My impression of mum is not quite positive, she was not a bad mother. To me she is an emotional mother with low EQ, we often quarrel over small things like which television channel to watch.
She would starts ranting ,if my dad made a mess out of the kitchen ,forget to flush after visit the loo,when the toilet bowl got stained by poo. If i bother her too much, vulguarities comes in, here she goes now (back at the kitchen). In the worst cases, i would get a couple of slaps.
I know she was just plainly playing her part as a mum, not because she was willing to take care of my daiy living. Of course, which mum not loves her child.
I could not put the blame to her, she has to see to the housework and take good care of me.
And yet, there's not a thing i could do to help her.
Always, i felt i am a good for nothing son, a goner.
Friday, March 16, 2012
Monday, November 29, 2010
My First day in School
On the day school started,i woke up in the early morning to find that the sky still pitch dark. I asked "Is this morning yet, where's the sun? Is'nt morning supposed to be bright ,sunny. Huh?". "Silly" they smiled and laughed.
Still feeling drowsy, i took my breakfast, sunnyside-up sandwiched with two slice of bread. Had my fill with a glass of milk,then my dad walked me to school before going of to work. That was the only opportunity for me and my dad, to communicate, in our own world with our own means.
It was a 15 minutes walk to school which was located along Henderson Road.
Walking through a large open-spaced parking lot,we came to a small road. Opposite across the road was a chinese temple on the left,and on the right, across a road perpenticular to this road was a block of HDB flats. Next to it was the hawker center,selling all of my favourites.
On crossing the road we went straight ahead,passing by a 4-storey flat with shophouses on the ground level,there on the corner end was a coffee shop. Finally, crossed a traffic light,on the main road itself. When we reached the school gate where there was a bus-stop, my dad had to carry me up a long flight of stairs leading to the school,in order to save time.
When we reach school, my dad left me at the school assembly area outside the school and then left for work. I was left on my own, as it was still early there was only a few student was on the assembly area, slowly a few more arrive. A few by a few, filling up the empty spaces. It was time for assembly to commence,all the students rise for flag raising ceremony. I had some difficulties to get up, it was a struggle and it took time for me to finally rise.
After the assembly, classes by classes were leaded to our respective classroom.
Walking along a shelter pathway linked to the main entrance of the school building, on entering on the right was the principle office,on the left was some display of school projects. On turning right, there was a staircase leading to classrooms on different levels,my classroom was on the second level. There was no classrooms on the ground level,there was just the teachers's room , a conference room and at the end of the corridor path was the library located adjacent to the lavatory
at the turn of the corner.Beside the library was a bookshop,here you will come to the multi-purpose hall where the canteen was.
In class,we were only allowed to speak in english except for mother tongue lessons.Felt awkward at first but i adapted to it as day went by. During recess time,the upper primary pupil were to guide us on ,how to quene up in front of the stall to order food and keeping the change. Most importantly to bring the hot food on the table.
i was new to everyone in school. Every classmates were totally strangers.
Still feeling drowsy, i took my breakfast, sunnyside-up sandwiched with two slice of bread. Had my fill with a glass of milk,then my dad walked me to school before going of to work. That was the only opportunity for me and my dad, to communicate, in our own world with our own means.
It was a 15 minutes walk to school which was located along Henderson Road.
Walking through a large open-spaced parking lot,we came to a small road. Opposite across the road was a chinese temple on the left,and on the right, across a road perpenticular to this road was a block of HDB flats. Next to it was the hawker center,selling all of my favourites.
On crossing the road we went straight ahead,passing by a 4-storey flat with shophouses on the ground level,there on the corner end was a coffee shop. Finally, crossed a traffic light,on the main road itself. When we reached the school gate where there was a bus-stop, my dad had to carry me up a long flight of stairs leading to the school,in order to save time.
When we reach school, my dad left me at the school assembly area outside the school and then left for work. I was left on my own, as it was still early there was only a few student was on the assembly area, slowly a few more arrive. A few by a few, filling up the empty spaces. It was time for assembly to commence,all the students rise for flag raising ceremony. I had some difficulties to get up, it was a struggle and it took time for me to finally rise.
After the assembly, classes by classes were leaded to our respective classroom.
