Hello!
Thanks for stopping by to visit my page. I've had one on Band-Aides for
a long time, but I changed it around a bit since I am no longer in elementary
school. Ta da...I just started seventh grade this week, and I'm happy to
report that I am with the best group of kids. I think that it will be a
very good year! When I'm not in school, you can find me working out on
my trampoline. Wait 'til you see me suspended in air at the bottom
of the page.
Besides
being such an athletic whiz, I'm also interested in the future. I may study
interior design, since I love to decide how things should look for other
people. For instance, I could tell them definitely, this wall should be
blue, and then move on to the next project. That way I'd never get tired
of the blue wall, if you know what I mean.
Whatever
I decide to do, I will always be interested in thinking. Take time travel,
for instance. Imagine having time bubbles that could transport you backward
and forward, from dinosaurs to...well, to just about anything! Think hard
about how important it would be to remember what bubble you started out
in. Actually, I don't think that time travel is something I'll volunteer
for because of the possibility of bubble mixups. What I should spend more
time thinking about, though, is my bedroom. My bedroom is pretty cluttered
since I have to use my closet to store all of my medical supplies. Now
if I could only design some push button system to get rid of the supplies
when I don't need them, I could really tidy things up. Are you wondering
why I need all of these supplies? Let me tell you a little bit about my
medical problems.
There
are a lot of things I have to do because of them, like getting enemas to
help me poop, and getting Calories through a pump connected to a button
sort of thing that goes right into my stomach. I usually only use the pump
at night, but it's kind of annoying because I can't get up and walk around
and stuff when I'm hooked up. When I'm sick, I use the pump more often
and I get to use a portable one. That's a problem, too, though, because
if you trip on the tube going downstairs, you can go flying. The real pain
in the butt is that the pump beeps sometimes and wakes me up. Every once
in awhile, the button pops out, or is PULLED out by mistake. One time I
was play fighting with a four year old and out it popped. Now because I
don't want to share this secret about how my body works to anyone that
I don't absolutely trust, I just said, "you won"! and I ran home so that
my mom could put it back in place.
I
also have a pouch on my belly where my urine comes out, and most of the
time it's OK, but occasionally it leaks. Now that's a problem, because
the kids can smell it sometimes, and they say, "someone blew one". I just
look around, too. If they knew it was me, they'd just make fun of me. One
time back in third grade, my pants slid down a little bit in gym,
and one of the boys said, "are you wearing diapers?" I just said, "So?"
Sometimes the pull-ups make a crinkle noise when I walk, and sometimes
the button in my belly that the pump attaches to sticks out. Talk about
embarrassing! If I were the principal of my school, the first thing that
I'd do is to redistrict the mean kids. There is one boy who used to be
in my class who told kids to cut it out and to leave me alone whenever
I was teased. The problem was that he told them that I was really very
sick. I wasn't then and I'm not now. I'm just a little sick some of the
time, even though I've had 22 operations, and may have a few more before
I'm all grown up.
Luckily,
kids respect a person's privacy more in seventh grade than they did in
elementary school. For instance, they might be wondering about the
bulge my button makes under my shirt, but no one would dare ask such an
inappropriate question.
What
the kids do notice and ask about is my hand. One time I had a cast on it.
I had an IV in that hand that exploded, and it left a scar. It didn't actually
explode. What happened was that some medicine I was getting in the IV leaked
out under my skin and it sort of burned the skin. Everyone asks what happened
to it, and I tell them. I know that they ask the questions because they're
curious, and I don't mind, but the pain in the butt is that it gets tiring
after awhile.
There
are also some good things about putting up with all of these medical problems.
I get to go to the hospital, and they have rec rooms with computer games
there. I also get to get out of school, but of course the one bad thing
about that is that I have to make up the work. This past year I had a very
high fever because of a kidney infection and had to miss school. Luckily,
my class had a website where assignments were posted, so I was able to
work REALLY hard and make up what I missed. What I couldn't make up, of
course, was missing out on all the social things that happened while I
was busy being sick. That was tough, because I am a very social sort of
person. Most of the kids in my class don't know that I have to spend extra
time staying healthy. In fact, when a friend sleeps over, I can usually
skip my enema and my tube feeding so I sort of hide the equipment. I did
spend some sleepover time this summer with my two friends who DO know,
and one of them kept saying how annoying the noise of the pump was. She
just needs to get over it, don't you think?
I
belong to a group of kids who have medical problems, and we made
up a play when I was in the fourth grade. I got to be the bully, Stacey.
Here's what happened. I kept being mean at recess. The kids were playing
"wonder ball", and I kept kicking the ball away. Then in gym class I was
stealing the basketball, and I got pushed to the ground and I broke my
leg. Two weeks later I came back with a walker. That was the end. Then
we all came out with a banner that said, "please treat others like you
would want to be treated".
Teachers
make a big difference. They can be the greatest, or they can be not so
thoughtful about dealing with kids with medical problems. For example,
my mom meets with all of my teachers each year, and one of the things she
tells them is that I have an allergy to latex. So one year there is this
big announcement and notice sent home about how ONE of the kids in the
class has this allergy and that nobody can bring balloons in because of
it. One boy in my class had something latex with him one day, and I told
him to stay away from me. Next thing I knew he is saying, SO YOU'RE THE
ONE!!! No big deal, but if you are a teacher, try your best not to single
out any of your students, since it is pretty embarrassing. My middle school
principal and teachers always say that several students have a latex sensitivity.
That way I'm not so likely to be identified.
Would
you like to know what it feels like to have an operation? Since I'm
pretty much an expert on that, I'll be happy to explain it to you...just
tap me on the shoulder, if you can!
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