- (2) I was just happy to be alive
Park Jeong-Hyeon (Kwon Su-Ji’s mother)
I will raise my child strong and send her out to the tough world
About 9 months of hormone therapy, I coincidentally found out about ALPK (Association of Little People of Korea) through the internet. I saw a contact number for the regional director in Busan, so I called him. But I wasn’t too happy with the phone conversation. He said children with dwarfism grow taller through surgeries, and that was Ilizarov surgery. I knew somewhat about the Ilizarov surgery through my online search, but it was never mentioned that people with dwarfism could also have the surgery. Also, I didn’t believe that you can lengthen your height as much as 30cm.
We were barely able to increase 3cm with the hormone therapy, and 30cm of lengthening was really hard to believe. He wanted me to come and have a talk. I wasn’t really up for it, but there was nothing to lose, and it was on the way to the hospital, so I went to see him.
They seemed more trustworthy after I saw the pictures and listened to the stories from the activities they do at ALPK. I was thinking to get hormone therapy then and Ilizarov surgery later, but they were saying that hormone therapy was not affective. But I was thinking that she could grow more, since it helped her grow 3cm. But when I visited the hospital, he said, “She has not grown at all again. We are going to have to increase the dosage twice as much as a normal person would take. If that doesn’t help either, we will take a break for a bit and re-administer with an increased dosage. Because we don’t want her to build up tolerance.”
This was when I realized that growth hormone therapy wouldn’t be much help. The dose of growth hormone needs to be proportional to the body weight. But if it kept going two times, three times, and four times as much as the normal dose, how about all the side effects?
She also had atopic dermatitis, which got worse as she took growth hormone. I was afraid other complications would come up on top of atopic dermatitis. So I told the doctor that we would take a break, but actually we never went back.
We attended an ALPK camp in Busan, where I met Professor Song. I also got to meet other children with dwarfism, where I got to have hope for the surgery and somewhat be relieved. That was when I thought, “If I had gone to L Hospital in the first place, or met a doctor who told me about the baby’s condition in more details, would my precious child be born in this world?” Everyone at ALPK looked very bright and happy regardless of their age. I decided to really raise my child strong.
So I intentionally took my child to culture center at department stores and places with a lot of people, like the aquarium or the park. She liked spending time with her grandparents who lived upstairs, and cousins who came to our place every weekend. We also went out 2~3 weeks for our daughter. When she was able to walk, we didn’t hug her much even she wanted us to.
With her walking speed, it took her 30 minutes to get to the bus top to go to the culture center. I made her walk alone on purpose. When she complained and collapsed on the ground, I hid myself so that she would get up and walk. Even at a crowded place like the subway station, I didn’t carry her but made her walk. A grandmother who was passing by actually scolded me for that. There were also people accusing me of being a bad stepmother, not taking care of a crying child.
They probably didn’t know why I was training her to walk. They misunderstood me for a mother who didn’t like carrying her child and didn’t take care of her child. But I thought her legs need to be strong. Because I knew the world ahead of her was going to be far more difficult for someone who got tired from walking more quickly.
I was hoping she would take care of herself since she was little. Of course, I could have trained a little child too harshly. But one thing I knew was that even though people thought she was cute then, when she gets older, people were going to see her strangely, as a disabled person, as if she was a wondrous creature.
That was why she needed to be stronger! More self-confident!
I wanted my child to feel. So I didn’t send my child to child care but take her to culture centers and crowded places. Actually, one day, she burst into tears wanting to just stay home and read books. Reading is important, but I thought what’s more important is to hang out with people and make friends. In my neighborhood, she couldn’t play with other kids because they were all gone to child care.
Our week was planned out. On Mondays, we went to the aquarium, then to the hot springs for her atopic dermatitis, to the culture center on Tuesdays and Thursdays, to her friend’s house on Wednesdays and then back to the hot springs on Fridays. Her atopic skin was almost cured after going to the hot springs every 2 weeks for 10 months.
She still likes going out and loves spending time with people. She also loves singing or dancing with people’s cheers When people asked her what her name was when she was 3~4 years old, she told them “Ballerina Kwon Su-ji or Kwon Su-Ji Ballerina. Some older people couldn’t understand her so they told her “Wow, what a long name you have.”
