It is Sunday and usually, I am extra melancholic. For some reasons, two kids came to my mind early dawn today and kept me awake.
First one is Taufik. I met him in late April 2002. He was about 4-5 years old, ventilator dependant (meaning he cannot breathe without a machine). It was some ‘farewell’ party for a small girl who finally ‘graduated’ from the Intensive Care Unit in University Malaya Medical Centre (meaning got better and transferring to general ward). It was also the very first time I actually stayed in a Government hospital and seen so many critically ill and severely handicapped children.
Like most people, I used to be one of those *ss-holes who think that dropping a few miserable dollars into a donation box or quickly evade the presence of the disabled (mentally and/or physically) people by giving alms is good enough to show that I care about humanity. Sort of ‘I pay money, you better move to the next table’. Let’s admit it, many of us are usually very uneasy when we are in the company of disabled persons. But things changed. I was told that my son, Vincent may have cerebral palsy (cacat anggota) when he grew up.
So, with that realisation, I was forced to see things differently. My first experience was meeting Taufik. He had the most sparkling smile and beautiful eyes. He can’t talk much as he has a hole in his throat (tracheostomy) to put in a tube for him to breathe. He was in a wheel chair and throughout the party, he has to be bagged (a nurse manually pumping air into his lungs) as the ventilator is not portable. But that little boy enjoyed the party like every other normal children and even blew the candles on the cake (I forgot whether it was his birthday or not). He had stayed for several years in the hospital, from birth, never spent a day back home.
It is then I learnt to see the ‘real’ person and not observing which limbs or motor skill is missing. I learnt to embrace the person with a lot more love and empathy. Taufik is not the only boy who touched my live.
There are so many other children there, especially in the bone-marrow transplant ward (cancer patients) who displayed the same kind of cheerfulness inspite of their condition. I had been back to the PICU of UMMC several times as a visitor and each time, I came out a lot more wiser.
Usually, I am there to visit KS’s baby Ryan who had stayed for more than 15 mths in the PICU (born 8.8.2003). Ryan’s is one of the many little heroes who battled to get better and grow bigger. Ryan and his mother has a wish which I am trying to help to fulfil. I hope whoever read this, please bookmark this page and check for my updates. (I will try to put up a webpage soon on what baby Ryan, or rather the most loving mom, KS is hoping to do.)
*Taufik and my son, Vincent had passed away. Vincent died a few days after that party, on 1st May 2002. I heard that Taufik died 1-2 years ago at the age of probably 5-6 years old. But there are still many, many children who probably known the hospital as their permanent residence. Children like Ryan. All over Malaysia, in big teaching hospitals and also district hospitals.