Mad scientist hyphenate / Producer
A blog written by my wife, Jenny. She is smarter and funnier than I am, so enjoy.
When I wake up everyday, I usually pause, take a breath and hope for the best. The truth is we really don’t know what each day will bring. Will Maggie’s arms be out of control today, will she stop wringing her hands, will she speak some words? We just don’t know. There are days that are way harder than they should be, but then most days are relatively fine. Its all relative, right? We are learning to live in this place of special needs. It is a harder place to live because it’s not the typical and the world really is built for the typical. Even the kindest of people will find themselves staring at Maggie wondering what is going on. Maggie’s Rett syndrome really shows itself through her arms and her inability to speak. We are learning to ignore it. But we are also learning to embrace it.
I wake up everyday and feel like I’m married to a brilliant mad scientist, and comedian. AJ usually gets up and likes to get Maggie out of bed and most days he is trying to figure out how to help her control her arms. I go in to help him – he doesn’t need me (and most days I think he prefers I stay out of his way). Everyday there is a new contraption that has been MacGyvered to Maggie. There is usually medical tape, velcro, tiny weights, spandex, neoprene, hair bands, and whatever else AJ thinks he can rig to help Maggie control her arm waving and hand wringing. This might sound like he is torturing her, but she thinks it’s a game. If she is annoyed she lets us know. She will stare us down disapprovingly, or yell or cry. Of course if this happens we quickly remedy the situation. Most of the experiments don’t last long, but I know one day he’s going to build a contraption that works and all of a sudden. He will be an inventor. So while all our friends are talking about their new show ideas, AJ will be sharing his new idea of the arm brace that doubles as a rocket ship, so Maggie can go to the moon.
Was Thomas Edison married? I wonder if his wife thought he was obsessing about this new thing he liked to call “Electricity”.
DATE May 26, 2014 CATEGORY Uncategorized TAGS #magnoliashope, #rettsyndrome, coping, cure, diagnosis, feeding tube, hope, Magnolia, rare disease, Rett syndrome, special needs, wheelchair
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