Card from UK

I received a custom-made card from UK from a family (of my overseas support group) who understood the pain of losing a child. In a digital world with e-cards, facebook, watapp, it is heartwarming to receive a card specially delivered from UK. The message (written below) in the card is comforting. Thank you Denise, Paul, Joshua, Jessica, Emily and Angel Harry for your love, thoughts and prayers.

"The truest measure of life is not in its length, but the fullness in which it is lived"
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She is gone

You can shed tears that she is gone

Or you can smile because she has lived

You can close your eyes and pray that she will come back

Or you can open your eyes and see all that she has left

Your heart can be empty because you can't see her

Or you can be full of the love you shared

You can turn your back on tomorrow and live for yesterday

Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone

Or you can cherish her memory and let it live on

You can cry and close your mind; Be empty and turn your back

Or you can do what she'd want; Smile, open your eyes, love and go on

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A gift from God

Wait just a moment, I wish you could see

The wonderful thing that happened to me

Jesus was waiting, His arms open wide

And He and His angels, brought me inside

Such a beautiful place, that I cannot describe

A new home for, from the moment I died

I will wait here for you, so dry up your tears

And go on with your life, free from your fears

Know that God's near you to help and to guide

He'll never desert you; He's there by your side

So speak to Him daily, from inside your heart

And let Him assure you, we're not really apart

The Joy Truck (tv programme)

Prompted by the special needs support group, Dez and I watched the first episode of The Joy Truck, featured every Tuesday night, 8pm, Channel 8. Today's first episode was on three families with their special needs children.

Zoe Tay and Huang Biren was stunned and speechless when they first saw the children. The three children were Chloe (Pompe disease), Grace and Jarren (congenital hypomylinating neuropathy). We knew Chloe and have seen Grace during last year Christmas party. I have seen Jarren in school though I do not know his parents.

Zoe Tay broke down completely when she saw that Jarren was crying so hard but there was no sound coming out (because he has a tracheostomy). She said that it must be so painful for the parents to be unable to hear his crying as crying is what normal children do easily.

I recalled the first time that Charlene cry so loud that the whole NICU could hear her, I was so proud and happy. But when she kept crying non-stop for the last few months of her life, there were times I got angry with her. I feel so regretful now as I can never hear her cry again.

As parents of special needs children, our wish is so small.That our child will still be alive when we wake up, that one day our child will call us Mummy and Daddy, that our child can give us a hug, that our child is healthy and happy. These are the things that any normal child can do and are taken for granted. For people with normal children, their concerns are which good school to enrol their child, which enrichment programme to send their child to. In a sense, though our children suffer because of their medical condition, they also get so much more love from their parents (unconditional love) with no lofty expectations to be fulfilled.

The parents also shared in the show the rejections they face from society. Whenever the children are in public, carrying their assistive devices and wheel chairs, the people looked at the children as if they are zoo exhibits. Charlene is fortunate in the sense that she doesn't have a tracheostomy or any assistive device like oxygen machine on her. But because of her unusual head shape, we are aware of people staring at her and us when we carry her up the bus, on the MRT and in public places. So because of the logistics involved (especially no car) and what is in store for us, some of us do not bring our special children out so often. The show specially allowed them to visit Sea Aquarium after operating hours (kudos to them). I wish I had a chance to bring Charlene there too.  

Many of us have also heard insensitive and hurtful remarks from the public. I have got aunties on the street telling me that I must have done something wrong during my pregnancy or I have sinned badly in my past life. Even comment like "why don't you have another child? The next child will be cleverer and healthier."  To the special needs parents, we feel that if someone has nothing encouraging to say, they may as well keep quiet.

One of the worst thing we heard was in response to Chloe's condition. Someone left a message on the Rare Disease Society website saying that the special need child is the family problem and they should not seek help from the government because if the government subsidizes their family, the taxpayers have to pay more income tax.

To that someone, when you are old, can I also ask the government not to subsidize your healthcare cost so that I don't have to pay extra taxes?

The show also had an online game where the game score will be converted into donations (max of 10K) to the Rare Disease Society. It was heart warming to see that within 1.5hrs after the show, the amount donated raised from 4K to 10K. There are people out there who care. Perhaps, one day, the hope that our special needs children can be accepted and cared for by our society can be achieved....
 

God's grace and power

Our friend shared with us this Bible verse from 2 Corinthians 12:9

"My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me"

She also said

"Even though Charlene couldn't really say much, but Charlene "boasted" so much of God's grace and power than she ever had in her self-sufficiency and reluctance to rely on God most of the time."

The message meant a lot to us... thank you so much.

Eulogy for Charlene (last service) – 18 May 2013

This is the second eulogy for Charlene's last service on 18 May 2013. We have a little more time to prepare so I (Dez) was able to draw up a better outline.
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Eulogy for Charlene – 18 May 2013

Thank you all for attending.

Charlene passed away on 14 May 13, 2333. Charlene was in ICU for about twenty over days.  Towards the end of her life, the doctors have already prepared us for the inevitability.

Towards the end of Charlene’s life, one question keeps recurring in my mind. What is the meaning of life? What is the meaning of life for a three and a half year old girl? This is an important question to me because the answer to this question will determine Charlene’s worth in this earthly world.

Some people say that life is about leading a happy life and enjoyment - enjoying life’s pleasures and comforts. Charlene did enjoy her life. She enjoyed music. She enjoyed people calling her pretty girl. She enjoyed Daddy and Mummy’s carrying and hugging. But her moment of happiness can be so fleeting. There are a lot of moments where Charlene suffered a lot. And if the meaning of life is about enjoyment then some people may say Charlene’s life is meaningless.

Some people say that the meaning of life is about what you have achieved in life – your achievements, your accomplishments, the projects you have completed. Charlene, with a little frail body, had achieved a lot.  Charlene has done a lot of therapy, both at home and in school. She was able to hold her head up by herself. For a child of her condition, it is an accomplishment. Daddy and Mummy are very proud of her achievements. But I know that based on our societal standards, her accomplishments meant nothing.

Some people say that the meaning of life is about the people that you meet. I remember a saying that goes that at the end of an individual’s life, you no longer care about your achievements, your work but care about your family and friends. In Charlene’s three and a half years life, she has met a lot of people. Charlene and Daddy and Mummy have met a lot of people: brothers and sisters in Christ. We have met people in the hospital, we have met doctors and nurses who really care for her.  We also have a lot of friends who come down to visit her regularly. I know that Charlene is very blessed to have met all these people. And I am very grateful for all your presence here today. But again, through societal’s standards, Charlene who cannot talk and express herself and never really know the people she has met... So is Charlene's life meaningful by this standard? I am really not sure.

