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Endings and Beginnings scrap

by Seo Hyoingo link Translated by Roxanne Edmundsgo link September 4, 2025

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During her final years, my grandmother lived with my aunt in the city of Naju in South Jeolla province. My grandmother had always dreamed of spending her old age close to her son and his family, but his circumstances prevented that from happening. He had divorced his wife and was in no position to look after anyone. His children, that is, my grandmother’s two grandsons, ended up taking jobs in Seoul and settling in Gyeonggi province. According to my aunt, my grandmother often said the only person she could trust was her son: that was the degree to which she treated my aunt with indifference. But in the end, my grandmother accepted with a strange calmness the fact that she had no one else to rely on but my aunt. And my aunt would say with the same calmness that it brought her happiness to spread out her mother’s quilt in the master bedroom where hung a photo (seemingly restored through digital technology) of my uncle, who had passed away twenty years earlier. In this way, the cohabitation be­tween my grandmother, who had reached her mid-eighties, and my aunt, who had entered her sixties, continued for ten years, only ending with my grandmother’s death. Death will find a way to make an end. An end that ends all, and makes a new beginning impossible.

 

It seems that care is needed primarily at the beginning and end of our lives. At the beginning, we usually receive care gladly. But at the end, it may be difficult to do so. This may happen because, at the end of our lives, our bodies are often afflicted by many diseases caused by our protracted lifespan. We live longer now than nature intended, and we pay for our longevity dearly with both physical and psychological signs of aging. My grandmother, as far as I knew, always worked diligently and never slacked off. Maybe that’s why she never got rich. Is this cause and effect, I ask. The poor who live diligently. People who are too poor to afford to be lazy. Today’s news reported on the laborious process of minimum wage negotiations, and showed an anonymous interview with a caregiver. She said that she had been doing this work for thirteen years, and in that time had never made more than minimum wage. This year the negotiation is between labor groups who demand the minimum wage be raised by 900 won per hour and industry leaders who want a 120-won increase. The care worker takes care of seven or eight elderly people every day. She prepares their meals and checks in on them. “Did you do anything today?” she asks. “Oh yeah, I watched some television,” they reply.

 

My grandmother liked watching television too. She liked singing contests and weekend soap operas. Surprisingly, one of the shows she liked was American professional wres­tling. Maybe because it was popular when she was young. My grandmother was easily impressed by the world of profes­sional wrestling. She would marvel at the scenes where the wrestlers thudded to the ground or crashed into each other and would cry, “Oh dear, that looks painful.” I would reply, feigning special insight, “Grandma, it’s all fake, it’s an act!” My grandmother just kept her eyes on the TV, as if she hadn’t heard me. And then she would mumble, “They’re so lucky to be healthy. So lucky to be healthy,” about those muscular athletes.

 

Before my grandmother got sick, she would still make breakfast in the mornings for my aunt. The following year, despite thinking she was in good health for her age, my grandmother had to be admitted into a nursing home—where her favorite wrestling shows were definitely not shown on TV. My aunt wanted to take care of her until the end, but it was just too much for her. She couldn’t be home during working hours and my grandmother needed care at that time. Wearing a surgical mask, Grandma was admitted into a nursing home where she could receive care. Her formerly hardworking body, now small and thin, could barely move without professional care. I was also wearing a mask as I watched my grandmother be taken to the hospital. We couldn’t see each other’s faces completely. I didn’t remove my mask because I didn’t realize that would be the last time I saw her. It was the peak of the coronavirus pandemic. She passed away before it was over. Nearby stood my aunt, who could very well soon need care herself, her tears frozen on her face. Her face, the image of her mother’s.

 

 

There is something that I never told my grandmother. Did she know the words “Down syndrome”? She never learned to read. It’s possible her great-granddaughter’s disability might not have been part of the knowledge she acquired through her deeply profound life. Or maybe she did understand everything. My aunt would say, “How long has she got left? There is no need to tell her.” There are quite a few moments when those words pierce my heart. Probably more so for my aunt. My grandmother had seen my daughter until she was about six years old. Occasionally, she would call and ask if my daughter was speaking yet. At that time, she wasn’t yet able to speak properly. Down syndrome is accompanied by developmental disabilities, the most typical being problems with speech and language. It was the following year that my daughter was able to say the word “grandmother” properly. She should have called my grandmother “great-grandmother,” but considering her level of language development, it’s unlikely she would have been able to pronounce it correctly. It is difficult to describe a child’s development through numbers and graphs. Every day feels the same, but as those days add up you can see her change. But then one day, she goes back­wards. You question, is this child growing up? But that ques­tion seems pointless as you see her body change. When she was just born, in the neonatal intensive care unit, I wondered how this baby, smaller than my forearm, would grow up. But now the child reaches my waist and wraps me in a hug every morning. It is in that moment, when I bend down to return her embrace, that I start living. I am grateful that every day is the same, and feel that the accumulation of this grati­tude achieves something.

