On a normal day, Vivian, who just turned 37, actively taps one of her fingers, dances with her eyes and speaks with a hunger for life. She was born with a neuromuscular disease called spinal muscular atrophy. Her mother, Madame Yong, now 63 years old, has been her full-time caregiver since she turned 19.
I first met Vivian in 2014. I was at her bedside during a church group carolling session and in the midst of our singing, my friends urged me to sing a song I had written to her. Her spirit, dancing like a warm flickering flame, eased any consciousness I was feeling about my spasms.
I sang, she danced and our friendship grew.
Since then, Vivian and her mother has invited my friends and I to their home gatherings to share their passion for Barbie dolls, talk about the latest drama series and to have karaoke sessions. My favourite was when Madame Yong switched on the lights to their toy disco ball and gave out funky head extensions, so we could all rock our heads to the songs.
Recently, during one of our conversations, my friend, Joan, commented on how giving Vivian’s mother was. We decided that perhaps, a song could be worthy of her. At our next gathering, Madame Yong enjoyed a rare shopping trip out, while Vivian and I decided what to put into the song.
Vivian’s conversation with me below:
“I was in and out of Intensive Care Unit when I was 19 and in my early 20s. This was the most painful period for my mother. She said she was constantly living in shock then, as I could have lost my life many times then.
“How did she handle that period?”
“Very positively. There were other mothers with children like me in the hospital and Mama would urge them to be positive, so that their children could feel positive too. She would tell them ‘I’ve taken care of my daughter for so many years, so you can do it too.’”
“Wow.. your mother is strong.”
“Yes. Over the years, she gave up her dreams of learning how to cook, learning English, learning to do massage and all that freedom to go out, so that she could care for me. She raised my brother and I on her own. She’s literally strong – she has even carried me up and down a flight of stairs a few times on her own.”
“What do you think her greatest wish for you is?”
“For me to be healthy and happy. She hopes that one day, I’ll be able to stand and be independent.”
“What about you? What is your wish for her?”
“My wish is for her to be healthy and happy. I hope that one day I can stand too.”
“Same wishes for each other?”
“Yes, if I’m able to stand… One day, our roles can be reversed.”
“Have you ever asked yourself if something good could come out of your pain?”
“I think my mission is to let people see me, so that everyone can see that even though I’m like that, I can still be cheerful.
“Do you know what your mother’s mission in life is?”
“She takes care of me, so that I can carry out my mission.”
Vivian has chosen to sing the full song to her mother in private. She did, however, record her voice for some of the lines. You can hear her voice at the last part of the song below.
I want to tell you about Vivian and her mother, because they inspire me so much. Especially more on days when I feel lost in the woods, which happens whenever I question my vocation and life’s purpose.
Through their being, they show me – that in love – we are free to choose our grandest dreams.