Did that get your attention? It got mine this morning. Maya said this to one of our dogs as she used her new gait trainer to walk to the kitchen for breakfast. It was her first time doing this! I typically give her the option to choose her mode of transportation; crawling, wheeling in her chair, standing while wheeling, or walking. Today was the first time she had chosen to walk there. I think her success and joy in taking her 100 steps for CP this past week inspired her to choose walking today.
I am being very careful not to push Maya too hard about walking. Walking requires much energy and effort on her part. If she isn’t successful, or if she doesn’t find some joy and personal gain from walking, she probably won’t continue if given the choice. That’s human nature. Although it is important for our children to follow our guidance, “for their own good”, because of safety or until something becomes easier and they realize later the importance and value of what we are forcing them to do, this is one area where we have decided pushing Maya may not be a good idea in the long run.
I know that despite her determination and resilience, Maya definitely has identifiable limits. I can tell when she has emotionally crossed a line and becomes discouraged and tired inside, while obeying our wishes on the outside. For several years now I have been carefully observing the line between her feeling inspired versus discouraged and tired. Adversity is certainly a part of being human, but I cannot deny the constant struggle Maya has to navigate her world throughout the day. It makes me keenly aware of how much pressure is placed upon her.
From the time Maya was about a year old I have heard from therapists and from adults with CP, that although parents may have a laser focus on getting their children to walk, the individual with CP may not have the same aspirations. Later on when the person is old enough to make his/her own decision, he or she may choose to use a wheelchair because walking is too hard. With this in mind, I am working on keeping options open for Maya and encouraging her to move, exercise, and enjoy herself as she develops a relationship with her body. For now I really like the benefits I am seeing from Maya learning to walk, but I am going to be ok, and I know she will be too, if she isn’t a “walker”.
So what exactly did Maya mean when she said, “I betcha think I don’t have CP anymore.”? As she explained to our Jack Russell Terrier, Millie, she still has CP but the gait trainer is helping her to take steps and move in a new way. It was thrilling for me to witness Maya experiencing new possibilities in her body, and feeling excited about them. I had just as much joy and pride about Maya’s perspective and what she felt on the inside today, as seeing her take her 100 steps this week.