Cordelia LeeA Memoir of Breath, Fear and Becoming
My eyes wet with tears, upon the memory’s return; a jaundiced-looking baby with a feeding tube in his nose. Then I turned my head to the voice which changed my life forever.
When my baby was born, I was a mixture of happiness and exhaustion. Before I could enjoy motherhood, within a month or so of his birth, I was informed that my baby had a rare disease that may lead to liver failure.
As more and more medical jargon overwhelmed our minds, our hearts were in a perpetual loop of chaos and confusion at the new reality. Before I could properly understand this disease, I had a realisation soon after that there was a possibility my baby might not survive it.
It was tears and fears night after night for a month. No matter how I tried to be brave in front of my baby, I felt my whole world had collapsed. The doctor added more to the uncertainties on my baby’s fate, with his constant advice, “Wait and observe. Don’t overthink. Just wait and see whether he will recover from his jaundice. If not, we need to plan for his liver transplant surgery.”
My fears grew day by day, with the thought of the unavoidable challenges my baby would face. Often I wished I could take my baby’s place instead. Feeling overpowered by the unknown, I felt there were no answers that could save my baby from his pending destiny.
I finally decided to face my greatest fears; the possibility of my baby’s young death. Immediately, a tornado rose within me, threatening to break down my home’s walls. In my semi-conscious state of uncontrollable turmoil, I decided to take control of my state by slowing down my breaths.
My mind became calmer, my emotions became less entangled. Yes, what if my baby were to die a young death? I could not accept the only memories my baby would carry to his death being physical pain, hospital stays, doctors and nurses. What kind of a life was that?!
If my baby was fated to die young, I insisted his last memories must be of smiles, laughter, meaning and purpose. He must not regret being born! He must know his parents have loved him. With that, I decided to change my baby’s fate.
The first step was using positive body language with my three-month-old baby. With a thumbs up and raising his fist in the air, I encouraged my baby to fight against the challenges that would come. My face purposely became as elastic as Jim Carrey’s face to inspire smiles and laughter in my baby.
I believed in the power of words, music and singing. I tapped into my inner poet and wrote songs about loving himself and being resilient in the face of medical difficulties. As I sang, especially my “Never Give Up” song to my baby, I subconsciously shaped my mind to be resilient as well.
For the next 16 months, a roller coaster of turns, twists and calmness added to my torment. I witnessed blood on the diapers, swelling of my baby’s spleen and liver, my baby’s loss of appetite, which eventually led to him having a feeding tube. Every day, especially at night, my baby would suddenly wake up, wailing in discomfort.
I would hold my baby next to my chest, absorbing each scream until I felt I was being broken apart. Yet I held on with sadness in my heart. My baby did not understand what was happening, unlike the adults. I continued to endure until I could soothe my baby to sleep by singing and rocking my body. Although my baby would succumb to sleep, I needed time to calm down my racing heart before I could fall asleep.
One day, the doctor said, the blood report revealed that it was time to do the liver transplant. Otherwise, he would not live to see his second birthday. With time ticking, plans and arrangements were made to hasten the process.
Then the day finally came – I held my baby in my arms for the last time. My last words to my baby were, “Remember, always remember, mummy and daddy love you. No matter what, we love you very much. Feel mummy’s love. Don’t be afraid.”
Then the doctor took my baby from my arms and went into the Operating Theatre.
I heard a young child singing “Little Fighters” on stage while wearing a Spider-Man costume. He sang with his heart, declaring himself a little fighter and motivating children with challenges, that they too are little fighters.
Since his liver transplant surgery at almost 2 years old, he became an avid runner of mostly 5km. He had collected 60 finisher running medals by 2025. He had won a third prize in a public speaking competition. His performance on stage earlier won him the first consolation prize. Since he was two years old, he gave dolls to children in the hospitals because he could understand and empathise with their fears. “I want to make the children happy.” On March 22nd, 2025, this boy gave a motivational talk to students of a school, to encourage them to become organ donors.
My tears today are no longer with grief and sadness. My tears are of gratitude and appreciation for how far we have gone as a family. I am letting you know that I am this mother, and this boy is my son, Patrick. I hope families with little fighters know there is still faith, hope, and love despite it all. “Never Give Up”, no matter what. May you always be supported, encouraged and empowered in your time of need. Thanks to the mothers’ encouragement, I took courage to release my song Never Give Up on online music platforms such as Spotify, YouTube Music and more.
