Have you come across blogs about children with cerebral palsy, that just doesn’t get updated as the child gets older or after a major operation or complication? I know you are nodding your head because that’s what happened here. I’ve always found it terribly frustrating because I wanted to know how the story ended – as if there is ever really an ending.
I now know what happens.
Life gets in the way of blogging and before you know it, you’ve been doing the same thing every single day for years and you forgot to tell anybody about it. Time passes without you realising it. You age but don’t really become any wiser. Just more tired. Your body starts to ache. You gain weight. You start to need that glass of wine each night. And the glass turns into a bottle without you even noticing.
Your career goals and dreams went flying out the window a long time ago but you no longer have the emotion to care. Your marriage is good, then bad, then indifferent, then good again. And then one day it’s just nothing. It just exists. You watch as your friend’s marriage breaks down and realise that there has been a lot of that going on while you weren’t paying attention. You have managed to stop paying attention to everything besides the daily grind.
And then one day you wake up and ask yourself – is this really all there is? Is this how my story goes?
This wasn’t what I had planned.
If you came to TP because of ABR – I can’t tell you whether or not to do it. It’s one of those things you have to try out yourself and see how it works for you. In the long run, it didn’t work for us, but I don’t regret trying.
If you came here because of the ITB – just do it. You, like me, have run out of options. It wasn’t as easy as I hoped. Yes, there have been complications. And yes, I would make the same decision again.
I first started this blog to explore my emotions following Moo’s diagnosis. It has helped me during some very dark times. But I am no longer able to write like I used to. After banging my head against the brick wall in disability world for the last 8 years, there is no emotion left and no subject that I haven’t written about at least once, or twice or ten times already.
Moo is now eight years old. I have loved him since the first moment I met him. I would do absolutely anything for him and have tried to do that at great personal cost to me.
At some point, I lost my identity and became Moo’s mum or hubby’s wife. I haven’t existed outside of my family for quite some time and they have become my defining feature. And I’m not saying that is necessarily wrong. It neither right nor wrong. It is what it is.
So this is where Terrible Palsy ends but not where my story finishes. Today I woke up and decided to turn left instead of right. You don’t always have to do the honorable thing. There isn’t always a black and white answer. Your story isn’t pre-determined.
Smell the roses. Enjoy laughter, love and light. Live every day as if its your last. That’s what I’m going to do.
My family is okay. I’m okay.
And as the universe doesn’t end in a bang, it ends in a whisper – this is TP’s whisper.
Much love to you all.