Four seasons of my daughter's life

Four Seasons

Chinese believe that life can be described in four seasons that is spring, summer, autumn and winter. The difference is, everybody has different life span and different fate, therefore, the period of seasons are different too.

Betty had only 14 years of life, this was very short, but it could still be divided into four seasons.

Spring

From birth to starting school, that was her spring. It looked like the blossoming, full of hope and happiness.

Summer

From five to ten years old, everything was in the stage of maturing – full of energy.

Autumn

From ten to twelve years old, when her illness started to show signs and symptoms, but nobody really paid attention. Nobody realized the horror. It was just like the leaves having turned yellow and fell off.

Winter

Betty’s last two years was her winter. Betty’s illness was getting worse; the cells in her entire body did not get enough energy, and were dying slowly. The body function was slowing down, and then stopped. When the brain cells all died, her life finished.

My book "Melas Angels"--Betty's first year (7)

Betty's first year--continue (7)

Every morning, we took Betty and let her at the day-care center but without the baby bag now because the center took care of the diapers and clothes although we needed to bring the bottles of milk or baby food. The caregivers at the center thought Betty was very lovely, cute, and very tiny, just liked a doll. Everybody wanted to hug her.

When Betty was about 8 months old, we bought a baby walker. She could move her little feet and went around the house. She was so tiny that sometimes she moved underneath the table. It was very funny.

At one year old, Betty weighted only 13 lbs. Other babies of the same age started walking but Betty could only crawl. In fact, she didn’t take her first step until she was 18 months old. In her first year, it seemed that she had no serious illness. She looked normal – only she was so tiny.

My book "Melas Angels"--Betty's first year (6)

Betty's first year--continue (6)

It was difficult to adjust to being away from Betty after spending 16 weeks with her. I used to cry in the office, missing her.

Three months later, the Children Place day-care center called to say they had a spot for my Betty. Of course, I was delighted. Mrs. Lee was sad – she has bonded with Betty.

Children Place has so many children, ranging from a few weeks old to ten years old. Betty was seven months old and in the baby group which was for ages from six weeks to 18 months. One provider looked after three babies. The children played together, drew pictures together, sang together, etc. This trains children to live in groups. We thought this was a good idea. Betty might feel lonely at Mrs. Lee house.

My book "Melas Angels"--Betty's first year (5)

Betty's first year--continue (5)

At 7 a. m. every morning every morning, Patrick and I would take Betty to Mrs. Lee’s house. We left her there together with the usual baby bag (bottles of milk, change of clothing, diapers and toys). I avoided working overtime (although Patrick sometimes has to work overtime) so as to ensure that Betty was picked up by me or by both of us at 5 p. m. everyday.

Mrs. Lee was an experienced, loving babysitter. Her children have all grown up. Betty was the only baby in her care. Mrs. Lee had a big window in front of her house. She would hold Betty and stand in front of the window waiting for us every time we arrive to pick Betty up. It made such a warm, lovely picture.

On the weekends, the three of us would go to Chinatown for lunch and the supermarket for Chinese food. Sometimes, we went to the malls. We carried Betty in a baby basket until she grew too big for that, and then we went around with her in a stroller. Strangers used to come up to look Betty and told me how lovely she was.

My book "Melas Angels"--Betty's first year (4)

Betty's first year--continue (4)

I had registered for a place in a place in a day-care center near my work place right before Betty was born but I had not heard from them, which meant only one thing – it still had no spot for Betty. Meanwhile, my 16-week maternity leave was about to end and I had to return to work soon. The one alternative is to hire temporary babysitter while waiting to hear from the day-care center. We saw an advertisement in a small local Chinese newspaper, which said:” a middle-age Chinese lady was willing to look after children at her home”. We also noticed that her address was near our home. So we contacted her. She was Mrs. Lee. Her fee was quite standard (even though it is equivalent to half my monthly salary) and as we could afford it, I took on. We will just use the help of Mrs. Lee until we get a spot at the day-care center when I could apply for Government subsidy.

When my maternity leave ended, I went back to work. Soon after, I changed job. Still working in the same area, in a high-tech company, but the salary was much higher. Patrick worked in another high-tech company in the same area.

My book "Melas Angels"--Betty's first year (3)

Betty's first year--continue (3)

At one month, Betty weighted only 7 lbs., just slightly heavier than when she was born. We didn’t know and couldn’t find out what was the reason? They thought, “little mother, like daughter”, I was a small-framed woman: 5 feet tall and weighted 100 lbs.

When Betty was about three months old, one day, she had diarrhea. She wouldn’t drink anything, not milk nor glucose solution. We rushed her to the emergency clinic (ER) in the Children Hospital for Eastern Ontario, CHEO. This was Betty’s first time at the children hospital; she was to become a regular patient there, and passed away 14 years later in the same hospital!

