This is Good Work: Claire Update

Claire is in the middle of lots of good, hard work right now. Her hour-long physical therapy sessions start with several minutes of stretching. We’ve surgically lengthened her hamstring and Achilles tendons and still there is a daily fight against her body’s natural tone that pulls and tightens muscles in her leg (and arm, but that’s another day’s battle). We noticed she wasn’t being able to pinpoint where her pain was coming from and realized this is probably yet another issue with the way CP works on a body: the brain-to-appendage connection is damaged, so messages just don’t get where they are supposed to go at the right times.

After stretching, the games begin. She plays washers or Don’t Spill the Beans or dominoes, all of them just fronts for the real work that her therapist is doing with the way she asks Claire to stand or lean. Squaring hips, stretching flexors, and bearing weight. The funny thing is how often I’m surprised by what her body can’t do because of how well she compensates in daily life. Her therapist was the one to notice the way she didn’t extend her left (troublesome) leg behind her in her stride. When asked to isolate those hip and butt muscles in an exercise, she barely has any strength in them at all. To walk, she has figured out how to over-use and contort the muscles that respond to her. It isn’t always pretty, but it gets the job done. In therapy, the PT does a kind of deconstruction, finds the holes and the manipulations, and addresses them head on.

Most sessions include extended time on the treadmill. There is usefulness in the quick repetition required of her muscles when the ground is moving under her feet. The therapist adjusts speeds and inclines to find a spot that produces the best gait. We work from there.

At the end of her time, she usually gets to choose a fun activity. The indoor zip line is a favorite. Another is a contraption called a Pedalo. By the time we leave, she’s feeling good but tired. At home we try to follow a routine of daily stretches and strength exercises. Sometimes I try to sneak a stretch in while we’re standing in line at a restaurant or store. That doesn’t always go over well.

One of the tough things this go-around is how much more aware of other people she seems to be. She’s worn a brace off and on for years, but it’s been several since she’s worn it daily.This time, though, she isn’t as likely to want to run in with me at the store or take the dog for a walk, and it isn’t because she isn’t able. “I just feel like everybody is looking at me.” I remember feeling that way when I was 11 and probably no one actually was. In her case, they usually are.

So she works. Strengthens the parts that are weak, stretches the parts that are tight, coaxes the non-responsive parts into action. It’s good, hard work. I’m incredibly proud. Sad, some days, that it has to be her this way. Sad, some days, that I’m filling my Instagram feed with filtered shots from the Rehabilitation room at Children’s Hospital instead of a beach vacation. But thankful, every day, that she’s mine. Thankful for what she’s taught me about what it really takes to be important and special (hint: none of the things I would have told you before Claire). Thankful that when I think of Claire, the analogy of Christ and the Church as a head and a body makes more sense in a practical way for someone still being surprised by how tough and how great this faith community thing can be. This isn’t perfect. It sometimes looks awkward. But the beauty isn’t in an elegant, flawless product. The beauty is in the trying. The beauty is in the being. The beauty is in the work.

 

“Going”

I Instagrammed this image of Macy’s homework a few weeks ago. After she had carefully traced the outline of this word she was searching for, she asked me if they would let her do it this way. I said no. She sighed and declared, “Well, they should,” even as she flipped her pencil over to start erasing.

I was surprised by her recognition of a very real yet ambiguous THEY. For Macy this was some combination of her teachers and maybe the creators of the word search. But maybe it was larger too. Maybe she was asking about the world in general. What are the rules? And who is enforcing them? Or if it isn’t really about the rule, maybe it’s about the standard practice, the status quo. How is this done? In essence, what is expected of me and am I measuring up?

The other thing I noticed about Macy’s reaction was her resigned reflex to begin erasing. Even though she felt like it should be okay. Even though she had worked so hard to find that beautifully creative and clever solution to her search. She started erasing.

And in the moment, I let her. But as I’ve been thinking about it since, I wish I had told her to leave it. Her teacher would have had a good laugh over it, and eventually Macy will run into enough word search puzzles to figure out the rules. We need rules. But maybe we’ll get lucky and she’ll keep finding new ways to solve the problem, despite unwritten expectations. Maybe she’ll keep going.