Chapter 1 Broken Dreams

This is my story of someone so dear and near to my heart, and yet so distant. Full of more emotion and feeling than perhaps fact. Writing, like reading, is a voyage of unearthing. I may not write a great novel, but I sure have lived it. My ideal reader is like a best friend - who would gain the most from you. The pen, I realised, would speak to people you did not know, in places you would never go in ways you never could.

I had delayed the publishing of this book for more than 13 years. Why?

I dislike having my life dissected for public consumption.

There are two reasons for publishing it now. Friends have been heartening me to publish it so that it could inspire other family with a special child. Second, we are now going through the deepest recession ever; it would be a helpful time to raise funds for needy charity with this book. And yet halfway through this self-publishing process, I was being wronged and reproached. People judged me before I could speak. But I am totally committed to what I am doing. I remember that people are finding their way.

Shattered Words

Sometimes, there was the fear of hurting others with too much honesty; or at times, emotions were still too raw to be given form with words.

Wait, hold your stones.

I am a novice scribe. Writing does not come naturally to me. There are the dry spells. The proverbial writer's block. I abandoned writing for a long period of time because of the prolonged spells. Inside, it is like there is a huge ball of jumbled words, feelings welling up, just desperately needing to find an outlet.

Some of the pieces are too abrupt, others too wordy, but it is my first book, and it has a special place in my heart. Writing this book was never in my heart as I do not wish to be perceived as collecting merits for myself and my family. It was a painful & liberating process.

It was painful but priceless. At times I was completely lost in my own world, drowned in the eerie silence. The same emotional baggage that burdens my soul. These words are like ancient jewels mined from the quarry of my life. Nothing dramatic here, just the hard reality of life. Sometimes I feel lonely, but I insist on applauding myself and throwing myself a feast. There are moments when I have the overwhelming need to dissect troubling feelings and thoughts through writing but there always seem to be some emotional obstacles.

I slept under the hypnosis of social conditioning. What are you doing? Ask yourself. Am I in a state of denial? Or having a tryst with destiny? Do not be mistaken, I am not one who believes that doing good work to earn brownies points to heaven nor bringing me great blessings. Far from it. No amount of good work can earn it – that is my personal conviction and beliefs.

I was recently struck by pieces of dreadful news which I could have just filed away. Any family who has a newborn Down Syndrome baby would have been punctured deeply by grief, their eyes burning with warm tears of anguish and anger. Grief is often muted, even private. Wallowing in self-pity and mourning for the perfect baby they had lost. What they wanted, did not come. What came, they did not want. Tears in Heaven – the angel wept. He cries with you. It was not from heaven. But why me? I do not pretend to have the answer. I prefer the answer 'I don't know' than to have a religious teacher decree the death sentence to your already dead situation. It is not retribution neither a loving God that glorifying himself through your Down Syndrome child. The mystery is that God’s glory, God’s love, God’s presence completes, sustains and will ultimately meet your deepest needs. Our challenge is to be faithful in what we are called to do and then rest, trusting God’s purposes, God’s love and God’s glory alone.


Nobody’s Child

We are living in a fallen world. In our buttoned-up society, having a Down Syndrome child seems to be a taboo. It strips away the gloss of today's successes to reveal the scars of humanity. In my own life, I grew up with a Down Syndrome child in my family. And it has been for the last forty-five years.

I could not just cache these treasure troves of moments and let it frozen in time. Each person cocooned in his own separate life I felt the season has come to open windows into men's souls on these experiences. I feel I'm a full-time missionary, and a full-time lecturer too.

It is not my intention to make this book a nostalgic echo of my experiences neither it is going to be a high-octane thriller. But I hope to share some touching moments, my struggles and joy in bringing up a Down Syndrome girl, Ivy Tham Chui Heong. An unwanted child – an outcast abandoned by the society whom my family takes care of voluntarily. And she is totally not related to my family in flesh and blood nor in any form. A child from a complete stranger. Why? The obvious thought in anybody's mind. Was it for money, fame, shame or name sake? Read on..... but prepare your heart.

For all these years, I have never trumpeted my work on Ivy with anyone. Hardly anyone knew of my guardian on a Down Syndrome girl. If I'm working for a standing ovation through this, it must have been a very foolish effort. For the pains, struggle and the challenges, there is other sure and easier ways to achieve it. There is no need or desire to impress others.

This also gives me another strong impetus to write this book in setting right the fallacy. The facts are true, no names have been changed.


Silence from Heaven

Born in January the 13th 1964, Ivy’s life hangs by a thread - a complete vegetable, Down Syndrome and hole-in-the-heart. She was just a bag of bones, literally and unexaggerated. She was born tragically in the midst of her parents' divorce. Her mother tried unsuccessfully to abort her through dubious Chinese drugs. It was a prevalent and common abortion practice in the nineteen sixties.

In the cold, wintry night, Ivy was pushed out into the world. The angels were silenced, clasped not in prayer but hiding their tears that warmed their porcelain faces. Their arms of grace were cold and weary. Along the dark corridors of the old Kandang Kerbau Hospital, many dreams of the storks ushering the beautiful baby didn't come true. Darkness reigned, the guardian angels fluttered away, so did her own father and two elder sisters whom have never seen her since birth.

