AUTHOR'S NOTE

*This is an UNEDITED version of the book for preview use only.
Grammar,fluency etc are not amended in this preview copy.

One major chapter(on Knowing More About Down Syndrome in Singapore) is not included.

Please look out for full version of the book, that will be released in mid-2009. It will be available at all major bookstores.

About the Author

A book that touches the heart of soul....
Fully Written by Author Hong Geok Hua:

He was featured on national TV in the `Extraordinary People' series in 1996. This programme was later awarded the top feature in the Asia TV Awards.

Hong Geok Hua was again featured on TV in the follow-up series `Changing Lives' hosted by actress Wong LiLin in 2001. Programme was telecasted throughout Asia in Hong Kong, Philippines, Malaysia etc.

In 2007, he was nominated in the Model Caregiver Award Programme organised by Asian Women Welfare Association.

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.

Chapter 3 My Honey, My Wife

With Ivy resettling into home once again, I thought the whole episode is passé.

My skirt-chasing days was about to sprint ahead with great potential, I reckon. Armed with an UK honours degree and my well-heeled engineer job in a top American multinational organisation. I thought it would put me in good stead. But with Ivy on the tow, it would be an instant turn-off with any sensible woman. Who would ever want to start a family with you having a ready-made mentally handicapped 'child'?. Worst of all, a 'child' that is not mine, of flesh and blood. Let alone start a courtship on the wrong footing. My stake on the board is a sure loser. It
does not take a rocket scientist to figure out that.

I believe in marriage but at that time of my life, it was not on my card. But then again, I was not getting younger. And I felt I was not model material that women would make a beeline for me. Redeemably married female colleagues often said I displayed some 'good husband' materials....whatever that meant.

In all honesty, I knew it was a risky decision to have Ivy as my ‘child’. I needed a strong heart to face rejection of marriage and liquidate everything. Reality finally hit home. Ivy had always faced disapproving looks from the rest of society. The shadow of rejection is always present. This thought cast a long shadow on my mind.

After losing much sleep and hair over my marriage thoughts and fears, I looked set to bite the dust. It was a long shot. I felt a knot in my heart, the social repercussion was significant. But I thank God that I had found a woman whom was willing to toe the line. Ivy was my burden and she was willing to share it with me. She did not have to do it, didn't she? She is Debbie Pang.

I was pleasantly surprised and thankful that Ivy was never on the negotiation table for our marriage agreement - the ultimatum of Ivy or her.

We finally got married in 1990. On our wedding dinner, I ensured that my family members bring Ivy along to the dinner. She sat happily beside the VIP table. But in the midst of the wedding toast, Ivy suddenly disappeared from her seat. I was shaken. Later I found out that she was whisked away under wraps to our bridal hotel room. I was furious because I was later told that she should be kept away during this auspicious occasion as Ivy was attracting awkard stares at the VIP table. I immediately directed my sister to bring her back to the wedding dinner.

It has been 19 years since we got married. My wife, Debbie, had not a hint of regret niggled at the back of her mind and more than willing to last the distance with me. Knowing fully well that it is unlikely that we will have to fight only one or two battles ahead for Ivy. On both the personal and the public front, it is a long road. And it has been.

We are like astronauts, jettisoning the booster rockets, shooting into the deep, dark space, trusting that the moon is there, waiting for our arrival. Debbie had come to accept her on her terms and open herself to whatever discoveries and surprises Ivy may lead her to. It is a lifelong calling and she was very forthcoming to any cracks that might open in our relationship.

My wife Debbie is a woman who lived a life beyond extraordinary, personified grace and humility. She projected the strength, character, heart and substance to take care of Ivy with me.


Money No Enough

Since 1985 when I first brought Ivy back from the old folk’s home, the Ministry of Social Welfare had stopped financial aid, including free medical care. I had to take full financial responsibility for her - for life. Legally adopting Ivy seemed to be a simple option for me. But what if Ivy outlives me and she was legally my `child’. When this happens, my wife would be left with a burden of sanctioned support from the relevant ministries?

Ironically, in March 1992 I suffered a sudden illness. My prognosis was very poor. I was pronounced to die in six months time by two different doctors from separate hospitals(Singapore General Hospital and Mount Elizabeth Hospital). But I breathe on the legacy that I need to take care of Ivy. Heaven can wait - I live. It was a prenatal to death. I have grown stronger.

