Missing Charlene

I am sure everyone knows how it feels to miss someone, be it a loved one who has passed on or that someone whom we have broken up with.

This feeling of missing will be more intense on some days than others. As I haven't had much appointments this past week, a lot of time was spent at home. And indeed, my friends have the right to worry about me staying too long at home as the things in the house will remind me of Charlene.

I wake up in the morning and see the empty cot - reminds me of Charlene sleeping face.
I see the sterilizer - reminds me of making milk, the first thing I used to do every morning .
I see the blender - reminds me of the fruit juice I blend for Charlene.
I see the slow cooker - reminds me of the porridge that I made for Charlene.
I see the family photograph - reminds me of the times that Charlene smile happily.
I see the baby carrier - reminds me of the times I carry Charlene to school.
I see the stroller - reminds me of Charlene sliding and kicking her way down.
I see the mirror - reminds me of Charlene smiling whenever I ask her "Who is the prettiest of them all?"
I see the sofa - reminds me of sitting with Charlene to play toys or when friends come to visit.
I see my bed - reminds me of Charlene sleeping in prone.
I see the gym mat - reminds me of the rolling and exercises I did with her.
I see her music toys - reminds me of her smile and reactions when she hears the sounds.

But it is not just the things in the house that will remind me of Charlene. I missed her so badly that even when I am out, other things keep reminding me of her.

I board the bus - reminds me of how I carry her up the bus and her different reactions.
I board the mrt - reminds me of the few times Charlene was on the MRT.
I see dragonfruit and kiwi - reminds me of the fruits I always feed her.
I go past shops selling baby stuff - reminds me that I can no longer buy her things
I go to church - reminds me of how she smile happily during worship
I go to cell group - reminds me of where she lies on the sofa
I come back home - reminds me that I can no longer call out "Charlene, Mummy is back!"

There are so many things I can no longer say.
"Charlene is the prettiest", "Charlene is the cleverest", "Charlene is the cutest"
"Charlene is a good girl", "Jesus loves Charlene", "Daddy, Mummy loves Charlene"
"Good afternoon", "Is your name Charlene?", "Do you want to play with drum?", "Cmon Charlene, roll here", "Lift up your head, Charlene"
"Smile Charlene", "Wait a while, Mummy making milk", "Daddy is back", "Mummy go teach Joshua kor kor tuition, come back later", "Good night, Charlene" ......................

There are so many things I can no longer do.
I can no longer carry Charlene. No longer mess up her hair. No longer grab her little hands. No longer kiss her forehead. No longer smell her. No longer teach her to kick. No longer wear clothes for her. No longer change diapers for her.

I now fully understand what it means to miss someone.

Tragedy, Despair... and Hope (Dez)

After Charlene was born, I (Dez) became more sensitive to tragedy news. Maybe because I become more empathetic, so tragedy news often hit me harder and leave me with deeper impression. Hence I can remember the details of the news better.

Tragedy
One tragedy was about a groom who fell to his death due to a freak accident after his wedding banquet. The bride was inside the hotel room, presumably bathing when the groom went out to the stairways to take a smoke. Unable to get in through the same door as it was a 1-way door, he went up and down the stairs, trying to find a way out... and due to a series of events, ended up on a rooftop, and fell to his death.

I can't imagine the amount of pain and guilt the bride would have. For Charlene, even when the doctors told us that its likely not our fault, we still blame ourselves sometimes for her condition and her passing away. The bride must have wondered whether she could have prevented the terrible accident.

The bride jumped to her death 8 months later. Previous reports have noted that she would go to the temple to pray in front of the groom niche every day for a few months.

Despair
Another recent tragedy was the case of a single mother pushing her son down to his death. I gathered from various sources that 1) the mum is unemployed and taking care of the son full-time, 2) the family sole-breadwinner is the grandmother with a family income of around $1000 3) the son has liver problems and is studying in a special school 4) though the son is aged 9, his cognitive age is about 4.

A nearby shopkeeper said that the mum would always buy sweets and ice-cream for the son to eat; he never expected such things to happen.

I was under the impression that the mum was crying "I killed him" when the police arrested her. To me, that indicated that it was not pre-mediated but likely an act of impulse.

I can imagine the mum's tremendous physical and mental stress in taking care of a special needs kid for 9 years, all by yourself. Add on the pressure of financial burden and the likely 'hopelessness' (based on societal norms) of his son's condition... such conditions can break anyone, given time.

Though the mum committed a terrible act, I would not point a finger, blame her and add on to her burden.

I don't know what the mum is thinking about now... I also don't know how the grandmother can cope with the death of her grandson and the arrest of her own daughter.

Though it pains my heart to see their family suffering... i not sure what i can do. One thing i learnt through Charlene's life is that it can be difficult for a grieving person to accept a help from random stranger...

Hope
I don't profess to know whether anything can be done to help those families. I will be a fool to say that I know the remedy to their troubles.