As a Christian, I would say that the meaning of life should be seen through heaven’s eyes, through God’s eyes.  Charlene only has three and a half years of life. To give an analogy, Charlene may be like  a single strand of thread in a tapestry, a single jigsaw piece in a huge puzzle. There are times when Mummy and I wondered whether Charlene's life is meaningful, because we were only looking at Charlene herself in isolation. But I realized that if I were looking at Charlene through God’s eyes, God has worked miracles through her.

There is a saying that goes that one of the life’s greatest miracles is the linking of hearts even though we are separated by physical body. And I know that Charlene has united a lot of people.  She indeed has touched a lot of people’s hearts and it’s amazing how she has done that even though she can’t talk and only smile occasionally. God’s spirit must have been strong in her to create such miracles in life.

During Charlene’s hospitalization, a lot of people have prayed for her.  I know I cannot name everyone but I would like to thank our brothers and sisters in Christ, people in YMM, SJSM. Mummy and I also like to thank the prayers given by the special needs support group that we have met. We also like to thank the rainbow teachers who really cared for Charlene.  And of course we like to thank our friends and family members for supporting us in these three and a half years.

In the last seven hours of Charlene’s life, Daddy and Mummy were carrying her. We rotate among ourselves and we know that she is happy. And we *know* and we *feel* that God’s spirit was with us in the ICU. When I was carrying Charlene and her favourite music was playing in the background, I felt a sense of peace and serenity. I just felt that I am at home carrying Charlene. Until Charlene’s last breath, she was radiant, she has colors in her cheeks until that moment, that *instantaneous* moment where her color changed yellow... we knew that God has bring her up to heaven. 

As written in 2 Timothy 4:7, the verse says, and I will say that it applies to Charlene. Charlene has fought a good fight, she has finished the race, she has kept the faith. 

As Charlene’s Daddy and Mummy, we will remember the meaning of *her* life. And we will continue to do God’s work, to glorify Him through whatever paths he has set for us. And we will remember three words; faith, hope and love. Faith in God’s sovereignty and power. Hope for our family’s reunion in heaven where Charlene will be made whole again. And Love, not just love for Charlene but love for everyone who has gone through difficult times and most importantly God’s unconditional love for us all. 

We love Charlene. God has passed the stewardship to us on 27 Oct 2009 and we have passed Charlene’s stewardship back to our heavenly Father on 14 May 2013. We thank God for all that He has given to us. 
May God also bless you greatly in your life.  Thank you. 

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I will end this post with this song... which I google on the evening of the last service, before I gave the eulogy speech. When mummy and I read the lyrics, we teared... because we know that we found the response (not answer, as only God knows the answer) to my question "What's is the meaning of life?"

You can never see through the eyes of man.
You must look at your life.... through heaven's eyes.

Through Heaven's Eyes 
(by Brian Stokes Mitchell in the Disney movie Prince of Egypt)

A single thread in a tapestry 
Though its color brightly shine 
Can never see its purpose 
In the pattern of the grand design 

And the stone that sits on the very top 
Of the mountain's mighty face 
Does it think it's more important 
Than the stones that form the base? 

So how can you see what your life is worth 
Or where your value lies? 
You can never see through the eyes of man 
You must look at your life 

Look at your life through heaven's eyes 
Lai-la-lai... 

A lake of gold in the desert sand 
Is less than a cool fresh spring 
And to one lost sheep, a shepherd boy 
Is greater than the richest king 
If a man lose ev'rything he owns 
Has he truly lost his worth? 
Or is it the beginning 
Of a new and brighter birth? 

So how do you measure the worth of a man 
In wealth or strength or size? 
In how much he gained or how much he gave? 
The answer will come 
The answer will come to him who tries 
To look at his life through heaven's eyes 

And that's why we share all we have with you 
Though there's little to be found 
When all you've got is nothing 
There's a lot to go around 

No life can escape being blown about 
By the winds of change and chance 
And though you never know all the steps 
You must learn to join the dance 
You must learn to join the dance 
Lai-la-lai... 

So how do you judge what a man is worth 
By what he builds or buys? 
You can never see with your eyes on earth 
Look through heaven's eyes 
Look at your life 
Look at your life 
Look at your life through heaven's eyes 

God speaks through His Word

Last night, I received an sms from my ex tuition boy's mum. She shared with us three verses Hebrew 12:2, Eph 2:10 and 2Cor12:9. As I was preparing to sleep, I did not went to check on the verses.

In the morning when I woke up, the DailyBible app verse of the day was 2Cor12:9.

But he (Jesus) said to me, "My grace is sufficient for you, for my power is made perfect in weakness". Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

And during the sermon, Pastor Tim shared Ephesians 2:10

For we are God' workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do". 

When I smsed my ex tuition boy's mum, she shared that God prompted her those two verses. God is so awesome.

Hebrew 12:2 was one of the verses I read during my Quiet Time last night before the sms. God confirmed it today when Rev Cecil who came to visit us also shared this verse.

Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

We know God is watching over us.

Eulogy for Charlene - transcript of first service (Dez)

I (dez) asked my brother to recorded the eulogy speech for the first night service. As we were too exhausted in the day, we didn't have time to write a proper speech. So I just prepared the points mentally, and gave an impromptu speech.

I watched the video and transcribed the speech. Looking at it now, it seems to be a bit more disjointed that I would like... but the speech did capture what I wanted to say.

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Charlene was born on a rainy night, 27 Oct 2009.

It was a very eventful night for me. Mummy's pregnancy was very smooth, there was no indication that Charlene was in a difficult condition. We went for a routine gynae check on that night, and the gynae sent us to the hospital for a “precautionary” monitoring. About 30 mins after reaching the hospital, the nurses wheeled mummy to the emergency ward for an emergency caesarian.

All our dreams of a normal baby just went poof on that night.

The next 2 days later, the doctor told us that Charlene has seizures. She was put under a lot of medications. We saw a lot of tubes and needles on Charlene. She was in ICU for about 4 months.

Mummy and I often wondered why this happened to Charlene and us. We think God has many reasons for creating Charlene in this manner.