Walking along a shelter pathway linked to the main entrance of the school building, on entering on the right was the principle office,on the left was some display of school projects. On turning right, there was a staircase leading to classrooms on different levels,my classroom was on the second level. There was no classrooms on the ground level,there was just the teachers's room , a conference room and at the end of the corridor path was the library located adjacent to the lavatory
at the turn of the corner.Beside the library was a bookshop,here you will come to the multi-purpose hall where the canteen was.
In class,we were only allowed to speak in english except for mother tongue lessons.Felt awkward at first but i adapted to it as day went by. During recess time,the upper primary pupil were to guide us on ,how to quene up in front of the stall to order food and keeping the change. Most importantly to bring the hot food on the table.
i was new to everyone in school. Every classmates were totally strangers.
Tuesday, November 16, 2010
Unconditional Love
I must be grateful to my parents for their seemingly unconditional love towards me, despite, the increasing severity of my condition, as i am getting on my ages, and so are they.
As i get on with my age, it became harder for them to take care of me,as i got weaker by the years. They put in their best efforts and responsibilities, to give me a complete family in whatever way they could, never did it crossed their mind to leave me at the welfare home. Even with the extra burden they had to carry, it was an heartache to see their only son being tormented by such an" invisible nemesis".
My mum were told that i may not live beyond 25, and may be bed-ridden by 21. As the years goes by, each brings an uncertainties to my life. The fight carries on, even now it still have''t ended. How long is this going to last? No one knows for sure.
It was not a lonely battle against this nemesis. Over the years, they brought me to chinese physicians for treatment. From chinese medicine, reflexogy; to acupuncture. Tried every means to find a cure for me, not willing to gave up even the slightest hope for a miracle to happen.
Soon being informed of my successful enrollment in a nearby primary school,excited as most parents would. Sending their children to school for was the best they could do to let their children have a bright future.
Naturally they were more anxious about it, they got all the necessary books, stationery,bags, school uniform and shoes,even ahead beforehand. They made sure i knew my alphabets and count from 1 to 100.
As it was sometime before school starts,thoughts comes across their mind. They began worrying,until the very day i went to school about how am i going to cope in school by myself.
As i get on with my age, it became harder for them to take care of me,as i got weaker by the years. They put in their best efforts and responsibilities, to give me a complete family in whatever way they could, never did it crossed their mind to leave me at the welfare home. Even with the extra burden they had to carry, it was an heartache to see their only son being tormented by such an" invisible nemesis".
My mum were told that i may not live beyond 25, and may be bed-ridden by 21. As the years goes by, each brings an uncertainties to my life. The fight carries on, even now it still have''t ended. How long is this going to last? No one knows for sure.
It was not a lonely battle against this nemesis. Over the years, they brought me to chinese physicians for treatment. From chinese medicine, reflexogy; to acupuncture. Tried every means to find a cure for me, not willing to gave up even the slightest hope for a miracle to happen.
Soon being informed of my successful enrollment in a nearby primary school,excited as most parents would. Sending their children to school for was the best they could do to let their children have a bright future.
Naturally they were more anxious about it, they got all the necessary books, stationery,bags, school uniform and shoes,even ahead beforehand. They made sure i knew my alphabets and count from 1 to 100.
As it was sometime before school starts,thoughts comes across their mind. They began worrying,until the very day i went to school about how am i going to cope in school by myself.
Friday, November 12, 2010
My first step
I started walking only 4-5 months after my birthday,i was about 16 or 17 months old and walked out of my first step in life. Still there's no signs indicated that i may be suffering from DMD.
I uttered my first word when i was 2 years old plus,addressing my parents. Being the only child they had, they doted on me alot. Until things took a nasty turn,when i grew up to the age of 5. First, my Dad thought i was replicating how my mum was walking and argued over that. But later they saw the way i climbed up the staircase,i was using only my right foot. Holding on to the railings,step by step i climbed up the stairs. Huff, it was tough.
Soon enough we when to a specialist in Tan Tock Seng Hospital, that time before the current TTSH was built. It was the formal TTSH, before 1903, then. We were then arranged for an appointment to run a blood test at National University Hospital NUH, in short , officially opened in 1986.