Each family troubles are unique. Charlene mummy and I have met so many families with special-needs kids of varying severity. While some kids condition may be better than others, it does not mean that the family have it easier than others. No, misery and pain cannot be quantified.

What I can share is the cornerstone of my strength... the strength that lifts me through difficult times, shelter me through the storms and give me hope in the darkest of night.

Jesus Christ is that cornerstone.

Believing in Jesus Christ means I believe that He loves me and He has a purpose for me. Having been a non-Christian, I know it can be incredulous to those who has not/ do not believe in Christ. But my personal experience tells me that when I put my troubles on to Him, my burden is lifted. Also, my faith in a higher purpose helps me to grind my teeth and stick through tough times, bec I know that the suffering can be put into use for a higher purpose.

Sometimes I think that if I'm an atheist going through difficult, persistent suffering, I may have just ended it all. If the meaning of life is to enjoy myself, then a life full of suffering is not worth living...

Our church also helps to support us through difficult times. The unwavering support and the weekly church service and cell groups makes it easier for me to ask them for help. Especially because they see Charlene on a weekly basis, so Charlene was very much comfortable with them.

Don't get me wrong. While I hope that many people come to know Jesus Christ, I will not "stuff" the Bible down the throat of someone's who is suffering, expecting him/ her to be miraculously saved just because he/she said the sinner's prayer. I do not think that God is our genie who grants us wishes; He has his plans and his purpose and that may be different from our own earthly expectations. When I entrusted my life to the Lord, I specifically told Him that I am not turning to Him for the healing of Charlene.

Again I re-emphasise, I am sharing the story about the source of my strength. If someone seek God's only for earthly gains or relief, he may be mistaken. But God definitely promise us something, something which I have experienced.

"For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope."  - Romans 15:4.
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May God bless the families who are suffering and heavy-laden with relief and hope. Lord, may you send people to help them, to console them, to give them respite and to give them hope to continue living. Amen.

Charlene's perseverance

You need to persevere so that when you have done the will of God, you will receive what He has promised. (Hebrews 10:36)

We believed that Charlene persevered for her 3.5 years on Earth and did the will of God and received her eternal reward.

Volunteering in the Zoo

A friend asked us to join her to be a volunteer to bring some special needs children to the zoo. The youngest is around 8, majority are above 13. Their conditions vary widely in severity ranging from Down Syndrome to mild autism.

The two children assigned to us seem very normal from their physical appearance. They can function independently on their own; can eat, can talk, can walk and run. But after spending the day with them in the zoo, we know they also have their own deficiencies.  One seems to have memory retention issue - she forget Dez's name more than once. She will repeat the same story many times, forgetting that she had already told us. The other will seem extremely rude to someone who has just known her. She will interrupt a conversation and say her own things, ignoring the other kid. She is also very demanding and physical in her play; she kept punching Dez in his tummy and do all kinds of pushing and shoving. The two lack patience and cannot seem to wait.

They look normal (from their looks) yet they will probably have great difficulties fitting into society. Their family also will feel the stress of caring for these kids as society will not understand and will put labels on them. I can so imagine relatives or passer-bys saying insensitive remarks like "Why is your child's memory so bad?", "Why is your child so stupid?", "Why is your child so rude? No manners."

I also cannot imagine how these children are feeling about themselves. Their self-esteem may be affected. How can we help these children?  The society in general must become more gracious, tolerant, empathetic and sensitive towards people who are different. But I don't know what I can do to spark the change in our society...

Visiting Charlene's friends

Charlene - the connection to the special needs family

Thank God for blessing us with Charlene. To be honest, it is only when we had Charlene that we can understand and empathize with the other special needs children and family. While I do not belong to the superstitious irrational people who will view these children as bad luck and order their children or grandchildren to get far away, I more of belong to the group who will just watch with curiosity, not knowing what can be done to help these children and their families. 

  

Respite

Because of Charlene, Dez and I got to know many special children of varying conditions. One thing I have always struggled with is the lack of respite in our 3.5 years with Charlene. We could leave Charlene with her grandparents or our church friends who volunteered. But we don't feel safe leaving her with them especially if  milk feeding is involved. Charlene can vomit anytime and we are worried that the people we leave her with will not be able to handle that. The image of her vomiting on that night (after which she ended up in the hospital and eventually passed away) still invoke feelings of guilt in me.  

Helping Others

So because of the lack of respite myself, I want to be able to help other special mummies so that they can take a mental break. I am very thankful to God that I was able to visit a few of Charlene's special friends this week. I played with one, bottle-fed a second and did some facial massages on the third. I hope I have helped their mummies in some way or another. Contrary to what some may think, seeing these children (smile, cry, move) brought me comfort as I know that what I am doing is meaningful. I am also thankful to God that I am able to draw strength and joy from serving these children.  

Also, some of these mummies have been through much more than I do and yet their faith in God remains so strong. I feel so encouraged by their faith.  

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....