She wanted to learn ballet since the age of 4, but at the ballet school, there were some moves that only Su-Ji couldn’t do. Those moves had to do with legs. So I had to make her give it up, but she still has the dream of being a ballerina.
Su-Ji was a girl who can enjoy the stage for more than 30 minutes when people cheer for her. Whenever she was riding in a car, she sang a few songs before she fell asleep. She was always happy and smiling. Even when she fell on the ground, I didn’t hear her crying or telling me how much it hurt. She didn’t cry even when she was bleeding or had a cut that she got me worried.
Su-ji was always a happy child. But she got upset and couldn’t take it well whenever strangers asked her age and no one was able to guess her real age. At the culture center or the play room, she got teased by kids who were younger than her, and they even called her a liar when she told them her age. Whenever I was around, I had to give those children confirmation.
Other children asked me why she was shorter than even her own little sister. I told them that there are fat people, thin people, short people, and tall people in this world, and that she just happened to be one of the short people. They seemed to understand me, but still found it interesting. They asked all sorts of questions like, does she eat well, or is she a picky eater. It was hard to answer that question because she ate so well.
I told Su-Ji that she could get tall after she does the surgery, and that she might be able to learn ballet after her bowed legs are corrected. Knowing that there were certain moves that only she couldn’t do during ballet lessons at the kindergarten, she had high hopes for the surgery.
Through the meetings at ALPK, l learned that not only children, but also adults with disability had their legs corrected with the Ilizarov surgery. They also had corrective surgeries in their arms, allowing them to be able to take care of themselves in the bathroom. Su-Ji was 7 years old, and she got upset and felt humiliated because she couldn’t wipe her bottom with her short arms.
I was amazed by the impact this surgery can make, and also thought that maybe I could have done the surgery if it was more publicized back then. I tell people that I am 158cm tall, but actually I am 153cm tall. I think this height is from 1st grade in middle school. I thought to myself, “if only I wasn’t such a picky eater back then.”
Park Jeong-Hyeon (Kwon Su-Ji’s mother)
I will raise my child strong and send her out to the tough world
About 9 months of hormone therapy, I coincidentally found out about ALPK (Association of Little People of Korea) through the internet. I saw a contact number for the regional director in Busan, so I called him. But I wasn’t too happy with the phone conversation. He said children with dwarfism grow taller through surgeries, and that was Ilizarov surgery. I knew somewhat about the Ilizarov surgery through my online search, but it was never mentioned that people with dwarfism could also have the surgery. Also, I didn’t believe that you can lengthen your height as much as 30cm.
We were barely able to increase 3cm with the hormone therapy, and 30cm of lengthening was really hard to believe. He wanted me to come and have a talk. I wasn’t really up for it, but there was nothing to lose, and it was on the way to the hospital, so I went to see him.
They seemed more trustworthy after I saw the pictures and listened to the stories from the activities they do at ALPK. I was thinking to get hormone therapy then and Ilizarov surgery later, but they were saying that hormone therapy was not affective. But I was thinking that she could grow more, since it helped her grow 3cm. But when I visited the hospital, he said, “She has not grown at all again. We are going to have to increase the dosage twice as much as a normal person would take. If that doesn’t help either, we will take a break for a bit and re-administer with an increased dosage. Because we don’t want her to build up tolerance.”
This was when I realized that growth hormone therapy wouldn’t be much help. The dose of growth hormone needs to be proportional to the body weight. But if it kept going two times, three times, and four times as much as the normal dose, how about all the side effects?
She also had atopic dermatitis, which got worse as she took growth hormone. I was afraid other complications would come up on top of atopic dermatitis. So I told the doctor that we would take a break, but actually we never went back.
We attended an ALPK camp in Busan, where I met Professor Song. I also got to meet other children with dwarfism, where I got to have hope for the surgery and somewhat be relieved. That was when I thought, “If I had gone to L Hospital in the first place, or met a doctor who told me about the baby’s condition in more details, would my precious child be born in this world?” Everyone at ALPK looked very bright and happy regardless of their age. I decided to really raise my child strong.
