Thanks for visiting! Sophie


Thanks for visiting my page. My name is Sophie Gublo, I'm seventeen years old (at least I was in the year 2000 when I wrote this story!), and I'm a Senior in high school. If you were to meet me in person, I think you'd like me. I have a lot of friends, and I have the sort of personality that protects me being overwhelmed with all of the medical problems in my life. 

I love to spend time with my friends, and I love to write poetry, and I try my best to enjoy myself in school and at EVERY school function I can get to. During the summer, I ride horses, show horses, and spend a lot of time in the barn. I began competing when I was seven years old with my first pony, Cherry Blaze, and I still give lessons on her. I'm up for anything else that sounds fun, too, like jogging. I'm in the running club and on the track team at school... (and the doctors didn't think I'd even be able to walk  :::HA:::)  And of course I'm on the computer and the phone for hours! 

I spent six of my first eighteen months in the hospital, though of course I don't remember much about that time. My family tells me that I was so uninterested in food and that I had such a tough time eating, they would sit in my room and count the Cheerios I ate. The doctors and nurses told my mom that they were going to put me on the school bus and dress me for my first prom, but luckily, I surprised them and did most of my growing up at home! Even now, when I hear people complain about hospital food, I have to laugh because mom remembers taking me to the hospital cafeteria as a treat, I-MED Pump and all.  I still like hospital food, and every time we go back, we have lunch in that cafeteria. 

As I moved from babyhood into childhood, I was shipped FedEx (well, actually in an ambulance with my daddy) to the hospital, and five weeks later, the doctors figured out what was going on with me; that I had something called Hirschprung's disease.  This means that I'm missing nerves cells (called ganglia cells) in my  intestine. These are important cells, since they cause the contractions that move food through the gut (peristalsis). Segments of my intestines that don't have the cells don't allow the digested food to go beyond. The end result is that my bowel, even though open, becomes obstructed. Yuck!

When I was in seventh grade, I learned that I beat the odds as my science teacher understood them.  He very boldly stated that if you didn't have all of your small intestine, you couldn't be alive.  I twice as boldly shot my hand up and said loud and clear, "you're wrong."  (I think that was the first time I talked about my medical problem in a classroom situation).  He looked at me like I was nuts.  I told him, "well, I don't have all of my small intestine", and to prove my case, I brought in a term paper my aunt wrote about me.

When I first started school, I had a difficult time because I didn't know how to relate to my classmates. Since I had spent so much time in the hospital with doctors, nurses, and older family members, when it was time for me to start kindergarten, I literally clutched onto my teachers' skirts.  Some of them were not very understanding about my "lavatory needs", and even the school nurses thought it strange at times that I needed to go to the bathroom so much!  My mom must have written a zillion notes to school when I was younger, about things like my needing mats to do sit-ups in gym class because of how thin I am and because my tailbone is deformed. 

Now there were some good things about this Hirschprung's, too. When I was in kindergarten, all of the lunch ladies knew that I wasn't supposed to have milk-products because they upset my stomach, so they'd keep those cool frozen fruit juice bars for me when we had ice cream day at Christmas. On the other hand, it was awkward when someone had a birthday party in class and I couldn't have ice cream with everyone else. I did have my share of fame when I was a little girl, appearing on one of the first Children's Miracle Network Telethons.  There I was with my parents, my Aunt Pearl and my Uncle Harland. Uncle Harland was my best buddy in the hospital. He would come to my room and hold me when mom and dad had to go home for a little while (we live near Elmira, NY.  About 2 1/2 hours away from the hospital), and they could be there all the time because they lived nearby.  What a great sense of humor Uncle Harland had. For instance, when I was waking up from anesthesia, he would be there and I would say things like, "I remember you from before, and I didn't like you then either." and, "The check's in the mail." 

