I had been afraid that she’d lose some of her skills from the effects of the surgery. Well, being who she was, she had a surprise for us. I had brought various soothing tapes to the hospital and had them playing during the long days she slept after the surgery. On the second side of a tape my mother had taped some stories told by Pete Seeger. As she woke up I noticed her listening to the tape. I found some other taped stories and tried them. She was glued to them. I couldn’t believe it and thought I was imagining things. As other people visited I put the stories on and once again she clearly focused on them and listened attentively. People started telling me that they could tell she was listening too. I wasn’t imagining it! This little girl, who was in so much pain and supposedly in a “vegetative” state was listening to stories! Listening to taped stories became the ticket to comfort for Kayda during her long recovery.
During the weeks and months after her surgery her love for stories grew and I got busy finding and taping stories for her. We discovered the Classical Kids series by Susan Hammond. I first brought home Beethoven Lives Upstairs. She seemed to like that so I found a few more at the Library. I still remember the night I put on the Mozart story which was called the Magical Mystery. It was bedtime, but she was clearly fascinated by the story. I can’t tell you exactly how you could tell she liked the story. It was something in her eyes and the way they flickered and focused on the story. For the first time, I let my little girl who was supposed to be a “vegetable” stay up late to “read”. I quickly learned that she didn’t like all stories. Not even all the Classical Kids stories. She loved the Beethoven, Mozart, and Vivaldi stories but didn’t like the ones about Bach or Tchaikovsky. I don’t know what it was. I do know that the Bach & Tchaikovsky ones were more just talking rather than an actual story with a beginning and an end. I remember one time she showed this with great delight. Throughout the time Kayda had been with me a nurse that had known her since she was a baby had been in our home frequently, usually to train new caregivers or work on her healthcare plan. Early on, I had commented a few times to this nurse about things I thought Kayda was doing and she’d say “well, you know Barb, she’s really low functioning” ie; you’re imagining it. This one day though the nurse had brought a nursing student out to talk to me about what it was like to care for a child with multiple health care needs. Kayda was in the living room listening to the story about Bach. She kept fussing. I went over to her and said “oh you want to hear the Beethoven story, not the Bach story” and turned the tape over. Kayda was quiet and happy from that minute on. The nurse was very impressed and she told her student that she now uses Kayda as a very good example of why parents should never take the dire predictions of Doctors literally. Even for a child like Kayda there is hope.
There was one change in her behaviour after the surgery; her previously active hands lay still. There was no exploring textures or fiddling with toys. It appeared that the pain from the surgery took up all her energy. That’s why stories became so important to her. It took her nearly a year after this first surgery for her to start exploring with her hands again. I found that sad.