I found God on 30 Oct 2009 where I was crying alone at night. But I felt God’s peace came over me. I was searching for God through other ways, through reading books, through talking to other Christians. But I never believe in God because the Holy Spirit has not touched me. But I know the Holy Spirit resided in me that night.

The next day I went to the hospital and told God in front of Charlene’s cot. “God, I felt your presence last night. I want you to become my Lord and Savior; not because I want Charlene to be healed but because I know you are a true and loving God. “

From that day onward, we know that Charlene’s life will be limited, but we know that God is with us. The doctors gave her very little chance of survival, and said that she will never be able to recognize her parents.

But Charlene continued to prove the doctors wrong time and again. For those who know Charlene, you will know that Charlene is a very pretty girl. When you call her pretty, she will smile and respond happily. When she throws a tantrum she will look for mummy. When she wants to sleep she will look for daddy, because daddy has a big cushion (tummy) so it’s good to sleep.

Through Charlene, God has opened up a lot of ways to meet new people. We came into YMM, our church and family. We meet a lot of parents with special needs children who have varied difficulties and needs.

Through Charlene, as Mummy has said, we understand what unconditional love. For normal kids, you will be thinking about which secondary school, whether poly or JC, which university. In our hearts we know that these things are difficult for Charlene, but that doesn’t stop us from loving us. And we know that this is how God loves us. God loves us so much that He sent his one and only son, Jesus Christ, to die for us.

This 3 ½ years is not easy as there a lot of things to learn and do to care for this kid. But God is faithful to us. God has given us a lot of blessings through other people. And we try to live life in a strong way, in a manner that God wants us to live. And that is to live life meaningfully.

One of the ways we live life meaningfully is to do God’s work. For Charlene, a 3 ½ year old baby who cannot talk, cannot crawl, cannot walk, she has done God’s work by touching a lot of people’s hearts. Many, many people love her. Thank God for all the love that You have showered her. We know that Charlene is in heaven with Jesus Christ as a little angel sitting beside Lord Jesus Christ. We know that Charlene is made perfect in Jesus Christ because the bible has written my grace is sufficient you for you are perfect in weakness. Charlene may be weak but she is made strong in the Holy Spirit. And she has run a good race. Daddy and mummy are very proud to be her parents.

We have sacrificed a lot for Charlene. We made a lot of changes in our life, but we thank God for giving Charlene to us. As mummy has said, this 3 ½ years is not a waste. Today will be the close of a chapter. Daddy and mummy will be strong in Jesus Christ. We will see what plans God has for us, and we will walk down the path He has set for us, with love, faith and hope.

Thank you all for taking time to send Charlene off for this last time. We hope that Charlene has blessed you as much as she has blessed us. 

Questions, Avoidance and the Road Ahead

Questions

"How are you?" "Are u ok?"

I have been asked this question many times in person, via phonecall, sms and whatapp since Charlene's passing. 

My standard answer is "Ya, ok"

Sometimes I will say "Thank God for His strength".

Indeed, God's grace has been sufficient for us. He has given us ample time to prepare ourselves that Charlene is going to heaven. While we never expected Charlene to pass away so soon and at the first time she caught pneumonia, a re-read of the blog posts of Charlene's first few months made me grateful for the 3.5 years that we have with her. 

Charlene was not even expected to survive (the senior doctor didn't think she can even breathe on her own without the ventilator in her first 2 months). And she survived 4 Code-Blue (hospital lingo for resuscitation) in her first 3.5 months. In total, she survived 9 Code-Blue in her 3.5 years. 

In these 3.5 years, we have seen her open her eyes, suck a pacifier, cry, smile, sit, roll, raise her head, respond to praises and scolding, raise her hand to say hi, swallow coca cola happily and sour things with a cringed look, kick herself down her pram, look around on bus, get upset on mrt and shopping mall and restaurant, listen attentively to worship songs and sleep the moment sermon starts etc etc...

I am grateful for the memories. 

So, "Am I ok?" 

Yes and No.

Yes because I am assured that Charlene is smiling and running in heaven. 

No because I still miss her and think of her. The worst is I don't get to hold her in my arms anymore. Won't get to hold her little hand, kiss her forehead, sit her, roll her, play with her, mess up her hair. 

Avoidance

Some friends think that by packing up Charlene's stuff and putting them away, I will not be reminded of her. I don't think avoidance is the best strategy here (By the way, I am super pro in using avoidance tactic in my life to avoid conflicts with elders). Even if I put all her things away, she is still in my memories. A bus ride, a mrt ride will remind me of her. And please don't tell me to forget it and move on. I do not intend to forget Charlene. I will remember how hard she tries in her life despite all her physical constraints and despite not being accepted by some people as she doesn't meet her developmental milestones. 

On Thursday, I prayed very hard and mustered a lot of courage to step in to NUH to visit my friend's son. The hospitals (NUH & KKH) will definitely remind me of Charlene because of all the visits we spent there and both places where she suffered a lot after her birth and before her death. I should never have to step into these places ever again (if we don't have kids). But I was determined to quickly get over my fear of the hospitals. Because if I am going to be of help to parents of special needs children, hospital is the place I will visit very often. I am glad I went to visit Issac. His happy smiles brought much comfort to me. No wonder Charlene loved him the most. 

I even went to the MacDonald house and left my contact for the parents whose daughter is still in Bed 4 of PICU. I wanted to help connect them to other parents who may have children of similar condition to their girl; trisomy 21. 

I think the most difficult place for me to step into ever again is Rainbow School. Charlene achieved so much there and was so happy. I cannot imagine the memories that will come flooding back into my mind. Seeing her teachers, her classroom, her classmate will probably cause me to breakdown and cry. I don't know how long it will take for me to be ready to step into rainbow again.

Road Ahead

I am still on leave and waiting for a reply from HQ regarding when my leave will end. I will probably try half load first to readjust myself back to work. 

We are also considering a vacation, still deciding on the destination. 

With regards to having the next child, we are not closed to the idea. But there will be a lot involved. Charlene was not given a diagnosis. Doctors do not know what went wrong. We have to ensure we are in good health and have to go for genetic testing. The uncertainty and fear involved others will never understand. 

I have got insensitive remarks during the wake asking us to have more children. Saying God will bless us with clever and healthy children. Even if we do have kids, they can never replace Charlene. All kids are unique and special in their parents' heart. 

