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Before KASAI, Patrick has always been a cheerful and lively baby. He always smiles to us. Playful, active and likes to engage with us. He was such a joy. We love him as our son. I could see he loved us as well.
The way his eyes stared deeply into mine, always melt my heart. The closeness of our bodies during breastfeeding made our bonding even closer.
After the KASAI surgery, he was wheeled into ICU for observations. After two days plus in ICU, he was discharged to normal ward to our surprise. The surgeon mentioned that Patrick was healing well. There were no complications. Why continue to place him in ICU? He told my husband when questioned his decision.
When we in the normal ward, Patrick was awake.
His eyes, Oh, his eyes.
No longer smiling. No longer having this glowing shine that I used to see. Instead, it was replaced with - Pain, Confusion. Questions.
To my husband's eyes, Patrick eyes seemed to say, "why???? Why the pain? Why all the pain??"
We were worried we may accidentally hurt Patrick if we carry him in our arms. Our surgeon advised us not to let our fears stop us from showing our love for him. The human touch is very important. Also, not to give Patrick a wrong idea that we were rejecting him.
"We must try to make him understand. Patrick would be thinking we are doing this to him. Giving him this pain. How to make him understand?"
In anguish, I shared my thoughts aloud to my husband.
He decided to tell the truth to Patrick.
My husband gently pat Patrick's wet hair.
"You have surgery. This is done to save your life. Do you understand? This pain? It's to save your life. If do not do the surgery, you will die. If you die, you will no longer see daddy and mummy. We have to save your life, Patrick. Understand, Patrick? Daddy, mummy loves you. Now you don't understand. When you grow up, daddy mummy will explain. Then you will understand."
Patrick's eyes did not appear to register what my husband was saying.
My husband tried a few more times.
When it was my turn, I kept assuring him that we love him. I apologised to him for the pain. That this pain only short term. Later no more.
Again his eyes gave us this look - why???
It pained me a lot to see him in this state.
I was going to prepare myself to sleep with him in the normal ward when the doctor discharged Patrick. Again my husband questioned his decision. Patrick had a major surgery. We assumed Patrick need to be in the hospital for a few weeks. The surgeon explained his wounds were fine. No complications.As a baby, the wound will heal a lot faster than an adult.
It's better for Patrick to continue to heal and recover at home than to be exposed to possible germs in the hospital.
When he returned to our home, he never once smiled. Whenever I tried to change his diapers or clothing, no matter how gentle I tried to be, Patrick cried due to feeling the stretch of the stitches. The pain killer medication seem to help lessen somewhat of his pain.
Patrick, I will be here for you, no matter what
The next day, Patrick's face looked bloated, unsmiling. He looked like a sullen boy. In fact, he looked as if he was still carrying a lot of pain in him.
I could not take it anymore. At that moment I made a vow to myself and to Patrick. I will make him SMILE once more. I MUST.
I decided to talk to him in a giggly manner. His eyes stared blankly. On occasion he looked away.
I made all kind of faces to him. His eyes were starting to have a reaction. Still, he would not focus on me for long.
Somehow I managed to make some kind of facial expression, comical enough to make him look amused. Yes!
His eyes were now more interested upon me. I continued my antics. I felt like a comedian facing a tough crowd whose funny bone are almost non existent.
Finally, his lips were slightly lifted up. His eyes appeared amused to me. Oh YES! A real smile!
And I continued. His smile slowly became wider and wider.
Day by day, I would do this for him. Making silly faces. Made up silly words. I danced for him. I sang for him. I made up songs for him. I moved my body in an odd manner. I pretended to fall in front of him and so on. I have never been this colourful in expression before. Yet if this can make him smile, I do all I can for Patrick.
Laugh and laugh with me, Patrick!
Not always he responded. When he did, his smiles grew and grew, like the sun rising from the horizon.
With each smile, it encouraged me to continue more with my comedic efforts.
My son, you are returning to us. Please don't ignore us. Always remember we love you very much.
Somewhere mid December 2017, a friend of my husband dropped by to our home when she heard of Patrick's condition. Her daughter has the same condition as well.
Last week, I
visited a friend who is suffering from Neurofibromatosis type 2 (NF2), a hereditary condition that causes her body to produce multiple tumours
throughout her life. Link to Yvonne's blog .
Photo was taken from her Facebook She
was supposed to go to the United States of America in May 2018 for a
cervical spine surgery. Unfortunately, before the trip, she fell on
her back and hit her head. She had to undergo a critical brain surgery instead
in Kuala Lumpur. The money she collected for the surgery in USA was all spent
on the brain surgery.
When I saw her,
the first thing I noticed was the protruding feeding tube at her stomach. Food
had to be
inserted through the feeding tube. Yvonne is deaf and blind. She is still bedridden and immobile as
a result of the fall she had in May 2018.
with Yvonne, I had to write an alphabet at a time, slowly on her palm. If she
doesn’t get the word, it must be
written all over again. It is best to use few simple w…
The birth of Patrick changed my marriage life from the two of us to the three of us, a family. We were excited, happy, worried followed by all kind of emotions for our baby son. So many things to learn, to experience. Breastfeeding, constant thoughts on our baby's well being especially when his jaundice appeared to rise during his first month. The lacking of sleep. There were moments I observed his breathing while he slept. We were amazed by every new mannerisms that Patrick displayed. We were so charmed when he first smiled to us. I would observed how gently my husband would treat Patrick and how Patrick would looked up to him, listening to his every word.
We were enjoying ourselves as new parents until something happened in the middle of November 2017 that changed our lives forever. "There is something not right with his stools."
My sister in law remarked to me while I tiredly changed Patrick's diapers. Mentally I can be exhausted as new mothers would be. We visited my s…
We could not believe how fast the funds came in after we uploaded our video appealing for funds to Patrick's liver transplant surgery fees.
I admitted that money was one big worry for without it, the surgery would not proceed. Once HOC set up the appeal on our behalf, I prayed. I prayed hard to God.
Suddenly a thought came. A video of us as a family, making a plea to friends, family and public. To save Patrick by donating to his surgery fees.
So, we quickly set it into motion on 22 May 2019.
I could not imagine the responses came beyond Malaysia - Australia, Singapore and more. From people whom I had not talked to for a few years, willingly came forward to donate, send a kind word, prayers and spread the video to their friends.
Before we go forward to the public, another worry I had was my mother. She has anxiety over Patrick. There were times I had to calm her down, assure her everything shall be fine when I admit I do not actually know whether it is so. I don't wish for my mu…