Read this and see what a day in a child’s life who has an invisible disease. We need to find some changes and compassion.
I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.
I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.
I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.
I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer…
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