■ Broadcast: YTN Radio FM 94.5 (20:20-21:00)
■ Date: October 20, 2024 (Sunday)
■ Proceedings: Professor Lee Seong-gyu
■ Dabble: Author of Onyu (Brain Paralyzed Girl's Growing Up), Kim Eun-hye
* The text below may differ from the actual broadcast content, so please check the broadcast for more accurate information.
◆ Professor Lee Seong-gyu (hereinafter referred to as Lee Seong-gyu): There is a person who recently became a hot topic on Instagram. The main character is a mother who cares for a daughter with quadriplegic cerebral palsy. The pleasant and lively daily life spent with her daughter received particular attention from parents of disabled children. Let's talk with Kim Eun-hye, who wrote a book called "The Growing Up of a Cerebral Palsy Girl." Hello, nice to meet you.
◇ Kim Eun-hye (hereinafter referred to as Kim Eun-hye), author of Onew (a cerebral palsy girl's growth period): Hello.
◆ Lee Seong-gyu: Yes. I told you about Instagram. Do you have a lot of followers?
◇ Kim Eun-hye: A lot of people are watching me because you came to see me recently.
◆ You also do YouTube, right?
◇ Kim Eun-hye: YouTube keeps asking me to put the video that Onew posted on Instagram on her pad. But I couldn't link it to Instagram, so I uploaded it on my YouTube account and opened it, and it became a YouTube format. I'm going to try my best.
◆ It's your daughter's name, right? Onew. I'm sure you know a lot about Onew and Kim Eunhye, but can you introduce them for those who don't?
◇ Kim Eun-hye: Should I introduce myself? Hello. I'm Kim Eun-hye, Grace Kim, the author of the book Onew (The Growing Up of a Cerebral Palsy Girl) and also a writer who draws life with flowers and colors.
◆ Lee Seong-gyu: Your daughter's name is Onew. The name is friendly, soft, and quite pretty. Who named it?
◇ Kim Eun-hye: Onew was actually a birth name. But when Onew was in the stomach, we thought he was a very healthy child. I knew this child was sick as soon as I gave birth, and I have to name it and post it within a month. It was so hectic that I couldn't name it. So I was thinking about it and just asked to name this kid by his birth name. Originally, his birth name was Onyu.
◆ Lee Seong-gyu: Onew. That's probably Chinese characters, right?
◇ [Kim Eun-hye] Yes, that's right.
◆ Lee Seong-gyu: Does the letter "Mild On" go like "Soft You"?
◇ [Kim Eun-hye] That's right. Actually, when I think about the birth name, I didn't know because Onew was my first child and it was my first time holding this child. The birth wasn't that bad. So I thought he was a very gentle kid, so we named him Onew. That became a name.
◆ Lee Seong-gyu: But you said that Onew was distracted as soon as she was born. Please tell me then.
◇ Kim Eun-hye: As soon as I was born. I had no idea when I was in my stomach. At that time, I was pregnant at the age of 28 and gave birth to Onew in January at the age of 29. He's 29 years old, but he's 29 years old in Korean age. It's my 27th year, so I gave birth at 27. He's really young. So I was a really healthy mother and all my children were healthy children. He came out and there were some blisters on his body. When we put hot water on it, blisters form like this, right? I had some blisters on my body. Other than that, he was such a pretty kid. So he said he moved to a big hospital because there was a blister. I couldn't understand it at the time. I just have a few blisters on my body, so why move them to a big hospital? I didn't know. I didn't understand and I was so young. That's why Onew has since had a disease called hyperpigmentation and had cerebral palsy caused by hyperpigmentation.
◆ Lee Seong-gyu: Why do you have cerebral palsy when you have pigmentation?
◇ Kim Eun-hye: Pigmentation disorder, right? I don't understand. This blisters appear on the outside of the skin, but they also form blisters inside the organs. So if you come near your eyes, your eyes may become blind. But it's the worst thing when it comes to the brain. But if it's exposed on the outside and blisters on the side of the gums, there may be no teeth. And if it's around the head, hair loss can occur. If it's just on the body, the blisters burst and then it leaves a little like a dot. But if it's just on the skin, it just disappears due to skin problems. Onew is the worst case and blisters form on the brain, so all other bodies can regenerate once they get hurt, but the brain cannot regenerate.
◆ That's why the control system collapsed.
◇ [Kim Eun-hye] That's why it's cerebral palsy caused by hyperpigmentation.
◆ Lee Seong-gyu: Yes. But even if I listen to this rare disease now, I'm also a major in this field. I think there's something like that. No matter how young you were at the time, you must have been more distracted because you were young and unfamiliar with diseases.
