I saw her when she was about 6 years old. Huge, pretty eyes and a sweet face. If the grandma did not tell me, I would not know that she is special, or what others would say ‘something wrong’. Penny lives in a world of her own and all she does is walk if you let her stand. Therefore, her legs were thin like birds.
Back then, I did not know what is autism and can’t differentiate all the different physical and mental disabilities. To the ignorant me, it says ‘cacat’ (handicapped). However, I can’t bear to think of a girl who walks and walks in the confine of her small room when her mom goes to work.
So, the inquisitive and cunning me used the name of Mr Khoo-Yeoh Gan Hong and found an appointment for her at The Penang Spastic Centre. I do not know Mr Khoo-Yeoh except for a seminar I attended but that did not stop me because I wanted badly to find some solution for Penny. So I pretended and drop names.
However, The Spastic Centre can’t help her because they only deal with cerebral palsy (CP) children, i.e. those whose mind work but not their limbs.
Years later, Penny’s mom works for me as a part-time housekeeper. I am Penny’s grand auntie (kim poh). These recent years, I am much more aware of things related to children physical and mental disabilities. I took an interest when Vincent was diagnosed with possible CP.
Penny’s health worsens as she grows. She stopped walking and her limbs started shrivelling away. She contracted meningitis and was disabled.
Once, she almost died. Her mom called me franctically and I gave her instructions over the phone on what to do to revive her. They did manage to revive her and brought her to the hospital. Her mom eventually took up the CPR course conducted by Dr Cheang.
Later, Penny starts menstruating. She has 2 older brothers and one younger brother. It was a messy process as she has been known to take off her disposable diapers, sometimes smearing her faeces all over the house.
I did what I can by asking several ob-gynaes. One told me that their hospital needs a court order in order to remove Penny’s ovaries (or is it womb?). Finally, I found one hospital willing to help the family. Penny went through an operation and there are no more menses. There is also no risk of getting pregnant because things like these had happened to some disabled persons.
It is not easy being Penny’s caregiver. It is very hard for her brothers to live with a special needs sibling like Penny because they have to feed her before/after school, when their mom is at work. Mom and dad has to work to earn enough money for the children. They thought of sending her to nursing home but the cost was too high.
All I could provide Penny’s mom is the assurance that Penny cannot feel pain. True fact – some special children are born without having pain sensation (which can be dangerous). Penny does not feel sad or have any of our earthly troubles. She lives in her own world and laughs all the time.
I am Penny’s mom confidante, always telling her that it is ok to feel angry sometimes. She felt bad when she lost her cool after a hard day’s work and found her home smeared with faeces. But more often, she told me how special Penny is and how much she love her.
We had talked about death and struggles as Penny’s mom had seen how I took care of Vincent. Therefore, I know Penny’s mom will be having mixed feelings with her death. She had told me several times that, she wished Penny doesn’t have to suffer so much. But on one hand, she knows she is going to miss her if she is no longer around.
The only person I pity is my eldest sis-in-law. (my atm’s eldest sister). Last year, she attended one of her grand-daugther’s funeral. Today, she attended another one.
…more later on how the general public accept children with disabilities