The decision made to take care of Ivy comes with great responsibility both financially and emotionally. Was it calculated risk I took before I made the decision? No, it was not calculated at all. If I ever did, I would have a nervous breakdown.

For the record, I do not a have deep pocket nor was I born with a silver spoon from a pedigreed background. But earned enough to put food on the table for a family of eight - my mother, myself, wife, three young children, Ivy and a maid. My bank account has not been 'scraping the bottom' before pay day. Thank God for His provision. When my children were at pre-school age, the children needed more attention from the maid. Ivy was soon neglected at times. I decided to hire another maid solely to take care Ivy. She needs full attention right from changing, using the toilet, bathing...whatever a two-year old child needed. A high- octane effort all year round. But after four years, family expenses mounted, I had to make do with just one maid.

In year 1996, I was featured on the very first 'Extraordinary People' series on national TV in Singapore. It enacted on how Ivy came into our lives and lived through years under our care. That series won Media Corporation of Singapore a prize in the documentary category. I was once again featured on follow-up season of the 'Extraordinary People' series - `Changing Lives’. The producer of the programme hoped to relive the last season since first series in 1996.. The second series was repeatedly telecasted both in the Chinese and English channels in Singapore .
It was also widely shown in many Asian TV channels including Hong Kong, Thailand, Philippines etc . After the telecast, I received numerous offers to help Ivy in various ways. One neighbourhood hair salon offered free monthly haircuts for Ivy. I guess the salon owner had seen the scene on the programme where me and my wife were giving a half-baked haircut at home for Ivy.

A long-time friend of mine was so touched that he immediately sent a cheque of $500 ( which I refused to bank-in). A stranger, Lee KC, wrote to me emails repeatedly, offering to support Ivy financially. I thanked him for his good gesture and turned him down entirely.


Voices from my wife - Debbie Pang

Before our marriage, I had always been inundated with the same question by others on why I bother to take up the cross with Geok Hua in taking care of a Down Syndrome girl Ivy. There was no reason why I should burden myself. . All things considered, friends thought that I should drop him like a hot potato.

I do not regret my choice. The decision was made and the decision comes with great responsibility. I know from the start that he is a man who fought for his principles and was steadfast in his beliefs. It was a mantra he practises to the letter. And he is someone that is beyond money and status. He left his previous well-paid managerial job for a lower-pay teaching career just when his American superior was about to promote him to a director position. He is someone that will not pull the rug when things go awry. Seeing him totally committed to what he was doing warms my heart instead. Though it did take quite a while for me to follow my heart and trusted my instincts. Those things touched me and will continue to do so forever. My husband Geok Hua is a great friend and confidante.

Truth be told, it is indeed a challenge to take care of Ivy and it is not going to get easier. The shadow of uncertainty is always present. But Ivy remains a very endearing figure to us. God used her to touch and change many lives, especially mine. With her, our perspective on life becomes more measured, more considered. But no expenses are spared; no corners are cut in caring for her. Though we are not rich our backs are strong. Whilst walking in faith and clinging to God's promises was not easy. Ivy’s life gives me a new sense of direction about who I wanted to be how I wanted my kids to see me years later. I wanted to be a role model to them and strive to work on this to the best of my abilities. Exemplar of enabling the dreams of the less fortunate in society. It comes from an altruistic desire to help others in painting their dreams. To stand for something, to have made some difference that you lived at all.

Though many a times because of Ivy, I could see his face etched clearly - his feelings of despair, fatigue and helplessness. He has weathered the storms of life and it has worn him thin in his spirit being and burnt-out at times. He refused to be victimised by his circumstances. He is more than a conqueror now as he is passionate about his convictions. He often said that either we
make ourselves miserable, or we make ourselves strong. The amount of work is the same.

Ivy’s story depicts a human tragedy in society, abandoned by her own family members except her mother.

Chapter 2 Earthly Hell

In 1985, Ivy at the age of twenty, that dream of a happy home cringed into a broken mirror & her end was near. Her dream faded fast. Her own aged mother decided to put her in an old folk’s home. Lee Ah Mooi Old Folk's Home - a complete run-down, stinking zinc-roofed lodging along Jalan Kayu.