◇ Kim Eun-hye: First of all, at that age, there was so little information about having a child and raising this child, regardless of disability and non-disability. If I say this, my age... At that time, YouTube was almost 20 years ago, so YouTube was not active, so there was little information exchange like this. So it's really dark, and I don't know how to raise that disabled child like this. I think there was a lot of darkness like this.
◆ Lee Seong-gyu: I think the doctor must have been looking around.
◇ [Kim Eun-hye] That's right. But this disease called hyperpigmentation. It's a rare disease that is too rare to register even a rare disease. So, for example, in Korea, when there are more than 100 people with this rare disease, the country will register for it, and the country will provide some money and do things related to rare diseases. But this is a rare disease that is so rare that there are so few people that it cannot be registered for a rare disease. So at that time, I searched on the Internet and gathered with my mom and dad, who had the disease, and exchanged information. Among the friends I met at that time, she was much older than Onew, who was suffering from hyperpigmentation. She's now a high school student and a college student, and she's still contacting us after being the top student in the school.
◆ Is she also cerebral? Or where.
◇ Kim Eun-hye: Usually, when kids with dyspepsia talk about it in the past, they just had a baby, but they had skin problems. I heard you can just do that and live a normal life. But warm oil even had cerebral palsy. I can't see him in one eye, but he has only 9 teeth, and he has hair loss. Other than that, there's no big difference.
◆ Lee Seong-gyu: I don't know if you have a disability registration.
◇ [Kim Eun-hye] I know.
◆ Lee Seong-gyu: But Onew was also a little mother, but she's also the first child.
◇ [Kim Eun-hye] Yes, that's right.
◆ Lee Seong-gyu: Because you're the first child, you're a beginner in your mom's experience. It was unfamiliar to me. I wondered why this happened to me, or I wondered why it was me. Why should I be the mother of a disabled child? ’ Did you have any complicated thoughts?
◇ Kim Eun-hye: I've done too much.
◆ Lee Seong-gyu: That's what happened.
◇ Kim Eun-hye: I think I've grown enough to come out here and talk with Professor Lee Sung-kyu and talk about my past. I didn't do that then. I was so young and it's almost the first time in my life that I've experienced this kind of difficulty. Should I say it's the first difficulty? First of all, I was embarrassed. And I was upset. And then, "What should I do now? ’ I was a person who was engulfed in that kind of thought and false disability perception at that time. So I said, 'Then I have to become a disabled family that fits the disability perception that made my society think that way. But I'm not that kind of person. Until now, I've lived as a non-disabled person since I was born, and I've never actually met a disabled person before. Now all of a sudden, I gave birth to a child, and this one is disabled. Then I'm a disabled family now. How should I live my life then? Do I have to cry and be sad all the time like I say on TV? ’ I think that kind of perception made it harder for me.
◆ That's why the story of panic disorder is related to that.
◇ Kim Eun-hye: I had depression and panic disorder. So I think it was hard because I kept trying to fit myself into that perception. But the moment he took it off, he accepted his disability and said, "I can just live as myself." ’ You have to say this clearly. When I got out of it about the 'wrong' disability perception, I felt so free. It's me. You can just live as me.
◆ Lee Seong-gyu: So, I lived in a general celebrity due to the frame of a disabled family or a disabled parent.
◇ Kim Eun-hye: Trying to live.
◆ Lee Seong-gyu: You found a proper noun called Kim Eun-hye.
◇ Kim Eun-hye: I think so. Then I became free. With Onew. Onew is a disabled person. I can't say that Onew isn't disabled. Onew is disabled and I am non-disabled. But this family that lives together, living each other's lives. As you said earlier, I think I've found a life that I enjoy as a family form in harmony while living as myself with a proper noun. Now.
◆ Lee Seong-gyu: Then you saw your two younger brothers again.
◇ [Kim Eun-hye] By the way. You know what? It's hard to raise children with disabilities because I raised them, but it's usually hard to raise children without disabilities. So I sometimes joke around and say to people, "How do you raise only non-disabled children? It must be so hard. ” There are times when I say jokes like this. Sometimes. But honestly, that's what I mean. As I raised Onew, I think I was forced to realize the thoughts of this child and people, and the courage to get out of it, as you said earlier, through my life experiences. However, it is so difficult to raise only non-disabled children if you can't wake them up because there is no such situation. In fact, mentally and mentally. So I sometimes say that.
◆ Lee Seong-gyu: The younger brother of those hard-working non-disabled children said, "My sister is disabled. ” I heard you said this before. Where?
