Benjamin Explains...
When Sisters Needs Rainbows

 
 
 

Maddy was diagnosed with Ewing's Sarcoma, a type of bone cancer, when she was 13. Her sister Lucy, who conducts this interview, was 16, and Benjamin was 11 weeks old. In an attempt to learn how Ben understands the surgical treatment that his sister required, Lucy has this conversation with him. Benjamin is now three-and-a-half, and the "rainbow" he refers to is Benjamin-speak for Maddy's crutch, painted with rainbow colors. 

L: Benjamin, you know how you walk, and I walk,
and Mummy and Daddy walk?
B: Yes.
L: Is how Maddy walks different from that?
B: Yes
L: How's it different?
B: She's got a rainbow. Not all the time. But when her leg is sore, she must use her rainbow.
L: Why does Maddy need her rainbow, Ben?
B: Cause she's leg is broked.
L: Maddy's leg is broken?
B: Yup. It can't work.
L: Benjamin, why do you think Maddy's leg doesn't work? What happened to it?
B: I think a T-Rex comed along and roared and bit it, and it got broked!
L: Do you really think that's what happened?
B: No... Maybe.
L: Now Benj, this is very important. I want you to think really, really hard before you tell me, okay?
B: Okay.
L: How did Maddy's leg get broken?
B: The bad persons did it.
L: The bad people?
B: They maked Maddy cry.
L: Who are the bad people, Benj?
B: They's very, very bad. They cutted her leg with a sword.
L: Was Maddy's leg always broken? Was it ever like your leg?
B: In the photos. When I was in Mummy's tummy.
L: That's right, Ben, just a few more questions, okay? How do you know Maddy's leg was cut with a sword?
B: Cause you can see the owie. On her leg, here
(indicating his own thigh).
L: Does Maddy's leg mean she can't play with you sometimes?
B: She plays soldier games with me! She goes, pow, pow, and kills the bad persons.
L: What about other games? What about football?
B: Maddy is bad at running. Her leg gets puffed. She can't play with me and Kyle.
L: Does that make you sad?
B: Yes. She can't give me piggybacks when I get tired.
L: Will Maddy's leg ever get better, do you think?
B: She goed to the doctor and he said, "No, we cannot make your leg get better." But they cutted it again.
L: That was to make Maddy's leg grow bigger, remember?
B: It didn't get better.
L: Yes, but it grew some more.
B: Why for did the doctors not fix it?
L: They tried, Ben. They tried really, really hard.
B: It was too broked?
L: Yeah, it was.
B: Will it ever get unbroked?
L: Maybe.
B: Another day?
L: Maybe another day.
B: Lucy, will the bad persons come back?
L: I don't think so. Why?
B: If they comed back, I would shoot them, pow, with my gun.
L: Why would you do that?
B: I will grow up big and strong, bigger than Daddy, and I will kill the bad persons. 
L: Why, Benjamin?
B: They hurted my sister. They maked her sad. I will shoot them, and my Maddy will be happy. I want my Maddy be happy.

 

 
 
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004