Raphael got featured this morning for the second time. Journalist Cheryl Tan interviewed his parents about this “small, brave soul who inspired many.”
Most of you know about his inspiring story, but the interview also tells us about his final day before he passed on.
The day was Nov 12 this year. And Raphael somehow knew that death was imminent. That brave 12-year-old asked his mother, “What would happen if her only child died before her. If he did, he hoped she would donate his body to scientific research.”
Raphael was afraid, his mother said. In fact, she said: “I don’t think I’ve seen him so afraid before.”
“Just as he was being sedated to begin the operation, he told me, “Mummy, I don’t want to lie down. I want to sit down. I want you to hug me.””
Cheryl wrote: “On the operating table, Raphael suffered from excessive blood loss which resulted in brain damage. He died the following day.”
His mum said: “So that was how he went into a deep sleep, and that was the last time we saw him alert and awake.”
One thing about Raphael is that there is just so much grit in him to want to live his life at such a young age to the fullest. Putting aside his PSLE results, which he did well considering his condition, Raphael was also an “avid online gamer” and he “joined various co-curricular activities in school such as chess club, speech and drama club, and robotics club.”
He did all that even when, at a very young age, he had inherited a rare condition called “Li-Fraumeni Syndrome”, which is “a genetic disorder which predisposed him to a wide range of rare cancers.”
In 2016, to halt the spread of bone cancer in his left forearm, he had his left arm amputated. Yet, nothing could have robbed him of his zest and cheer for life. Nothing dampened his spirit.
“He would go around to encourage the other cancer patients in his ward, which also earned him the Inspirational Patient and Caregiver Award from KKH of 2020.”
I have written about Raphael a few days ago, and the amazing love he has received from his parents, William and Winnie. I have nothing to add to what Cheryl has written today, and you should go and read it.
My parting shot however is about a gift Raphael gave to his mom last December when he went for an operation to remove his right collarbone.
The gift was something deeply precious to Winnie. It was a simple message in a bottle. The message reads: “I love you Mama,” “with strokes of green, her favourite colour, on the back””.
Winnie said: “He was a boy of few words but it was always his wish to inspire others with his story.”
In sum, that is what life is all about - “I love you Mama.” It is a love that always come through. And it leaves nothing the same as it was before, when love completes its work in the lives who truly embrace it.
Sadly, a young brave life like Raphael’s has come and gone, but his story lives on. He had always wanted to inspire others, even in the hospital ward where he won the award for being an inspirational patient and caregiver.
However oxymoronic being a patient and caregiver is, Raphael’s short life has shown that you can be a hospital patient, treasuring and fighting for every breathe within you for as long as it takes, yet still lead an inspiring life as someone who never gives up, someone who is always spreading cheer to others.
Indeed, Aldous Huxley once said that “experience is not what happens to a man. It is what a man does with what happens to him.” And Raphael (being just a boy) has gained so much experience when he saw beyond his afflictions, that is, the cancers that had taken part of his body, yet, by conscious daily choices, he never allowed it to take his soul and spirit that were so much bigger than the cancer itself (and mind you, there are so many cancer patients out there who, like Raphael, had fought the good fight).
Yet, the reality is, within that embattled frame, Raphael fought to the last breath even in the midst of indescribable fear and uncertainty. Winnie saw his fear when he told her: “Mummy, I don’t want to lie down. I want to sit down. I want you to hug me.”
Alas, every child deserves a hug. Every man or woman needs to be hugged too, more often than we think we want or need it. Love may overcome many things in life, but the greatest comfort and hope it brings is not by remote, but by touch, by embrace, and by tears shed and shared.
In our lifetime, we have said many goodbyes to lives lost to cancer. But, many of these lives have left a story that has inspired the living deeply.
They have written their stories, amidst the pain and tears, the sorrow and fears. Their words were mostly silence, expressionless, yet their lives continued the legacy, with life-affirming words planted in our hearts whenever we read about their stories.
Winnie said: “During his wake, there were many attendees who came, some of whom we did not even know. But all of them said he was very brave and strong.”
The world is made better by such stories of bravery and courage. It is Raphael’s message in the bottle to all of us - a message of undying love, a message by one who has fought the good fight, and completed the race of life, no matter how young one was.