Nari Lee and Minjae Lee
Nari Lee and Minjae Lee are mother and son. Nari left nursing to provide much of Minjae’s daily care as he grew up with complex disabilities in Tianjin. She continued to support his communication, health, music, and adult relationships after the family moved to Baltimore in early 2034. Minjae experienced her as his “safe harbor,” a person with whom he could be frightened, exhausted, or vulnerable without losing acceptance.
Overview
Nari is one of the people most familiar with Minjae’s communication. She reads changes in his movement, expression, vocalization, and attention; coordinates daily medical care; supports eating and tube feeding; and handles intimate care with dignity. Their bond also includes language, food, music, humor, migration, and Minjae’s developing independence.
Origins
Minjae was born on October 1, 2015, to Nari and Joon-Ho Lee. His cerebral palsy was evident from birth, and the family adapted to his physical needs from infancy. Autism, epilepsy, POTS, and gastroparesis were recognized over time. He also developed severe chronic fatigue without a separate ME/CFS diagnosis.
Nari became a primary source of comfort and coordinated much of his daily care. As she learned his gestures, sounds, and changes in expression and muscle tension, she gained detailed knowledge of his baseline. Seizure management, mobility support, sensory accommodations, and later feeding-tube care became parts of the family’s routines.
Dynamics and Communication
Minjae called Nari “Eomma,” and she called him “Min-ah.” During medical episodes she could reassure him, “Min-ah, it’s okay. Eomma is here. Let’s take slow breaths together. I’m not going anywhere.”
Nari recognizes subtle changes in Minjae’s posture, expression, voice, breathing, and attention that can signal pain, seizure warning, POTS symptoms, overload, or distress. When his usual signals become faint through fatigue or a postictal state, she looks for changes from his individual baseline rather than assuming silence means comfort or consent. Her familiarity helps her respond early, although it cannot prevent every crisis.
Nari allows time for Minjae to respond through speech, AAC, gesture, or other signals. She explains his communication to people unfamiliar with him without assuming she should always speak for him. Her support makes room for his preferences and relationships beyond her.
Nari handles positioning, feeding-tube care, medication, bathing, and dressing with attention to Minjae’s dignity and current condition. She adjusts her touch and voice as he wakes or recovers from a seizure. These routines provide both practical support and familiar contact.
Nari’s cooking provides familiar Korean and Chinese food adapted to Minjae’s gastroparesis and current tolerance. She prepares zhōu (rice porridge) and other gentle dishes from recipes she knows by heart. Meals can offer nutrition, comfort, and a connection to home without requiring Minjae to eat before his body is ready.
Cultural and Family Life
Nari and Minjae shared a Chaoxianzu household shaped by Korean and Chinese language and practice. Korean and Mandarin were Minjae’s principal childhood languages, and he understood both. Nari continued speaking and singing in Korean after the family moved to Baltimore while also using Mandarin, English, AAC, gesture, and touch according to Minjae’s access at a given moment.
Nari had learned recipes and caregiving practices from women in her family, including her mother in Tianjin. She prepared ‘’juk’’ or ‘’zhōu’’ and other familiar foods for Minjae, adjusting consistency, portion, and temperature for his gastroparesis and current tolerance. Those adaptations kept family practices present while meeting his individual access needs.
Nari’s authority in medical settings came from nursing experience and sustained observation of Minjae’s baseline. She could identify changes that a clinician meeting him briefly might miss and documented them for appointments and admissions. Language barriers and clinicians who discounted family knowledge sometimes complicated that advocacy; Minseo, Joon-Ho, or another interpreter could help with precision when needed. Nari remained an active participant in decisions about his care.
Shared History and Milestones
Childhood and adolescence
As Minjae’s needs and diagnoses accumulated, Nari coordinated appointments across specialists, kept symptom logs, managed seizures and equipment, and learned the specific signs by which he communicated pain, fear, or fatigue.
Musical development
As Minjae’s musical talent emerged, Nari supported his piano studies through Tianjin Juilliard Pre-College. She helped arrange transport to lessons, adjusted practice around medical needs, and supported him through performance anxiety.