So I intentionally took my child to culture center at department stores and places with a lot of people, like the aquarium or the park. She liked spending time with her grandparents who lived upstairs, and cousins who came to our place every weekend. We also went out 2~3 weeks for our daughter. When she was able to walk, we didn’t hug her much even she wanted us to.
With her walking speed, it took her 30 minutes to get to the bus top to go to the culture center. I made her walk alone on purpose. When she complained and collapsed on the ground, I hid myself so that she would get up and walk. Even at a crowded place like the subway station, I didn’t carry her but made her walk. A grandmother who was passing by actually scolded me for that. There were also people accusing me of being a bad stepmother, not taking care of a crying child.
They probably didn’t know why I was training her to walk. They misunderstood me for a mother who didn’t like carrying her child and didn’t take care of her child. But I thought her legs need to be strong. Because I knew the world ahead of her was going to be far more difficult for someone who got tired from walking more quickly.
I was hoping she would take care of herself since she was little. Of course, I could have trained a little child too harshly. But one thing I knew was that even though people thought she was cute then, when she gets older, people were going to see her strangely, as a disabled person, as if she was a wondrous creature.
That was why she needed to be stronger! More self-confident!
I wanted my child to feel. So I didn’t send my child to child care but take her to culture centers and crowded places. Actually, one day, she burst into tears wanting to just stay home and read books. Reading is important, but I thought what’s more important is to hang out with people and make friends. In my neighborhood, she couldn’t play with other kids because they were all gone to child care.
Our week was planned out. On Mondays, we went to the aquarium, then to the hot springs for her atopic dermatitis, to the culture center on Tuesdays and Thursdays, to her friend’s house on Wednesdays and then back to the hot springs on Fridays. Her atopic skin was almost cured after going to the hot springs every 2 weeks for 10 months.
She still likes going out and loves spending time with people. She also loves singing or dancing with people’s cheers When people asked her what her name was when she was 3~4 years old, she told them “Ballerina Kwon Su-ji or Kwon Su-Ji Ballerina. Some older people couldn’t understand her so they told her “Wow, what a long name you have.”
She wanted to learn ballet since the age of 4, but at the ballet school, there were some moves that only Su-Ji couldn’t do. Those moves had to do with legs. So I had to make her give it up, but she still has the dream of being a ballerina.
Su-Ji was a girl who can enjoy the stage for more than 30 minutes when people cheer for her. Whenever she was riding in a car, she sang a few songs before she fell asleep. She was always happy and smiling. Even when she fell on the ground, I didn’t hear her crying or telling me how much it hurt. She didn’t cry even when she was bleeding or had a cut that she got me worried.
Su-ji was always a happy child. But she got upset and couldn’t take it well whenever strangers asked her age and no one was able to guess her real age. At the culture center or the play room, she got teased by kids who were younger than her, and they even called her a liar when she told them her age. Whenever I was around, I had to give those children confirmation.
Other children asked me why she was shorter than even her own little sister. I told them that there are fat people, thin people, short people, and tall people in this world, and that she just happened to be one of the short people. They seemed to understand me, but still found it interesting. They asked all sorts of questions like, does she eat well, or is she a picky eater. It was hard to answer that question because she ate so well.
I told Su-Ji that she could get tall after she does the surgery, and that she might be able to learn ballet after her bowed legs are corrected. Knowing that there were certain moves that only she couldn’t do during ballet lessons at the kindergarten, she had high hopes for the surgery.
Through the meetings at ALPK, l learned that not only children, but also adults with disability had their legs corrected with the Ilizarov surgery. They also had corrective surgeries in their arms, allowing them to be able to take care of themselves in the bathroom. Su-Ji was 7 years old, and she got upset and felt humiliated because she couldn’t wipe her bottom with her short arms.
I was amazed by the impact this surgery can make, and also thought that maybe I could have done the surgery if it was more publicized back then. I tell people that I am 158cm tall, but actually I am 153cm tall. I think this height is from 1st grade in middle school. I thought to myself, “if only I wasn’t such a picky eater back then.”