J. stands up to see the light

For my little clients who have profoundly disabling and multifaceted conditions, growth and development takes its own unusual path. I've learned to just regard developmental milestone lists as better for screening potential problems in a selected group of children (such as "all well-baby checks in our practice") than as guides to sequential development. I understand the theory that development progresses in orderly fashion...but have too much experiential wisdom to not raise a skeptical eyebrow.

I went by J's home the other day to drop off some paperwork for mom. J is a four-year-old client I've known since birth. I haven't seen him in a few months except for a very short visit in a doctor's waiting room. The last time I saw him he was sitting up comfortably in his wheelchair, banging on the tray with a toy while vocalizing (loudly!) and enjoying the heck out of the racket he was making.

J has a congenital brain defect: a kind of neuronal migration disorder that is rather rare. When he was born, his mom was told he would "probably" die before age 7. He would not walk, talk, or feed himself. He would not see. He might not hear. She had the opportunity to admit him to our local "home for disabled children"---but she declined.

Now, if this was a fairy tale instead of real life, I'd tell you that J can do all of those things he wasn't supposed to do. But he doesn't. However, this list of deficits in no way defines J.

Laughing defines J. Banging stuff. Working and worrying his shoes until they are off. And like a sunflower, finding the source of strong light.

When I went in for a few moments to visit with mom, there was J---standing up at the couch and leaning toward the bright sunny window.

J pulls himself up to a standing position, if you give him a source of bright light to reach for.

On the outside, if you concentrate on that, you will see a little boy with an oddly shaped head and unfocused eyes; a head-banger who has to wear a helmet all the time, who is G-tube fed and incontinent and has seizures; who speaks no words and listens only to some internal music we are not privileged to hear.

But from inside, J experiences life as bright light, soft couches, and a mom who likes to kiss him on his neck under his ear because it makes him squeal with laughter.

Maybe there's a lesson in that. Meantime, I have to tell you I am enjoying thinking about J at the window in the bright sun.

mary