Wednesday, 1 February 2017

My Life Has Shrunk



I wrote this blog post two and a half years ago. I was going to update this post but decided it is a capsule of my life at the time so I've left it in it's original state. A few details about my day to day life have changed since I wrote this post but the reality I was sharing is just as true today.

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It's not been a good week starting with the drug debacle My Nightmare Came True  and ending with my realisation of how little time I've got to myself now.

When your children start school you feel so lost without them, how on earth will you survive 30 hours every week without them. Then fairly quickly you realise how precious those 30 hours are especially if you are the only one at home. Some people head back to work, others to study, some to voluntary work and then others are super parents making sure the pantry is stocked, the house spotless and everything in control for when the silence is shattered when the school siren rings in the afternoon. Some Super Super parents balance some and all of the above. But regardless of what you do you realise the joy of those 30 hours every week that you can control.

I did most of the above, I've worked, volunteered, kept house and on occasion slept to maintain my sanity. When My Little Angel came along one of the realisations I had to come to term with was that my me time was gone again for another 5 years until she too started school. Not that I minded.

I don't say any of that because I see children as a burden or nuisance, I say it because children are the most wonderful and exhausting journey anyone can ever join and having some time out is essential to survival. Then you add the joy of a special needs child and you really, really need some time out because it is especially exhausting. One friend always said my one child was equivalent to six.

I'm not talking about time out for spas and massages, I'm talking about time that is under your control whether you are working or sleeping, you have made the decision about what you are doing and it is under your control because you can.

Then your children grow up and leave school and your day to day responsibilities of parenting change to less hands on and more mental worry. Unless of course you have a child with special needs. There's no rest for you because your child still needs hands on daily care, you can't start to take a breath and prepare for the empty nest syndrome. There's no - Well now I've grown my family and now it's time for me - Oh no.

Instead, for most of us with special needs children, we either work to pay carers so we can stay in the work force or the child free hours we have control over drop dramatically and there is nothing we can do about it, it's a government decision.

It's ironic really because as the years pass by and you become more and more tired from the constant hands on care that exhausts most parents in those early years we face less time to recuperate and recharge but continue to provide the same level of care to a person bigger and harder to care for.

Instead of 30 hours a week I now get 16 1/2 hours a week to myself and that isn't a lot especially if carers are late to pick up or early to drop off.

This really came home to me this last week when a carer was half an hour late to pick up causing me to miss an appointment. I realised I have little control over my life now and no future date when I will have my own life to control again. I'm at the mercy of other people and have to fit around others schedules and decisions for me.

Of course like everyone else in my position I am making the best of it and getting house work done while Cameron isn't home and anything that is away from home is restricted to four hours on three days. I'm lucky, some people don't even get as much as I have and I feel bad for feeling sad and cheated. But it's pretty sad when you look back and say - My child's school years were the best years of my life.