Do you ever feel that sometimes you live two lives?
I do.
Just the thought of living 2 lives is tiring. Some days I barely feel I’m doing a good job in this one, how could I live a 2nd one?!
It’s only recently that I’ve really thought about this – that it’s like i’m in two different worlds, and it makes me feel uneasy.
Recently, making the decision to return to full time work – hit me like a tonne of bricks – it’s been a whole other level of tired that has hit me smack in the face! It’s probably the brain strain of learning a new job, being hard on myself that learning a new job is actually quite a challenge and the fact that my memory is not as sharp as it once was.
In those first few weeks of the new job, everything that could go wrong, did! It is hard to explain to people who don’t have a child with a disability, the impact of returning to work has had on us as a family. And the fact that they don’t know you from a bar of soap, so anything you do say, has no perspective to it.
Stresses, modern day stresses affect us all, in one way or another.
My reality, and which I no doubt is very similar to those who have a child with a disability, is that we deal with a very different set of stresses. I want to see more recognition of this, to support the families that are trying to change their lives for the better, and to keep these families together.
We already know that far too many families crack under the pressure and therefore, split up. If they had better supports earlier on, would they have had a better outcome? For some yes, and maybe for others, not so much – maybe it was never going to work and that’s ok too.
But lets start by recognising that the pressure of modern day living with a child with a disability is at a greater intensity level due to some standard every day supports – or the lack of these supports.
What do I mean by this?
You only have to go out in your local community to see families out and about. I see families just cruising around, kids sitting out at lunch – SITTING – what IS that?! The small things I took for granted when we were a family of 3 with a child who was developing normally with no ABI, sensory issues, disability or any other impairment, was a completely different experience to now.
Our son has half a brain due to epilepsy surgery of a rare seizure disorder. He has visual, physical and intellectual impairments. He is non-verbal, although does communicate. He’s developed with all these impairments since he was a baby, so we have grown with him and he’s shown as a different way of life. But as he grows older, it’s apparent he’s different, our family is different and that there aren’t the supports out there that scream INCLUSION! (The buzz word of the disability world and a bandwagon term for mainstream – sorry, not sorry for saying that!)
He’s such a spunky little boy and those who get to know him say the same – his differences are what make him unique. But on the first meeting, you may think he’s ‘naughty’, ‘uncontrolled’, ‘demanding’ (yeah, but can’t all males be like that?!) There are no adjustments made for him when we go out into our community. We make sure we make the adjustments and have it covered (don’t be reading this and think that we have it all together – it’s taken us 7 years to get to this point!)
So getting back to my new job, it is a strain learning a new routine, new processes and procedures – pretending to be bright-eyed and bushy-tailed (more like dark eyes and coffee loaded!) I’ve struggled more than what I imagined I would, it’s an intense environment, and although I feel I deal with pressure relatively well, I find that it can impact my energy levels, if I am having a low day (17 coffees anyone?!)
So I feel like I live 2 lives because one i’m a loving yet frustrated parent of a beautiful boy with a life changing condition, to that of someone who pretends that her life is like everyone else’s –
‘what are you doing on the weekend?’
‘Oh nothing much, just hoping my child doesn’t go missing again and I find him up the road on my neighbours motorbike in their garage!’
I am frustrated because people don’t understand, Governments don’t understand and therefore it’s a constant battle of proving what we need to function ‘normally’ as a family. We need different things to what we needed before when we didn’t have a child with a disability.
Respite helps too, to reset ourselves – which I’ve also written about here.
It is hard to explain to people who have no experience with disability, what it’s like – and depending on the awkward level of silence you are met with (am I right?!) when you try to explain you have a child with a disability –
‘A CHILD with half a brain? How does HE even function??’
‘Like a kickarse rockstar, really’
– it’s another area of conversation that just tires me out – the justification that my child is just as important with or without is disability.
I think that as I learn to navigate this new way of life – the balancing act is not happening at all – Work/Family Life/Disability Life – it’s all or nothing at the moment!
In time we will figure it out – we have no choice but to if we wan’t to keep our family together – it might just take another 7 years though!
