4th November 1988

 Happy birthday, my dear son.

On this day, 

You came into our world

And our lives were turned upside down

Our lives were never the same again

Yet

Because of you

Our lives have been enriched

You gave meaning to 

Love is patient

Love is kind

Love hopes all things

Endures all things. 

You did, son. 

You taught us what it means

To count our blessings

The many things we take for granted

Are the things you struggled to do

Things you could not do

Yet you never once complained

You're pure as an angel

Mummy dreamed of travelling the world with you

I had fanciful thoughts of chartering a plane

Hiring a team of caregivers

Together we will travel the world

If only we have tons of money

But as you grew older

Your world got smaller

Until it became the four walls of our home

We always brought you with us whenever we had an outing

That was when you were little

But as you grew older

Things got more difficult

Mummy still remembers the day

When Papa suggested we leave you at home

It was to be expected

Because meeting your needs outside became more challenging

You could only watch us without joining in

Leaving you at home the first time was not easy

It hurt

I wished we never had to do it that way

But that was how our lives had been

Yet, you never once complained

Remember the Chinese reunion dinners?

You attended everyone of them

We would occupy granny's room 

It gave us privacy

But with granny's passing in 2005

Those reunion dinners ceased for you

Because we couldn't have the same kind of privacy

Other than granny's room

 

The only thing we looked forward to

Was visiting Popo on Chinese New Year

At Popo's

We could be ourselves

And there was room for you

Visting Popo was the highlight of Chinese New Year

Apart from that

Mummy never liked Chinese New Year

Because such an important festive occasion

Was when you were most neglected

Because we had to leave you at home

As we went visiting your aunts

I'm so sorry, my son. 

I couldn't do better for you. 

But you never once complained

Imagine how different life could have been for you

Had mummy taken better care of you in my womb

Throughout pregnancy mummy was dead tired

I woke up each morning, so tired

It felt like I had done a whole day's work without rest

I was too busy taking care of my students

To pay attention to you

Until it was too late

And you were born with multiple disabilities

Right from the start we knew

You must have a sibling to take care of you when we grew old

Or when we were no longer around

We planned early

And Grace came along

It wasn't long 

When it dawned on mummy

That a shared burden is better

Than Grace bearing it all alone

Thus Rachel came along

When you were six

We knew right from the start

How much we would need the grace of God

To see us through each day, each year

To sustain us

This is why

Both your sisters have 'grace' to their names

We started off with faith in our hearts

Believing God for miracles for you

Thus we worked you so hard

So that we might play our part

God, His part

Your days were packed with exercises

From standing to kneeling 

To bouncing on the inflated bolster

From push-up to sit-up to sit-stand

And aided walking

You did them all with nary a complaint

Even when you are so tired

You tried your best

Alas, all our hardwork came to nought

As years went by, 

Our hopes and faith were also left behind

One by one

We gave up the exercises

And with them

Thoughts of miracles.

Discouragement set in

Disillusionment followed close behind

Till the day we gave up all miracles

And our hearts became full of sorrow

We were not lazy

We worked so hard, did our part

As we all grew older together

Your sisters wanted conversations on 

The matter of your long-term care

They have grown up

And they felt this was an important topic

We need to have proper conversation on

It was a sign of their maturity

But mummy would shut them down

Because deep down I knew

The only option was a nursing home

But the thought of leaving you in a nursing home

was a tormenting one

Yet increasingly 

I recognised that I could not expect them

To make sacrifices the way mummy did

Giving up everything from career to freedom

In order to look after you

It is right that a mother should do this for her child

But it was not fair to expect your sisters to do the same

They do have their own lives to live

They could not be expected to give up their career

Mummy promised you I would take care of you

All the days of your life, didn't I?

I told you so

More than once. 

That I would keep myself strong and healthy

To be able to look after you physically

Thus I went to the gym 

To workout to keep fit

So that I would always have

The physical strength to take care of you

We were to grow old together

I would be 100, fit and strong

You will live up to 70

I promised you I would always be around

To take care of you

So that you would never ever be neglected

It was easy to trust God 

When we were still young and strong

But as we grew older 

And our own 

I was trying to save for a lifetime but my son left us unexpectedly early and I was left with his money

A day after my son's funeral, I called MOM to inform them that I no longer qualify for the maid levy concessionary rate of $60. The girl who took the call told me I did not have to inform them because their system would have informed them already. That's how efficient they are.

