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"I know of many babies who died at that time. Many."
That was the journey of SJ with her BA daughter, who was ten years old on above mentioned date. SJ discovered that her daughter have BA when the nurse of the government clinic alerted her that her daughter's white stools were something unusual. That she must get a doctor to examine immediately. Eventually her baby had a liver transplant when her liver further deteriorated to a bad stage.
SJ is a friend of my husband. He has known her for many years.
Her words strike fear in my heart. My breaths temporarily stopped. My body became parched like a desert under the hot sun. I felt my body had heavy weights that were added suddenly, weighing me down on the sofa I was sitting on.
My broken heart over Patrick
Quickly, my eyes turned to my son. My husband was holding Patrick. I could see my husband's face was in shock and fear as well. We were totally unprepared for this.
SJ continued to share that she has seen marriages broke up because couples were unable to face the pressures of having BA baby. The complications that can happen during liver transplant. She knew of one case where the husband wanted to donate his liver to his baby. However, this man's mother strongly opposed. Which caused the breakdown of the marriage.
I am aware SJ indirectly telling us to be stronger in our marital partnership despite whatever hurdles and interferences may come our way.
There were moments where I noted slight tears formed in SJ's eyes while she shared her journey. It was very tough and challenging indeed especially when she almost lost her baby. Her Faith sustain her throughout the journey.
While emotional chaos was happening to the adults, the calm within the storm was Patrick. His interested eyes observing us keenly, trying to understand what we were discussing.
"Am I going to lose my son?" This thought completely broke my heart. "I only just had him. Is he going to die?"
Numbness seized my body. That familiar numbness I felt many years ago when I was a troubled teenager struggled with anorexia nervosa.
Instead of allowing these thoughts to sink me deeper, I decided to brush them aside.
I need to understand more of this. I need to. I told myself firmly while trying to absorb every little thing she shared with us.
Hearing the word, "death" made me realised that this is going to be a journey with my son that requires a lot of my strength, faith, endurance and especially love.
My prayers for strength and courage to face what is to come with Patrick
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…
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…
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, …