Betty’s first time at the children hospital’s ER was for her diarrhea. After the doctor examined her, he said that was common for a baby and advised us to change the milk formula. We went home, changed the formula but kept the glucose solution in order to avoid dehydration. After two days, she was fine. She still drank very little and grew up very slowly.

My book "Melas Angels"--Betty's first year (2)

Betty's first year--continue (2)

A few days later, my parents and my brother and sister all came to visit us. All of them were fighting to hold Betty.

Patrick’s family was still living in Hong Kong and had not yet immigrated to Canada, so we just called them through long distance calls to give them the good news, and also sent them photographs of Betty.

At that time, the Government policy was for staff to take a maximum of 16 weeks maternity leave at 60% basic salary. I took the option of taking the maximum leave to stay home to look after Betty.

Baby Betty was not easy to look after. She woke up and cried every second hour round the clock. It was exhausting to say the least.

Betty could drink 2 oz. of milk each feeding, I was not sure if this was because she was tired after sucking the 2 oz. of milk. When a visiting nurse came to my house a month later to visit Betty and me, I explained the situation to her. The nurse suggested I fed Betty with some glucose solution and alternate it with milk if Betty wakes up every two hours. She didn’t find anything wrong with Betty.

My book "Melas Angels"--Betty's first year (1)

Betty's first year (1)

Betty was born 2 weeks premature. I stopped working one week before she was born.

We celebrated Betty’s homecoming with a nice supper.

Remember those little clothes we bought long before Betty was born? They turned out too big for our new-born baby. Patrick had to run out to get some right size clothes for Betty. The new clothes fit, Betty looked lovely as a doll.

Giving a newborn baby a bath is a big challenge. You could hold her entire body in one hand and wipe her with a wet towel with the other. I love the smell of the baby, and can’t help holding and hugging her all day long. I have 2 sisters and a brother. I am the eldest. My brother is married and my sisters are still single. Betty was my parents’ first grandchild.

Patrick has 2 sisters and 3 brothers. He is the eldest. Patrick’s parents already have several grandsons and are delighted to have their first grand-daughter, Betty.

My book "Melas Angels"--My daughter was born (2)

My daughter was born- (2)

Betty, our little daughter, weighted only 6 lbs. 3 oz. at birth. Although she looked weak, the general check-up at the hospital confirmed that everything was normal. However, she had to spend her first week in the hospital’s baby room, and since I lost a lot of blood during labor, I was very weak as well and had to stay on a few days longer than I should at the hospital. At the end of the second week, Betty went home with me – it was such a warm day!

Patrick and I have been married for five years. A year before Betty’s born, when we knew we were going to have a baby, we bought this beautiful 3-bedrooms town house and spent most our weekends decorating it, in particular the baby’s room – which was filled with toys and little clothes.

We felt so blessed, Patrick and I. There we were, three of us. I spent endless hours staring at my little one and coming to terms with the fact that she spent many months inside my body, and now she is an individual. Look at her little eyes and mouth – she cries, she smiles, she eats and she sleeps.

My book "Melas Angels"--My daughter was born (1)

My daughter was born (1)

At 7:00 Am., July 14, 1987, I went into labor. Patrick, my husband, immediately took me to the Salvation Army Grace Hospital. The nurses checked on me at 15 minutes intervals. Patrick has just started a new job and as much as he wanted to stay with me, he had to tear himself away at 9:00am to attend a company meeting.

At 10:45am, the nurse came in and told me it was time, wheeled me into the delivery room, and informed the doctor at the same time.

I kept hoping Patrick would be back before the baby arrived but sooner that I thought, I heard the cry of a baby, it was my baby telling the world she has arrived. The nurse held her in front of me. She was the most beautiful thing I’ve ever seen. I was wheeled out of the delivery room, with my daughter by my side, when Patrick walked in. He was excited to see our little daughter and me. The little one sneezed, her tiny lips were kind of purplish – may be she was feeling cold, we thought, we wrapped her a little more tightly.

Facts about our genetic disease (6)

The medical research is getting more advanced day by day. If we know that this mitochondrial disorder disease existed in our body but has not yet developed, we can take the medication and supplement to prevent it. I hope, some of you will be alerted after reading this true story, so that some incurable diseases will be prevented in the early stage. Also, I hope that you can understand how horrible this genetic disease is.

It is simple for you or me to write an article, but it is not easy for a mother to write down the story of her deceased daughter. I gave life to my daughter, she was part of my body, I watched her growing our, from baby to teenager, from her birth to her passing away. Spring has come and autumn came. Sunrise and sunset. She had come and gone. When I wrote about certain part, I thought of her, my tears rolled down, my vision became blurry, my heart was broken. I could not continue the writing.