True enough, I received MOM's notification on the prorated maid levy I had to pay with all the correct details.

Although my son had not worked a single day, he left behind more than ten thousand dollars that belonged to him. Part of this money came from his Edusave which was untouched. The accumulated sum was almost $3600.

I had reminded myself to claim this money from CPF Board because it was one of the last things I could still 'do for him' out of my love for him. Before I could take any action, I received a letter from CPF Board that was dated 2 days after his passing.

The letter expressed condolences and assurance that the board was handling his CPF matters and that we did not need to inform them of his passing.

That's how efficient they are. This early letter was followed by another with information on what to do when no nomination was done, and how to go about it.

The rest of my son's money came from his Hongbao money accumulated over the years, which I had carefully saved up for him for his 'old age'. Part of the money also came from the GST Cash voucher he received from the Government.

In fact, he had a cheque for $600 in GST cash mailed to our address that was dated after his passing. I therefore did not cash the cheque. I had wanted to mail the cheque back to MOF but then, decided to keep the physical cheque together with his other belongings as the precious memories of him.

I had always been doing my best to save up as much as possible for him, for his long term care, for his old age. I was trying to save for a lifetime but my son left us unexpectedly early and I was left with his money.

I had been so very frugal because of him, because I wanted to make sure he would be provided for when he was old. As a result I didn't spend unnecessarily on him. I took care of our basic needs and gave up on the luxuries and unnecessary.

Now I am left with his money and the few things I had bought for him that were still unused.

I have thus changed my outlook somewhat. I used to do only one thing - save for the future. Now, I think we must save for the future but also spend to enjoy for the present.

And now, we will never need this suction machine ever again

We bought this suction machine because of the need to suck out phlegm that accumulated due to the feeding tube.

For seven months after his birth, I fed my son with a feeding tube that went from his nose down to his stomach because he did not have the swallowing reflex to coordinate the act of swallowing without choking.

The machine came in useful again when he became very sick when he was around 12+.

After that, we didn't have to use it again and it was put away for a long time. Last October 2019, my husband wanted to throw it away. He said he would not ever want to use it again as it was too strong and caused too much trauma during suction.

I had no objection as I hated the discomfort it caused though in my heart, I thought to myself, 'What if we need it again?' 

Don't take for granted all the blessings you are endowed with

Written on 2 Oct 2016 when my dear son is still with us:

My son at birth and 6 months later. The round-the-clock tube feeding at 3-hour intervals had given him a slightly chubby look.

Tube feeding was a temporary solution. He couldn't possibly be tube-fed for the rest of his life, could he? Eventually he must learn to eat without choking. That was one of our concerns.

Thus began my son's long and arduous journey to learn to do the things that normal people have taken for granted.

He was 4 months old when I started to give him a milk-and-cereal mix by spoon so that he had the chance to learn to eat orally.

I propped him up on a pillow supported with bolsters at an incline so that gravity would help the cereal and milk to stay in his mouth and flow back to his throat for him to swallow. It was difficult. Most of the food was spilled. Every so often he would choke trying to swallow.

Off and on I also tried to give him milk from the bottle without success.

One night when he was 7 months old, we had just returned from my mother's place when I discovered that the feeding tube had become 'undone', probably due to his cheek rubbing against my shoulder.

It was night and we did not have any sterile feeding tube at home to use. The pharmacies were all closed. What was I to do? I was upset.

I prepared just 4 ounces of milk. My son would have to try to drink from the bottle. I wasn't going to give up.

Lo and behold, my son drank from the bottle! He was hungry. He drank all one ounce of it and then he stopped, tired and panting. I let him rest for some minutes and then I gave him the bottle again. And he drank another ounce and then he stopped to rest. Thus, resting in between, we finished 4 ounces of milk without choking once!

Oh the joy. You don't know how happy I was that night. I was so very proud of my son. You don't know what it was like to hold an empty milk bottle in your hand. I wanted to announce to the world that my son drank a bottle of milk all by himself. I didn't of course.

Next time you see a newborn baby sucking contentedly at a bottle of milk, you don't realize it but you are witnessing a miracle.

My mother loves my son

My mother loves Daniel. I could not have managed without all the support from my mother and my siblings. They were my pillar of strength, always there for me.

When it became difficult for me to visit them with my son as he got bigger, I asked my sister if she would consider selling their Tampines flat to move nearer to where I was so that I could walk over with my son.

