“Would you let your sick kid die?” read a headline on the front page of the June 13 edition of TODAY. The report was about…
…whether parents, faced with the news that their newborn child was stricken with a life-threatening disease, would withdraw treatment so that the child would not have to suffer for the rest of his or her life.
My parents would not and did not. That is why I am still around. They did everything possible to give me a shot at life.
Was it traumatic for them to see me suffering in agonising pain every time I broke my bones because of my brittle-bone disease. You bet it was. They broke down and wept when I cried desperately for them to help ease the searing pain.
At the sight of a row of palm trees. I would plead with them: “No, no, please. I don’t want to go there. Mummy, it’s very painful. Let’s go home.”
The palm trees were an indication that I was not far from the hospital, the entrance to which was lined by the trees. To me, being treated at the hospital was like going through hell.
Once, I broke my left leg while a hospital technician was trying to put a plaster cast on my right leg.
It was not his fault. I was struggling out of fear, pain and desperation, and my leg snapped, resulting in more excruciating pain. Tears just rolled down my parents’ cheeks as they watched, helplessly, the ordeal that I had to endure.
Believe me, it is heart-rending to see adults cry.
A lot of questions must have crossed their minds. I suspect these could be some of them: Why did we bring him into this world just to have him suffer? Was it a mistake to have him? What will his future be like? Why can’t we suffer instead of him?
I once heard my mother telling someone on the telephone that she was prepared to sacrifice her limbs if I could live without disabilities.
If I could have my way, I would like to spare my parents the mental anguish that comes with having to care for someone in my condition.
They certainly do not deserve the pain, suffering and sacrifice.
If they had decided to have an abortion after finding out about my condition pre-natally, I could not blame them.
It was their wish to have a normal, healthy child. Yet, when I was born, they accepted me simply because they recognised my worth as a human being.
There was no way for them to know how I would develop.
My physical state was so fragile that within the first two weeks of my brith, my survival was in doubt. But they did not give up on me; they knew I have a purpose in life.
All new-born children with debilitating diseases or life-threatening conditiosn have a purpose in life.
If nothing else, they serve to remind us all to count our blessings and not take things for grants.
They give us the opportunity to strengthen our soul by allowing us to show care, compassion and love.
In their own way, they can contribute to the advancement of medical science.
Nor should one underestimate the ability of their spirit to not just endure but also prevail over overwhelming odds.
Born with a congenital condition which left him with almost no arms and legs, Mr Hirotada Ototake has become a celebrity in Japan. He is a graduate of the prestigious Waseda University and his best-selling book, No One’s Prefect, has sold more than 4.5 million copies.
Despite having Down Syndrome, Ms Grace Chan inspires many people with her talent and intelligence. She, too, has written a book, I Am Human, Not Alien.
Letting sick children die is an easy decision if you look at their disabilities or sickness and have no emotional connection with them.
But, before you do that, think of their potential. Look at them as humans who can be useful, unique members of society.
(This article was printed in TODAY on 27 June 2005)