My Healing Path

The Star Online > Lifeliving

Monday November 6, 2006

Sharing the pain

Losing a child is a trauma that many cannot understand. Three people speak to ELIZABETH TAI about their experiences and why they think grief support in Malaysia is lacking.

IT was Labour Day, four years ago, when Lilian Chan’s seven-month-old son, Vincent, passed away.

On that day, Vincent opened his eyes and kicked about, something he couldn’t do for two months as he was heavily sedated. Since he was diagnosed with a chronic lung disease, Vincent spent most of his time in a hospital, with only seven weeks at home.

But the day soon turned grim when two children died in the intensive care unit Vincent was warded in.

“I was at hand to console the grieving mothers. However, I never expected that soon it would be my turn to be consoled,” she wrote in a personal website dedicated to Vincent.

Vincent was cremated the next day, his ashes strewn in the sea off Gurney Drive.

“Taboo disallowed him to have a grave or even an urn. So, I was basically left with nothing at all to hang on to,” said Chan in an e-mail interview.

People deal with the grief of losing a child differently, said Chan.

Dicky Ng lost his only child, five-and-a-half-year-old Sherisse, to congenital heart disease on April 19, 2003.

“She died on a Saturday evening, around 9pm. I could not sleep the whole night,” he said.

However, Ng resumed his daily routine the next day by jogging in the morning like he usually did.

“I am an action person,” he explained.

Later, he took slightly over a month off work to keep his wife, Susan, company and the couple went to New Zealand for two weeks.

“Before we left, I prepared a little card. The card was for those who would try to console me about our loss, especially at work. I was afraid I could not contain my sorrow when others asked about her,” he said.

The couple also went on to set up the Sherisse Memorial Award for Adventist College of Nursing in Penang in honour of their daughter.

Chan, on the other hand, filled her days with much activity after Vincent’s death: writing poems and newspaper articles to share her experience. She also built a website where she wrote poems and essays about her son.

“Some of us lose our faith, some find new faith. I turned to Christianity,” said Chan. “Religion is a major support for me.”

Chan also joined several grief support groups on the Internet and even became a moderator and website editor for a support group that has 100 members from around the world. She later formed Malaysianmomshare.com.my, an online support group for bereaved parents.

The Ngs, on the other hand, found support in their church members.

“The church is our family,” he said. “The members kept us company for the whole week, brought food, ate with us, had evening worship with us for the week immediately after Sherisse’s death. Others who were not close to us were there to help us with the undertakers and the funeral arrangements. The church overflowed during memorial service on that Sunday night (it was Easter).”

For Audrey Tan, her husband was a big source of support after she lost her daughter, Ashley, eight days after her birth.

“My hubby was the pillar of strength for me although he was in pain as well,” she said. “We were there for each other patiently … he was there 24/7, 365 days.”

It was a trying time for both. Tan had gone through fertility treatments for two years when she finally conceived Ashley.

“Having her for eight days with us just added more to the painful and heart-wrenching moment when we lost her to Hypoplastic Left Heart Syndrome,” she said.

Because the couple didn’t know about the disease, it left both of them dazed. (In Hypoplastic Left Heart Syndrome, the left side of the heart is underdeveloped.)

After Ashley’s death, Tan found it difficult to see babies, and stayed away from parents with young children, especially babies.

“It’s very hard for family members or very close friends to comprehend what our inner thoughts and feelings are. Many are very sympathetic and try to be comforting, but it’s very difficult to accept anything during the early months,” she said.

Unfortunately, society can be unkind to bereaved parents.

“One mum, who lost her baby days before Chinese New Year, was quickly swept away. Her in-laws’ home was still decorated with red decorations to celebrate Chinese New Year. She wasn’t allowed out of her room. A lot of people refused to visit the family due to the ‘dirt’ associated with the death of a baby,” she said.

“I once attended the funeral of a suicide victim. Relatives of the mother forbade her from taking part in the funeral due to the Chinese belief that parents should not be present in a child’s funeral for fear that the child has trouble going to the ‘other world’,” said Chan.

“I insisted that it was all right for the mother to follow the hearse to the grave because I knew that it was the last journey she was going to have with her daughter. I received dagger stares from her relatives but I knew that I was suggesting the right thing for the bereaved mother,” she said.