My sister sold the flat she jointly owned with my mother and they moved to Pasir Ris.

Such was the love and support I got from my family.

Due to the COVID-19 situation, my mother and siblings could not visit my son in hospital though they wanted to.

When my son got worse, my mother wanted to see him. It was early in the morning of 19 June 2020. So my sister asked for a video call. At that time my son was so sick, he had no energy to response to anything. But when we held the phone before him and my mother called him by name, I saw the immediate response in his eyes and he moved his lower jaw.

I was really heartbroken, really heartbroken. He was not able to express himself. He had been shut in a world not by his own choice. From the time he was born, he had been shut in his world not by his own choice. And forever, carried with him all the things that he would have wanted to say but could not.

I was full of faith in the beginning and always hopeful for miracles. We worked so hard, exercised so much but as the years went by, our lot was one of giving up, of yielding bit by bit.

Discouragement replaced faith and hope. It was difficult to bear. The suffering of my son never left me. It was a torment to think of how he had suffered.

His greatest strength became the source of his greatest suffering. This strength of enduring without complaint meant that many times he suffered alone.

Half an hour after my mother spoke to him on video call, suddenly the nurse fussed around him changing the nasal tube to oxygen masks. I look at the monitor and saw his oxygen level falling from 100% to 80+. I checked the clip on his finger. I thought perhaps the clip was not properly in place and not measuring the oxygen level correctly. But his blood pressure fell. Everything happened so quickly. In a matter of seconds, the oxygen level dropped to zero. And the colour left my son. He was completely pale, colourless, and his eyes remained open.

I cried. It was cruel.

A thunderstorm and a black bin bag

It started off as a lovely, cool morning. I thought it was a good day to bring my son over to my mother's place. No need to walk in the hot sun.

So I pushed my son there in his wheelchair. All good for some time. We reached my mother's place in good time after some 15 to 20 minutes or so. Not long after, the sky threatened to rain.

I decided to get home fast with my son before it rained. My knees at that time were injured due to overuse (another story), but in the hurry, the pain was forgotten.

I walked fast as I pushed my son in his wheelchair, hoping to beat the rain before it came.

But the rain came fast and heavy. We were halfway home when it started to pour. We were caught in a thunderstorm. The thunder was loud.

We took shelter at a small rental bicycle shed at Pasir Ris Town Park. There were other people taking shelter there too. With strong wind and heavy rain, we would get drenched in no time.

The loud, crackling thunder frightened my son. He was cold and shivering. The umbrella was of little use. We did not have a raincoat. I wanted something to keep him warm as his hands and legs were icy cold because of wind and rain. I was afraid he would fall sick from being caught in the rain.

I turned to the rental bicycle operator and asked if he had a big piece of plastic. I asked for the big, black plastic bag used to line rubbish bin.

He was kind enough to spare me one. I made a hole in the bag and slipped it over my son. The plastic would act like a windbreaker and would at least keep his body warm.

In a desperate time, one can't really care that the plastic bag was meant for the rubbish bin. It served its purpose. At least it would keep my son's body warm.

We waited. The minutes went by. The rain showed no sign of abating and lightning and thunder continued to flash and crack.

The park was flooded ankle deep. I was caught between waiting and wanting to get my son home as fast as I could so that I could quickly bath and give him a change of clothes and warm him up.

I decided we would not wait for the rain to stop as it looked like it wouldn't stop anytime soon.

So I bent down with the open umbrella propped on my shoulder while I pushed my son on the wheelchair through the water in the park to make our way home.

It was not easy as my son kept slipping down in the seat and every so often, I had to stop in the rain to pull him up. So I had a number of things to do: keep the open umbrella propped on my shoulder to give us a some shelter, push the wheelchair, make sure my son did not slip off the chair (the seat belt was of little help), keep him balanced on the chair.

It seemed like ages and we finally reached the road at Drive 1. We crossed the road and up onto the pavement. And guess what?

The rain stopped. It stopped just as we reached home. To be honest, I don't know whether to be thankful or not.

I was just glad that we reached home. I gave my son a quick shower to wash away the rainwater, and then warm him up with some towels.

Thankfully, he did not fall sick after this incident.

When all was over, I realised my knees which had been very painful due to fluid retention caused by injury, did not feel any pain during that challenging time, that I was able to stoop and walk hurriedly with bent knees without experiencing the pain. Perhaps that was the other thing I could be thankful for.

