I was looking at the news letter Ayden Jane's teacher sends to us at the beginning of the week so we know what she is studying or doing that week. One of the things mentioned was a diary entry of sorts about an important event in her life.
I asked Ayden Jane if she had any important events. She said not really. Maybe going to a big soccer game of Mckenna's? I told her I could think of a lot of important events in her life but most of them she would not remember. Things like getting the ng tube out and eating all on her own so she could come home from the hospital. We talked through a few ideas.
Mckenna looked at me as Ayden Jane was talking. We were both very intrigued by how unphased Ayden Jane was about things that we understand to be HUGE. I mean... dare I say Pitolisant? There is a cluelessness about her in regard to what she has accomplished.
I teased her and suggested maybe the day I found and made a chocolate cake for her birthday was important. She told me, "mom, that's not important. That's just food." Now there are some unique words to come out of a kid with PWS.
In the end, I really have no idea what she will pick. Likely, it will be something unrelated to PWS. Maybe, somewhere in that brain of hers, she doesn't want her important thing to have to involve PWS. I mean, she doesn't really want to be that kid with a rare genetic disorder. She just wants to be Ayden Jane - the nice kid who wants the best for everyone.
Obviously, I will want to read it when she is done!! I am really curious about what goes on inside that noggin of hers. Maybe getting her to write things like this is a way to find a window into her thoughts. I also need to learn to talk less and ask better questions. Patiently listen and not redirect or correct details or fill in pauses.
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