The Worst Day of My Life

By Katherine, Mitochondrial disease, United States, June 5, 2020

Mito Strong

Most high school students worry about getting good grades to make their parents happy or making friends in high school. I was not one of those students; towards the end of my junior year of high school, the only concern was that I would be in school when my sister took her last breath. I was about ten years old when my sister first got sick. I honestly do not remember because I did not care that my sister was sick, I just wanted someone to play Build a Bear with. All I knew was that by age 13 she could not walk, eat or drink anything without having a tube stuck down her nose or her stomach. My mom talked to me about ADHD, autism, mitochondrial disease, type one diabetes, feeding tubes, home health care, and most of all kidney failure. I saw procedures that a teenager was not supposed to see, I helped nurses, I watched out for seizures, I did everything my mom told me too. When I was 13, I started to learn what all these terms meant; and by age 14 I was told that my sister was not expected to live past 16. So much had happened between the ages of 10-16. I felt like the bravest sister ever, who could conquer anything.

The day that I feared the most had come; the day that my sister would take her last breath. I was not mentally prepared for this day because I never cried while she was sick or in the hospital. I was strong for her and believed that everything would be okay. I was hoping that she would come home like she always does after long hospital stays. I did not even know what was happening it felt like a wildfire had happened; my world fell apart within minutes.

Honors World History was my last class of the day and I was taking a test on World War II when the school nurse popped in and said that I had to leave. I left the test unfinished because I did not care about World War II. I was not even supposed to be in an Honors history class, in fact I hated history so much that I could not even have the motivation to remember when Columbus sailed the ocean blue. After I quietly packed my backpack, I met up with a lady in the front office whom I knew was one of my sister’s nurses. She would not tell me what was going on, but I knew exactly what was happening. My sister only had a few hours left. I remember sitting in the backseat overwhelmed by what had just happened while biting on my fingernails nervously. The worst part of the car ride was the fact that she would not talk to me. The car smelled like hospital scrubs and she had a bunch of her personal belongings on the seat next to me, so I just left everything alone and stared out the window.

She did not drive to the normal ICU side of the hospital that I had visited a billion times; instead she parked outside of a brown building that said Employee Entrance Only and Johns Hopkins Medical Library This Way. The quiet nurse calmly said to me, “This way is faster.” I was as silent as a mouse the whole time we walked/ran through the hallways that seemed never ending as if I were in a corn maze. When we got to the ICU section of the hospital, I realized that my sister was moved into a room. She had a drug hooked up to her IV that was scaring me by the moment. It felt like I was in a sand timer and could not add more time. She was so pale that I could not even look at her without feeling regret. There were two tubes around her face one for oxygen and one for her feeding tube; by now I was used to the tubes being there on her face, but she actually looked like she was going to die within seconds after I walked into the white walled hospital room that smelled like someone used too much Purell.

The hospital room was a decent size; I felt like more than ten people could fit into the space around the hospital bed. The only people in the room at the moment, were my grandmother (also known as Poa Poa), my parents and I. My mom and my grandmother were sobbing while holding my sister’s pale and cold hand. The ugly blue tissue box laying on the bed was almost empty and did not even look like real tissues. My grandmother kept talking to me saying, “Kristen (my sister) is my best friend, she is very smart and beautiful. Aren’t you going to miss her too?” I did not respond. I think my whole body was numb and my mind was racing like that SpongeBob scene where he is so stressed out that he forgets his own name. In fact, I did not feel anything; I was not sad or angry. I could not process my emotions all I knew was that my sister was going to die in a few hours or less. I had not cried since I stepped into the room and even my dad was crying. My dad never cried.

My sister was a fighter, a warrior, she was unstoppable. We waited while surrounding the white lifeless hospital bed, but my sister was still breathing. She was not ready to be an angel in heaven. I got to the hospital around 4:30pm and the clock now read 6:00pm, but it felt like an infinity number of years had passed. I was starving because 5:00pm was my dinner time, but I was too scared to ask my parents to get me something to eat. I felt like a burden because my sister was everyone’s favorite child, she was a miracle child. If I got dinner my sister might die and I would not be there or my parents might miss it and I did not want that to happen. I don’t think that anybody in the room cared that it was passed my dinner time, everyone was holding my sister’s pale, cold hands waiting for something to happen.

Her death was not like Grey’s Anatomy portrayed deaths. There were no beeping machines or doctor’s rushing in to shoo the family out. I did not find this information out until several months after her death, but my parents decided to give her a drug to put her down like an animal hospital would. They did not want to see her in any more pain. I had no idea what was going on, why she was pain or why she was dying. I just knew that in a couple of minutes I would be an only child. Or would I? Would I be an only child? I have a sister biologically.

Her hand stopped moving and she closed her eyes. Since I was only 16 years old I thought she was asleep at first but my grandmother started sobbing, that was the only sound I heard. And then my mom started crying, my dad did too. I was on the verge of crying when I just let all my emotions out. It was not cliché like in books where they say the cried a waterfall, it was a relief but also the worst feeling ever. I felt dead inside, just like my sister. The last memory I remember in that hospital room is having to pack all of our belongings up and go home with one less child in the car.

That night, my parents and I ordered Chinese food from a cheap restaurant by our house. My grandma was dropped off at her assistive living place and she was mumbling to herself the whole time, “I miss you Kristen. You are my best friend.” The only words spoken between my parents and I that night were, “Don’t you miss Kristen? And Isn’t it quiet without her?” Nobody said goodnight or talked about what we had planned for the following day. I was scared I would say the wrong thing and I also had not told any of my friends what had happened.

I do not remember anything that happened before I went to bed, but I felt empty and numb kind of like a piece of me was missing. Being the typical teenager, I was, I felt like I had to post on social media what had happened so my peers would not wonder why I would not be in school the next day. I posted on Instagram a video collage of pictures of Kristen and I together. To be honest, I did not have many photos of us together. I captioned the post, “On Monday April 11, 2016 heaven gained another angel. Kristen Elizabeth Chung was the best sister I could ever ask for. She was always smiling, laughing, and she loved her stuffed animal dogs. I remember that she was never afraid of needles, she conquered type one diabetes, kidney failure, mitochondrial disease and so many more medical complications. She will be missed. And as my summer camp moto says, ‘laughter is the best medicine’ She always believed in the positive moments in life and. She smiled while I cried at Disney World when I was 3 years old. I still have the pictures to prove it. She teased me a lot, but I knew it was for fun. We shared the same birthday, but we were born two years apart.

 

*Find others with Mitochondrial diseases on RareConnect, the online platform for people affected by rare diseases

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