What I See When I Look at My Daughter With Rett Syndrome

When I look in to my daughter’s eyes, I see her. I mean, I really see her.

Her soul is dancing. She’s leaping around listening to her favourite Vamps song.

She spins as she giggles, her long hair swooshing as she turns.

Her eyes light up the room as she floats from person to person, getting them to join in with her.

She’s cheeky, she tells jokes, she has the most incredible sense of humor. She loves slapstick moments.

She’s girly with a boisterous side. She wears nail varnish but climbs trees. She plays with Barbie but loves football.

She’s caring, she gives the most, loving cuddles. She plants kisses on sad cheeks and turns them to happy ones.

She has an answer for everything but has such a cheeky way of doing it that even the strictest of people snigger.

She helps me cook the dinner and make the cakes, licking the bowl with that cheeky face grinning up at me.

She runs into our room in the morning and jumps straight on Mummy and Daddy, giggling and so full of life.

When I look at my little girl, I hear her. I mean, I really hear her.

Her voice is soft and gentle as she says, “Come on, Mummy,” with that gorgeous smile in her face. “Dance with me, Mummy.”

We are dancing. We are spinning. We are laughing.

We are running into the garden as she leaps on to the trampoline “Look at me, Mummy”

She does well at school and tells me all about it. “Look what I did, Mummy, look what I made, Daddy!”

We hear you baby, we hear you.

This is her. This is Lily. Except her body does not always obey her brain, and one day, her body may fail her.

I constantly share, fundraise and ask for help because I have to. She’s my little girl. I think everyone I know would do the same if they had been told a cure was their only hope.

I constantly pray for her to hang on in there and stay strong. We need her. She’s a part of us.

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Thinkstock photo by RonTech2000