Daniel's first anniversary

Today marks the first anniversary since Daniel's first and final 'goodbye' to us. This day last year - 19 June 2020 - was the saddest day of my life.

Since then, not a single day passes when I do not think of Daniel. My heart aches each time. But I tell myself to be sad but not broken, and to do justice to the freedom that Daniel gave to us with his departure. To live well so that Daniel will look down from heaven with joy. 

Exactly at 8.32am in the morning, Daniel breathed his last after he had the chance to hear my mother's voice. The one thing I'm thankful for is that Daniel got to hear from the people that mattered to him before he left, and mother was one of them. 

How his eyes widened at the sound of her voice. And he moved his jaws. I know he recognised her voice and was responding to her in his own way. I am sure there were things he wanted to say - many things - but couldn't and that's really the hardest part. Being unable to express himself because he was not gifted with speech. That's really heartbreaking. 

Shortly after the video call, the nurse fussed around Daniel. I quickly realised that the oxygen level in his blood was falling. I thought perhaps the clip was not in place and lifted his hand to check. But the oxygen level kept falling and the nurse kept changing the oxygen supply. In a matter of seconds, it dropped to zero and the colour left Daniel's face. His face and lips were white, his eyes remained wide opened. I realised at that moment that Daniel had left us. 

It was hard. It was sad. 

Up till that moment, my life had centred around my son. Everything I did was with him in mind. When I finally accepted that he would never be able to help himself, I resolved to take good care of myself so that I would be able to take good care of him all his life. We would grow old together. I couldn't bear the thought of leaving him in a nursing home one day. I had told him that I would always be there for him. And my prayers had always been that God would me and my husband healthy and strong so that we would always be able to take care of Daniel.

Life has a way of granting us our wish but not in the way we imagine. I did take care of Daniel all the days of his life but we didn't get to grow old together. 

Today we went to visit him at Mandai. 

It felt like yesterday

How time flies. It's coming to a year since you left us, son.

This time last year, you were already very sick but mummy had no idea at all. Mummy didn't know that less than a month later, you would leave us. I was still doing my own thing at the computer with you sitting next to mummy.

Yet the signs were there. In the last few months of your earthly life, you had lost weight. You were already skinny to begin with. I watched with a deep sense of helplessness at your bony frame wrapped with skin, how your buttock muscles had wasted away. What was happening in your body? You couldn't tell us. I'm so sorry.

Then you had an epileptic fit on the night of Sunday 7 June 2020. It lasted for more than an hour. We tried to take care of you on our own. All the years, we took care of your and nursed you back to health whenever you fell sick. Except for the time when you were 2+ years old, we had avoided the hospital.

There was the time when you were in your early teens, and fell sick with high fever and a resulting fit. We took care of you too, and sucked the phlegm from your throat. You were so sick for almost a month but eventually you recovered.

When you had the fit on Sunday, and the fit kept coming back, and became more frequent, mummy was anxious, confused and afraid. I really wanted to call for an ambulance. At the same time, I was so afraid I would not be allowed to visit you in hospital as we were in Phase 1 after the Circuit Breaker.

Eventually, on 10 June, we brought you to Tan Tock Seng Hospital where you were admitted straightaway. I had hope against hope that it would just like the time when you were in your early teens, so sick and yet you recovered. But it didn't happen that way this time.

Not a single day passed when mummy does not think of you. You are my dearest son. Time will not wash away the pain.

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

 

 

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.