Everyday, there are unfortunate happenings around us. If we understand the facts, we still can go through this valley of the shadow of death. We will fear no evil. If some of you have this mitochondrial disorder disease or similar diseases, after you read my story, we can share the experience and burden of life.

I will start to post my book next blog article, the "Melas Angels", my daughter's true life story.

Facts about our genetic disease (5)

In a sorrow, after our daughter passed away, we let our son to have this disease tested. Very unfortunately, he has this disease too, but the percentage of the abnormal cells in his body is much lower than his sister. Of course, we are so sad. It is a fact, we must accept this fate, and fight for the battle of life. Since we know that our son has this disease, we have to take all kinds of pre-caution. We wish our son can grow up to be a man one day. Our son is a very active and smart boy now. Nobody will suspect that he has this horrible genetic disease. He is still so young to understand the happenings in these days. I must write down Betty’s story, so that when he grows up one day, he can read this story about his sister himself and understand these sorrow days of our family.

Facts about our genetic disease (4)

My daughter's final days were passed in a very painful way, her body function was shutting down slowly, she fell in semi-coma, we did not know whether she had feeling, but we suffered painfully, helplessly, and hopelessly. I watched her walking towards death. I wanted to grab her back, but I could not, she still had gone.

Because of our daughter, we knew this genetic disease existed in our mother-side family. One year after my daughter had developed the illness, I was diagnosed to have this disease. Another year later, my brother (he just passed away last December in 2006) and one of my sisters, i. e. Betty’s uncle and aunt, were also diagnosed to have this disease. All of us are taking medication and supplement to prevent and stabilize the development of this disease.

Fact about our genetic disease (3)

We had Betty many years after our marriage, and then, we had a son when Betty was six years old. A family with parents, daughter and son is supposed to be a happy family. But, we never knew, God played a trick to us. Our daughter passed away with this disease at early age. And this genetic disease was passed from me to her, my heart feels extremely painful, and guilty. I have this MELAS too, but I still could grow up to be an adult, get married, and have children. Until now, I become a middle-age, my symptoms start to develop. Since I know this disease, I can take the medication and supplement to stabilize it, I hope that I can have a normal life in the later days.

Facts about our genetic dusease (2)

This disease is very horrible! Once it develops, there are almost no particular treatments. Actually, my daughter had this disease since she was born, but, by that time, her symptoms were not significant. Also, there were no mentions in the medical field at the time, we did not pay attention, She was and active and happy girl before she was ten years old when the illness struck her. Then we began to know this disease from the specialists and got the information through the Internet, but it was too late.

Facts about our genetic disease

Very unfortunately, we have a very rare, mysterious, and horrible genetic disease existing in our mother-side family. It is called Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes (MELAS), we did not know and understand this disease until our daughter had the illness and became serious day by day, because this disease was very difficult to detect.

When a person has this disease, the mitochondria in the cells cannot create enough energy for the entire body. Then the body does not function properly and this person will die slowly. This is a genetic disease and it is passed from the mother to her next generation. Therefore, it involves a few generations. If somebody does not understand the meaning of “genetic”, then there will be a lot of blame. Life is tough and difficult, if the unfortunates happen, we must have the courage to accept the fate.

March

During these few days, the weather is so bad in USA and southern Ontario of Canada, freezing rain and heavy snowfall. Here is the capital of Canada, ice pellets started overnight and then continued the morning (today is Friday, 2nd of March), it changed to snowfall in the mid-day, we expected more than 20cm of snow at the end. There were no school buses running, kids had no school. My son, Benny could sleep until 9:30am to get up; he watched the TV and hanged with the computer all day. I didn't go to my computer class in the afternoon, just wrote a few emails to friends and read something as usual.

March is a sad month for me because it is the memorial anniversary for my daughter; she passed away on March 16, 2002 with the horrible genetic disease, MELAS, at the age of 14 years and 8 months old. This year should be the fifth year. My daughter started getting sick with this MELAS in 1997 when she was ten years old, then, in four years, she was in and out the children hospital so often. At last, she fell in coma, it was November in 2001. I remember, it was the most miserable winter in my life. I went to the hospital to be with her everyday, looked at her helpless, there were no words to describe this emotional feeling. My daughter's life was a long story, I will tell some-by-some in this blog later the days.

Now, I am still with my daughter everyday. Since she was gone, we re-arranged her bedroom to be my study room, we didn't bury her in the cemetery, she was cremated, we keep her urn at one corner in her "bedroom"----my study room now, favor toys surround her (urn). Everyday, I sit in front of my computer to read online and write, my daughter seems sitting besides me, when I turn around, I must see her smiling, (her photo is on the urn).