Charlene is so special and only those who have come alongside this journey with us will grieve for her and miss her very much like us. And Charlene knows who genuinely care for her. Thank you for loving her. 

Life without Charlene (Dez)

Dez and mummy are trying to adjust to life without Charlene.

We are conscientiously reading the Bible and doing our quiet time. It is important to be rooted in the Word, because it will help guard our mind and heart.

We also spent a lot of time chatting about our emotions and thoughts. The open sharing becomes a release valve. We thank God that we can support each other. The 2 of us have complementary views about issues, and our sharing helps us to have a more holistic perspective.

I also managed to read some books. Completed 2 books within these few days. It feels great to be reading books instead of playing games, as I feel my mind being broaden by reading. I feel more productive reading books than playing games.

90 Minutes in Heaven
The first book which I have completed is titled "90 minutes in Heaven" written by Don Piper. The book was lent to us by morning Deborah (we resorted to differentiating between the 2 Deborah by morning and evening, LOL).

Don Piper is a pastor who was involved in a horrific vehicular accident. His pulse stopped for 90 minutes, during which he went to heaven. The paramedics pronounced him dead when they arrived on scene, and focused on clearing the debris to facilitate the traffic flow. Another pastor who arrived on the scene later was prompted by the Holy Spirit to pray for this supposedly dead man. Don Piper came back to life after the prayers, but just barely. The remaining chapter then details on his grueling painful recovery.

Some people may be attracted to his glimpses of heaven. But for me, that was not the part of the story that interests me. The part of the story that interests me the most was the recovery process.

The painful recovery process is a testament to his faith and his reliance on God's strength. Imagine being in pain every single moment for 1 year.  He was in so much pain that no amount of analgesic was able to relieve the pain; he was never able to fall asleep but was knocked out from the pain.

Throughout the recovery process, he often questioned God "Why bring me back?". It took him a long time before he understood God's purpose.

I think it will take us some time to understand God's purpose for Charlene and us. But we already are beginning to have some understanding of God's will for Charlene and us.

A Grief Observed
The second book which I have finished is written by C.S Lewis titled "A Grief Observed". The book is actually a collection of his own journal after the death of his beloved wife. In the book, you can see him searching for the meaning of his wife's death, questioning the nature of God, getting angry with God and eventually coming to terms with the wife's death.

C.S. Lewis, even in such difficult time, still remain sharp and critical in his thinking. He was also able to concisely express his grief and pain through his description.

Some of his words resonate with me:

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With regards to grief and love:
"...bereavement is a universal and integral part of our experience of love. It follows marriage as normally as marriage follows courtship or as autumn follows summer. It is not a truncation of the process but one of its phases; not the interruption of the dance, but the next figure. We are 'taken out of ourselves' by the loved one while she is here. Then comes the tragic figure of the dance in which we must learn to be still taken out of ourselves though the bodily presence is withdrawn, to love the very Her, and not fall back to loving our past, or our memory, or our sorrow, or our relief from sorrow, or our own love."

"For, as I have discovered, passionate grief does not link us with the dead but cuts us from them... I will turn to her as often as possible in gladness. I will even salute her with a laugh. The less I mourn her the nearer I seem to her."

- Everyone dies. Some die earlier than others.

But not everyone loves or was loved. To have been given the opportunity to love Charlene is something me and mummy cherished.

I will endure the grief, because the grief is part of our love for her.

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With regards to God being silent to his pleas of grief:
"But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence. You may as well turn away... Why is He so present a commander in our time of prosperity and so very absent a help in time of trouble?"

"I have gradually been coming to feel that the door is no longer shut and bolted. Was it my own frantic need that slammed it in my face? The time when there is nothing at all in your soul except a cry for help may just be the time when God can't give it; you are like the drowning man who can't be helped because he clutches and grabs. Perhaps your own reiterated cries deafen you to the voice that you hoped to hear. On the other hand, 'Knock and it shall be opened.' But does knocking means hammering and kicking the door like a maniac? And there's also 'To him that hath shall be given.' After all, you must have a capacity to receive, or even omnipotence can't give. Perhaps your own passion temporarily destroys the capacity.'

- C.S. Lewis, the great apologetic, questioning the nature of God. And though he eventually finds his own answers, his original doubts over God is no less real. In fact, many have turned away from God after God 'appears' to be silent over their pleas.

If the great apologetic doubts God in his darkest moment, what more us layperson? Me and mummy have questioned God many times, like Job in the Bible.

It's beyond the scope of this post to discuss the reasons for our faith, but suffice to say that we have experienced God's presence and grace before, we know in our hearts and minds that He is a loving God.

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With regards to death and God's nature:
" 'It was too perfect to last,' so I am tempted to say of our marriage... But it could also mean 'This had reached its proper perfection. This had become what it had in it to be. Therefore of course it would not be prolonged.' As if God said, 'Good; you have mastered that exercise. I am very pleased with it. And now you are ready to go on to the next.' When you have learned to do quadratics and enjoys doing them you will not set them much longer. The teacher moves you on."

- This is such an amazing way of looking at God's nature. In the past few days, we wonder why God planned for Charlene's passing away to happen now. We don't have His answer, but we sensed that Charlene's life and our lives and others (whom Charlene has touched) have reached "its proper perfection".  Maybe that's why Charlene returned to the Lord, as her mission on earth has been accomplished.

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With regards to grief and recovery:
"...summoned into me a past of happiness, my pre-H (referring to his wife) happiness. But the invitation seemed to me horrible... It frightens me to think that a mere going back should even be possible. For this fate would seem to be the worst of all, to reach a state in which my years of love and marriage should appear in retrospect a charming episode -- like a holiday -- that had briefly interrupted my interminable life and returned me to normal, unchanged. And then it would come to seem unreal -- something so foreign to the usual texture of my history that I could almost believe it had happened to someone else. Thus H. would die to me a second time, a worse bereavement than the first. Anything but that. (emphasis added)"

- This is my greatest fear for myself. That I will forget Charlene and revert back to my old life. Recovery from grief should not be about forgetting the person who passed away. For those friends and loved ones who asked us to distract ourselves with activities, know that this is not the best remedy.

I won't want to forget Charlene and what she has taught me in my life.

I glad that the Holy Spirit prompted me and mummy to start journaling down Charlene's life in the first weeks of her life. Most people would avoid talking about their experience when their first child was borne with such terrible congenital medical condition. I do not know why we overcome our resistance and chose to journal down our thoughts (when the 2 of us have no habit of writing a personal journal!) and to share with everyone; I can only attribute to the Holy Spirit prompting.

