16 Feb 2017
For about three seconds in 2005 (the year I became a mum) I thought I was SuperWoman.
It didn’t last long.
Unfortunately, for a good few years I then thought that I had to pretend to be Supermum. Every morning I donned my Lycra suit and tried to trick everyone into thinking I’m super-human.
Having a child with complex needs meant my to-do list was immense. Soon busyness became a badge of honour and before long my days were devoid of any rest or time to myself. The person I became wasn’t pretty.
I knew things weren’t right when I found myself choosing ankle
socks instead of knee length, because they took less time to put on.
Then breakfast became any food consumed before midday and before long PIPs had nothing to do with personal independence payment but a much coveted ‘Poo In Peace’.
I had tied up my worth as a woman and mother in all the things I did and because I didn’t value any of my tasks very much, I needed to do more of it. So I added quantity in order to outweigh the lack of quality in my workload.
I realise I’m not alone
As with many parenting issues I find myself thinking it’s the same but different for a parent of a child with disabilities.
Slipping into a role where my needs are bottom of the list is not unique. Yet I know that the pressure of therapies, anxieties about the future and endless medical appointments make caring for my eldest son exponentially harder. In comparison, looking after my other two sons is a walk in the park. That isn’t to say it is easy (it’s a very muddy and hilly park), but it isn’t the same kind of hard.
But what makes this whole parenting thing much more difficult, isn’t the appointments or physiotherapy. It isn’t even the waking through the night for a decade – it is the possible guilt and regret.
It is walking around with a backpack full of ‘What ifs?’
What if I didn’t do postural care early enough?
What if it is because I haven’t stimulated his vision that his sight isn’t progressing?
What if being too tired to use the standing frame will mean he has to have a major hip operation?
What if someone had told me about this specialist therapy earlier, maybe it would have made a bigger difference?
What if I will never be enough of a mother?
The truth is, I can’t answer the ‘What ifs?’, no-one can. Because they are simply little rabbit warrens that lead to nowhere helpful. They just get deeper and darker and further away from the light. If we aren’t careful the load becomes unyielding and our expectations have no foundation in reality.
So, here is my alternative ‘What if?’
What if my son is no longer with me?
Will I regret not stimulating his sight or that extra hour in the stander?
Or will I regret not taking more care of myself and simply relaxing in his company? Maybe I’ve been asking the wrong ‘What ifs?’ all along.
And there is something else I noticed when I looked in the mirror.
I only have two hands.
No matter how many times I count – there are still only two.
And here are some other truths
I can only do my best with the information I have.
The day only has twenty-four hours in it.
I’m only human.
I can’t do it all, all of the time.
Asking for help and advice is good.
I would like this not to be true. I would like the mirror to lie just a little. Because it’s hard realising you aren’t Superhuman, but then it’s good. It’s good to know that I can ask for help with lots of stuff, even postural care – a decade after my son was born.
What is really surprising is that those at the end of the phone at Simple Stuff Works don’t shake a finger and put me on hold to ‘tut’ loudly, they encourage and inform. With care and insight they help our family, however they can, to go from where we are to somewhere better.
When I had this revelation, it caused me to take a very big deep breath. And I found a freedom that comes from letting go of the lie that it is my responsibility to keep the universe intact. So, I ask for help and take it when it is offered (mostly). I try to shout over the feelings of guilt with my armour of truths.
So, why don’t you join me, take a deep breath and repeat after me.
“I’m not super-human but I am more than enough.”
Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.