It's truly amazing, the things that come out of Hannah's mouth. On the one hand, I am so grateful we have created a comfortable enough space for her to share her thoughts/fears/questions/anxieties. On the other hand, it is hard to hear her say some of the things she says and not burst into tears. I'm so in awe of her maturity and sensitivity, and hopeful it will help her navigate what will surely be harder times ahead, as she faces some of the challenges of being a person with a disability in our culture.
I'm not sure what precipitated this most recent round of "deep talks with Hannah," but my guess is that it might have something to do with our experience at the pool the other day. We were walking into the pool area and making our way over to the shallow "wading pool" with Isabelle and Hannah and her PT. In the pool already were 3 very curious girls, probably ranging in age from around 6-10. They were openly staring at Hannah as she walked to the edge of the pool with her walker, watching closely as I then helped her into the water.
I "took the plunge" so to speak and pasted on a smile, looked right at the girls, and said, "Hi, this is Hannah and her sister, Isabelle. Are you checking out Hannah's walker?" (They nodded). "She uses it to get around because her legs move a little differently. Have you guys ever seen anyone else use a walker before?" (They shook their heads.) "Well, it's pretty cool because it helps Hannah get to wherever she wants to go." And then I turned back to Hannah and said, "Right, Bug?" and then helped her get in the water and over to the other side of the pool.
That afternoon and every day since then, Hannah has repeatedly asked me things like, "Are you glad I have a walker, Mommy?" And "Do you still love me even though I have a walker?" OK, take knife, insert into heart. Pull out, and repeat.
She's asked, "How did you find out I needed a walker?" And "What did you do when you found out I needed one?" And "Will you watch me walk in my walker so you can see how I walk?"
So clearly we've moved from the "I have a walker to get around and that's okay," stage that we were in a few months ago, to the "I have a walker and am not so sure it's okay," stage.
She has also said, "I'm different from the rest of you guys-you don't have a walker, and Daddy doesn't have a walker, and Sam doesn't have a walker, and Isabelle doesn't have a walker." And, "I know it helps me to get around, but it frustrates me that I need it and no one else does." And, "But all the things I am doing with Kim (PT), and at the Rehab Gym (other PT) and stretching, and everything else are helping me to get stronger so I won't need one, right?"
She's even gone so far as to say, when I asked her what made her think about these things so much right now, "I just feel like it's my fault that I have to use a walker."
OK, so here's where I am launched from mom turned expert in physical therapy into mom turned expert in child psychology. I would love to know how others have handled these kinds of questions with their kids, but here are some of my thoughts these days, informed most recently by Kathie Snow's keynote address at a conference I attended:
- I do not want Hannah to think she is broken, that this is her fault, that she did something wrong and that she needs to be fixed.
- I want Hannah to know that she is like a puzzle made up of many, many pieces. Her walker and her disability are one tiny piece of who she is and there are so many other pieces to her, pieces that have so much in common with other kids and the other people in our family.
- I'm no longer going to say that her legs "don't work as well as other people's." Instead, we say "they work differently."
- I'm going to be careful not to make Hannah think that she goes to therapy to get fixed and that if she works hard enough, she will be fixed/cured/no longer have a disability. Instead, the goal is to give her all of the tools she needs-a walker, a ramp, extra rails on our staircase, physical therapy-so that she can do the best she is able to do with the beautiful body she has.
- I want to focus on all of the things Hannah CAN do, not those she can't.
- I want her to be included as much as possible in everything at school, at home, and in our community. If that means doing it differently, I want to explore ways to do that.
Oy. It's enough to bring on a serious case of agita.