Today as I drove Amaya to school we talked a bit about her upcoming surgery. I was surprised by how calm she seemed. She had some questions and I tried to answer them as honestly as I could. She wondered about her fixator (What color will it be? How big is it? Will it work? Can she bend her knee with it on? Can she swim, walk or run with it on?). She also had questions about her hospital stay (How long will she have to stay in the hospital? Will Lidie be able to visit? Does she have to have an IV again? Who's going to stay with her?). And questions about the lengthening process itself (does she have to get x-rays? How long will it take? Does she get to use a wheelchair again? How often does she get to do physical therapy? Will it hurt?).
There were a lot of questions and I was happy to answer them for her and try to help her understand what is in store for her. Her calmness and understanding made me happy. It's funny, her biggest concern was other people. "Will people stare at me?," "Will they ask me what it is?," "I don't want people starring at me." I explained that most people have never seen a fixator so they'll probably look and wonder what it is. But, usually once you explain what it is, and why its there people tend to "get over it." She accepted that, but added that people still stare at her shoe lift and she doesn't like that either. This saddened me so much. There's nothing worse than knowing that your child has to go out into the world and deal with ignorant, rude, mean people. Even those that don't mean to be rude, don't quite know how to deal with something different. Over the past six years we've had people stare, point, whisper, ask "what's wrong with her?" or "what's wrong with her shoe?" even scold me. It got more intense after her last surgery and once she had her cast on. I can't imagine how much attention Amaya will attract with a fixator on. It's definitely not something I'm looking forward to (for her sake or mine).
Before I dropped her off to her classroom she asked if we could look at pictures of fixators after school. Of course I said yes, and that's exactly what we did. Before bed I showed her pictures from the Dr.Paley's limb lengthening page on Facebook, and several blogs (thanks again to the other parents who have posted blogs). The pictures were helpful and comforting to Amaya. It's nice knowing that others have walked in the path that you will soon be on. When we saw a picture of a boy crying during his pin site cleaning, she was a bit worried, but we talked her thru it. And when she saw a boy's scars from where the pin sites were (I was so afraid this would freak her out or scare her) she was relieved that they were so small in comparison to her other scars. After awhile she asked to see her blog (she seemed surprised and happy that so many people have read her blog, so thank you all for reading!)
My little ham asked, "Mom, can you take my picture for my blog?"
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