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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
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…