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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.
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…
International Women's Day is here once more. Some celebrated it. Some feel should not as a celebration of womanhood should be everyday. To me, these days can be served as a reminder to us. We can be preoccupied with our responsibilities, activities, our families and of life that we sometimes even forget our own birthday.
Today I reflected on the women who have impacted me. Because of these women, they inspired me to write a woman song in 2018.
Women Song sang on 8 March 2020, dedicated to all women readers here. I wrote it in 2018. There are so many women out there who made a big impact on me over the years since a teenager until today. Let me list them whom I can remember offhand:-
1) Anne Subashini - founder of The Inclusive Outdoor Classroom. I have the privilege to get to know her since drum circle days. Her passion is infectious. Her faith, her belief that there should be no division between children no matter of their backgrounds, no matter of their health conditioning is emp…
looked at his pale face and frail body on the hospital bed. Lines and tubes on
his legs and neck. There was a bag at the right side with yellowish looking
water inside. The liquid was not urine but water which had to be pumped out
from his stomach cavity. It was difficult
to see someone whom you have known since young to look so weak. He had lost
weight and aged considerably. It
was the second day of Chinese New Year. My sister and I took a trip down
to Kuala Lumpur to visit relatives. We visited a cousin at the High Dependency Unit,
he had liver cancer and was complaining of diarrhea. Visiting hours were 11.30am
to 1.30am and 5.30pm to 7.30pm. We had to take turns going in as only 2 guests
at a time are allowed.
having the experience of a prolonged stay at the hospital and being immobile, I
was tongue tied. I didn’t know what to say or how to comfort him. I could
only share with him of my previous struggle at the hospital. On
our second visit before our trip back to Penang, …