Blessed Charlene and us

Charlene and us have been very, very blessed.

When she was first born, Dez and I were badly shaken by her congenital condition. But we were blessed to have someone meeting us to share his personal story, and giving us hope and encouraging us. (read post 4 Nov 2009). Our friend also sent prayer requests to three churches in Singapore to pray for Charlene.

United in Prayer

- This time, our whole church prayed for Charlene fervently. Two sisters from the Chinese congregation later shared that the church was united as one through praying for Charlene.

- Many people whom we knew through the special-needs children support group were praying for Charlene too. St John St Mary (SJSM) church also prayed for Charlene.

- Our family, relatives, friends, colleagues and Charlene's teachers were also praying for us.

- During those weeks at the hospital, so many visited Charlene and brought with them prayers, food, drinks, car rides and company. There were also strangers whom God has sent to pray for Charlene in the ward;  2 different Deborah, Reverend Cecil, Prophet Russell and a taxi driver called Peter.

6th Degree of Separation

I once joked that half of Singapore praying for Charlene. After the funeral and talking to our brothers and sisters in Christ, I think my joke may turn out true.
- Our church friend met a client and explained that he could only meet her in the morning because he had to visit a 4 yr old friend in NUH and the client asked "Is it Charlene?"
- Our university friend told a friend she is going to NUH to pray for a 4-yr old kid and her friend asked "Is it Charlene?"
- A mum of a special needs child was sharing Charlene's story to an ex Rainbow teacher who came to visit and the teacher asked her "Is it Charlene?"

You Never Let Go

Prayers and care and concern from fellow brothers and sisters in Christ supported us and provided us with strength. We knew we were not alone. We knew God sent them to bless us and help us. We knew God never let go of our hands through the calm and through the storms.

We thank God for all the prayer warriors who have prayed fervently for Charlene throughout these weeks.
Though the end result may not be what we have prayed for, we believe that our God is a good God and our God is a sovereign God.

We don't know God's plans. While we don't know, God is already working His purpose in all of us. Reverend Erick shared how he didn't know he could pray so hard and so passionately. Perhaps, many of us through praying for Charlene has drawn closer to God and have our prayer lives transformed.

God loves us while we were still sinners.When God gave His one and only son Jesus for us, He gave us a choice to believe or not. We must remember God's unconditional love for us. And we love God because of His unconditional love for us not because he can answer any of our prayers. God is not our genie whom we turned to for our own wishes.

The Bible says in 1 John 5:14
...if we ask anything according to His will, He hears us. (emphasis added)

Charlene's purpose and mission on Earth has completed. And our loving Father has decided to give her heavenly reward. We have been reassured many times that she is running and smiling happily in heaven. It is of great comfort to know that she is completely restored and filled with joy in the presence of our Lord Jesus. And we know we will meet again.

So long Charlene. Be a happy angel.

Charlene and school (Dez version)

It's me, Charlene's daddy.

Charlene's mummy remembered so many happy memories of Charlene in school.

Typically after work, mummy will excitedly recount what Charlene did in school. That becomes the way I connect to Charlene's lives... through Mummy's stories.

Somewhere along the line, the teachers started doing updates in the comms book. And they added photos into the comms book, showing the parents what their kids did in school. I think its a great initiative because for parents who can't accompany their kids to go to school, the comms book becomes the only avenue for the parents to connect with the kids' lives.

For me, I'm blessed that I have mummy telling me all the stories, because as those who know her, you will know that mummy is a very animated story teller!

To Rainbow school teachers, I truly respect them for the choice of their career. We know the pay isn't high and the career prospects are poor.... but to see them putting in so much love for the kids who normal society  dismiss... it's comforting to the parents.

There is a saying that goes "The measure of a civilization is how it treat its weakest members". There are many variations of it, and the one which I like best is:-

The test of the morality of a society is what it does for its children.  ~Dietrich Bonhoeffer

Surely, the greatest test will be what the society does for its disabled and special needs children. While I am disenchanted with some of the responses we get from people about our special needs kids, the loving actions of the Rainbow school teachers fills me with a glimmer of hope.

Charlene and school

When Charlene was 8 months old, she was admitted in the hospital and there another parent told me about sending her to special needs school. When I asked Dr Simon about it, he immediately did the paperwork and the social worker called in no time. While we were told that we could wait up to 6 months for a place (and to prepare for at least 12 mths wait), Charlene got in to the Early Intervention Programme at Rainbow School Yishun within 3 months at the age of 11 months.  

With regards to this matter, Charlene has been very blessed as well. If her doctor hasn't been Dr Simon, she might not even have gone to school. I have heard about how other doctor who doesn't believe that children of her condition should go to school (because they think it is pointless) and dragged on for months with the paperwork. 

Charlene loved school. She would smile happily or cheekily at her teachers during song time. And she used to love the spider so much that she always chooses it. 

Charlene is a clean girl. She doesn't like it when her hands get dirty while playing with ice-cream or clay. She also doesn't quite like art and craft but she will be cooperative in completing it. 

Charlene loved the slide. Teacher and I will say "1,2" and Charlene will respond with a sound before we slide her down. At the bottom of the slide, we will ask Charlene if she wants more slides and Charlene will respond by making a sound. 

Charlene disliked the ball pool most of the time. She knew that she could not anyhow move or she will start to sink. That probably frightened her and most of the time she ended up crying loudly so that I will carry her out of the pool.  

Charlene loved the flashing lights in the multi-sensory room and disliked "picking diamonds" in the rough and pricky area. 

Charlene disliked therapy. Despite that, she still does what the therapist wants her to do though sometimes with whining and crying. I am very thankful for the music therapy that Charlene had because it made her so happy and motivated her further in completing her physio goals. 

 

Charlene's teachers believe in her. They love Charlene and are very patient with her. They believe in her potential and stretches her to her maximum. For that I am truly grateful.

Thank you Teacher Adeline for believing in Charlene and always encouraging her. 

Thank you Teacher Ivane and Teacher Ai Lin for loving Charlene and praying for her.

Thank you Teacher Jacqueline for the music that brightens Charlene's life.

Thank you Teacher Melody, Teacher Johnson, Teacher Kartheek, Teacher Jeff for developing Charlene. 

