I was born a Korean then adopted by a Caucasian family when I was two years old. Two years later, my parents would go on to adopt two other children from Vietnam. We grew up with our three older white siblings in a traditional suburban middle class home, learning quickly how to be American, shedding the culture of our birth like forgotten skin. I can’t speak for my Vietnamese sister or brother, but I often felt lost and alone while at home, in school, or wherever I went. It was as if I was living a life that I didn’t recognize. I didn’t feel like I ever fit in.
Then, magically one day, I gave birth to the most beautiful human being I ever laid eyes on. He had my DNA. He had my eyes. He had my hair. For once in my life, I had a family member with flesh and blood that was just like my own. I swore I would protect him. I felt that I loved him more than I could ever love myself. To me, he seemed ‘perfect.’
How mysteriously life unfolds to reveal circumstances that test us and change us. At the age of two, my son started showing signs of lethargy which quickly evolved into muscle weakness and spasticity. After numerous tests and hospital PICU admission, he fell into a coma. As the days and months passed, I felt progressively as though part of me was dying. Seeing him lying there, this fragile little body reflecting back a vision of my childhood self, I was all at once frightened and grief stricken and more in love with him than ever. Though he was covered with the harsh reality of medical tubes and wires connected to beeping monitors, he still exuded this otherworldly, cherub-like beauty. I wanted only to sit with him every moment to hold his hand, stroke his hair, and kiss his face.
I ultimately learned that my son’s condition was the result of an underlying mitochondrial disorder, which means that his cells don’t produce enough energy to support normal functioning. To this day, there is no cure for this extremely rare disease. I was given the choice to continue or discontinue his medical care. Faced with unknowns of his future cognition, recoverability, or quality of life, the choice seemed impossible to comprehend. In this situation, I was offered many opinions, from medical staff, family, and friends. But ultimately, the choice was mine to make. I decided to listen to my heart and my gut. I decided to choose life.
As if by a divine miracle, once I offered my decision to the universe, my son started waking up. One month later, he was released from the hospital with a naso-gastric tube, a tracheostomy, and a ventilator. Over time, he soon began speaking, eating, crawling, then using a walker to move around the house. His recovery was unexplainable and joyous. Any question of if he would be the same boy as before his hospitalization was answered with a resounding yes.
I was eager to reintroduce my son to the world for exploration. We played at the park, ate out at restaurants, and went on vacations. While out and about, I observed how other parents and children would respond to the sight of him. Some would look upon him with empathy. Others would avoid eye contact. I would often hear young children asking their parents, “What’s wrong with that boy?” in a frightened tone, which was often followed by parents shushing their children saying “don’t be rude!”
When we see children with chronic illnesses or disabilities, our heartstrings are tugged open in profound ways that may make us feel awkward if we don’t know what to say or how to act. Raising a child with a chronic illness or disability truly compelled in me a desire to bridge the gap of the love, kindness, and compassion to help others know what to say and how to act. Along with my son’s father and his primary caregiver, Victor Lodevico, the idea for SuperCaptainBraveMan children’s books was born.
Raising a child with a disability compelled in me a desire to bridge the gap of the love, kindness, and compassion to help others know what to say and how to act.
SuperCaptainBraveMan was originally a nickname given to my son for embodying the brave warrior spirit of all the superheroes rolled into one. In our picture books, my son is the inspiration for the main character, and SuperCaptainBraveMan is his alter-ego that arises when he dreams. Each book shares a story to help kids learn about others who may have different physical or neurological abilities. The stories offer positive ways for kids to foster understanding and friendship.
I’ve been overwhelmed by the incredible feedback parents, educators and medical practitioners have given to the SuperCaptainBraveMan series. There are now five hardcovers and three softcovers available on www.SuperCaptainBraveMan.com and other booksellers. With the mission to help kids learn at a young age the values of inclusivity and kindness, my hope is to help more of them grow up to be compassionate, loving adults.