Done, Not Dusted

Suddenly, there’s nothing to write about. Why? Because suddenly everything is going well. Ha! I’m not saying that’s the reason I write, but it certainly has been the focus of my writing – to describe the crazier dynamics of my family. It’s been my way to understand it. I imagine I’m not the only one here using this method. I’ve also wanted to keep a proper diary, ever since I wrote a pre-emptive entry in my Hello Kitty diary on the plane, flying to Disney World with my dad and best friend, Laura Farren. I was 8, almost 9. I didn’t see it through though. It’s haunted me ever since. This is the year I’ve been told to take a risk, so I’m trying again. Five hundred words a day. What does a person write about? The sunrise, the storm we had on Saturday, the conversations I have with my dog – I swear she’s talking to me? Well, maybe all those things. The most important thing though, in terms of learning about myself through this writing – I’ve discovered getting vulnerable has been the scariest and most wonderful experience of all.

So many things I was scared to write about. Hold on; change the past to the present. I’m still scared. Number one on the list – Delph’s cerebral palsy. Has to be. This is because it is her disability, not mine. Her experience, not mine. If I talk about it on her behalf, not only am I breaking her right to anonymity, but I am potentially undermining her experience. That’s what I’ve thought. Here’s the thing though. I have to write about it. Yes, partly because it’s my experience too as her mother, feeling both the ups and downs of living with disability alongside her… but it’s more than that. It’s because I was scared to write it. As I delve deeper, it doesn’t stop. I just get to the deeper fears. It was Delphine’s recent experience of dancing with fellow disabled dancers that made me realise I’ve been trying to keep her ‘normal’ for years. I’ve never wanted her to join the ‘disabled club’. I thought if she did, she’d been subjected to a life of ableist prejudice. I wanted to my completely unique and special daughter to be just like everyone else. In doing so, I was being just as ableist as all the other ableist people out there.

Writing this has helped me to see it. The journey to fix some of these things we do without fully knowing it can be an equally difficult fix. I’m grateful to my words. They can lead.

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