Mum to a 6-year-old liver disease survivor
October brings with it a host of celebrations, from the spooky festivities of Halloween to World Mental Health Day. Another addition to this list is National Liver Awareness Month – a condition that often goes unnoticed. A survivor fighting liver disease today is Patrick, a 6-year-old Malaysian boy.
While their day-to-day journey is often tumultuous, the story of this mother-and-son duo serves as inspiration to survivors and the general public alike, imparting valuable lessons on how to cherish life a little more.
Here’s Cordelia and Patrick’s story:
Crying every night & falling into depression
Patrick at 1.9 months old in the hospital.
Image credit: Cordelia
In 2017, when Patrick was just 1.5 months old, his aunt noticed something was off with the infant based on the appearance of his stool. Following this discovery, Cordelia, who is a meditation teacher and singer-songwriter, took her son to the UMSC hospital.
Image credit: Cordelia
Patrick underwent an intraoperative cholangiogram – an X-ray imaging that shows bile ducts to assess his liver – and then a KASAI surgery, which involved the removal of his gallbladder. This procedure was performed to delay liver deterioration and allow for natural healing to take place.
During that period, Cordelia experienced a tumultuous time filled with agony and pressure due to Patrick’s condition. She recalled crying herself to sleep every night, gradually falling into depression.
Despite the hardships, she recognised the need to change her narrative for Patrick’s sake. With the immense support of her husband, she took charge of the situation and embraced the unknown during her early years of motherhood.
“We never knew if the next day would bring symptoms that were manageable or worse than before. This uncertainty taught us to cherish the moments of stability and reminded us that difficult times don’t last forever”, Cordelia shared.
Giving my son a joyful life despite the challenges
Image credit: Cordelia
With the goal of giving Patrick a joyful life despite numerous hospital visits and sleepless nights, Cordelia employed simple and positive coping methods such as singing and reading books with strong values to him.
One particularly effective technique was her creativity and sense of humour. She used body language, including giving a thumbs-up and raising her fists, to boost his spirits, as he could not form sentences at that point in time.
She also found that seeing him smile was a powerful remedy that lifted her spirits, especially during difficult times.
Image credit: Cordelia
While these positive gestures are helpful during their journey, Cordelia acknowledges that temporary relief can fall short when confronted with the reality of her son’s condition.
With no assurance of the number of his days, she continues to summon the strength to persevere.
“It won’t completely erase the fear”, Cordelia admitted. “The moments of peace and joy are fleeting, and then it’s back to square one. However, I will strive to honour my feelings. I’ll acknowledge that I’m afraid. Yet, I don’t want to remain in this state, especially for the sake of my baby”.
Image credit: Cordelia
In 2019, Patrick successfully underwent a liver transplant surgery with his father as the donor. Following the surgery, life gradually improved for Patrick and she is deeply thankful to her husband, who has been the strongest support for their family.
“I often tell my baby that we can’t promise him a life without pain and suffering. What we can promise is that we’ll be with him every step of the way, especially during his difficult times”, Cordelia shared.
She continues to maintain a positive outlook on life despite the challenges they face. While she knows there are no guarantees on her son’s outlook, she remains positive, which greatly influences her perspectives on both her and Patrick’s lives.
The act of paying it forward, spreading love & positivity to others
Image credit: Cordelia
In life, we often choose to believe that when there is a will, there is always a way.
Currently, Patrick continues to undergo regular checkups to ensure there is no liver rejection or other medical issues. He’s a playful and active child like any other, and this brings a sense of reassurance to his mother that they are in a better place compared to the early days of his diagnosis.
Image credit: Cordelia
To inspire others facing similar medical conditions, Cordelia started crafting sock dolls for those in shelter homes and hospitals. She recalls the days when her son was admitted to the hospital, and how kind individuals extended their generosity to children in the wards.
Soon, Patrick joined her in this community service, accompanying her to visit shelter homes and hospitalised children. This practice began as a result of Patrick’s regular medical check-ups.
Patrick in his favourite Spider-Man costume.
Image credit: Cordelia
Their visitation day typically looks like this: once his check-up is complete, they head to the children’s ward to offer the sock dolls to the young patients. They do this so often that he has become a familiar face at hospitals, often seen gifting sock dolls to patients.
Patrick is a big fan of Spider-Man, and he embraces the role of the superhero by wearing a full costume when visiting the elderly residents of nursing homes. His visit brings smiles to the faces of the elderly residents with his cool poses and adorable presence.
Patrick and his mum’s sock dolls for hospital patients.
Image credit: Cordelia
As a mother, Cordelia believes that her simple acts of uplifting her son have enriched not only her own life but have also taught both her and her son the profound value of embracing and cherishing life, regardless of the circumstances.
Learning to embrace & cherish life by living it to the fullest
Patrick’s painting on the ward’s notice board during his admission.
Image credit: Cordelia
The mother-and-son duo continues to have faith and remain positive no matter what life throws their way. While the journey may be long and challenging, Cordelia believes it’s vital to care for your own health, even when it’s difficult to show self-love.
Cordelia has some wise words for anyone in the midst of a life struggle: “I understand that it’s not always easy to feel happiness and joy, and there are times when you might want to numb yourself. But please be kind to yourself. Allow yourself to cry when necessary. Find a positive activity, even if it’s just for 5 minutes”.
Image credit: Cordelia
Beyond gifting sock dolls to children in the hospital, Cordelia also extends her generosity by teaching sock doll making to mothers living in Ronald McDonald House Charities. Patrick also took the opportunity to sing a song from his mother’s EP titled I Love Life.
On living, Cordelia said, “Being inspired by life means living it, whether through creativity, community events, or any path that resonates. There’s no right or wrong method. Explore, and you’ll discover what inspires you to love and truly live life, as it has for me and Patrick”.
Image credit: Cordelia
As a mother, she finds beauty in life as she witnesses it unfolding before her eyes, sharing her story of her child’s successful liver transplant. She also treasures the smiles of gratitude from older folks and the hugs of love when she extends her love to others.
“I remember the words of my music director and mentor, ‘The meaning of life is to contribute to life itself. I will do it positively’,” she shared.
Inspiring others to cherish life as a liver disease survivor
Many of us often overlook the importance of appreciating our health amid the daily challenges of life. While there are numerous demands on our time and attention, we should always remember to prioritise our health, especially when we sense something is off.
The resilient story of this mother-son duo serves as an inspiration to cherish life. It reminds us that life is unpredictable, especially in matters of health. So, if you’re struggling with an unseen battle or seeking inspiration to appreciate life, we hope this story can be a beacon of hope in your journey.
For more of our perspective reads, check out I didn’t know what ‘Keling’ was until someone called me that and I grew up without a dad for 21 years.
Cover image adapted from: Cordelia
Some quotes have been edited for brevity and clarity.