This happened more than 10 years ago. It was also my son's first experience in the rain. Janet was our helper at that time.

A devastating blow instead of hope

I brought my son to hospital on 10 June 2020 Wednesday afternoon for a hope. But I was delivered a devastating blow instead when the emergency doctor came to talk about what they would and would not do for him, and EOL care. Not only that, due to the COVID situation, after my son was immediately admitted to the emergency department, I could not be with him. We were separated in our hour of need and desperation.

Your eyelids did flutter, didn't they?

 As I watched the white coffin bearing my son in it rolled towards the closed doors, and Amazing Grace being played, the finality of it all overwhelmed me with helplessness, grief and despair.

I broke out crying. And in my heart, I cried, Stop it. How can you do this to him?

I wanted to go grab my son and take him away. But the glass and distance separated us.

The cruelty of life is that you have it and yet you do not own it.

I often feel that I have failed my son. In many ways. I have let him down. I could have done better.

He was so beautiful and handsome as he laid there. I had wanted to tell the embalmer not to put too much powder on him but to let him be natural and himself.

I didn't have the chance to do so as everything happened so quickly after he breathed his last.

I was glad when I saw him again that he wasn't caked up with powder. There was little powder on his face and none on his neck. He looked just like he was, and not like a corpse at all.

He wore the best shirt he ever had, a blue surfers paradise shirt. It brings the brightness out of him.

He was so beautiful, so natural and so pure. He had very long eye lashes, and looked like he was just sleeping.

I talked to him during the wake when I was alone with him. I had things to say to him. Three times, I thought I see a very quick flutter of his eyelid.

I thought perhaps it's the light above that blinked. But there was no faulty lights.

I swear his eyelid did flutter so very quickly....

My Son and I when he was around 1

 

My son and I when he was around 1. He was a lovely boy, but so soft and floppy few people dared to carry him. I used to carry him and sing to him every night in the kitchen to try to soothe him to sleep. Those were all very precious moments. Before his sisters came along, he was my preoccupation.

I did not believe that life was fair. And I still don't

Walk alone

 

Went for a walk alone this morning.

I used to push my son here in his wheelchair because we could just walk here. No public transport needed. This was as far as we could go given his needs. Love you always, Daniel.

A little memory of my dearest son

 

While little toddlers spend their time running around and playing, I was the slave-driver putting my son through a daily routine of exercises - seven days a week - in the hope that one day, he would be able to walk and run.

There were times when he was really tired but at my persistent prompting, he would continue with the exercises, whether to do push up, or to stand from a sitting position and so on.

Our first separation was when I had to leave in the night after he had slept to go to hospital because my daughter was due to be born.

My mother told me that the next morning, he pushed himself in his baby walker to every room in the flat to look for me. Not finding me anywhere, he finally stopped in a bedroom and burst out crying.

It must have been a frightening experience for him because there had never been a moment when I was away from him.

Our second separation happened because he was sick and had to be admitted to hospital.

He is the sweetest young man ever. I miss giving him hugs and kisses and telling him how much I love him.

Life is cruel

 

Daniel....

 I miss my son so much. 

You did not make it home.

 

Here to settle my son's matters. 

Mummy does not have to wait for you anymore?

When my daughter, Rachel, asked me what time I would go to buy lunch, I looked automatically at the clock and almost said, "Wait till ko ko (ge ge) has his lunch first."

Sigh.

Suddenly I don't have to wait for him anymore.

Thank you for helping with my online work during my time of sorrow and grief

I thank my friend for the help they had given me during this very sorrowful period of my life. Words cannot express my deep appreciation for you. You know who you are.

You took over a large part of my online work during this difficult period. This has allowed me to focus fully on taking care of my dearest son while he was sick and to grieve thereafter.

Thank you, dear friends, also for the concern that you have shown me during this period via your messages even though most of us have not met in reality. I'd like you to know that I appreciate you even though my replies have been brief.

I miss having to rush home each time I'm out because my son would be waiting at home for me to come to him.

You're the best, Daniel. 'Best' is too inadequate a word to describe you, Dan Dan.

 

My life is being given as an offering for God. The time has come for me to leave this life here. I have fought the good fight. I have finished the race. I have served the Lord faithfully.

2 Timothy 4:6-7, ERV

Be happy, Daniel, then only can mummy be happy.

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

Revelation 21:4

 Darkest days of my life when tears just run dry for my precious and dearest.