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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.
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. Mummy supporting and loving baby 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. Menta
I 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. Despite 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 bef
During updating Patrick's status to a friend of mine today, Patrick called out from the bed. I looked up to his dancing eyes and smiling face. This would usually put me in smiles. Instead, I watched his face more closely than usual. Much earlier this morning, closer to 2am, his vomit was mixed with blood. He was down with flu and cough since late last week. Earlier this week since Monday, the past couple of nights had been trying to us both. He woke up a few times coughing that caused him to vomit out his milk. For my readers who have not been aware, every night his nasogastric tube attached to a machine that pumped in milk throughout the night. I do this upon the doctor's advice to assist him to gain weight. HIs running nose irritated Patrick when its mucus dripped onto his upper lip. His body temperature did not appear to reach 37.5C and beyond. He has been active, as per his normal self except during the night he appeared to be more fussy than usual. He also appeared to