For a child with so much disability, I am truly grateful to all the teachers who believe in Charlene and help her to achieve her potential and beyond. Charlene knows that you love and care for her. That's why she is trying so hard. 

Thank you for seeing Charlene for the last time in the hospital. It meant a lot to her. Our strong little beauty is such a fighter that even in those circumstances, she can still force a smile for her favourite teacher Ivane. It was the last time we see her cheeky smile. 

I don't know how long it will take for me to have the courage to step in to school again. But the teachers in school have given a lot to Charlene and if it is possible, I would also like to contribute my part to help the school. 

Thank you very much for being a large part of Charlene's life! 

I have a lot to say... give me time.

It's me, Dez.

I have a lot to say. Or rather, I have a lot to type, to record down my thoughts and feelings.

Those who knows me will know that I'm the philosophical type. Those who were at the two funeral service would have heard some of my thoughts and feelings.

I know that human memories are fragile. That was the key reason why me and my wife started journaling about Charlene's life as early as within a week of her birth. Eventually that journal was changed to this blog, strong-little-beauty.

It helps us to keep our perspective. It helps us to remind about our struggles, Charlene's struggles. It helps us to count our blessings from God.

I don't know how many people read the blog. But I thank those who has read and is reading the blog about Charlene. I do hope that our blog has help in God's work in ways we cannot imagine. 

Me and my wife still have much to say about Charlene's life. In this few days, we have tried to make sense of it all. 

I intend to put up the two eulogy speeches that I have given for the 2 service.

So give me and wife some time. We will continue sharing.... much like the two poems I have extracted and posted in the previous 2 posts.

What Do You Say? (poem written for The Child Bereavement Trust)

What Do You Say?

(written by Kathy Mayo for The Child Bereavement Trust)

What do you say when a baby dies and someone says..."At least you didn't bring it home..."

What do you say when a baby is stillborn and someone says..."At least it never lived."

What do you say when a mother of three says..."Think of all the time you'll have."

What do you say when so many say...

"You can always have another..."

"At least you never knew it..."

"You have your whole life ahead of you..."

"You have an angel in heaven..."

What do you say when someone says...nothing?

What do you say when someone says..."I'm sorry."

You say, with grateful tears and a warm embrace, "Thank You!"

What Will I Say? (A poem from a nurse)

What Will I Say? 

(by Linda Sawley in UK Nursing Times, 1988)

I won't say I know how you feel - because I don't.
I've lost parents, grandparents, aunts and uncles, friends. But I've never lost a child. I came close, once. I had a miscarriage, but it's not the same. So how can I say I know how you feel?

I won't say you'll get over it - because you won't.
Life will have to go on. The washing, the ironing, the cooking, the cleaning, the common round. These chores will take your mind off your loved one, but the hurt will still be there. A small corner of your heart will grieve forever. Life carries on, but it will never be quite the same.

I won't say "Never mind, your other children will be a comfort to you" - because they may not be.
Many mothers I've talked to say that they easily lose their temper with their remaining children. Some even feel resentful that they're alive and healthy, when the other child is not. Children can be cruel too. They may not understand death.

I won't say "Never mind, you're young enough to have another baby" - because that won't help.
A new baby cannot replace the one you've lost. A new baby will fill your hours, keep you busy, and give you sleepless nights. But it will not be the one you've lost. And you mustn't try to pretend it will.

You may hear all these and other platitudes from your friends and relatives. They think they are helping. They don't know what else to say. You will find out who are your true friends at this time. Many will avoid you because they can't face you. They'll cross the road to avoid talking to you. Others will make the effort to talk to you. They'll talk about the weather, the holidays, the school concert, but never about your child - never about you and how you are coping.

So what will I say?
I will say I'm here. I care. Any time. Anywhere.

I'll cry with you if need be.
I'll talk about your loved one.
I won't mind how long you grieve.
I won't tell you to pull yourself together.
I'll sit with you during birthdays and anniversaries.

No, I don't know how you feel - but with sharing perhaps I will learn a little of what you are going through. And perhaps you will feel comfortable with me, and find your burden has eased.

Try me.

Charlene is running and smiling in heaven

15 May 2014

Rebecca, a mum who has two special needs children, told me during the wake that she dreamt of Charlene. In the dream, Charlene is running and smiling at her. She motioned for Charlene to run towards her and told Charlene to go find Shannon jiejie (her older daughter who passed away two years ago) to play and also to tell Shannon jiejie that her mummy miss her very much.

16 May 2014

My university friend Sandra who was not close to Charlene and has only seen her three times in 3.5 years smsed me this morning. She said that she was going to brush her teeth at 245am when an image of Charlene suddenly flashed past her. She saw Charlene running around laughing, just like any other kid. Charlene ran past her, stopped and smiled at her (with eyes closed), then continued running around. It suddenly occurred to Sandra that God has promised all of us a new glorified body, totally flawless when we meet Him. She encouraged me to be very strong and have faith that Charlene's in His good hands.

17 May 2014

Phemie told me that she saw Charlene running and smiling at her.

God is good. Through different people, God tells us the same thing. That Charlene is in heaven with Him. The fact that she can run is a testament that she is completely restored in heaven. We await the day that our family is reunited in heaven again.

God's reassurance

15 May 2014

A reverend who has been praying for Charlene called me from KL this morning. He said that he called me at least 10 times yesterday. He said that while praying for Charlene yesterday morning, God gave him a revelation that HE will bring Charlene home.

This reassured me that our decision was in line with God's will.

16 May 2014

Our church Reverend Ngiam came specially to the wake despite that she was still recovering from surgery. Reverend Ngiam revealed that she felt the prompting from the Lord that He was going to bring Charlene's home last week during a meeting in church. She didn't know how to break the news to us. When she suddenly had to go for the surgery, Pastor Cynthia felt that she has to tell us somehow. That was why Pastor Cynthia hinted to us to tell Charlene to go with the Lord if she is tired.

Guilt

I have peace and the reassurance from God with regards to our decision in the hospital.

As the main caregiver and as Charlene's mummy, I can't help but think that "If only I have done xxx...", and the sense of guilt will overcome me.

Guilty over sitting on her reflux problem and not managing it earlier.

Guilty over taking away potassium bromide and causing Charlene to cry so much in the last few months of her life.

However, the God we believe in is a mighty and sovereign God. My carelessness and wrong decisions cannot take Charlene away if it is not in accordance to His plan and His time.

