Seeing in the Dark

Thirteen-years ago, I named Lucia after the patron saint of light. At the time, I spent a lot of my waking hours looking down an embryologist’s microscope. A light-filled Lucia kid seemed right. A year-and-a-half later, the fog was thick on Ealing Common when I thought of Delphine’s name. I was driving to work three-months pregnant and her name suddenly seemed to lift from the fog like a bird. I’d never even heard it before. I didn’t know she was going to be a girl. My skin still prickles now when I remember.

I wonder sometimes if I was destined to live this way. At that moment did I sign up on some celestial register to have a child with cerebral palsy?

I imagine it happened like this. Just as I finished signing, the heavenly administrator revealed, ‘You will school this child too because you won’t be able to trust the local secondary school due to its shit Estyn inspection. But at any stage, you won’t know how successful your own schooling is likely to be.’ With brutal advice like this, the celestial administrator was clearly a woman. Perhaps even my mother.

It’s hard for me to write about Delphine. Partly because she is, of course her own person and I don’t want to put words in her mouth. Also, I fight with myself for being protective. Number one; the cerebral palsy is hers, not mine and number two; writing about it might pigeon-hole her. It may stereotype her. All these uneasy thoughts come into my head staring at a white screen. I want to write but my stomach is busy exploring the corners around the room.

And yet this is our life. Delphine and I spend every day together, working, laughing and struggling, often at the same time. We sometimes stare at each as if we are caged animals hoping to escape. Writing about Delph is therefore about as natural as it gets. Do we fight? Yes, but never in an offended way.

She said to me the other morning, ‘I hate you.’ I’d been trying to get her to clean up her toys.

‘I hate you back,’ I replied straight away. Her response didn’t even make me a tiny bit angry. Any other kid (you included, sorry Lu) would have made me steam but Delphine doesn’t often make me mad in this way.

Don’t get me wrong; there are all sorts of other painful moments. There are moments of dread when I watch Delphine spelling words on her own and there are fumes of frustration when I’m trying to get her to read. Oh yeah, she’s disappeared again. How can someone hide this effectively in a one-bedroom bungalow?

Most scarily though is the self-doubt. After the mornings finish, that is. Self-doubt usually kicks in to my house around lunchtime which is comforting to know. Even self-doubt has its own routine. But boy, when it kicks in… when it does, I have no way of knowing if I’m doing the right thing. None.

‘Don’t worry,’ says the heavenly administrator, ‘I’ll be the first to tell you.’

 

 

 

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