Lily's children: An Update

Remember Lily, the woman with such a complicated life? For those who did not follow her story, you can read about her here and here.

In Lily’s life story, so many things should not have happened. Amongst others, her husband, who was taken by his family members back to their hometown in another state when he got too weak, did not tell her he had HIV. Then when he died, his family members did not inform Lily or any of her children about his death. It was only a few days later they found out about his death – that too because Lily told her eldest daughter to call her paternal grandma to find out how the father was doing.

Lily’s relationship with her in-laws worsened and even to get her husband’s death cert, Lily had to resort to going to JPN. When she got the copy, she got a shock upon seeing HIV/AIDS indicated as the cause of death. Then she brought all her children for tests, and how sad it was for her to learn that not only she herself was infected, but also Boboy, her youngest 4 year old boy.

Coincidentally, not long after I posted Lily’s story, Lily died. It came as a shock to me, because when I saw her the week before, she looked fine. Lily did not die of HIV-related illness, but instead due to complications related to dengue. I wrote about her funeral here.

Lily’s complicated life may have ended then, but life continued to be complicated for her children, especially for Boboy, the HIV-infected child. Although Lily’s brother, Bashar, took over the responsibility of becoming the children’s new guardians, he was very concerned about taking care of Boboy. Not that he didn’t love the boy, but being someone who didn’t know much about HIV, he was thinking maybe he should give Boboy to someone who knows more about HIV to take care of him. I wrote about this here.

I have never met the children after Lily’s funeral. Initially I wasn’t too sure who would be taking care of the children. Then I wasn’t too sure how Bashar’s wife would take it, so my contact with the children was only through my telephone conversations with Bashar. They were supposed to have joined our Family Day outing last month, but pulled out last minute as one of Bashar’s own children was not well.

Recently I decided to call Bashar again to find out if he’s getting enough financial assistance to take care of the orphans. Apparently he had already submitted his application for financial assistance from the Welfare Department, but to date nobody has visited them yet to assess their situation.

This time I took the opportunity to ask for permission to visit the kids at Bashar’s home. Although Bashar said most of the time he’d be outstation (he’s a lorry driver), he gave me the green light to visit anytime as his wife is always home. She sells some tidbits at home to get extra income for the family.

So, today I went to visit them. They live in a small low-cost terrace house which is comfortable enough for Bashar, his wife and their 2 small kids. It is a bit packed now that they have 4 additional children staying with them, but they seem to be coping. All the children were home except for one who was in school (afternoon session).

Bashar was not in town, but his wife seemed welcoming enough. Although I have never spoken to her before (she seemed to avoid me on the day of Lily’s funeral), this time she was talking freely about the kids and the problems they face.

Apparently, the children’s paternal side of the family are still trying to get at least one of the children under their custody. Just to be sure that they weren’t forcing the children; Bashar and his wife had a heart to heart talk with the children and asked to them to decide for themselves who they wanted to stay with. The children chose to stay with Bashar.

I don’t know how true this is, but I was told the children's paternal aunt needed at least one of the children to be with her to enable her to withdraw the EPF of the children’s late father. This one… I tak mau masuk campur…

On a lighter note, the children’s late father’s Socso has been channeled to Bashar as the children’s new guardian. At least there’s extra cash to cope with the sudden extra dependents. They have also applied for Lily’s Socso, but this may take some time to be approved.

However, I’m a bit disappointed to learn about what happened to Boboy. You see, the little boy has already started on his HIV medication recently. For HIV medication, it has to be taken regularly at a fixed time. No delays. So the boy’s guardians must ensure that the boy takes his medicine right on time. Since Boboy’s new guardians are loving and responsible enough, that’s not a problem.

So, what’s the problem? You see, Boboy has been going to a certain kindergarten ever since his mother was still alive. Now that the boy has to take his medication at a specific time, Bashar and his wife had to tell the kindergarten teacher to make sure Boboy takes his medicine at a specific time. When the teacher saw the medication, somehow she knew it was for HIV.

Since then, although the teacher didn’t say it directly, she kept on insisting that Boboy didn’t need to go to school yet as he was still young. Even Boboy himself is reluctant to go to kindergarten now because he said, “Cikgu tak layan.”

Boboy doesn’t know heads or tails what illness he has and he doesn’t know heads or tails the stigma and discrimination some people seem to have against HIV infected people. He must be wondering why his teacher didn't seem to layan him of late.

Oh the poor boy…