◇ Kim Eun-hye: Our Lian is the second oldest. It's very bright. Our youngest is bright, too. It was when he was about 5 or 6 years old. So I went to get a promotion review at the Taekwondo studio. It's a promotion review there, so the whole family goes there to cheer. So of course, I took Onew with me. Then, Lian saw the director and said, "Hello. Sir, I'm Lian. This is my mom. She said, "My sister next to me is disabled." So at that time, I was very uncomfortable with the word disabled. So even then, I lived very hard and actively and showed my warmth, but the word "disabled" itself was a little uncomfortable. So I blogged about it and I wrote it like that. Am I right to be uncomfortable with this? So, I told Lian, "Rian, you're disabled." Don't introduce yourself like this, but just say, "You're a little uncomfortable." ’ How about saying it like this? That's what I said to Lian. And then is it right that I teach children like that while writing a blog? The word disabled means I'm uncomfortable, but Lian wasn't uncomfortable. Because Lian's perception of the disabled is so good because she's Onew.
◆ Lee Seong-gyu: There is no frame.
◇ Kim Eun-hye: I don't have one. It was so nice. My sister is good, she lives happily, she is our family, and she is pretty. That was what disabled people were like to this child. But for me, the disabled person is what I saw on TV.
◆ Lee Seong-gyu: He's in the frame.
◇ [Kim Eun-hye] That's why I was uncomfortable. So I thought I should break this. As I said before, I talk about 'brain paralysis' and 'Our Onew is disabled.' And I'm a non-disabled person. I don't know what's going to happen yet, but I'm raising two non-disabled sons. When it comes to talking like this, I broke the frame at all.
◆ Lee Sung Kyu: YTN Radio's Lee Sung Kyu's happy comma, wait a minute. <There's no one like this.> Today, we are talking with Kim Eun-hye, the author of "Brain Paralytic Onew's Growing Up." You knew we were going to listen to a song, right? Please recommend me one.
◇ Kim Eun-hye: The song I'm going to request is "Me Too".
◆ Lee Sung Kyu: This is It was sung by trainer Megan in the OST, right?
◇ Kim Eun-hye: You know. This song is the OST of a movie. The main character of this movie is not very confident in his appearance. But when I woke up one morning and looked in the mirror, she became so pretty. Like a supermodel. But it only looks like that to this woman, because in other people's eyes, she was just chubby and just the way she was. But it's a comic movie about this woman living a life full of confidence after she feels that she has become pretty. But my daughter is in a wheelchair as a disabled person. But Onew thinks of herself as beautiful and is living a life where she feels happy. So I want to listen to this movie's message that our daily lives can change depending on the attitude of life and how we view ourselves in the end because it's not just a comic movie to me, but the content of this movie seems to come as a courage of life.
◆ You just listened to Me Too by Megan Trainer among the OSTs recommended by Kim Eun-hye. Lee Sung Kyu's happy comma, wait a minute. <There's no one like this.> We are talking with Kim Eun-hye, who is making a pleasant daily life with her five family members, including Onew with cerebral palsy disorder, her two sons, and her husband. But the kimchi-making season is coming up in Ipdong soon. But what do you mean that this kimchi has a special meaning to Onew and Kim Eun-hye?
◇ Kim Eun-hye: I got married at a young age and gave birth to Onew a year later, and Onew was sick. So I tried to make my house a little pleasant, but I couldn't touch it. At that time, after giving birth to Onew, Onew was diagnosed with disability, and after that, he was hospitalized for two months and a month. So I couldn't come home at all. For two months. And I came home for a while and was hospitalized for another month. Also, even if you don't get hospitalized, it's the first time early in the morning, 7:30 or 8 o'clock, go work out, and when you come home, it's 6 p.m. I couldn't do my housekeeping because I kept living that kind of life. But now, Onew, Lian, and Xi'an are all in school, and I've been given some time to do my own housekeeping and the conditions and things like that, so I'm going to do my best at home again, so let's do something that's a little difficult.’ Now, housewives think kimchi is very difficult. But when I made it, I thought about it. Is it because everything is made well by hand? So I thought about trying kimchi, but it turned out very deliciously. So I feel like I've settled down since then by touching my house again. It's a food that makes you feel that way, so the children also like kimchi.
◆ Lee Seong-gyu: I think you live a very fun life. If you look at social media, it seems like you're wearing clothes like a model. There's also a video clip that's fun with the kids. Also, go on an overseas trip only with your youngest son. Are you always this cheerful? Or did you make that effort?
◇ Kim Eun-hye: No, someone said that. "Are you trying?"” You know this. Since I'm a mother raising a disabled child, I asked if I was doing that on purpose to show such a pretty life and positive side. I can't do it on purpose. I'm the same. I say this, too. It's gotten a lot darker. It was supposed to be brighter. But now, my children and I have been giving birth to warmth for a long time, and there was a period of depression and such dark tunnel. It's a bit of a waste and I feel sorry for those days and when I see myself. And now, every day is so thankful, and I want to enjoy it, and I really enjoy it. Of course, I still have difficulties in every moment. When I talk about Onew, I start to cry and I still do, but I think I'm sure I've turned into a life where I enjoy every moment in my life.