Firstly, Ivy's mother was getting old and thinking ahead - Ivy would outlive her. She wanted to leave this world knowing that Ivy is taken care of in an old folk's home. Knowing also that my family will not take care of Ivy for life, for obvious reasons. Secondly, Ivy's mother could not afford to foot the money payable to Ministry of Social Welfare then as a co-payment for Ivy's monthly maintenance. After all, she was just a Bata shoes production operator.

Ivy was dressed up and all her clothing fully packed leaving home for good, into an old folks’ home. She was unaware of what was going to happen. Together with both my mother and Ivy’s mother, we arrived after a long windy ride deep into the kampong.

I was not prepared for the sight that greeted me. What I saw brought on a nightmare. I wanted to cry from the minute I walked in. My mind could not process the horror I saw. Ivy was allocated a lice-infested bed amongst the lifeless old women around her. The many wooden beds were packed to the eyeballs. The stench was stomach-churning.

She was doomed to a life of no love & attention. It seemed that she began to be aware of the curtain closing on her life. The old folks' home had turned into a death trap for a life so young and innocent. I sat on her bed, she was holding my hand tight, wanting to go home. A reservoir of tears stored in my soul was streaming down my cheeks. I could not compose myself. My face hardened as I looked out the window towards the grey sky. Inside, my emotions were a mighty river. And my dam was beginning to crack.

A grimace of pain & sadness passed over her face. She casted a tender glance at me. Her wary eyes darted around. Her little neck stretched as high as it could to look over the bed. She was perching for a look of my Honda, parked along the sandy path. She grasped my hand pointing to her pair of pink shoes by her bedside. She really wanted home.

The foster brother who had wiped away the tears that had flowed, put the bandages on wounds and cut her nails, she would probably not see for eternity. But beginning today, someone else would if ever. As dusk gave way to night, I bade farewell to her, fully aware that when she would need me the most, when her cry of despair would roar through the heavens, I would sit in silence, unaware, standing ready to wipe away any tears.

I visited her for four continuous nights and I left with a sense of emptiness. I was in strong emotional fortitude and decided to bring her back into the arms of grace. I grieved initially - not for myself, but for Ivy. But I picked myself up almost immediately, determined to do my best to help Ivy. Each night I went home with an emptiness. A little something inside me died. Her life was in limbo and things had gone all soft. A part of me had been cruelly wrenched away. It was as if I had stumbled into a time warp and been transported into another world, where there was no security, no future and no hope for Ivy. There was a lot of soul-searching.

I wanted Ivy home again. The pain of parting was too much for Ivy. But this decision to bring Ivy will not go unchallenged, I will have to wade through endless challenges and I do not regret my choice. Nonetheless I had good reasons to worry on what lies ahead. It was going to be a very difficult cross to carry.


The Day The Earth Stood Still

I fought tooth & nail with my mother in her coming back home. The mention of Ivy would be laced with bitterness. Cracks opened in our relationship. My mother eyeballed me sternly before saying her final ultimatum, in her usual deadpan tone - she wanted Ivy to remain at the old folk’s home. She shouted at me in dialect, ' We have done enough good deeds for Ivy already! Twenty-one long years! I'm getting old now, please don't burden me anymore!'. It apparently caused her hormones to bubble. She must have thought that I was a completely misguided soul.

I just wish my mother would give me the space to do what I want to do in this life for Ivy. Unfortunately, life is not so accommodating.

I felt a knot in my throat. 'Mother, please, Ivy does not take a lot of effort to take care of. I can get a maid to look after her.' I know at best, it was an absurd argument. I know she simply wants to draw an icy cold line and wants me to move on, without Ivy. My mother looked set to pull the trigger. I began to make sense of what was happening and became emotionally refrigerated. The repercussion was going to be significant. And it did.

Anyone would have empathised my mother, how could I refute that? I have seen it each day myself and was very much part of it. Sure she had enough, probably more than anyone could imagine. But in me, the word 'burden' was no more in my vocabulary. Ivy and I have a bonding relationship that transcended beyond language. How could I sear through the spirit of humanity and bring forth the unction. The words jammed in my throat. The atmosphere between us was extremely frosty. In the eyeball-to-eyeball confrontation with her, I could not afford to blink. I was walking on an emotional tightrope. I felt in my bones that I should fight on. But my soul was also clogged with guilt in chaining my mother with this burden again. I felt absolutely imprisoned. My mother was already at the autumn of her life. I was greatly pinched between these two facts. I thought I should not roll into the mud of empathy and to emotionally disconnect myself from Ivy.

