Birth Of This Blog

By Cordy - May 30, 2019

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.