Ivy's almost lifeless body along with her twisted arms and legs awaiting to meet the Creator of the Heaven and Earth.

Where the hell was Superman, to wrangle her away from the hounding evil forces of society?

With tubes and wires sticking into her body, her half-stale vegetable state lied lukewarm.

Meanwhile, her mother was in no better state of mind and body. The Ministry of Social Welfare officials were at hand, knowing that Ivy would need a foster home to see her through, for a long time to come. Her Bata factory-operator mother was self-supportive with two other children, aged four and seven. Her husband had already left her for good.
With her meager earnings, seeing through the day-to-day expenses in itself is not going to be easy, let alone having to look after a Down Syndrome and handicapped child.

The Ministry then contacted my mother whom had been a registered foster mother. While Ivy was still on the hospital bed, my mother visited her with the officials. ''This is Ivy Tham Chui Heong, from a broken family. She is completely bed-ridden and would be for a long time. She will receive free medical care, but you will have to fetch her to the Singapore General Hospital for treatment and checkups very often, because she has a hole-in-the-heart plus numerous other health problems." The lady official looked resigned and sighed. She pleaded with my mother to take up this challenge to help Ivy, for $60 a month, then a token sum of money. A few other foster mothers had rejected this request, for an obvious reason. It was not the money but obviously it was going to be tough and draining.

Somehow my mother took it up to foster Ivy. Of course, she knew what she was in for. I was only seven years old then, the youngest in our family of six.

I was too young to know the implications of having Ivy into our home. I was in fact mesmerised by a young Down Syndrome baby so contorted in her body and face. I pulled back in awe and was afraid to come near Ivy.

In the years ahead, the promise of hard work and toil never fail to come. I remembered clearly how my mother had to painstakingly prop her up with pillows around her, lest she toppled over while seated. Ivy did not even had an ounce of energy of her own to turn her back. She laid flat on her back most of the time, and as a consequence, her skull behind was flattened, which is still evident today.

In all, it took a full sixteen years for her to progress from the baby cot to walking unaided, a feat in which a normal child would take only about fifteen months.

In between the years, there were countless trips to the hospital come rain or shine. Taking the Tay Koh Yat public bus in the sixties was a perilous task. I had to piggy-back Ivy and rushed for the bus. Even before I could place my foot on the second step, the bus would zoom away with rushing speed. Under the hot pelting sun, the slope to the General Hospital was always an uphill task.

The efforts were well rewarded through the intensive health care and love for Ivy, she grew in good stead. Within the neighbourhood, she was always an icon. Through the years, people were appalled and perplexed by the pains that my mother was willing to persevere for Ivy.

Each day Ivy lives in her own freedom, full of joy and peace, not knowing a single bit of her background. But behind her joy, people are oblivious to the daily struggle that my mother went through. Every single task has to be done for her, from changing, bathing, to the toilet visits. At times, she would defecate or urinate right where she was seated.

But for 21 years, she was brought up in the warm harness of our home. Even with her disabilities, she has a great zest for life and a high threshold of pain. I have seen more pain in her than you and I would ever experience in a lifetime.

The unconditional love for her from our family conquers it all. It was definitely not a battery-powered love. She learnt to walk and ride a tricycle at a late age of sixteen, in itself a miracle. She lives in her own world of silence and peace, with a mental age of not more than two till today.


Ivy – All of her life

Though she possesses a child-like behaviour, she has the feline grace . She is so charming and can be very disarming. In my previous job in the stressful disk drive industries, I was often burnt out each day. But many a time she has an ever ready smile that surely captures my heart. Her innocence is very moving.

I bought for her a $120 rattan chair with a specially tailored height. With her sleek, tender and soft body, she could contort her legs around her neck elegantly, a common feat she accomplished with dexterity. Around the age of twenty, about four years after her new-found freedom of walking ability, she would perform the act of a junior escape artiste.

When no one was around the hall, she would sneaked out and cleverly climbed two flights of stairs up to the fifth storey of the apartments we lived in, bare-footed. By the time we had discovered her disappearing act, frantically we would launch a sweeping search. When found, she would laugh loudly, kicking joyfully. She won - in her own way. She was such a live-wire.

At other times, if anyone happens to sit with their back behind her, she would wittingly deliver a real solid wrist punch on their back. During her less merciful moments, she would deliver a swift and powerful kick instead.

Sometimes, when we go out, people notice how different she is and stare. And children look at her and get scared. But we take it all in our stride. We just tell ourselves that people stare because she looked unusual - no malice intended.

Though Ivy was quick-witted, she always had great fear for loud sound. There was a young neighbour staying at one floor below our house, who frequently played his drum set to the fullest extent. He is none other than Ken Lim, now the chief judge for the Singapore Idol series. Ivy would shrivel with fear when the glass windows rattled from the wringing drum beat noise. The young Ken seemed to have some style in his drumming but not sure where was the substance then.

Ken was a polite and unassuming young guy. One day he came back from school and he realised that he had forgotten to take his house keys. He called me for help, asking me to climb into his house through the unlocked kitchen windows. His family lived at the second storey, but it was an old walk-up apartment and it had high ceilings which made it difficult and dangerous to climb up. But in spontaneity, I agreed to answer the call. In all honesty, there was chance of an accident as it was risky. He was awfully thankful when I accomplished the scale.