Orson Card - Lost Boys

This is how they finally found a name for Zap's condition: All through the autumn, every month they had a visit from Jerusha Gilbert, the nurse from the county high-risk baby clinic. Jerusha found on her first visit that everything she normally checked on, DeAnne and Step were already doing. She still stayed her full hour, however, and came back every month; as she told DeAnne, most of the kids she was tracking had fetal alcohol syndrome or prenatal care problems, so it wasn't hard to imagine that the homes Jerusha visited weren't usually the most pleasant places. And because she didn't have to do the usual remedial work, she began to research more advanced ideas that DeAnne and Step could be trying with Zap.

It was Jerusha who first said cerebral palsy. "It's not a diagno sis, of course," she said, "because it never is.

Cerebral palsy isn't a medical term, it's a catchall basket in which we throw all the conditions that seem to be related to some kind of brain dysfunction. The rigid kids, the floppy kids, some retarded, some bright as can be.

Some who walk, some who ride in motorized chairs, some who lie in bed emitting a continuous high-pitched whine the whole time they're conscious, if you can call it consciousness. At some point everybody sort of agrees that this particular condition is CP, and then a certain system takes over. So it's really your decision, you know.

Start calling Zap's condition CP, and nobody's really going to argue with you."

"What if it's really something else?" asked Step.

"It's always really something else," said Jerusha. "The CP label just means that we all agree that we don't know what it is, but the kid needs help with a certain group of activities. And you're very lucky, if you decide that it's CP, because Steuben has one of the four or five best facilities for cerebral palsy in the United States."

"It does?" asked DeAnne.

"On the east side of town. The Open Doors Education Center. A really nice building, too. The city runs it now, but it was originally set up from contributions from the citizens. The parents of the kids with CP went around collecting until they had enough. And that's still the feeling there. The full range of everything- no matter what Zap turns out to need, they'll have it there. And also for preschoolers there's the Daggett Center. They charge, because their support is from foundations rather than government, but it's not that expensive. That kicks in when Zap is two. I mean, if you have to have a kid with neural problems, this is just about the best city in the U.S. for him to grow up in."

Cerebral palsy. Well, at least they had heard of it before. As soon as they had this name for Zap's problems, they talked about it with the kids in family home evening. Step told them about the kid he had known who had CP. "He was sixteen when I lived in Mesa," said Step. " I was about thirteen. He was in the same ward as me. I thought when I first saw him that he was retarded, because he walked funny and his head rolled back and forth when he walked, and when he talked you could hardly understand him. But then I remember standing there in the hall one time-I was reading the Doctrine and Covenants, I think, it was my project right then-and he comes out of one of the classrooms and just stands there near me, and I guess he was so mad that he just couldn't keep it in, he started talking to me. And it scared me, because he was strange, but I stood there and I listened and I realized that I really could understand him if I paid attention, and he was talking in complete sentences, and what he was doing was complaining about how the ward leadership wouldn't let him do anything and it made him so mad. I remember he said, 'They think I'm retarded but I'm not retarded, I get straight A's, I'm smarter than they are, but they won't let me bless the sacrament! They didn't let me be baptized till I was twelve because they wouldn't believe I was smart enough to be accountable.' Of course he was saying all this really slowly, and he had a hard time forming the words, and I remember it was like a revelation to me. This guy wasn't dumb. He was a person. And his feelings were hurt, and I was one of the ones who might have hurt them sometime, because heaven knows 1 had been afraid of him, I had thought he was retarded. But when he was done with his rant about how they wouldn't give him a chance, I said, 'I think you should bless the sacrament.' And I guess that was all he needed to hear, just somebody agreeing with him, even a thirteen- year-old runt of a kid with a book in his hands, cause he said to me, 'Well someday I will."'

"Did he?" demanded Robbie.

"Before I left there, I saw him lurch up those stairs to the sacrament table. Must have taken him five times as long as anybody else to say the prayer, but he said every word, and when he handed the trays to the deacons the trays shook and sometimes the water spilled a little but he did it. And at first people were embarrassed, but then later I heard them saying, That's one spunky kid, things like that. They were proud of him."

Then DeAnne said, "You kids are going to have a special responsibility as Zap's brothers and sister. You have to make sure that you treat him as naturally as you'd treat any other kid. That you never act ashamed of him in any way. Because if you act as if there's something awful or shameful about Zap, then others will, too."

"He's my little brother!" said Robbie.

"That's right," said DeAnne.

"It won't always be easy" said Step. "My Aunt Ella is retarded, which isn't the same thing, but she had a kind of look about her that made her seem strange and funny, and she was growing up in the 1920s, and people weren't very nice about things like that, especially the kids weren't. And my mom was her younger sister."

"That's Grandma Sal!" cried Robbie.

"Gammah!" shouted Betsy.

"That's right, your grandma Sal," said Step. "And when she was seven or eight years old, she was walking to school one day with Aunt Ella, and my mother tells how she was so embarrassed, she was really horrible to Aunt Ella, making her walk way behind her or on the other side of the street sometimes so that nobody would know they were together-but then, my mom was a little girl and nobody told her that she shouldn't be ashamed.

And one time this bunch of kids came up and started throwing stuff at them and yelling ugly names at them, just because Aunt Ella was retarded, and my mom, just a little girl named Sally then, she sat down on the curb and cried and cried, with those kids still running around and yelling, and Aunt Ella sat down beside her and put her arm around my mom and said, 'Don't cry, Sally. They don't know. Don't cry, Sally. They're just mean."'

DeAnne looked at Step rather oddly. "Why are you telling this story, Step?"

It occurred to him that the kids might get the idea that because Zap was their brother, they'd be teased or mistreated, and surely that wasn't why he started telling it. For a moment Step was confused and couldn't answer, so he did what any confused parent does, he pretended that he intended it to be a "teaching moment."

"Why do you think I told this story, Robbie?" asked Step.

"Cause we don't care if they're mean to Zap, because we're going to walk to school with him anyway! And we're going to walk right with him and not cross the street without him because then he'd be scared!"

Robbie had found the right lesson in the story even if Step had forgotten what it was supposed to be.

Then Stevie, without even being called on, said, "I think Aunt Ella was the smartest one, even if she was retarded."

"Why?" asked Step, pleased that Stevie had come up with this on his own.

"Cause all she cared about was that Grandma Sal was crying," said Stevie. "She didn't get mad at the bad kids, she just tried to make Grandma Sal feel better."