When I first sat down with Avery to talk about her upcoming surgery, I wasn't sure how she would take it. She likes doctors, but blood tests and the like get her quite upset, so I was concerned that she would be begging us not to make her go through with the surgery! I was really hoping that would not be her reaction, because I didn't want her to feel as though we were making her do it to be mean, you know??! So I was very careful to explain why she was going to have this particular surgery, and how it would help her. It was a blessed relief to me that it went over very well!!! Avery was actually rather excited about it!! I even had to tone her excitement down a little but, because she was saying things like, "After my surgery, I'll be able to walk all by myself! Without my walker, or my quad cane, or my wheelchair!!!!!", so I had to explain to her that it wouldn't be quite like that! I don't want her to be disappointed when she wakes up from the surgery and can't run out of the hospital.
In the past week or so, Avery's enthusiasm has dampened a little bit. Now that it's "this month", and we're counting down the days rather than the weeks, she has started to feel understandably nervous. We were driving home from her last swimming lesson last week, and she was telling me that actually, she didn't want to have her surgery until she was six. I asked her why, and she didn't have an answer. So I asked her if she was feeling a little bit scared or nervous. She said, "A little bit." She needed reassurance that she was going to be asleep for the surgery. "For the whole time, Mom? So I won't feel it at all?"
A couple of times recently, she has been trying to show me that she doesn't need to have surgery. The other night as we were getting ready for bed, she was showing me how she could walk up and down the space in between her and Brogan's beds. She'd stand up and take tiny steps from one end to the other - holding her arms straight out to the sides for balance, concentrating with all her might, using every bit of determination she had to keep herself from falling over, and briefly resting a hand on one of the beds as she wobbled. She actually managed to take 12 baby steps from the head of the bed to the foot of the bed at one point - her record in fact - before she had to steady herself on the bed, and then took two more steps and declared that her bed was 14 feet long because she measured it with her feet :) She'll do things like that and say, "See? I don't actually need to have surgery because I can take steps!" When we got back to the bedroom, I was sitting on the bed waiting for her so I could read her a story, and she tried to stand up and take some more steps, but Oliver was sort of in her way, and she couldn't step around him because she would have to lean too far to reach the bed, so she sat down on the floor and got very sad. It was the saddest I think I've ever seen her feel about her physical limitations. She said, "Ohhhhhh, now I'll never be able to walk to my bed again!!!" Now, it is not unusual for Avery to be a little melodramatic - if she gets poked in the eye, she'll declare that she'll never be able to see again - but this time she was genuinely unhappy. Tears welled in her eyes a little bit, and her whole body sagged to the floor. I scooped her up and sat on her bed with her on my lap, and she wrapped her arms around my neck and asked me, "Why??? Why does my brain tell my legs to do wrong things??" My heart was breaking for her as I tried to explain how she got sick before she was even born and that it damaged the parts of her brain that controls the muscles in her legs. She was so sad.
Avery's perception of herself is maturing. It used to be that she thought that everyone had a shunt. Even after she was aware of the fact that other kids her age were up on their feet and running around, she still thought that all she had to do was grow up, and then she'd be able to do all those things. On occasion, she has seen pictures or videos of people snowboarding or surfing, and she has told us that when she grows up, she'll be able to do that too. I think she is starting to come to a realisation that not everybody has to struggle and work the way that she has. I do not think that she quite realises everything about what makes her unique, but she is developing a clearer picture of herself in the world. It used to be that when other children asked her why she needed a wheelchair, she would say something along the lines of, "Oh, I can walk with my walker - my legs aren't broken or anything, but sometimes my legs get tired." 2 or 3 weeks ago we were out somewhere, and a little boy asked her why she was in a wheelchair. Avery was apparently not in the mood to deal with his questions, so I answered for her, in the way that she normally does. I said, "Her legs just get tired sometimes." Avery then piped up and said, "Actually, no, Mom!! It's because the muscles in my legs are tight!" I think there was even a frustrated sigh in there somewhere, as if I was being a little bit idiotic!! :)
One thing I will tell you. In that moment on her bed as I tried to comfort her, I was so grateful that I was able to give her the SPML surgery to look forward to! She needed something to hold onto, and I was able to tell her that, while it would still take a lot of work and practice after the surgery before she would be able to walk by herself, it would be less difficult for her to move her feet and her ankles, and that would make it a little bit easier for her to learn how to walk.