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I Will Sing Life: Voices from the Hole in the Wall Gang Camp.

Voices From the Hole in the Wail Gang Camp by Larry Berger, Dahlia Lithwick, and Seven Campers, (C)1992. Published by Little, Brown and Company, Boston. To order: Exceptional Parent Marketing, P.O. Box 889, Boston, MA 02134, (800) 742-4403, $22.95 + $3.50 shipping and handling (hard cover only).

The following excerpt from Adam Jed has been reprinted with permission from the publisher.

I had to stay in the burn unit for three months. The visiting hours there were horrendous! Just a few hours during the day. I can understand keeping visitors out when they had to change bandages, but the rest of the time I would just sit there. My hands and legs were too bandaged up to do anything. That's when my dad taught me to play chess. My parents also hooked up a speaker phone in my hospital room and one in their room at home. They left them on all day and all night so that whenever I wanted to talk to them I could. I remember how I really wanted to go home, just to lie in my own bed for a while. I was forgetting what my house looked like, so my dad made a videotape of the whole house. Then later the doctors finally let me

I go home long enough to lie in my own bed for a couple of minutes, but then I had to go back.

I didn't really believe that I'd be able to walk again. I mean, I did not believe anybody. I basically stopped trusting anyone who had an M.D. after his name or anyone who had a white suit. I hadn't walked for so many months that even if I had my legs back, they would have been floppy as spaghetti. Then they fitted me for prosthetic legs.

When I saw them, I figured it would be just like attaching the legs and I would walk great, but when I put them on and tried to walk -- oh God! So first I did weight-lifting, then I went on parallel bars with the prosthetics, just strengthening my legs and working on my balance. Then I used a walker, then two canes, then one cane, then nothing. There were many times when it was so hard I wanted to give up, but different therapists and my parents got me to keep trying.

My first steps were fun, but it still seemed very hard. I'd say it was about eight or nine months from the amputations to when I first started to walk. Then it was another two weeks before I could walk up and down stairs, then it was about a year before I learned to run. Now I don't even have to think about it. Now, I jump, I leap, I gallop. I've never tried the special swimming prosthetics because I don't know how to swim. I want to get water legs so I can just walk in the water.

I go to a fitness club twice a week where I use the rowing machine, the bikes, and do a little weight-lifting and arm-wrestling with the therapist there. I can't beat most of the other kids at school with my left arm in arm-wrestling because the front part of my arm is really my back (they took muscle and skin and fat from my back to cover a hole in my arm in a ten-hour surgery), but I can still beat my sister Allison, even when she's using two hands and a chin.

Here's a story I made up about my prosthetics:

A Leg with an Ego

One day I stay at home because I am feeling sick, but my prosthetic legs decide to go to school alone, without me. Wearing black leather shoes and tannish pants, they walk through my school, go to my desk, sit down, and try to hold a pen with their feet. It doesn't work, and the paper falls off the desk. My whole class walks in and they all stare at the prosthetics. My teacher, Ms. Chapman, walks in, doesn't believe it, and collapses on the ground.

All the kids gather around her like a football team huddling and then one of the kids runs down to tell our principal, Mrs. Robinson, and she gives us recess for the rest of the day.

During recess my prosthetics play kickball. The person who's in charge of recess for the rest of the day, Mrs. Rosenberg, comes by the kick-ball field, looks at the person who is kicking, and realizes it's just a pair of legs. She starts to run away, but she's so dizzy that she hits her face right into a fence. She gets up to get Mrs. Robinson, but she slams her face against the wall and gets knocked out.

The students are sent home for the day because the teachers all fainted and there was no one to watch the kids at recess. So the legs get on the bus and put down their bookbag, but one of the kids tells the bus driver that the prosthetics don't have a seat belt on. She walks back, looks at the legs, and faints. So now there's no one to drive the kids home and they have to go to Mrs. Robinson. She calls our parents, but when my mom hears that my legs are at school without me, she faints. My prosthetics walk home, go into the house, up the stairs, and sit down on my bed. When I see them, I faint. So the legs drive me to the hospital. One leg pushes the pedal, the other leg turns the steering wheel. There's a whole hospital emergency room filled with all the people who have fainted.

Later, the prosthetics come in to visit me. They see me walking around on another pair of prosthetics. They think that I'm impersonating them and they get confused and faint.

Usually I'm on top of my prosthetics when the two of us go to school. I can walk anywhere on them and I played Frisbee today at lunch. But I can't play kickball as well as the prosthetics in my story. Only imaginary prosthetics do that. No one in reality has ever fainted because of my prosthetics. A lot of the kids in school don't even know. I still hate having to wear them -- they're a real pain, and I can't lead as fast a life as I'd like. It's difficult to go on sleepovers at friends' houses if they've never seen me without my legs.

The Hole in the Wall Gang Camp was designed and built by Paul Newman and a group of dedicated volunteers. It first opened in 1988 to provide an exciting and rewarding camping experience for children who have cancer, leukemia and other serious blood diseases, who because of their disease, its treatment or its complications, cannot attend ordinary summer camp. Located on 300 acres in northeastern Connecticut, the camp was designed to resemble an Old West logging town of the 1890s, but is also equipped to meet the medical and physical needs of these special children. The buildings, facilities and site make a wide range of activities possible. The camp serves children ages 7 to 17. There is no cost to campers.

For more information, contact the Hole in the Wall Gang Fund, 555 Long What1 Dr., New Haven, Conn., 06511, (203) 772-0522.
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Title Annotation:excerpt
Publication:The Exceptional Parent
Date:Oct 1, 1992
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