Of course I am sure during days when I feel down, I might start asking God why. Why now? Charlene has improved so much in her muscle control...she can swallow better and sit up by herself and hold her head up.... her crying is starting to be reduced.... we have just employ a helper to give us more manpower.

There is no point in asking why. We believe that God is good. We believe that He knows what He is doing. One day, when the whole puzzle is completed then we will understand.

Thoughts and encounters during the funeral

Dez and I are going to record down our thoughts and stories we shared with the people who came to the funeral.

Give us some time to consolidate our thoughts.

14 May 2013 - Peace that transcends understanding

After a difficult night of sleep, Daddy and I took over from the helper in the morning.

At 7am, Charlene heart rate and oxygen saturation dropped slowly, prompting the nurses to do a suction. During that time, Charlene had another desat and the doctors rushed in to perform another CPR. While we were waiting outside anxiously, a doctor told us that Charlene is experiencing pneumothorax, air leaks in the lungs caused by accumulated pressure due to the high settings of the high frequency oscillatory ventilator. To save Charlene, the doctors had to puncture a hole in her right chest with a tube, to release the air pressure.

When we entered the room to see the inserted tube and the blood stains... we felt a sharp stab of pain in our hearts.

Daddy called Pastor Cynthia to come down immediately.

When Pastor Cynthia arrived at 9am, we went to the empty PICU library and updated her about the 2 events that happened last night and this morning. Daddy questioned why Pastor Cynthia asked us to tell Charlene that it's ok to follow Jesus Christ, when everyone else who visited Charlene seems to be only praying for Charlene's recovery.

Pastor Cynthia explained that she was prompted by God to said that to us. She reminded us about God's plans and God's timing, and that we should submit to God's sovereignty. She asked us about our thoughts and emotions. Dez felt that we should make Charlene as comfortable as possible and not cause her to suffer further as she is really tired.

I was very concerned that I might feel guilty about giving up on Charlene. Pastor asked us to pray and surrender Charlene and the whole situation into God's hands. We prayed and we cried. During my prayer to God, I felt peace in my heart. Genuine peace.

After our prayers (1030+am), the consultant called us (since she didn't know we were in the library) and requested to speak to us. She informed us that Charlene had another desat while we were away. She emphasised that we were "delaying the inevitable", and said that at the rate of Charlene's deterioration, there is a high chance she could just die in the midst of the next CPR. She told us that the hospital can make arrangements to make Charlene as comfortable as possible.

Dez asked the consultant what we can do to make her comfortable. That include stopping all blood taking, suctions and other procedures. The consultant also suggested that we switched Charlene to a normal ventilator, so that we could carry her in our arms.

We agreed.

The consultant told us that the switch should be done after everyone has said goodbyes to Charlene. We requested to wait for Charlene's favourite doctor, Dr Natalie, before the switch. We had informed Dr Natalie immediately after our prayers because we know that Charlene would love to see Dr Natalie. Dr Nat told us that she had make arrangements in her work to come down as early as possible (3pm).

When Dr Natalie arrived, she commented that Charlene has grown into a beautiful young lady. Charlene acknowledged Dr Nat's presence by flickering her eyelids. Dr Nat reassured us that we have done all that we could for Charlene, and Charlene knows how much we love her. Dr Nat prayed for Jesus to guide Charlene to heaven and that we will see Charlene again in heaven; a restored Charlene which God has always seen her. Dr Nat left the ward with a kiss to Charlene's forehead.

At 430pm, Charlene was switched to a normal ventilator. The consultant and nurses transferred Charlene into Daddy's arms. We requested that the curtains be drawn and that we be left alone for family time.

Charlene was obviously happy at being carried; her heart rate fell to a more acceptable range and her oxygen level actually went up! She was comfortable and her stats were holding up well. We sang Charlene's favorite songs and we reassured Charlene not to worry about us. We recounted the happy events that we had shared with Charlene.

We felt so peaceful in the room. Daddy commented that he felt like he was at home, with Charlene's favorite music playing softly in the background. I had taken off my jacket because i wanted to carry Charlene and let her feel my presence. I didn't have to put on my jacket again because the room was warm... never before in Charlene's 3 weeks of ICU had i felt so much warmth in the room.

Dez and I know that God's spirit was with us. We had committed Charlene to God. Both of us knew that God has the power to save Charlene there and then; we will rejoice if that is His plan. Both of us also knew that if God's plan is to take Charlene back to heaven, we will rejoice too because His peace was with us in that room. When we saw that the nitrate oxide crept up from 10 to 30 (a higher number indicating a faster consumption rate), both of us knew that it would cost us a lot of money. But the peace in Christ was so strong, that we didn't worry about the medical bill... cos we know that He will provide for us.

Three hours later, the consultant came in with a perplexed look. She said tactfully that she didn't expect this to happen and that Charlene continues to be a mystery for the medical team. (we found out from Pastor that the consultant had originally predicted Charlene would only survive for 10 - 15 mins after the switch of ventilator).

Me and Dez took turns to carry Charlene, singing to her, talking to her, telling her how much we love her and how much we are blessed by her in our life. We saw her stats slowly, slowly dropping.... her oxygen saturation dropped from 90, 80, 70, 60, 50, 40, 30. We had seen Charlene with an oxygen saturation of 70 and below; her lips always turn bluish and her face will turn pale. Not this time. Her face continues to be pink with a radiant glow, even at an oxygen saturation of 30+. Charlene was also breathing normally with no struggle. She took about 2 breaths every second... no gasping for air.

We had to get the nurse to help change her diaper once. We know that Charlene is a clean girl and she wants to be clean before going back to the Lord.

At 2333, we saw Charlene's face color changing instantaneously from pink to yellow. The change was so abrupt that it was impossible to miss. We know in our hearts that Jesus Christ has brought Charlene to heaven. Jesus Christ was the one sustaining her throughout the 7+ hours of our peaceful family time.

Charlene left so peacefully. We know that she's in a better place.

13 May 2013 - Tiredness

I came in to PICU at 6am and found a lot of people in the waiting area. Then I saw the parents of room 11 crying outside his room. The nurse told me he has gone and they were waiting for the porters to come and take him to the mortuary. I was so sad. I wondered if the parents got to talk to him for the last time.