After the test were carried out on the blood samples obtainied from me and my parents, results revealed that my mum was the carrier for DuchenneMuscular Dystrophy. My parents, especially my Mum were angry, they thought that that was just an assumption by the doctors. That was devestating for them. They simply could not accept the sad truth, "no way that's bullshit" they thought.
The dotors told us there was'nt any cure for DMD for the time being, but hoping that medical researcher may come up with a cure in the time to come.
Hmm... ... Fat hope ,i guess!
Like most kids i went on to kindergarten, where i learnt to read and write, made friends with normal kids. We knew nothing about the severity of the condition, that only became more and more obvious as i was near primary one. Still, we hoped for a miracle to happen, that one day there may be a cure for DMD but till the present day, that never ever come true.
I still remembered, there was once i was asked to participate in a games day,one of it was a game called "bean bag scramble" where the class was divided into two teams and tell them to go on opposite sides.
An odd number of bean bags were placed on the other end (spread out to avoid collisions). At each end of each sides was a box or bin.
The children have to run to the end, grab a bean bag and take it back to put in their team’s box, run back and do it again. Once all the bean bags are in goals the children count how many they have. The team with the most bean bags wins.
But the way i ran, made the other children mocked at me. The other kids parents were there too, their reaction made me felt really discomforted. I think my mum should felt the same too,since she was there too.
I need help even to remove wrapper from a sweet, and had difficulties putting together, and seperating the bricks apart when i played lego.
As i grew up, my muscle got weaker.
I uttered my first word when i was 2 years old plus,addressing my parents. Being the only child they had, they doted on me alot. Until things took a nasty turn,when i grew up to the age of 5. First, my Dad thought i was replicating how my mum was walking and argued over that. But later they saw the way i climbed up the staircase,i was using only my right foot. Holding on to the railings,step by step i climbed up the stairs. Huff, it was tough.
Soon enough we when to a specialist in Tan Tock Seng Hospital, that time before the current TTSH was built. It was the formal TTSH, before 1903, then. We were then arranged for an appointment to run a blood test at National University Hospital NUH, in short , officially opened in 1986.
After the test were carried out on the blood samples obtainied from me and my parents, results revealed that my mum was the carrier for DuchenneMuscular Dystrophy. My parents, especially my Mum were angry, they thought that that was just an assumption by the doctors. That was devestating for them. They simply could not accept the sad truth, "no way that's bullshit" they thought.
The dotors told us there was'nt any cure for DMD for the time being, but hoping that medical researcher may come up with a cure in the time to come.
Hmm... ... Fat hope ,i guess!
Like most kids i went on to kindergarten, where i learnt to read and write, made friends with normal kids. We knew nothing about the severity of the condition, that only became more and more obvious as i was near primary one. Still, we hoped for a miracle to happen, that one day there may be a cure for DMD but till the present day, that never ever come true.
I still remembered, there was once i was asked to participate in a games day,one of it was a game called "bean bag scramble" where the class was divided into two teams and tell them to go on opposite sides.
An odd number of bean bags were placed on the other end (spread out to avoid collisions). At each end of each sides was a box or bin.
The children have to run to the end, grab a bean bag and take it back to put in their team’s box, run back and do it again. Once all the bean bags are in goals the children count how many they have. The team with the most bean bags wins.
But the way i ran, made the other children mocked at me. The other kids parents were there too, their reaction made me felt really discomforted. I think my mum should felt the same too,since she was there too.
I need help even to remove wrapper from a sweet, and had difficulties putting together, and seperating the bricks apart when i played lego.
As i grew up, my muscle got weaker.
Tuesday, November 9, 2010
My 1st birthday
Before giving birth to me, my Mum was a production line worker in one of the electronics company. Working as a leader for the production line then had to gave up her job at the factory, to look after me. Because for some reasons my grandma does not want to babysit me.
My Dad who was i year older than my mum, took up the responsibility of being the sole-breadwinner for the family. He was a odd job labourer then.
