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This blog would not have happened without Ms Chong Sheau Ching's instigation. We have met many years ago at a writer's event in MPH at One Utama Shopping Mall. I think it was in 2005. At that time I got to know a teenaged girl by the name of Yvonne Foong. She wanted to embark on the path of writing her autobiography. At the time I was not a professional writer. I have no knowledge on how publishing worked. What need to be done to get a book published and so forth.
Yvonne placed so much faith in me that I felt maybe she could be misguided to do so. For I did not publish a book then. (Today I have done so) I do not have any publishing contacts. I did not know what steps to become a book. Because of the promise I made to Yvonne that I would be with her all the way until her book (I'm Not Sick, Just A Bit Unwell: Life With Neurofibromatosis) is published, both of us went onto an adventure of meeting writers, publishers and attending writing events.
I have to say, sometimes it had been a disappointment. There were some who rejected upon basis it would not do well on a commercial basis. Another refused to work with her because she is deaf and found it tedious to communicate with her using writing pads. He preferred to work with someone who can hear him.
It was upon meeting Ms Chong Sheau Ching that made this writing journey worthwhile and special. I remembered her kindly eyes onto Yvonne as she patiently listened to me. She would answered me patiently to my queries. I remembered I read on her background through Google. She appeared to be one of the right person to ask for advice. She did not disappoint us. After she wished us well, we went on our separate ways.
Then in 2018 I got to reconnect with Ms Chong again. Through our conversation she got to find out I was in the hospital with Patrick. She shared of her challenging life experiences. She shared of the work she has been doing, which impressed me that she is still affecting lives for the better.
Then she made a suggestion to me that made me pause.
A blog. On my journey with Patrick. She felt that it is one way to promote the awareness of the condition. Also act as a healing for me.
I paused because sometimes taking care of Patrick can be a full-time job. When his symptoms acted up, it can be for hours before I can settle him down. For those who have babies would understand how demanding and time consuming in taking care of a young child.
I did consider maybe I write a book. That would be a few years ahead after Patrick is more stable.
Even if I breastfeed Patrick while writing, his usual response would be excitedly joining me in typing the keyboard. That led to my MacBook being hanged.
Writing using my Macbook
I do not like to give a promise of commitment when I could foresee it would be challenging to do so. Ms Chong told me it would be up to my free time. Although once a week submitting an article would be a good practice. Over the months, I had to stop for more than a month because of certain challenging situations arose where Patrick's condition is concerned.
When I could not make a decision, usually I rely upon meditation and prayers to gain clarity.
My meditation and prayers guide me to write this blog
It is not the first time I relied upon meditation and prayers to seek clarity on my uncertain position of life. Such as the situation that happened to me a few years ago when my handbag was stolen. My passport, personal identification card was gone with my mobile.
Almost a year later, I could not believe how far my column, Unexpected Living has become. During the period of writing, I would promote my blog to a small circle of friends and to the support group. As my motivation grows to spread awareness of initially Biliary Atresia and now Alagille, I will promote this often.
This is not just about myself and Patrick. This blog can be an awareness on what to expect, on how to manage his condition. For parents to take a deeper investigation when their babies' jaundice still continued beyond a month. Ignorance is not bliss as I have written about Baby Ibrahim's suffering. That life can still go on despite the worries and fears despite management of this sickness on this journey. We can still smile, laugh and have joyful moments. To appreciate and to be of gratitude during good days. To have patience, endurance, hope and love during not good days.
Maybe one day I will stop writing this column. Maybe I will continue.
One thing I learn on this journey of life, come what may.
My life has been truly unexpected living. Never would I expect myself to conceive naturally by the age of 45 was one good example.
Soon I will be in China for a month due to Patrick's liver transplant. Unlikely I would have the time to write during that period. I will continue to write after we return to Kuala Lumpur.
For now, if I have time (especially when Patrick taking naps and when I am not exhausted), I will continue to write until I leave for China.
Writing for future articles until I leave for China soon.
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…
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…
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…