ when it’s winter. It’s the idea that it is ok to listen to how a season, or a situation makes us feel and respond to that with what feels right. So in winter, not feeling like we have to find more energy to go on a hikes, to keep pushing ourselves and challenging ourselves (unless we really feel like it), but to give ourselves permission to do what feels good.
For me that looks more like blankets, loose fitting trousers, fairy lights, a buffet of sweet and savoury snacks, and a book (ok, it’s often my phone, but I am trying to get better at putting it down). I am still finding time to do some exercise and getting out for sun on my face whenever I can, but I am not pushing it.
I have been thinking about this idea of how ‘doing what we need to do’ relates to being a parent carer of a disabled child. For many parent carers (I will guess most) life is frequently up and down, often lurching sideways.
I’d love to hear a shipping-forecast style report of how a parent carer’s week looks.
We all know that storms feature heavily. What I am learning is that my response to these weather-events, or darker seasons, is very important. This isn’t so much about the feeling bit. I of course can’t control my initial reactions when our little girl has a seizure, or the anxiety I feel when we are out in public and her determination eclipses everything. And it is important I allow myself to feel the deep sadness when it arrives. But the doing bit; what I do and how I look after myself during these times, is something worth focussing on.
I have had to accept that I can’t push through it all by living life as normal during these difficult times. I have to dial it down, say no to things (sometimes things that I had already said yes to), surround myself with my inner circle of family and friends (only those I am comfortable to cry snot into the shoulders of) and hunker down while the storm, or the cold, dark season, does its thing.
Once things start to calm and lighten I can emerge a little more.
My tendency in the early days of this storm-weathering was to throw myself back into life and try to catch up. To try to prove that having a disabled child hasn’t changed what I can do, that I’m still the same person. Except I am not. So I don’t do that anymore. It is too tiring and it serves no one. Instead I try to follow my instincts, which more often than not tell me to get some snacks, find a blanket, switch on some fairy lights, and rest.