A bed time moment. Her hand on my hand. A small gesture with such large significance. Time paused and we spoke a week of words just with our eyes. It’s how she talks, so she is an expert, but this was particularly adept even for her. I didn’t want to break the moment so I tried, with limited success , to vent air out of her PEG one handed. And still her hand lay so gently on mine.
Picture the romantic scene where Jack holds Rose on the bow of the ship her arms wide. Now imagine pushing a wheelchair through a doorway with those Titanic arms flying. This is a child whose muscles treat her brain messages as spam. She has to fight to have them read. Tonight her stiff arms softened and as I put my hand on her tummy she lightly put hers on top. Then the conversation began.
This week has been difficult. She has been very sad. Usually her skill in talking with her eyes serves her well and she can use her book to clearly communicate what’s wrong. But not this time. I have been wishing she could speak her words and make me understand. Tonight she did. Without verbalising she held my gaze and said it’s alright. A pretty little face looked at me with such a pure and open heart that I could see all the way into her very old soul. A weeks worth of tears melted away under the sunshine of her smile. It was a matter of moments. Exactly what life is made of.