Nobody is better prepared to shoulder that responsibility.

I was in limbo, I lived every day with doubt; I did not know where to pitch my emotions. My fourth sister whom was closest to me, but was not always at the same page with me. She had been encouraging me to let Ivy stay in the old folk's home, probably a better & cleaner one. She would have thought that I was merely in a perpetual state of anaesthesia. She seemed resolved to psych me out, asking me to put Ivy aside and move on. I hated the popular self-help notions of 'closure' & 'moving on' trying to find some closure.

But my sister knows that I'm the decisive but cautious type, and never makes a decision without in-depth thoughts and consideration. She cautioned that I should not hazard everything on a single throw of dice. It is going to be a long haul she warned. She wanted to be sure that I was in touch with my own feelings and not inevitably opened a can of worms in my life. But to me there is no right or wrong about it. There are many things which need no such differentiation of right or wrong. I made my point clear to her, that there was no going back. I was very clear about it and I did not know why she was not. I looked set to bite the dust at all cost.

I was firm on something special. I have to stand that extra inch taller unmoved by these barbs. It took her a long time to see the truth of my statement.

I must make my own judgments, which are not subject to anyone else's agreement or approval. I have no one to please but myself. Life is in the process, in the living, not in the outcome, and the process of living is the process of making ourselves.


The Sting

Ivy's own sister, Jane, a bank officer, called me, interrogating me for my actions. I was held hostage by her answerless questions. She made it clear to me that I did not have the jurisdiction to bring Ivy out of the old folk's home. It was none of my business, she reiterated. That was a cruel irony. Someone fighting to reject her own flesh and blood. She must have thought that I had lost my bearings. I was a young and promising engineer at the age of 28, only 3 years upon returning from my undergraduate studies in England.

She thought that I would cop out and would eventually walk out of this mess when any crunch comes. Obviously, the responsibility of Ivy would fall on her. We were light years apart but there was nothing senile about her words. Her certain words carried strong emotional overtones, like one who plunges verbal ice-pick into hearts. That was unfortunate. Well, it is just that people chide you because you have depicted the truth and touched a raw nerve.

She was a young woman then, 25 years old, single. She would have to build her own family, so was I. It will not be easy for any would-be spouse to accept Ivy into a matrimonial home. Marriage has to be in some ways, be put on a pedestal. Before she hung up, I gave her my iron-clad guarantee - there will be no turning back. And most importantly, she would have absolutely no obligation to take responsibility for her own sister. After Jane hung up, she was out of my life for good.

Remember that I do not owe anyone justification or explanations. I cannot just pretend that Ivy came through my life like a sandstorm and disappeared in what seemed like minutes.


Morning has broken

On the fifth day of Ivy’s stay in the old folk’s home, I called up her mother and told her that I had decided to bring Ivy back home. I followed my heart & trusted my instincts. I was prepared for the messy aftermath of going against my own mother.

Ivy’s mother was not apprehensive and accepted my decision graciously. I explained to her and reassured her of my decision and responsibility to take care of Ivy, for good. She did not asked me for an iron-clad guarantee that I will fulfill this responsibility in all adversities. It was not cast in stone. She then called the old folk's home to inform them of Ivy's homecoming. Together we headed to fetch Ivy in Jalan Kayu. When we reached there, Ivy was in a fearful state. The medical orderly there said that she refused to be bathed, apparently out of fright. Her long cotton pants were torn and tattered. She was then changed to a new set of clothing. Ivy looked perplexed at first, not knowing what was happening. As usual, I put on her tattered pair of pink shoes. By then she knew she would be going home. Her face brightened up and stood up rod-straight after wearing her shoes. She was then from smiling ear to ear, holding on to my hand tightly. Ivy's mother was at the same time making the administrative arrangements. They refused to refund her the $5,000 one-time fee for putting Ivy there supposedly for good even though she stayed for only four days. Her mother sighed. $5,000 from her life savings meant a lot for her. She walked away looking resigned.

