Collin and I colored a picture this morning. Today, that involved me holding a crayon in his hand, scribbling it for a few seconds, and trying to see if I could feel him participating in any part of the process - either the grasping or the coloring - so that I could back off incrementally and let him take over.
Well, let me back up. It's not that simple. Collin was standing in his stander so that he can get weight-bearing on his bones and in his hip sockets; this makes it more likely that he will develop physically in such a way that will allow him to move independently one day. He wore special braces to give him ankle support and provide sensory input to his feet so that his brain can feel that they're there. He was looking particularly almost-4-years-old-ish in his camo pants, purple Buddy the Bat baseball t-shirt, and yellow long-sleeved cheeseburger shirt; under all of this, he had on truck undies because he hasn't had an accident in weeks and his diapers have been falling to pieces by the end of the day from never getting changed. He also had on a terrycloth bib because being upright and looking down at what he's doing makes it really hard for him to swallow his drool since he doesn't have great control over the front of his mouth. Because he can't use his mouth, he also had an extension and syringe hooked to his g-tube, giving him his morning water bolus. I had already done warm, wet compresses and deep pressure on his hands to make his brain more aware of them and let him play in dry beans to get some finger movement going. Even with all of that, he just wouldn't or couldn't grasp this morning. With the exception of a couple of random streaks, he didn't do any of the coloring himself. His vision was on fire, though. He stared at the thick black outline of Santa Claus and every time I held up a new color of crayon for him to see, he found it with his eyes in no time. At the end, when I presented the finished product for him to admire, he pressed his hands against it (the hands he hadn't been using this whole time), took in the entire picture, smiled, and drooled on it and me and himself.
It was so frustrating. And we had a great time.
It reminded me of a conversation Kyle and I had last week. We were sharing some dreams we have for Collin, as well as things we struggle with in parenting him day to day. I said that on the one hand, I feel like I have to fight ferociously and without stopping to give Collin every opportunity to develop in new ways - to push him to become as independent as possible; on the other hand, I feel like I have to accept Collin exactly how he is - to be content even if he never learns another skill the rest of his life. When Kyle asked (somewhat rhetorically) which it has to be, I immediately answered, "I think it has to be both. Both, all of the time."
It's a line we walk. But we don't walk it like a tightrope, trying to keep from falling to either side. We walk it like a kid on the edge of a sidewalk, head down, concentrating, making sure one foot stays high and one low, because if we're not in both places at the same time, the experience is not as good. In this way, we use the line as a guide rather than a boundary. It keeps us on both sides of the paradox - celebrating the good without idolizing it, accepting challenges without giving in to them, longing for more and loving what we have.