Rachel’s World

“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.

“Rachel, keep the cottage cheese on the spoon. Have you said hi to your daddy yet?”

She doesn’t say it. The cottage cheese is falling off the spoon because she is turning her arm back and forth to admire the morning sun and shadows moving across it. She likes that game, one of her private games that we can recognize, but can’t share. It makes her smile. She smiles her secret smile, the expression that makes you think she has just thought of a mischievous trick, but she won’t tell anybody until she’s played it.

We have a picture of her first real smile. I am holding her in the shower during the summer she turned one. I can see that picture in my mind at any time. That smile brought the sun through the dark clouds for us. We had worked hard to help her, but we didn’t know if we had the strength of character to love and live with a child who never smiled. Some people do. God didn’t require that of us. That day, she smiled and we cried.

Now she smiles a lot, most often if you tickle her or if she’s jumping on her trampoline, riding her tricycle, or doing something else that involves “major sensory input,” as her therapists say. She also smiles sometimes when she hears a funny noise that she likes, like the pig grunting “touchy” in Beauty and the Beast. But she doesn’t smile much at things that make most kids smile, like playing peek-a-boo.

“Rachel, would you like some Crunch?”

“Cwunch, peese.”

She can talk. She likes to use her language for a purpose. She was the star of “meaningful communication” when she was in the special education preschool class for kids with autism. When Rachel “talks,” you know she is trying to tell you something, even if most of the time you don’t know what. We wonder if there are other ways to help her converse that don’t rely on precise control of small working parts, like a tongue and lips. We offer her those other channels, but Rachel seems to prefer barking it out with the spoken word. If she says something often enough and takes the uncomprehending listener by the hand to the place or object, we feel like we understand what she’s trying to tell us. But there are still plenty of times when she repeats herself with enthusiasm and a strong desire to let us know and we just don’t get it. Eventually, she sighs and moves on.

Some parents of children with disabilities grieve continually for the loss of the normal child who might have been. I don’t feel quite that way. Rachel is the child she is, and I don’t think much about who she might have been. But when she sighs and gives up because I don’t understand, then I grieve.

“Rachel, calm down and use your words. Use your quiet voice.”

Of course, she doesn’t always give up when she isn’t understood; sometimes she has a tantrum. It’s often hard to figure out what sets her off, and it’s always hard to decide what to do next. Colleagues and friends who don’t know Rachel tend to say things like “Well, I’ve got a 15-year-old in my house who still has tantrums.” It is not the same. Having thought about this at length in an objective, scientific manner while my blood is racing, my ears are pounding, and my hair is being pulled out of my head, I conclude that there is a fundamental difference between a “regular” child’s tantrum caused by hunger, fatigue, or a fine sense of dramatic manipulation and Rachel’s tantrums caused by her rage at the world’s failure to understand her or explain to her why she can’t have what she wants. Then again, maybe it’s just a 2-year-old’s tantrum in a 7-year-old body.

“Rachel, Daddy is leaving. Can you say bye-bye Daddy?”

She doesn’t say it. She doesn’t really even look up when I leave, although I’m told that she sometimes runs around the house shouting, “Daddy! Daddy!” after I’ve gone. Some friends and acquaintances think we’re heroes for “all we’ve done” for Rachel. Others would rather not think about it at all. I don’t feel like a hero, because I didn’t volunteer for this job. Most of the time, I’m not sad about Rachel because she learns, loves, and is often happy. But sometimes, in the morning as I prepare to leave for work, I hope that she will say “Hi, Daddy.”

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