But I love the bones of you, that I will never escape.

I love the bones of you.
I love the bones of you.

I spoke to a Tarah last week; she asked me to make an image for Julia out of a photo she shared with me, she said. “I want you to be her voice, and tell me what you see.”

I’ve been doing this for a while now, but most of the time people send me their photos to add to a specific album, so I rely on them to interpret their meaning for themselves, but Tarah was trusting me to translate.

A little bubble of panic flitted through me, what if I got it wrong? This is the most important person in her life, I can’t get it wrong.

I can’t promise to be right, I’m fallible, I’m human, I make loads of mistakes (mostly spelling, sorry Grammy). I’m passionate about this, it means I sometimes come across as aggressive, sometimes I am aggressive.

I know this, but I also know that I do this for the right reasons, I do this because I care. I care about Carys, and every single child I’ve met. I care about the girls and women I get to know online, I care about their families. I care because I empathise, I know the pain that my friends go through, I know that some days are just so bad you can’t even remember putting one foot in front of the other. Some days are so hard that it just feels like life is relentless, I get that.

When I see messages of pain from friends, I struggle to say things, because I can’t find the words to console them, because in all honesty, sometimes I also want to just sit here and cry. I want to cry at the injustice of it all, cry at the fact that not only are you dealing with Rett syndrome, but you’re dealing with a system that seems like it’s designed to make everything even harder.

I’m rubbish in those moments, because I feel that in those moments you need me to be there, and often I can’t be. I want to, but I’m miles and miles away. I want to fix this, but I can’t.

We all have those moments, they suck.

What if I got it wrong?

I have an acute understanding of what I can’t do, but it means I also know what I can do. I can make pictures and tell stories, both of these have the power to help, in big ways and in little ways. In little ways I can make you proud, I can bring a smile, I can translate stories into something everyone can understand.

In big ways we can share things, they can go viral, we can generate awareness. Especially if we work together, because together we’re Stronger. That’s hard, I’ve discovered how hard, it’s also not part of this story.

What if I got it wrong?

I looked at the photo of Julia and the panic subsided.

It was perfect, engaging, beautiful. They always are.

There’s been some discussion about putting words in the mouths of girls with Rett syndrome, the truth is we spend our lives learning how to be their translators. Yeah things like the Tobii are making a difference, but every parent or sibling of a child with Rett syndrome has been putting words in her mouth for as long as they’ve been together. It’s how we educate ourselves to her needs and it’s experience that teaches us.

How do I describe my relationship with these girls and women? It’s kind of like getting a beautiful gift, but the more time you spend with it, the better it gets, the more beautiful it gets, until at some point you wonder how you ever lived without it.

She’s like an emotional lodestone, she amplifies you, so just a little smile makes you soar. The smallest look is like you’ve won the lottery, because you can’t take a moment or an interaction with a girl with Rett syndrome for granted.

Acknowledging is sometimes the hardest thing she can do. I know with Carys I have to be patient as she fights with Apraxia, with Melody I have to be patient because she’ll ignore me for the first ten minutes to punish me for not being there sooner. With Sophie, I just have to hope that Lucy is not in the room because none of the smiles are for me 😉

What I’m also saying is that all these girls are unique, they all have their own distinct personality, they also have their way of telling you when you’re doing something wrong.

Julia has magnificent eye contact with the camera, and her eyes are truly windows to her soul, like every person with Rett syndrome. What is Julia telling me? Well she’s telling me something I already know, she’s telling me that she’ll make time for me, if I make time for her.

In her happiness she brings serenity, peace and calm within me. Her smile enlightens, frightens me, in her complexity. Who ever imagined saying nothing could say so much to me.

In this picture she’s telling me that she loves the bones of you Tarah, that you are her everything.


 

I chose the lyrics of an Elbow song as the title for this. Tarah and I regularly talk about and share music and I thought it was fitting that my favourite band titled her precious Julia.

 

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