5 am

The “look” when strangers see Missy in her wheelchair is familiar now. It is part sympathy, part curiosity and basically says having a kid in a wheelchair would be the worst. But it’s not. There are challenges, for sure, and I do wonder if she longs to run and play but overall the chair is ok. The lack of talking though…that’s what gets me.
Missy manages incredibly well with her PODD book and her voice output Dynavox. The hope of assisted communication is more than simply conveying wants and needs…it is about showing yourself. And she does that. Her sense of humour, her intelligence and her curiosity all shine through. The device, though, needs to be set up so she has to be in her wheelchair. The book requires a competent communication partner, good light and an alert kid. Neither of these work for her at 5 am. At that time, and in pain, she needed to be able to yell “Mum! My leg is stuck”. But she couldn’t.
She got my attention alright. I went to check on her. But I misread her. I didn’t understand. I put another blanket on thinking she was cold. So she stayed as she was…for another hour. There was no yelling. No desperation. She sounded a bit sad. Even when I went back in I tried several tricks. “Do you have a headache? Is there air in your tummy?” I vented her PEG, I gave her some water and finally I pulled her blankets back.
The sight still puzzles me. A leg should not be at such an angle. I don’t know how she did it. The relief when I gently moved her leg was immediate. It didn’t seem to be a sudden reduction of pain. What I saw was the relief of being understood. And that says everything.


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