Loving and fixing

This older child adoption-thing can be full of the unexpected. We have been working on helping H. develop some muscles. Any muscles, really, at this point we're not picky. Her lack of muscle tone took me completely by surprise when we met her. To just look at her, you wouldn't guess the weakness, but as we live with her and watch her do (or not do) things, we have become more and more aware of the extent of the lack of muscles in her body.

Much of what we do involves just living life. To go anywhere, you have to be able to get in and out of the van. You build muscles every time this happens. If your job is to put the clean dishes away, sometimes you need to stand on a chair. Getting on and off the chair builds muscles. If you want to play with your brothers and sisters, you need to keep up with them. Active play builds muscles. And so does opening your medicine bottle and putting on your clothes and carrying up your laundry and helping to carry groceries and vacuuming a rug, and all the myriad of activities that most people do in the course of a day or a week.

But just last night I discovered yet something else that took me by surprise. Evidently, if you just sit during the day, and no one pushes you to do much else, what little muscle you had does weird things. We had already been working on stretching H.'s Achilles' tendons because they are shortened and the tightness doesn't allow her to lift her foot when tipping back on her heel by more than a half an inch or so. Every evening I help her stretch those muscles and we are slooooowly seeing gradual improvement.

Because I'm holding her feet sometimes to do this, I've been noticing that something just doesn't seem right. They seem so much stiffer than anyone else's feet. It's as if she has wooden blocks attached to the end of her legs. If I tried to gently massage them, she complained that it hurt. I had a sudden idea and asked her to move her toes up and down. You know, when you bend your toes where they meet your foot and it feels really good especially if you've just taken off uncomfortable shoes? Well, she couldn't. Her big toe moved a bit, but the other toes looked as though they had no joint between them and the foot. They do bend, I checked. She just can't bend them herself.

So I had other people show her how they could bend their feet. And then I bent her toes for her showing what I wanted her to do and how it would feel. (Not really good, at first, judging by her reaction.) I asked her to try to wiggle her feet and toes a lot throughout the day. She really wants to please, and while I was reading our nightly chapter book, she sat and diligently tried to wiggle her toes. My gut told me that there wasn't anything physically wrong with her feet, but that like her tendons, it was a matter of disuse. Judging by the slightly increased movement from just that little bit of exercise, I think I'm right.

This all explains a lot. She has a very shuffling gate and it makes doing anything more than walking (even walking quickly) difficult. At first I chalked it up to an endurance issue. I'm sure that had something to do with it, but I think I know what is at the root. I did an experiment and tried walking as though I couldn't raise my feet off the floor by pivoting on my heel and I couldn't bend my toes. Surprise, surprise, I started walking in the exact same way that H. does. If we can keep working on loosening up those muscles, it will give her so much freedom to move and run and play. It also explains why she hasn't enjoyed (at all!) riding the bicycle with training wheels we have for her. Pedaling involves stretching her feet and legs in all the ways that are difficult right now.

Now I have to admit that I feel like the worst mother in the world while we're doing these exercises. She doesn't enjoy it, and complains a bit. For a girl who NEVER complains about anything, even a little complaint is a big deal. I try to explain why we are doing it, but I'm sure I just come across sounding like a Charlie Brown adult because there are just too many words. But I try. And I'm also a little bit torn. I don't want my daughter to feel as though she doesn't measure up and that she needs to be fixed in order to make her acceptable. But the truth is, there are so many things that we can do, either with the help of doctors or just by ourselves, that in the long run will improve the quality of her life. Sure, we could leave everything as it is right now, but would the 20 year old H. really thank us for that? Am I the only one who struggles with this? On some level it does feel as though we're saying, "OK, we brought you here, now let's fix everything that's wrong." The trouble is, it's true, but it's not true. I find it a very sharp edge to walk.

Since we are still helping H. reach her full potential, it is obvious where we have landed in this little conundrum. I have to remind myself that there is a big different between, "I love you, but let's fix you." and "I love you, and let's get you the help you need."