Monday, March 28, 2011

Kinship and Perspective

I was chatting with a friend at aquatherapy Thursday when an older lady came up and started to make conversation. She made for quite a picture with her thick, black rimmed glasses, black velour sweatsuit, and jet-black hair tied in a floppy knot on top of her head. She was speaking to my friend, whose son also has special needs, and I heard her ask if he was hydrocephalic. Partly because of my judgmental streak and partly because it's just been true in my experience, I thought, Oh great, here we go. Another nosy old lady trying to figure out what's 'wrong' with our kids. I turned my attention to Collin, who was kicking major butt in the pool, and before I knew it, she had sidled up to me.

"Is that your son?"

"Yes, it is."

"Is he hydrocephalic?"

When I looked up to answer her, I thought I saw something in her face that I vaguely recognized, but I couldn't quite place it. "No, he's not."

"Is there something wrong with his neck?"

"No, his neck is fine."

"Then why can't he hold his head up?"

Deep breath. "He has very low muscle tone, so he doesn't have the strength."


We stood there for a minute, watching him splash.

"Well, I just ask because I had a baby who was hydrocephalic." My eyes shot up to her face, and there it was - that thing I couldn't put my finger on before. That undying longing to find someone who understands. The simultaneous dread and excitement when you think you may have come across someone whose situation matches your own; dread because you hate the very thought of it happening to anyone else, and excitement because there is an instantaneous bond that springs into being when you meet another parent of a child with special medical or developmental needs. I know others have seen the same look on my face in waiting rooms and grocery stores as I try to figure out not what's 'wrong', but whether we share that kinship.

Her baby had died. Thirty years ago. She shared with me how happy she was that 'they' know so much more now and can do so much more for babies with all kinds of issues. And then she was gone.

It's a sobering thought (like I need sobering) that in any other time in history and in many places in the world during our own time, my son would likely not have survived the first weeks of his life. And as I watched him shrieking and laughing and kicking in the water, I felt utterly overwhelmed with joy at his robust health and wild happiness.

1 comment:

  1. Thanks for this one. I cried. You are beautiful.