The consultant in charge of PICU for the week told me that Charlene is not improving as she is still on very high machine settings and also the nitrate oxide. Worse still, Charlene has developed complications; thrombosis (blood clotting) at the areas where the previous central lines were inserted. She said that we are prolonging the inevitable and there is very little chance Charlene will survive. She advised us to consider letting Charlene go peacefully and not to attempt to doing CPR for resuscitation.

I was devastated and was upset with the consultant. I cried and told her that as parents we won't want to give in, that we know Charlene has always been very slow but strong and we should give her more time to recover.

I also said that we don't want to play God. The consultant responded "what makes you think that we are not playing God by continuing to resuscitate her?".  I was speechless and couldn't find a reply.

I called Dez in the afternoon at 3pm and told him about what the consultant told me. Dez was visibly affected and wanted to come to the hospital immediately. But because of his work commitment, he could not come down immediately.

In the evening, Daddy came to visit Charlene after work. I went to the toilet and Daddy was with Charlene alone in the room. When I returned, I was shocked to see Charlene's heart rate at 68 and Daddy standing there not doing anything. Before I could react, the doctors and nurses dashed in and the doctors came in to perform CPR. Contrary to their normal practice, the consultant instructed us to stay in the room.

A male doctor jumped on the bed and performed chest compressions on Charlene little body. The alarms were ringing, the consultant ordered for emergency drugs and the nurses dashed in and out to administered the drugs. It was a chaotic sight.

After they managed to resuscitate Charlene, the consultant asked the nurse if there was any trigger for the event as Charlene's stats (oxygen saturation and heart rate) has remained relatively stable through the day. And the nurse said no.

The consultant also asked me and Daddy whether anything happened prior to the desat. I said no while Daddy kept quiet and appeared to be in a daze mood.

After things settled down, Dez motioned me to follow him. He walked out of Charlene's ward into the empty PICU library. After we sat down, Dez broke down and cried, all the while apologising for a "lack of courage" to tell me and the consultant what actually happened.

Dez recounted that when he was alone with Charlene in the ward, he was reminded of Pastor Cynthia's words about telling Charlene that "it's ok for her to follow Jesus Christ". So Dez told Charlene that "If you are tired, you can follow Jesus Christ. You can recognise Jesus as He is the Person who gives you calm and peace. Daddy and Mummy are proud of you. Don't worry about Daddy and Mummy, you can follow Jesus Christ."

After Dez said those words, Charlene's stats steadily dropped. The heart-rate dropped from 150, 140, 130.... Dez sensed that our strong little girl is really tired, but she is clinging on for our sake. That was why when the stats dropped to the critical level (heart rate of 100 and below), Dez didn't notifiy the nurses nor the doctors.

I couldn't control my tears because I could not bear to let Charlene go. But I also knew in my heart that Charlene is tired. I was reminded of Pastor Cynthia and I suggested that we get her to pray for us, so that we know God's will for us and Charlene. Daddy wanted to call Pastor to come pray for us immediately. But I told him to wait till tomorrow and don't disturb Pastor at such a late time.

12 May 2013 - the passing away of a boy...

Daddy and I went back to PICU after dinner and discovered that both the on-call doctors as well as some nurses were in room 11. We remained outside of Charlene's ward as the nurses were suctioning Charlene. Then we watched drama unfold in front of us. One nurse frantically ran out of the room asking for help. She frantically pushed the emergency trolley in while other nurses started preparing the emergency drugs and making phone calls. And while the minutes tickled away, the nurses were running in and out of the room. More and more doctors rushed into PICU; most of them were wearing home clothes and it was obvious that they rushed back to the hospital from somewhere else.

During that time I went to the toilet and saw CPR being done when I walked past. When I returned, I saw a heap of blood stained tissue papers? on the floor. And then a whole team of doctors came in and began an emergency operation. Though we do not know this boy at all, it was traumatizing to watch it. I was so affected that I had difficulty sleeping...

Charlene went to heaven with Jesus Christ

Charlene went to heaven with Lord Jesus Christ. Our strong little beauty has ran the race well. We are so proud of her. And we know we will see her again in heaven...

We will update our thoughts after the funeral.

10 May 2013

Charlene was looking good in the day. Her oxygen saturation was above 90 throughout the day. As I was with church friends and my brother, I didn't have a chance to say good night to Charlene when the nurses started suctioning her. Wanting to say goodnight to her, I waited outside. An hour and a half gone by and I felt that something wasn't right. Looking from outside, I realised that there were no doctors, very few nurses at the counter and the emergency trolley was not in sight. I went in and saw from the computer screen that Charlene's heart rate is 190.

The doctor came out shortly and said that her oxygen saturation then her heart rate went down rapidly. They did cpr on her for 2-3 mins to resuscitate her. This is the 7th time Charlene survived cpr. I was shocked because her condition was relatively stable in the day.

We do not despair because our hope is in God. Even though we don't know and don't understand His plan for Charlene, we can only have faith in Him. We will continue to pray for God's healing to be upon Charlene.

9 May 2013

Charlene also looked bad (bluish lips) last night and that didn't improve in the morning. Her oxygen saturation was bad at around 70+. The doctor is really concerned as they have yet to find the source of infection. It seems like she caught another infection and it is affecting her lungs again. They increased the settings of the oxygen machine and put back some of the medications. They also re-started the nitric oxide which was very effective in helping her. Charlene's oxygen saturation immediately jumped to 95, prompting the nurse to say "So, U like the expensive gas!"

The doctor said that all the good work and progress has been undone and she is very ill. Her condition is back to the very initial stage when she first came in to ICU. Charlene is already on maximum support. There is not much that the doctors can do for her if her condition worsens.

1-8 May 2013

1-3 May 2013

Charlene seems quite stable. We managed in taking nitric oxide off her and also a couple of medicine off, leaving her with minimal amount of medicine. Also, the mean pressure and the oxygen support on the powerful oxygen machine (high frequency oscillatory ventilator) has been reduced quite a bit. The mean pressure from 34 to 25 and the oxygen support from 100 to 50. Her chest x ray also showed improvement.

But something's not quite right. Her white blood cell count is high indicating that there is infection somewhere. 

4-8 May 2013

Charlene started having fever on Sunday and her white blood count remains high. And meanwhile, the weekend doctors were unable to reduce the settings of the oxygen machine further, leaving them concerned. However, investigations of blood, urine and stool samples found no results. Ultrasounds of liver, kidneys, gut and heart went well. We thank God that her major organs are functioning well.