◆ Lee Seong-gyu: I'm sure people around you will react like this after seeing Kim Eun-hye like that. Is there anything you can think of?
◇ Kim Eun-hye: I really get a lot of touching and grateful DMs. On Instagram. But as I said earlier, if you have a disabled child, the life of that disabled child is a little sad, but I can't imagine how this child's life will go. But the most pitiful person at that time is my mom. I feel sorry for him the most. How should I live? As I said before. How should I dress and will people criticize me if I wear bright clothes now? "She's a disabled mother and wears bright clothes like that.’ Should I do this? I get depressed because of these crazy thoughts. But a mom sent me a DM like that. I gave birth to a child and they said I was disabled.’ So he said the same thing, 'I'm going to throw away all the luxury bags in my closet now.’ That's what he thought. But one day, I met him on Instagram and he said, 'Oh my gosh, what's this girl? You're laughing and enjoying life like this.’ He thanked me so much through DMs and asked me to continue to show him like this.
◆ Lee Seong-gyu: And then you released a book. "Growing up of a cerebral palsy girl." But why did you think of releasing a book?
◇ Kim Eun-hye: At that time, I thought Onew would be a normal person. It's so funny. When Onew goes to school, he has to explain this disease to his friends. It's hard to explain every single one of them every day, so I wrote a small postcard and wrote a postcard saying, "Our Onew had this disease, and this is how we live in a good happy family," and now I started thinking about giving it to Onew friends. My husband said, "Why don't you write a book? "Eun-hye." So I wrote a book with the intention of distributing it to Onew friends or people around me. At first. But a lot of you wanted to buy this on Instagram, so I took it again.
◆ Lee Seong-gyu: Yes. If you listen to this show, you'll make a big hit again.
◇ Kim Eun-hye: I wanted the kids to see it. It's not a book that's too hard for elementary school children to read together. It's a book that you can easily enjoy and read movingly.
◆ You're originally an artist, aren't you? Draw a picture.
◇ Kim Eun-hye: When I was young, I majored in fashion and went to a fashion company. But after getting married, I was thinking about what I would do with Onew for the rest of my life while raising Onew. Onew can touch his hand like this because he likes the act of being able to draw with a pen. So, I thought I should draw with Onew for the rest of my life, so I started learning to draw then, and now I'm holding my third solo exhibition.
◆ Is it going on right now?
◇ Kim Eun-hye: It's in progress. Now, the gallery in Seocho-gu, Seoul is holding an exhibition under the theme of "Colors of Courage, Colors of Courage."
◆ When does the exhibition end?
◇ Kim Eun-hye: This exhibition is until Oct. 26.
◆ Lee Seong-gyu: But last time, you donated the proceeds from the sale of your work at the exhibition.
◇ [Kim Eun-hye] Yes, that's right. After I met Onew, I came to know about donation and met the world. After Onew was sick at first, I had surgery at Seoul National University Hospital. So for the first time with my husband, I thought, 'There were so many sick children. Oh, my God. ’ As I learned about those things, I donated to Seoul National University Hospital. Next, we're called "Purme Foundation". Sean said this before. There was no rehabilitation hospital for children in Korea.
◆ Lee Seong-gyu: Lou Gehrig?
◇ Kim Eun-hye: No. Just a rehabilitation hospital. There was no rehabilitation hospital just for children. So, I'm in a rehabilitation hospital with adults, but there's no rehabilitation hospital just for children, so I set it up as a donation. With the Purme Foundation. We were connected to it, so we ran with Sean and donated. It became a connection, so there's another donation foundation called the Honor Society. So I worked as a member there. And recently. I draw like this and donate my paintings and donate the amount of money I sold at the exhibition. Recently, our youngest member went to a cafe with friends on the 1st and donated all the proceeds to children with disabilities such as Onew. To be honest, that donation is the most proud and memorable donation for me.
◆ Lee Seong-gyu: It's DNA inheritance.
◇ Kim Eun-hye: I'm so grateful. Then.
◆ If there's anything else you want to do in the future, please introduce it and wrap it up.
◇ Kim Eun-hye: There are so many things I want to do. These days, I just think that if I can help improve disability awareness, I want to work harder on showing myself.
◆ Lee Seong-gyu: <There's no one like this.> Today, we had a pleasant time with Kim Eun-hye, the author of "The Stretch Growth of a Cerebral Palsy Girl." Thank you for the nice words.
◇ Kim Eun-hye: Thank you.
◆ Lee Seong-gyu: <There's no one like this.>You can listen to it again through the YTN radio website and YouTube.
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