Being a parent carer brings with it its fair share of emotions, challenges, good days, bad days, and the days when it all gets a little too much.
Some days I feel strong, determined, energised and full of confidence. Even on 3 hours of sleep, I can somehow muster up a bit of positivity. I focus on routine, I focus on motivators, I pick my battles.
These are the days I make plans for our future. I tell myself Bobby will be with me forever and that I will always find a way of meeting his needs no matter what. These are my favourite days because it means that although life isn’t perfect, I feel like I can make it work.
But then I have the days I wake up and instead I question ‘how am I going to get through today?’
These are the days I feel like I am drowning. Sleep deprivation has taken control of my brain, I feel weak, exhausted and like a failure. These are the days I question the future and convince myself that I am not going to be able to meet Bobby’s needs in the years ahead, my heart fills with dread and fear at the thought of the unknown.
I call these my survival mode days… I overthink, I am irrational, and I get consumed by mum guilt.
I have had more of these days recently due to the impact of Covid and lockdowns. Without school, without routine and without support the days were long and the nights were longer.
We lived an existence within our four walls relying on friends and family to drop off food shopping, art and craft supplies and copious amounts of McDonald’s on our doorstep.
We would watch the world go by from our window, kids biking past, families out for walks, even dogs had more privileges than us. We were prisoners in our own home.
By day I was mummy, I was their safe place, their teacher, their chef. I was an astronaut, a mermaid, or a pilot. But, by night I was scared, I was lonely, and I was sad.
A neurotypical nine-year-old has the mental capacity to understand right from wrong, what is acceptable and what is not. My neurodiverse nine-year-old on the other hand does not. Bobby has no awareness of danger, his communication is limited which means he gets easily frustrated and that often leads to violent outbursts. Bobby doesn’t process the aftermath of a meltdown; he doesn’t understand the consequences of his actions. We have holes in walls, doors ripped off their hinges and drawers hanging off.
I remind myself behaviour is communication, and this means he is struggling too… Only he can’t tell me in a rational way that would prevent anyone from getting hurt.
So, on the days when it all gets a little too much, I remember he has it so much more difficult than me. He can’t talk to me about it, I can’t offer him reassurance. All I can do is hope, hope he knows I’ll do everything in my power to keep him safe with me.
Abby Lewis, Parent Carer from Marske, Redcar & Cleveland.
If you can relate to Abby's experiences and would benefit from engaging with support, take a look at what is available locally:
Huge thanks to Abby for sharing her experiences with us.
Read Abby's first blog post for We Care You Care and e-mail us, hello@wecareyoucare.info, if you are interested in writing for the website to raise awareness of the realities of being a carer in the South Tees area and encourage other people to recognise that they are not alone.
