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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities

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I Want to Be at That Victory Party

Christopher Edwards

Chris wrote the following essays while participating in the Pediatric HIV Psychosocial Support Program at the National Cancer Institute (NCI) in Bethesda, Maryland. NCI is one of more than a dozen institutes that make up the National Institutes of Health (NIH). At the time that I found Chris, children with HIV were coming to the program from all over the country. They took part in clinical trials and received a range of services, from medical intervention to emotional, spiritual, and psychosocial support.

Chris composed the essays that appear here during his regular sessions with Dr. Lori Wiener, coordinator of the program. Dr. Wiener encouraged the young people she worked with to express themselves through play, storytelling, writing, and art making. She used an approach with Chris that she had found effective in helping other children uncover and give shape to their innermost feelings: She would suggest an unfinished thought — a kind of open-ended question — that would serve Chris as a jumping-off point from which to start talking about whatever really mattered to him at that time. During one session, for example, she suggested, "If I had a magic wand . . ." In another session, she might suggest, "I often wonder . . ." or "If only . . ." As Chris talked, Dr. Wiener wrote down his words. Eventually, Chris began choosing his own story titles.

The writing by Chris included here spans about five years, starting with a brief untitled essay that he wrote when he was seven years old and concluding with "My Life — Its Ups and Downs over the Last Year," which he wrote when he was twelve. "My Life" was edited slightly to protect the family's privacy.


[Untitled]

I come to NIH to get medicine to keep me well. I have HIV and I DON'T LIKE IT. I want the HIV virus to know that I am going to get well and the virus will need to get LOST.

seven years old

 

If I Had a Magic Wand

If I had a magic wand, there are many things that I would do.

First, I would make my house a lot bigger. Probably as big as the whole block. In the house, there would be millions of dogs, about 144 cats, a million birds, and about a hundred white-ranger toys. My mom, dad, and me and my animals would live there but not my brother unless he stopped being so mean to me. My room would be almost as big as the whole house, and I would sleep on a hundred-foot-long water bed.

Next, I would make all the streets into rivers which were used as swimming pools. Every day would be like summer time and it would be 95 degrees.

I would also turn myself into the white power ranger because he is the very best power ranger ever thought of. Whoever thought of the power rangers, I would give them one-million dollars if they gave me all the power-ranger toys ever made.

But the most important thing I would do and probably the very first thing I would do if I had a magic wand would be to make the HIV virus disappear from every child and every adult in the whole wide world. Then I wouldn't have to watch another parent die or another friend die or even me die from the virus. I have lost my dad to AIDS, I am afraid of losing my mom to AIDS, and I am so sad that I have lost so many friends to AIDS. Whenever I lose a friend to AIDS, I feel sad. I wonder what it was like for them and what they were thinking and feeling. I think they were not scared because they knew they were going to be in a better place. I sometimes think about one day being with them again in Heaven. I will go swimming in the energy pool with them and watch over my family. I will be the white-ranger angel of Heaven. Then I will again be with my dad, Bruce; Marilyn; Brittany; and Aubrey. We will have a fun time!

eight years old

 

My Story: Living with HIV

I am nine years old and I have HIV. I have had HIV all my life. I first learned about having HIV when I was six years old. My mom told me when I was at the hospital and I was shocked. I had no idea that I was really sick. But I was even more shocked when I learned about my mom and dad having it.

I have a brother who is eleven. His name is Dylan. He does not have HIV. I am glad for him because he does not have to go through what I go through. He probably doesn't understand why he does not have it since everyone else except my brother and new dad have it. I think sometimes he even feels jealous because I get to go to Washington, D.C., every month for my treatment, and I have a lot of fun there. Dylan has only been to Washington with me a couple of times, but it would be nice if he could come with me more often.

Living with HIV is no fun. You can get really sick or even die from it. I have gotten really sick a lot. I have never been worried about dying during those times, though, because I go to Washington and they treat me good and have always gotten me better. My dad died from HIV. It was terrible. I was in preschool at the time he died. I remember coming home from school one day and my mom told me that my dad died. I cried then and I cried every time I looked at his picture. That was four years ago. I don't cry anymore when I look at his picture. I still feel kind of sad when I look at it, but now I remember how sick he was and how hard it was for him to live being so sick. I also remember how nice he was to me.

My mom got remarried to my baby-sitter a little while later. His name is Ron and he is very nice but strict. I love him a lot. He takes good care of us and he is good to my mom. He and my mom get along very well.

So I have been living with HIV for nine years now. I have learned a lot. I have learned a lot about HIV and the medicines I take to keep me well. I have also learned that I don't have to worry about dying all the time, because I am very much alive and very healthy.

I hope the future stays the same.

nine years old

 

Everything Is Different Now

1. We moved.

We moved on March 12, 1997, to a house in DeKalb, Georgia. This house is a lot nicer than the house we lived in with Ron. We have electricity, a phone, gas, food, and a clean place to sleep. I like it a lot better not only because the house is nicer but because I get to go outside and make friends finally. Allen is my mother's boyfriend now, and it is his rented house that we are living in. Allen travels a lot for his job, but that is okay because he does environmental cleanup and I think that is cool. Allen is a country kind of guy, old fashioned in some ways, but he is very smart and can do almost anything. He makes my mom happy and he treats her well and that makes me feel good. My brother, Dylan, likes Allen and seems happier, too, living where we are at.