Rome International Piano Competition (2032)
Nari traveled to Rome with Joon-Ho, Minseo, Minh, and Minjae for the November 14–20 competition. She helped with care in an unfamiliar setting, including the morning routine after nocturnal seizures, and watched Minjae win first place in the Piano Senior Division. The performance and travel also cost him substantial energy.
After Minjae’s performance, Joon-Ho told him he was proud. Minjae began sobbing from emotional and sensory overload; Minh noticed that he was about to faint and positioned him safely before he lost consciousness. Nari and the family supported his recovery and let him sleep until he was ready for the results.
Post-Rome health crisis
After returning to Tianjin, Minjae slept through much of the first weekend apart from medications. His seizures and fatigue worsened over the following weeks, eventually including a prolonged status-epilepticus episode. By the third day of the initial crash, Nari was considering hospitalization. Her monitoring and records gave the family and clinicians a longitudinal account of the decline as they assessed the limits of his available care.
Baltimore relocation (early 2034)
The family pursued an international move during late 2033 and relocated to Baltimore in early 2034 for specialized care. Nari left extended family, familiar clinicians, and cultural community while rebuilding Minjae’s care and support in a new medical system and language environment. She grieved what she had left without regretting the decision to seek care for him.
Minjae’s engagement (December 27, 2034)
When Minjae proposed to Minh on December 27, 2034, Nari welcomed his choice of a partner. She had known Minh since childhood, treated her as a second daughter, and seen how well Minh understood Minjae. Alongside happiness and relief that he had someone who loved and advocated for him, Nari recognized his own capacity for love and commitment despite others’ assumptions about his developmental delays.
Minjae and Minh’s wedding (early fall 2036)
Nari helped keep the morning quiet and, with Joon-Ho, bathed and dressed Minjae for the wedding. During the reception, she joined Minh and Mei in supporting him through spasms, seizure clusters, personal care, and bedtime. Her practical involvement accompanied happiness that he and Minh were building a life together.
Twenty-first birthday (October 1, 2036)
While preparing the house for Minjae’s birthday, Nari told Julian Reyes that medical uncertainty during Minjae’s infancy and childhood had made her afraid to assume he would survive into adulthood or have a life beyond hospitals and pain. She had allowed herself to count toward ten, then fifteen, then twenty, while twenty-one once felt too distant to imagine. Reaching the birthday brought relief at his survival and recognition of the life he had built: his marriage to Minh, music, friendships, and freedom to argue, refuse, and make adult choices. Nari’s happiness included his ordinary stubbornness and displeasure because both belonged to a life that was his.
’‘I Am Still Me’’ (2036–2037)
After the wedding photographs drew public attention, Nari joined the family decision about the documentary. The film included her account of a severe cerebral-palsy flare and showed her as one part of Minjae’s wider family and care network. She also helped Julian and Kayla with food, privacy, and rest during filming, without expecting work to resume before they and Minjae were ready.
Public and Private Life
Nari accompanied Minjae to appointments and musical events, coordinated with specialists, and challenged providers who dismissed his needs. Her records and familiarity with his communication gave her advocacy a specific clinical and personal basis.
At home, Nari helped Minjae wake gradually, position his body, take medications, receive tube care, bathe, and dress. She stayed with him through seizures and welcomed him back to awareness afterward. When nausea or fatigue made eating difficult, she offered familiar food and waited for his readiness rather than making him eat on a fixed schedule.
Their private life also included Korean and Mandarin, family food, Nari humming as she cooked, her hand on his arm during a procedure, and her presence while he practiced piano. These ordinary moments connected him to family heritage as well as to her.
Emotional Life
Nari’s love for Minjae coexisted with vigilance. Seizures could occur without warning, and POTS, low body mass, gastroparesis, drug-resistant epilepsy, aspiration risk, and rapid fluid loss made some otherwise ordinary illnesses dangerous for him. Her fear of an emergency she could not prevent, especially one that occurred while she was absent, did not disappear as she became more skilled at responding.