My very best friend Holly had cancer, and so was used to the  doctor/hospital/ health problems scene.  I learned from her about "remission," "leukemia," and "how to get a boyfriend.", and from me, she learned "why my tummy growls when I'm not hungry," "why I eat so much but I'm still painfully thin," and "how to ride a horse."  I met her in second grade and we've been best friends ever since.  This June we'll be graduating together. Once I got out of the whole "elementary school" part of my life, I became much more self confident and assertive.  If someone asked about my scars (they'd see them whenever I wore a two-piece bathing suit or a midriff-baring shirt) I would proudly exclaim that "they're my battle scars...I won." Holly  is a *bit* more conservative than I am, so she just kind of opts to stay quiet and keep her medical problems on the 'downlow'.  I feel that teachers should respect kids, no matter how they choose to cope with their illnesses.  For example, some teachers would find out about Holly's past and would start asking her about the cancer after class, and she just didn't want to talk about it.  On the other hand, I wanted to tell my sixth grade class about the cool scars on my tummy, and my teacher said that it would be "too graphic." 

I guess I always thought of the marks on my body as battle scars--a battle where I came out the winner.  Mom would tell me that, and that's truly how I feel about them.  I have a lot of other scars from a lot of other things (falling off playground equipment at family reunions, scratches, cuts, scraped knees when I went against my mother's wishes and learned how to rollerblade, etc.), yet the scars on my tummy and on my back from my seven operations are just the "coolest looking" of my collection.  Many friends wonder how I can be so comfortable with them, and I think it's because I'm proud of winning against the odds.  In the hospital, I was "the long-shot kid" and my scars of that time have become my trademark.

The most difficult part of school for me was my nephew Jimmy.  He is only one month younger than me, and was merciless in his teasing. He's a lot like more like a sibling to me than a nephew because all of my brothers are approximately twenty years older than I am. (In kindergarten, kids used to think Jimmy and I were married.)  When we were very little, we kind of looked out for each other. I was the loud obnoxious one, and he just tried to keep me from getting picked on too much.  As we got older, he started to follow the crowd and think of me as "that weird girl with all of the weird friends" and we grew apart. 

He has this awful habit of telling his friends what he thinks he knows about "the scars"... when he really doesn't know anything.  I have an iron deficiency problem along with the Hirschprung's, since I only have a meter of small intestine and four inches of large so I don't absorb food very well.  I guess that's why my body wouldn't let go of my baby teeth and I why I was very, very pale when I was little. When we were in second grade, Jimmy would tease me for having two rows of teeth that stuck out of my mouth. 

And since we're so close in age, naturally he has friends I think are cute. Now this is the killer. Every time I liked one of his friends, he'd bring up something about how long I wore diapers to bed or how I always had really bad gas at bedtime.  Grrr!

School had it's hard times, but it was even worse trying to spend the night at a friend's house.  Mom would send me with a diaper and tell my friend's parents, but sleepover parties were often difficult.  Eventually, I abandoned that strategy in favor of staying awake the entire night, even if it was all by myself.  When mom realized I was doing this, I wasn't allowed to stay away from home anymore.  Even now, she is reluctant to let me leave the house overnight.  This, for obvious reasons, makes me apprehensive about going away to college.

Oh, college. It's such a difficult issue because my doctor suggested that I request a single room, and my mother is reluctant to let me even apply to schools that cannot honor that request from a freshman applicant. To prepare for college, I began searching for sites on Hirschprung's Disease when I started writing my Senior thesis. This is such an important aspect of my life, and probably the greatest challenge I'll have to face since it will be with me forever, so I should try to learn everything I can about it. For instance, I need to know about how drinking, drugs, and pregnancy might "interact" with complications from Hirschprung's.  Because these are all situations college students are faced with, I have a dire need to be informed on how they will affect me before I have to face a problem I can't handle.

I plan to double major in English and Theatre, and to minor in Equestrian Studies and Secondary Education.  Ultimately, I would like to be an English professor, but if that doesn't work out, my second choice is to take my favorite teacher's job when she retires.  (She was my swimming teacher when I was in Elementary school, my English teacher when I was a freshman in High School, and my English teacher for Advanced Placement English this year.) 

Here I am with my horse!

Here I am on my horse. What a good friend!

I hope that you enjoyed my story, and that you'll send me a note if you'd like to learn more about me.   Sophie

In the meantime, do you want to learn more about Hirschprung's?

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

Last updated: November 16, 2004