 

I have been raising a developmentally disabled child with Down syndrome for ten years now. The method and intensity of her care differs from that given to my non-disabled second child. It took me several times longer to potty train my eldest compared to my second child. Only quite recently I had worried that I might have to change her diapers into her adolescence. But there came a day when she went to the toilet on her own. It’s not just her personal hygiene that I need to be worried about. Communicating with our daughter is my wife’s job. My wife can quickly understand what she wants to say or what she is feeling by looking into her eyes. It’s like a conversation between souls. But my wife doesn’t want that conversation between souls. She wants our daughter to pronounce the words herself, even if they come out slurred. It would be nice if we didn’t have to speak with words to communicate smoothly, if we could converse through ultrasound or telepathy, but that is impossible. My wife can have that conversation between souls with our daughter simply because of the accumulated experience of caring for her over a long period of time. The fact that I’m not able to converse with her to that degree may be because I have taken a step back from her care. Nevertheless, there is a limit to which souls can converse. A few days ago our daughter had a high fever and was irritable. My wife said that it was menstrual pain. Turns out it was an ear infection. My wife sighed at her child who couldn’t say the words, “My ears hurt.” She felt regret at being a mother who couldn’t work that out.

 

Lately, our second child, who is one year younger, has been helping more. My wife and I worry that our younger child might feel burdened by the thought that she has to care for her older sister for the rest of her life. This isn’t a special feeling. All parents hope that their children are happy and life runs smoothly for them. Some people hope their child does well in school, others that they succeed socially or economically. Our wish is just one amongst the many. But in order to achieve it, we can’t just send our daughter to a private academy, get her tutoring, or have her solve problems in a textbook. We can only do it ourselves. Thankfully, since our youngest has grown up with her older sister, she has naturally accepted the concept of disability. I believe that when someone has a disabled person in their life, has watched their care, and recognizes that existence, they will become a better person for it. I hope that more people can have this opportunity. I hope that many people will engage with wheelchair users on their commute to work and be considerate to people on the autism spectrum in public places.

 

Our youngest has been taking care of her older sister in her own way, quite differently to how my wife and I think things should be done. Her method is simple. She makes her sister angry! Sometimes she tells her that she is cute, pinching her cheek and patting her backside. Other times, when she doesn’t like that her sister has burst into her room, she chases her out and locks the door. Our older child, after experiencing this several times, gets annoyed, then cries and, in the end, she speaks. Recently she has said the following: “I hate you!”, “Ah, really!”, “Stop it!” Thanks to our youngest, our eldest child is improving her language skills. Our two children are taking care of each other in the way only sisters can.

 

 

Japanese scholar Kimihiro Masamura’s book Having a Child with Down Syndrome tells of the sadness and joy he experi­enced over the twenty years he spent raising his second child who was born with Down syndrome. In the book, the author’s wife says, “From the time our child started school until now, spring has been a painful season for us.” In the 1970s, when the author’s child was attending school, Japan’s policies on educa­tional rights and the care of disabled children were somewhat lacking. Even if the system has improved, at least in terms of recognition, spring is not an easy season for the guardians of children with disabilities. As the school year changes to the next, the environment changes, and for disabled young people change can feel like a heavy punishment. A few years ago at a public hearing in Seoul, parents of disabled children pled on their knees for the establishment of a special school. Their photographs went viral. All they wanted was for their children to be allowed to go to school, but many people at the hearing wanted a hospital constructed at the same site. A lot of time has passed since then. Those children, whose mothers were on their knees, will be adults now. Did they graduate? What sort of members of society have they become?

 

Our daughter attends a special school. Luckily there is one close to our home. Every year at my child’s school, as the spring approaches, a not-so-funny comedy is acted out. It becomes an urgent matter of concern to the parents whether or not their child will be able to stay at the same school when they move up from elementary to middle school. It isn’t all that different from the fervor around the entrance exams for science or foreign language high schools. Only the competition is backwards. In order to continue attending the special school, you have to prove that the child is so severely disabled they require a special school, that they often engage in impulsive behavior, and that they need the intensive care provided in the special school’s facilities. Normally, you would zealously educate your child to overcome these things, but for the school entrance requirements our children must be a little more lacking. That’s how they can go to a special school. And not have to move to an inclusive program at a regular school.

 

I know that, in theory, the ideal situation would be for her to attend a regular school and receive an inclusive education with her non-disabled peers. However, I can also calculate how dif­ficult it would be to achieve that reality. In a world where the goal of education is to get into a good college, disabled students can easily be perceived as an interfering presence in the college entrance exam preparation classes, even as obstacles. We are in a situation where there is a general failure to improve the awareness around inclusive education and its environment, while the expansion of special schools is being increasingly delayed. In the meantime, the care of disabled people is left to the individual. I don’t intend to give up the job. But I do want to stop having to prove my child is lacking. It is so hard to hide the pain of that process. This isn’t care at all.

 

I don’t know what the future holds for my child. Just as I couldn’t have known that she would come to me, I can’t know where she and I will go in the end. Perhaps she is the one taking care of me now. If I am becoming a better person, it is because of her care. I do not know who will care for me at my “end of the end,” just as I do not know who will care for my daughter there­after. I think that’s fortunate. I will continue to take care of my daughter without ever knowing the future. In just the same way my daughter cares for me.

 

Writer 필자 소개

Seo Hyoin

Seo Hyoin

Seo Hyoin’s works include the poetry collections Behaviour Guidelines for the Boy Partisan, The World War of a Hundred Years, Yeosu, I Hate Myself Because I Love Myself, and There is No There, as well as the essay collections This Is All Because of Baseball, Welcome to the World, My Daughter, and Anyways, It’s a Pop Song. He has won the Kim Su-Young Literary Award, the Daesan Literary Award, and the Cheon Sang-byeong Poetry Award.

Translator 번역가 소개

Roxanne Edmunds

Roxanne Edmunds

Roxanne Edmunds is a translator based in the UK. She studied Korean language and literature at the University of London School of Oriental and African Studies and attended LTI Korea Translation Academy.

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