She grieved Minjae’s pain and the independence and ease she had once imagined for him while recognizing his courage, stubbornness, musicianship, and capacity for love. The Korean concept of ‘’han’’ described that accumulated sorrow in her family life; it coexisted with her practical care rather than defining Minjae by what he could not do. Neither grief nor fear kept her from wanting him to have pleasure, relationships, and choices beyond medical survival.
As Minjae’s “safe harbor,” Nari tried to maintain a steady presence during crises, often holding her fear until the immediate danger passed. The composure he relied on required effort and could leave her exhausted.
Nari took joy in Minjae’s performances, his relationship with Minh, and his ordinary happiness. She also knew the physical cost that a public triumph could carry for him; pride and grief remained present together.
Mothering Minjae shaped much of Nari’s adult life through care coordination, advocacy, music, food, language, and household routine. Those responsibilities did not exhaust either person’s identity.
Health and Access
Nari’s daily care included mobility assistance, positioning, and muscle-tone monitoring for cerebral palsy; sensory and communication accommodations for autism; seizure recognition and response; hydration and position changes for POTS; and food adjustments and tube care for gastroparesis. These tasks required attention to Minjae’s condition on each day rather than one fixed routine.
She maintained written medication schedules, including timing, interactions, and necessary food. Her logs recorded seizures, symptom changes, and treatment responses for medical appointments.
Minjae’s morning routine usually took 90 to 120 minutes. Nari worked with Joon-Ho, and later Minh, through gradual waking, positioning, medication, and feeding-tube care. She adjusted her voice and touch to his condition as he emerged from sleep.
Nari knew which food textures, temperatures, portions, and timing Minjae tolerated. During symptom flares, she offered gentle encouragement and familiar foods without turning eating into a contest of compliance.
She helped maintain blackout curtains for seizure recovery, quiet spaces for sensory overload, and medical equipment within the ordinary living areas of the home.
The international move prioritized Minjae’s access to care while separating Nari from extended family, cultural community, and familiar places. She continued rebuilding those connections in Baltimore.
Responses to Crises and Change
Early diagnoses
As diagnoses accumulated, Nari learned to coordinate specialists, document changes, and ask for adjustments when standard protocols did not fit Minjae. Her nursing experience helped, while sustained observation taught her what was specific to him.
Repeated medical crises
Repeated hospitalizations, seizure clusters, POTS episodes, and gastroparesis complications made Nari more practiced in emergencies while adding to her exhaustion. She could remain calm for Minjae and experience fear at the same time.
Rome competition (2032)
Rome joined pride in Minjae’s performance and victory with the immediate cost to his body. His faint and later decline made it difficult for Nari to separate celebration from concern about how much he could sustain.
Post-Rome crisis and relocation
The post-Rome decline made the limits of Minjae’s available care in Tianjin clear to the family. Nari supported the decision to relocate for specialized care, despite the relationships and routines she would leave behind.
Minjae’s engagement
Nari welcomed Minjae’s engagement to Minh and recognized his choice of an adult partner. Minh’s place in the family broadened the circle of daily care and advocacy that Nari had long coordinated, even as sharing responsibility brought its own adjustments.
Continuing Relationship
Nari remained Minjae’s mother, advocate, and one of his most trusted support people after he married Minh. She did not disappear from his care when Minh became his wife, and Minh did not replace her. Their roles overlapped within a family network that respected Minjae’s choices while continuing the daily work his health required.
The relationship continued to include intimate care, medical observation, food, music, humor, language, and ordinary time together. Nari’s long familiarity with Minjae’s body and communication remained valuable, while clinical decisions still belonged in collaboration with Minjae and his medical team.
The security Nari offered also helped Minjae venture into relationships and a wider life. He could return to her for help without being made to feel that needing care had cost him adulthood or belonging. Her safe harbor supported growth because he did not have to choose between exploring what he wanted and remaining loved when he struggled.
As Minjae’s adult support system developed and Nari aged, she moved from principal hands-on care toward more oversight and emotional support. The transition challenged an identity formed through years of being the person who knew his smallest signals. She feared who would recognize those needs after her death, even while knowing that Minh and Minseo loved him. Learning to trust them and adult services meant sharing responsibility without treating her own presence as unnecessary or subordinating Minjae’s choices to her fear.