After the procedures had been done, we waved goodbye to the old folk's home staff. Ivy turned her back and walked briskly to my battered Honda. Once inside, she held on tightly knowing that she will not come back again. As I drove along the winding and sandy path along the track, my joy of seeing Ivy back home suddenly turned to uneasiness. As the reality began to sink in, the feelings surfaced.

I thought I had make no allowances for personal emotion, it was a decision, not a feeling of wanting to bring Ivy home. I swallowed hard. After losing much sleep over it, I knew I must withstand all terrains. As I glanced at the rear view mirror, Ivy's lit-up face cheered me on. Her beaming face said it all. I'm passionate about decisions made and it is hard for me to just let emotions ride. I am a fighter who comes out on top, no matter what life throws at me.

Keeping a brave front, we arrived home. Ivy was restlessly looking around the familiar surroundings once again. My mother answered the door. Ivy's beaming smile was silenced by my mother's burning anger on her face. She gave my mother a wounded puppy's look. But my mother turned and walked away gravely after opening the door for us.

I temporarily lost myself. In fact, there is no word from my mother, period. And the silence is deafening. But Ivy's wary eyes darted around, not knowing that her ''Promised Land', was paid at a price. It was a solution looking for a problem. My mother's face was tight with pent-up emotions, all ready to burst at the seam on me. I know it was not going to be a walk in the park.

I brace myself for a long, cold winter ahead. But I only go one way. I have not got a reverse gear. I need to engage the power to move mountains to get something done. But conversely I felt peace, calm and strength. I was able to rewrite Ivy’s future. And my challenges ahead would fade away from the rear view mirror altogether. It was risky decision, I need a strong heart. This episode had kept me on the edge. It was the lowest point in my life. It was a predicament unnecessary in the opinion of many and was far from over.

Each day I needed my mother to look after Ivy all over again. Practically everything had to done for her - from feeding, bathing, changing her. She was not any easier to take care of than a two-year old child. The air was bitter, the ground hard. My mother was melancholic and depressed. She already had weathered some hard times in the past. She had seen fire and she had seen rain in taking care of Ivy. Somehow she dragged along and I began to see her anger doused. It must be her maternal love for me that brought her to last the distance with me.

Chapter 4 Her Resurrection of Life – Second Coming

On early morning of 4th December 2008 , Ivy was found by our maid, slumped on her seat, looking pale, gasping for air and semi-conscious. We rushed her to the Accident and Emergency Department of Tan Tock Seng Hospital. The doctor broke the bad news. Her congenital hole-in-heart had worsened. The holes had irreparably enlarged and the blood flow in her heart had gone erratic. She was then hospitalised and palliative medicine was administered. Her breathing was very shallow and her heart beat had slowed. The gloomy-looking doctor summoned me and informed that Ivy could leave this world at any time. He beckoned us to get all her family members to see her for the last time. My wife contacted Ivy’s mother and she arrived soon at the hospital.

Ivy’s eyes were weighty with an oxygen mask, helping her weak breathing and tubes all over her.
I called her name and awoke her. With tears streaming down her cheeks, she held my hand weakly. The doctor reminded us that Ivy had already miraculously lived a relatively long life of 44 years. Every time my wife and I visited her, her eyes welled up with tears, gripping my hand - she wanted home.

Given her weak state of Down syndrome and hole-in-the-heart, she would not have lived beyond 35 years. He said that it must our exceptional care and love for her that brings her thus far. The doctor pulled me aside and intriguingly asked me what made me take care of a Down Syndrome girl, which is obviously a humongous task, especially when she is not related to my family at all. I simply summed up to him that I could not take care of all the unwanted Down Syndrome children in the world, but at least I could take care of just one. I have never seen a doctor so in touch with the soul of a patient. For most doctors I perceived thus far, they do not go beyond ministering the physical illness itself. Before he walked away, he patted my back and said “Mr. Hong, I am so amazed by your good deeds. I really respect you for that.’’

