Rachel’s World

Longing for the little things others take for granted


| November-December 1995


“Rachel, look who’s here—Daddy. Say hi to Daddy.”
“Hi, Rachel. Good morning.”
“Rachel, say hi to Daddy.”

She doesn’t say it. She never says it in the morning, although she occasionally does at other times. She’s clearly excited to see me still here. I can tell she’s excited because she’s dancing around on her toes with her elbows straight out, waving her forearms in the air, like she’s trying to shake water off them. She looks sweet in her pajamas and her excitement. But that dancing and hand shaking is one of the things kids do when they make fun of kids who have retardation.

I don’t usually think of Rachel as looking or acting as though she has a disability. Maybe I just don’t notice, because she’s Rachel. When she was a baby and swollen from her seizure medicine, my wife and I told each other she was beautiful and we saw that she was. Now it hurts to look at those pictures, because her flesh looks like it’s trying to burst out of her skin and her eyes are listless. Of course, now she really is beautiful.

“Rachel, are you ready to eat breakfast? Say hi to Daddy.”

She doesn’t say it. She doesn’t look at me either. She does look at me sometimes. She takes my head in her hands and looks directly into my eyes without holding anything back. People who aren’t used to her can’t take it. It’s the kind of searching look that lovers and long-separated parents and children give each other in novels and movies, a warm, lively look that makes you feel special and glad to be alive, but it’s so intense and searching that after a while you are afraid that you can’t give her what she is looking for.

For a long time, she wouldn’t look in people’s faces. It was those eyes that first made us wonder if something was wrong with our baby. Then, for a time, she was willing to look into dogs’ faces, but not people’s. By the time we got a dog for her to look at, she was more interested in people.