The company my mum works in, required one month prior notice before leaving the company. Because of that, my Mum, still had to work for the production line, even just aftter her discharged.While i was left by my parents decided at my uncle flat to allow my elder auntie-in-law that is my Dad 's elder brother's wife to babysit me temporarily. I was back home just in time to celebrate my First full month, which was a tradition for the chinese, giving out cakes, red eggs dyed in red food colouring special pastries called Ang Ku kueh made from glutinous rice. It was a happy occasion indeed.The followup with the pediatric did not reveal any signs of abnormality.
Same like most babies, i started off with milk from a milk bottle, not until i got my first set of tooth developed. I began to start on slow feeds, then as i got nearer to one i began on, more solid feeds.
And so my Mum took up the responsibilities of being a housemaker, did the housework; did the laundry,swept the floor etc.Being very particular about cleanliness and tidiness, She kept the house clean and neat,despite being physically challenged. She had to learn from scratch how to cook up a meal, as cooking is not her cup of tea. Refering to recipes, even had to ask around for cooking tips. My mum was not on very good terms with my grandma, so she had only herself to depend on.
In the meantime,she took care of me and that was not an easy task. Changing nappies, feed me ensuring i am fit and healthy. The routine wents on until then... ...
Then my dad had to be away for a month ,oversea, to taiwan, for NS re-service training. That was when i was nearer to 1. My Mum were left at home,besides looking after me, she had to make sure that everything in the family is in place as well. Till my Dad returned home from the re-service.
Soon enough, i celebrated my first birthday. Relatives were invited over to our place, the whole place is crowded. My Dad side, had 4 elder brothers while my Mum side had 2 elder brothers, 1 elder sister and 1 younger brother .We received lots of blessing and gifts from the guests, it was another occasion to call for a celebration.
My Dad who was i year older than my mum, took up the responsibility of being the sole-breadwinner for the family. He was a odd job labourer then.
The company my mum works in, required one month prior notice before leaving the company. Because of that, my Mum, still had to work for the production line, even just aftter her discharged.While i was left by my parents decided at my uncle flat to allow my elder auntie-in-law that is my Dad 's elder brother's wife to babysit me temporarily. I was back home just in time to celebrate my First full month, which was a tradition for the chinese, giving out cakes, red eggs dyed in red food colouring special pastries called Ang Ku kueh made from glutinous rice. It was a happy occasion indeed.The followup with the pediatric did not reveal any signs of abnormality.
Same like most babies, i started off with milk from a milk bottle, not until i got my first set of tooth developed. I began to start on slow feeds, then as i got nearer to one i began on, more solid feeds.
And so my Mum took up the responsibilities of being a housemaker, did the housework; did the laundry,swept the floor etc.Being very particular about cleanliness and tidiness, She kept the house clean and neat,despite being physically challenged. She had to learn from scratch how to cook up a meal, as cooking is not her cup of tea. Refering to recipes, even had to ask around for cooking tips. My mum was not on very good terms with my grandma, so she had only herself to depend on.
In the meantime,she took care of me and that was not an easy task. Changing nappies, feed me ensuring i am fit and healthy. The routine wents on until then... ...
Then my dad had to be away for a month ,oversea, to taiwan, for NS re-service training. That was when i was nearer to 1. My Mum were left at home,besides looking after me, she had to make sure that everything in the family is in place as well. Till my Dad returned home from the re-service.
Soon enough, i celebrated my first birthday. Relatives were invited over to our place, the whole place is crowded. My Dad side, had 4 elder brothers while my Mum side had 2 elder brothers, 1 elder sister and 1 younger brother .We received lots of blessing and gifts from the guests, it was another occasion to call for a celebration.
Monday, November 8, 2010
A new life; A challenge awaits
It was after midnight, 00 37 hours , at a local maternity hospital ,cries of a newborn were heard coming from the labour room. After several hours of pain and struggle, a child was born out of the womb of a 28 years old, young brave mother.
That day was 1985 ,November 29th. My birthday.
After a long hours of patience, my Dad who was worried began to get impatient. It was when my mum were out of the labour room ,my Dad started to calm down. My Mum returned to her ward.
The next day, they look through the fiberglass window along the corridor of the nursery ward where i was in an incubator. Trying to locate me among the other babies. argue over who i resemble the most to. Not aware of the fact that i had inherited DMD from my Mum, life go on for my parents. No even the doctor suspected anything amiss.