Tan said: “I couldn’t bear to go through my 30-day confinement. Immediately after Ashley’s cremation, I went back to work. It was more of torturing myself as well as I felt it could have been my stubbornness of not following the taboos, beliefs and sayings of our Chinese elders that we had to face such pain in our lives.”

Bereaved parents will probably face feelings of helplessness and moments when there seems to be no reason to live, said Chan.

“Thoughts of dying do occur in some of us for fleeting moments. We have this desire to follow suit so that we can take care of our child. I like to remind newly bereaved mums that we do go through these thoughts, but we must express these to another person,” said Chan.

“That is why it is important that bereaved parents get in touch with each other so that they can unload these thoughts which can be frightening if we harbour them on our own. By knowing that this is part of the process we go through, we slowly endure days and weeks until we start to get back on track,” said Chan.

The loss of a child can sometimes put a great strain on a marriage.

“I have witnessed how some couples allow their relationship to drift apart so much so that they end up like strangers,” said Chan.

Some women have shared with Chan how they wanted to end their marriage because both parties were not able to share their grief with each other.

“I usually tell these women to hang on and try to remember why they married their spouse in the first place. Work hard to get back those good times. The last thing they need is a divorce after the loss of their child.”

Relatives and friends, unsure of how to deal with bereaved couples, tend to unintentionally aggravate the couple’s grief by brushing off the issue, thinking that it will help the parents to “move on faster”.

“Some people do not feel comfortable if the parents bring up the deceased child. I have seen jaws drop when I talk about my son. People shift uneasily and quickly change subject,” she said.

At times, friends and family try too hard to offer words of comfort.

“It usually does not sound right to the ears of the bereaved parents. My best advice is to not say anything except to touch, hug and lend an understanding ear,” said Chan.

Said Ng: “Seek to understand faith, and be at peace with the divine. Adopt a faith that gives you peace now and hope for the future. Pray to God. Accept help from others. Cry it out if you wish – even if you are a man. Write it down in a journal.”

“There is hardly any organisation set up to help grieving people. NGOs like the Befrienders are understaffed and can’t provide adequate coverage,” said Ng.

Tan looked high and low for some form of organised support to overcome her situation but her search was fruitless. Fortunately, she later found a Singapore-based support group which recommended Malaysianmomshare.com.my.

“Frankly, Malaysia is lacking in this area and we have to seek help elsewhere, especially overseas,” said Tan.

A doctor who was Vincent’s long-time medical caregiver told Chan that parents like her who had gone through long, agonising months of caring for a critically ill child who then dies should find some form of peer support.

“He told me that in his years in the government hospitals (before he joined private practice), they had tried to form support groups where the parents meet physically, along with some medical doctors. Unfortunately, the response wasn’t good,” she said.

“This could be due to our different religious, financial and educational backgrounds and frankly, no newly bereaved parents are up to meeting anyone right after the death of their child,” said Chan.

“To be very frank, it is not easy to manage a bereaved support group. Preferably, a medical professional should lead the group. However, we have to be realistic – not many of our government doctors can afford the time. Moreover, Malaysian parents are not extroverts so most bereaved parents prefer to keep it to themselves,” said Chan.

Malaysianmomshare has over 30 members from all over Malaysia and Singapore. However, Chan admits that sometimes it can get too depressing for her, and she has to take a breather.

“Unlike most groups, we are not the cheerful, ‘cannot-wait-to-meet group’. Bereaved parents sometimes do not have the courage to talk openly about their loss because it can trigger off a lot of emotions. It took me several months before I could even say the word ‘die’. So, basically, we know that we have a support system, a listening ear when we need to pour out our pain,” she said.

However, it is also difficult to encourage members to lend a listening ear to newly bereaved parents.

“No, I am not lamenting or complaining about this because I do understand their situation. Once you try to move on it is sometimes difficult to come back and start from square one. It can be a vicious cycle to bereaved parents if they keep being near to the heart-wrenching grief of newly bereaved parents. Each time we do, it may trigger off our own depression. Therefore, many members do disappear from the scene. Which is good news because it shows that they have got back on track with their lives,” she said.

Lilian Chan puts up articles for newly bereaved parents called My Healing Path at myhealingpath.net. She also manages an online group called Malaysian Mom Share (www.geocities.com/malaysianmomshare).