2. We left Ron.

We left Ron because he started being a crack head and my mom didn't like that or like us living with him. At first Ron was great. I really, really liked him. But then he and my mom got married and he totally changed. Everything about him changed. Our house changed. Lots of people were coming in and out and none of us liked that. He started treating both me and Dylan differently. He would make us do yard work, go out in the rain and pick up sticks, cut grass with clippers, and was always yelling at us. He was treating my mom differently, too. They weren't getting along at all. They were yelling at each other a lot, saying a lot of nasty things. That made me feel bad and a little scared to be there. I didn't know what was going to happen next. I was very glad that we left. He whipped us all the time, and I had fantasies of getting rid of him somehow, someday, some way.

3. We are in better shape now.

We are all a lot happier now. But we may move again. Our neighborhood is bad, people around us steal things, and we don't feel real safe there. I want to move closer to my grandmother because a lot of my friends live there. She is in Ellenwood. I also don't like my school at all. They don't teach me anything. Some of the kids are okay, some are mean. When someone made fun of me (called me names, like Shorty), the rest of the class stuck up for me and yelled at them. I liked that. This fall I will be starting sixth grade in a new school. I am looking forward to that and hope to stay an A/B student. I want to be able to go into the honors society!

4. I have a Nintendo 64 FINALLY!

I have eight games for my Nintendo 64. I have a Rumble Pak and a Memory Pak to go in my Controllers. Each game cost over $80 a piece, and I was the one who bought my own memory pack. I love playing with it. I still want to get WWF War Zone and Mission Impossible, Zelda 64, WCW Nitro, and San Francisco Rush and San Francisco Rock.

5. I am a lot healthier now!

When I first started coming up to NIH, I was very sick. There were not many medicines for people with HIV, especially kids with HIV. My dad got real sick from it and he died in 1992. I still miss him. My mom has never gotten sick from it yet. I hope she never does. My brother doesn't have HIV and I am glad about that. What I hope is that good new medicines continue to get developed so that me and my mom can stay well. What I want most of all, though, is to

  • find a cure for AIDS
  • have a pocket-size computer that will give me anything I want and can think of, an endless supply of it all
  • have magical powers
  • grow five feet taller in five seconds
  • go and stay in the gifted classes
  • move again to a house that has three stories with a dumbwaiter and cable TV!

eleven years old

 

My Life — Its Ups and Downs over the Last Year

My life over the last year has been pretty good. We have gotten a lot of new stuff since we have moved away from our stepfather. I did a commercial and got paid $478. I bought a Playstation, games, a pair of shoes, and I still have $100 left. I don't really know what I am going to do with it yet, but I am thinking of getting a SixFlags season pass. I may also get some new games.

As far as my HIV goes, this past year has been difficult; I have been allergic to every single medicine that they put me on. I got rashes all over my body. Now I am only on two different medications, but they are in the same family of drugs. This doesn't worry me very much because I actually feel better and I am gaining weight and growing — something I hadn't done for a while.

My mom is doing okay. She is not taking any meds yet because she is too healthy. She is still with Allen. My brother is still the same punk he has always been, but I love him anyway. We are getting along better and we are hanging out more while Allen is at work. My mom is also working — she is delivering flowers and I like going with her. She likes her job.

I didn't go to school much this year because I was sick. I sort of missed it, but I also sort of like being able to stay home with my mom. I still passed and this year I will be in seventh grade, going to a magnet school for computer technology, math, and science. I am looking forward to it even though I know I will have a lot of homework and maybe trouble keeping up for a while — mostly because I am not very good in math.

HIV is different these days than it was years ago. Years ago, I was sick more and many of my friends died. Now, very few kids die, but we all know that there is still no cure that we know of yet. It is probably out there, like a plant or an animal that is extinct because of pollution, but I hope I am wrong and the cure is found soon. It is hard to always remember how important it is to take my medicine, especially when we are doing better, but we should never forget that we could still die from this disease if we don't take medicine. I don't want the virus to win this war. I want to be around to see the war against AIDS end, and I want to be at that victory party! That's all, folks. More next year!


P.S. I have done some things this year that haven't been the smartest things I have ever done. But the good part is that I have learned many lessons from my mistakes. I actually think I am a better person because of it. In fact, I know I am.

twelve years old


Shortly after I finished writing my introduction to his essays and just three days shy of his thirteenth birthday, Chris passed away. He had gone into the hospital with whooping cough, which was followed by four other lung infections, one after another. His stay in the hospital lasted twenty-eight days.

Chris's family held a memorial service for him on his birthday. His ashes were scattered at Camp Heartland, the camp for kids with HIV and their siblings that Chris and his brother, Dylan, had attended together for a number of years. The family chose Camp Heartland as the resting place for his ashes because it had been Chris's "happy place."

 

For more information about the disabilities discussed in this story, please visit the Resource Links page.

 

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spacerHOMEPAGE
INTRODUCTIONACKNOWLEDGMENTS
TABLE OF CONTENTS PART 1PART 2PART 3PART 4
RESOURCE LINKS
INDEX CONTACT


spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
The combined contents of this website are © 2006, 2008 Linda Hillyer. All rights reserved.