3 days later, i was out of my incubator. My Dad did all the paperwork necessary for the discharge ,while my Mum waited, all ready , bags packed ;change out of the hospital clothes. Together ,my Mum and i was ready to go home, accompanied by my Dad, we took a cab and return home to a 3-room HDB flat, located in Bukit Merah area,nearby to Tiong Bahru, where we stayed in with my grandma. That flat was under my grandma 's name, it was bought from the HDB earlier from her hardearned money from her savings.
As a baby, i cried more often then other would, maybe, i knew what awaits me in my life ahead, was going to be tough for me. and my parents. They couldn't understand why i kept wailing.
It was when i started walk, they discovered something went terribly wrong.
That day was 1985 ,November 29th. My birthday.
After a long hours of patience, my Dad who was worried began to get impatient. It was when my mum were out of the labour room ,my Dad started to calm down. My Mum returned to her ward.
The next day, they look through the fiberglass window along the corridor of the nursery ward where i was in an incubator. Trying to locate me among the other babies. argue over who i resemble the most to. Not aware of the fact that i had inherited DMD from my Mum, life go on for my parents. No even the doctor suspected anything amiss.
3 days later, i was out of my incubator. My Dad did all the paperwork necessary for the discharge ,while my Mum waited, all ready , bags packed ;change out of the hospital clothes. Together ,my Mum and i was ready to go home, accompanied by my Dad, we took a cab and return home to a 3-room HDB flat, located in Bukit Merah area,nearby to Tiong Bahru, where we stayed in with my grandma. That flat was under my grandma 's name, it was bought from the HDB earlier from her hardearned money from her savings.
As a baby, i cried more often then other would, maybe, i knew what awaits me in my life ahead, was going to be tough for me. and my parents. They couldn't understand why i kept wailing.
It was when i started walk, they discovered something went terribly wrong.
Sunday, November 7, 2010
The story begins
After i came back from the cruise, i began to had lots of thoughts running in my mind. Are the 3 dreams really what i am looking for? Would realising such dreams going to make my life better? No, cause i had greater things to acheive,but being able to lead a normal life like what the ordinary people would,is what i always wanted... ...
My mum herself was the carrier for Duchenne Muscular Dystrophy
(i will be using DMD,in short) ,ie i inherited the disease from her genes. On a particular day, in 1976, where she was running late for work On the way to her workplace ,while, she was running up the stairs leading to the workplace. In the rush, all of a sudden, she discovered her difficulties of having to struggle up the stairs step by steps. Painfully slow and exhaustingly,step by step, she managed to climb up the remaining flights of the stairs. She was only the age of 18 then.
I could imagine her experience ,because that is what i had gone through at the earlier stages of DMD. But no one will, neither herself would expect that the rest of her life would be as hard as climbing up the remaining flights of stairs. Each step is a challenge for her.
Medical technologies were not so advance then, when she approached a specialist in one of the local hospital ,backthen. The specialist who did not run any medical examination or test,on her, failed to diagnose her condition, and simply told her off hastily. "Your lower limbs looks fine,alright? You should go home."
I thought i would want to share my story with the rest of the world , and hope people would want to read it.
My mum herself was the carrier for Duchenne Muscular Dystrophy
(i will be using DMD,in short) ,ie i inherited the disease from her genes. On a particular day, in 1976, where she was running late for work On the way to her workplace ,while, she was running up the stairs leading to the workplace. In the rush, all of a sudden, she discovered her difficulties of having to struggle up the stairs step by steps. Painfully slow and exhaustingly,step by step, she managed to climb up the remaining flights of the stairs. She was only the age of 18 then.
I could imagine her experience ,because that is what i had gone through at the earlier stages of DMD. But no one will, neither herself would expect that the rest of her life would be as hard as climbing up the remaining flights of stairs. Each step is a challenge for her.
Medical technologies were not so advance then, when she approached a specialist in one of the local hospital ,backthen. The specialist who did not run any medical examination or test,on her, failed to diagnose her condition, and simply told her off hastily. "Your lower limbs looks fine,alright? You should go home."
I thought i would want to share my story with the rest of the world , and hope people would want to read it.
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