My eyes turned back on Ivy. She was pale and her breathing was very shallow. But I sensed that Ivy still
had a fighting spirit in her, wanting to live on at least for while. I got my wife to call for an elder for prayer, from our worship place. A deaconess came soon and anointed her with oil from tip to toe. It was not the ritual of last rites, but it was to overcome the yoke of sickness and that she would recover. But the next day, Ivy’s condition turned for the worse - again. My wife could not wake Ivy in her deep slumber and then quickly summoned the doctor. He examined her and solemnly told my wife to call for family members to see her for the last time. I rushed to the hospital from work and prayed to God that Ivy was not ready to go yet. Soon after the anointing soaked upon her and she awoke.

We visited her twice a day. After visiting hours, late at night, we would sneak in to the ward to visit her.

As her heart beat and oxygen level were dangerously low, the doctors increased the level to 80 percent. But her condition did not improve. A few days later, they lowered it back down.

A few days later, they removed oxygen support completely. We were immensely worried, thinking the doctor had given up trying to sustain her life.

The doctor informed us that they could not keep Ivy in the hospital any longer because they could not do anything to cure her. They then arranged to send her to the Dover Park Hospice for palliative care. On December 19 2008, Ivy was sent by an ambulance. The social worker and the doctor there went through with us very thoroughly the vivid details of planning her last days in the hospice. We were told that Ivy would not live beyond 2-3 months. Planning entailed her funeral preparation and death reporting procedures. My wife and I felt heavy and uneasily planned ahead for her impending funeral.

Ivy’s frail, 83-year-old mother, Jessie, would visit her daughter every day, unfailingly. She would often stay the whole day there. She was immensely worried about Ivy, as she had lost contact with her eldest daughter Lillian, and was not on good terms with Jane, her second child.

In the midst of all the happenings, Jessie lost her home due to some problems with her co-tenant staying in the same rental HDB flat. My wife went all out to help her. She went to HDB to get Jessie’s name removed. This was a necessary procedure. She later got Jessie a permanent place at an old folks’ home under Asian Women Welfare Association (AWWA). Jessie was very pleased with her new home, with plenty of facilities. She thanked my wife for my efforts, and later sent us some expensive chocolates for Christmas. During Ivy’s stay in the Hospice, Jessie would go around the ward, telling visitors about us.

We visited her everyday in the hospice. She was very well taken care of. From nursing care to food, it was a very conducive environment. But the sight of many other patients living their last days makes one uneasy, naturally. The smell of death was strong as you walked past each ward.
One moment the patient residing beside Ivy was well and the next day we heard that she passed away. Perhaps the memories of my own father who passed away in the same hospice added to the dread. My wife was apprehensive in taking the huge lift, which was often used to transport corpses. She insisted we took the steps.

On 13 January 2009, Ivy had her first ever birthday - outside home. We bought a humongous chocolate cake. Her fellow ward mates gathered around her to celebrate the occasion. She was smiling from ear to ear .

Two months had passed, Ivy’s health would have deteriorated but instead her sunken pale face had turned radiant and healthy. The doctor was increasingly surprised and soon decided to call my wife, asking us to bring Ivy home. He said that it was a miracle that not only she survived but she was much more alive than ever. On xx Feb 2009, we brought Ivy home for good. It was like her second coming. The beaming smile on her glowing face said it all, when she stepped into our home once again. Resurrected, raised from the `dead’.


Epilogue - The Long and Windy Road

Through it all, I stuck to truth & authenticity. I was very pleased that I stayed true to myself. I held my head high unrattled. But I do not wish to wave a flag about it.

I want to embrace her life as long as I have mine. I stood the test of time.

Life is a miracle of joy, I don't want to go yet.

I do not want to let my life pass without having made a difference to hers.

A lifeline. I found my calling, I thought. I illuminated her life like the passing moon.

Ivy's whole life and aura revolve around me, I cannot let go. It was as if her life had come full circle.

She seemed like such a wonderful child; I wanted people to look past her disability and see her wonderful soul inside.

I do not know whether it is love, compassion or responsibility, but one thing I am very sure -there is no greater dignity and joy than to give your life for others.

I am glad I made the choice. My heart is at peace. The years ahead may be cruel and the times may be hard, but I'll be there. No expenses are spared. No corners are cut.

Though I carried the torch for many years, my satisfaction comes in the form of the ability to make a difference, a higher calling than just simply for money.

I believe that life is worth living for her, and that belief helps create the fact for her.