I want Carys to tell you about Rett Syndrome, I want her to tell you more than anything, because that would mean she could talk, but she can’t.
I want Carys to write about it, so you can read what she has to say, but she can’t.
I want her to point at things to tell me what she needs, but she can’t.
She can’t nod her head properly, she can’t point at letters, she can’t sign or type.
She can’t tell me if she wants to dress up like a princess, she can’t tell me that she wants to play with dolls. She can’t form the words to tell me these things.
Does that mean I don’t know her, or know what she’s trying to tell me? When I give her Christmas presents and she smiles and giggles, am I imagining that she’s happy with my choice?
Carys is not even my daughter and I know what she’s saying. I know she hates when I put sport on the tv instead of Handy Manny, she doesn’t have to tell me, or write to me, she only has to look at me.
I know she doesn’t want anymore of the banana bread I made her, because she closes her mouth and frowns at me.
I don’t need Carys to say what she loves or hates, because she says it just as eloquently as I do, with her actions.
When my father died, I didn’t need him to tell me he loved me, because his actions throughout my life proved that he did.
How do you communicate with someone who can’t speak, sign or write? You do it by learning from them, you do it because you don’t need ears to listen.
Just because someone can’t speak, it doesn’t mean you stop listening, it means you try harder. You spend your life putting words in their mouths, because you’re trying to associate meaning with action, because at the base, you are learning a new language.
I learn what Carys says by the consequences of my actions and the lessons are quite easy, it just means I need to be aware.
A word exists for this form of communication, empathy.
I will never apologise being positive, I do what I do because I’m positive we will find a cure. My message is positive because I believe you get lead by your tone. That is how I work, it’s my nature.
Life is not just shit, and I won’t shut up and get by, I won’t because if a little girl who can’t talk and walk can muster the courage to smile and laugh to let me know me when she’s happy why can’t I be lead by that example?
I don’t need Carys to say she loves, she tells me every time she cuddles me.