My special child

AS I watch Elizabeth playing with her brother, memories flash back to the year she was born – 1994.

I can remember vividly the moment the gynaecologist brought the baby girl to me. She looked dark and fragile, otherwise, everything seemed normal.

“It’s a girl!” the doctor said. “Congratulations!” And he quickly took her into another room. After a while, he came out.

“How’s the baby, doc?” I asked.

“Well, she’s all right ... (stammer), except that she is a bit Mongoloid.”

“What do you mean – Mongoloid?” I almost yelled.

Daddy’s special girl, Elizabeth

Mongoloid is a term used to describe babies who have Down Syndrome, the doctor said. It’s a kind of genetic disorder whereby there was an extra chromosome during the foetus’ development.

The characteristics of a Down Syndrome baby are slanted eyes, fat fingers, clubbed feet, a weak heart, Simian crest on the palm and a protruding tongue. She will not be able to marry and her life span will be limited.

“I’m not very sure yet ... I will refer her to the paediatrician. He will explain the details to you later.”

I felt like I had been hit by a thunderbolt. I thought I saw that my daughter’s eyes were slightly slanted but didn’t suspect anything. I hated the word “Mongoloid”. Didn’t the doctor know there are better words to use, like special child? At least it wouldn’t won’t me hurt so much.

“Down Syndrome? What’s that?” I murmured to myself. I’d never heard of such a thing before.

It was weird! All of a sudden my mind conjured up images of a freaky creature, like those in horror movies. I stared at the room and was overcome by nausea. I ran to the toilet and threw up.

“Am I going to have a disabled daughter? How am I going to raise her? Who is going to take care of her when I’m gone? Should I end her life now?

“I have waited nine years and this is what I get! It’s cruel! What have I done to deserve this?”

There were a lot of unanswered questions. I wanted to blame the doctor, my wife, even myself – for not getting her to do any tests during her pregnancy.

After awhile I gathered myself and approached my wife, who was in the labour room. “Should I tell her the truth or lie to her”?

When she saw me, she said the delivery was easier this time round. (It was her second pregnancy.)

I nodded and forced a smile. After she stopped talking, I sat down, held her hands and whispered:

“Mummy, we have a Down Syndrome child. She is not normal. The doctor said they have to conduct further checks.”

Tears welled up in her eyes. I could hear her sobbing as I left the room.

Divine presence

The scene at the coast near Batu Maung (Penang) was beautiful as I sat on a rock and looked out to the horizon. It was a hot day and in the distance was Pulau Song Song. I watched the sampans dance with the tide and life seemed ordinary. My world had collapsed but nobody seemed to care.

With a heavy heart, I realised there was nothing much I could do to change the situation. In a state of despair I thought of ending it all. The sea looked inviting ...

All of a sudden, I heard a voice: “I’m sending you a special child to cherish in my name. For you to love with all your heart and teach her just the same. For she is not like other babies, nor will she ever be.

“You’ll cry a million tears, but I promise when she smiles at you, the pain will disappear. Love her just the same and take good care of her for me.”

I was shocked and confused. The voice was authoritative yet I felt peace and assurance. I knew, then, who had spoken. I had to be strong and face the future.

The next day I phoned the office and asked for a week off. I contacted my sister and relatives, who flew in from Kuala Lumpur. Together with some friends and a pastor, they prayed for me. I was never a religious person but during the prayers I felt weak, as if I was floating and surrendering myself to the spirit. It was the presence of the Divine.

Elizabeth’s purpose

It has been 14 years now. My Elizabeth attends a special school. Although the Down Syndrome features are there, to me, she is pretty. She happily tugs her schoolbag and waves goodbye to her grandma and grandpa before leaving for school. The teachers have been wonderful and they all love her.

Although slow, she speaks a smattering of English, Malay and Cantonese. It’s all mixed, like rojak, but we can understand her.

Elizabeth is tall, like me, and can dress herself and perform simple household tasks, like washing the dishes. There are so many activities to keep her occupied. On weekends, I take her on outstation trips, just like any normal child.

Thankfully, she has no heart defect or any major problems. Each time she smiles, my pain disappears.

I now realise the purpose of her being here. The joy and happiness I experience is worth all that we have gone through.

As I tuck her into bed, I remember the words spoken to me years ago: “Love her just the same and take good care of her for she is my Special Child.”