THEY WILL ASK thee as to what they should spend on others. Say: "Whatever of your wealth you spend shall [first] be for your parents, and for the near of kin, and the orphans, and the needy, and the wayfarer; and whatever good you do, verily, God has full knowledge thereof." - Al-Baqarah (2:215)

Monday, 10 September 2007

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…

22 comments:

U.Lee said...

Hello Pi Bani, it is really sad to read about Lilly and her children, the young boy too. How come her husband was taken away from her to another town with his people?
Pi Bani, just out of curiousity, how did some of these people kena Hiv/Aids?
Was/is it thru drugs, injections or...sex related? Pity the wives and children. So kesian la when I read your stories.
But you sure bring a light into their sad lives. UL.

ninuk said...

my heart goes with boboy. kids adore their teachers and if the teacher tak layan, tentu dia heart broken. i know my 4 yold, every day must say teacher buat ni, teacher kata ni, teacher suruh ni ...

Pi Bani said...

U.Lee,
The husband's family took him back to their hometown when he was already too weak. Lily needed to work to earn some money for the family so she couldn't take care of him 24 hours a day.

Anyway, the husband was an injecting drug user. That was how he got infected and that (drugs) was why he got fired from his last job. Since Lily didn't know her husband had HIV, and during her pregnancy no HIV tests were done on her, she delivered Boboy thru normal delivery and even breastfed him after that.

Yes, the wives and children are just victims... pity them!

Pi Bani said...

Ninuk,
The guardians intend to put Boboy in a new kindergarten next year. Hopefully they will be a bit more careful and need not tell anyone that the boy has HIV. Kesian budak tu tak tau apa-apa... memanglah terasa if he is treated differently.

Anonymous said...

Salam K.Pi,
Oh dear...its so sad to read what Boboy is facing. (If my kids kena this 'tak layan thingy, it'll sure break my heart!)
Most of the time when I read your blog I'll go..'kesiannyer'
May Allah give you the strength to carry out your work and may this Ramadhan bring blessing to everyone!!
-niasulaiman-

winniethepooh said...

it is lucky that lily's brother and wife are so loving and are willing to take care of the 4 children.

Teachers are supposed to hv a love for children, isnt it? she should be doing all she can to help boboy, not try to do more harm to him by not giving him his medicine. Perhaps Pi Bani should conduct a workshop for the teachers to educate them about HIV/AIDS?

Pi Bani said...

Niasulaiman,
Yes laa... very kesian these people, especially when the story involves innocent kids. And frankly, muka Boboy memang muka kesian habis!!

Pi Bani said...

Hi Winnie!
I've conducted talks in schools before at the request of the various schools. But so far only secondary schools. Not primary, not kindergarten. If the schools don't request, quite difficult for us to go in.

kl_gal said...

Hi Pi Bani,
You are another awesome lady like Daphne. Keep up the great work.

Mat Salo said...

Pi..no matter what you write about these poor unfortunate souls, it always makes me feel so hollow inside - because I can never imagine such suffering.

And dealing with a society that is not equipped for compassion - more so for people with AIDS/HIV.

I pray that in our lifetime, Pi, - our best bet would for the researchers to find a cure. In the meantime, we thank God for NGO's and you Pi to help alleviate some of their pain and suffering.

Not only kesian budak tu Pi, but kesian everybody yang associated with them...

Nightwing said...

So sad, how can the family of the husband be so selfish in not letting Lily know.

Will go through the past stories of her.

Kesian the child. My heart ache as i read the story.

Thanks again for sharing..it must be tough for you to post the stories too.

Pi Bani said...

kl_gal,
Thanks for dropping by.

Coincidentally, Daphne and I stay near the same neighbourhood in Ipoh. But we only got to know each other after we started blogging. Small world, huh?

Pi Bani said...

I sure hope one day researchers will find the cure. I know there are still people out there who thinks the HIV infected people "deserve what they got", but really, how can we say a cute little innocent boy like Boboy deserve that? (Actually I tak tahanlah tengok muka budak ni... KESIAAAAN sangat!)

Pi Bani said...

Nightwing,
Posting their stories is not as tough as meeting them. And if seeing them or listening to their stories is heartbreaking enough, imagine how these unfortunate souls have to face things, day in day out...

Sharing their stories is the least I can do for the moment, with the hope that the general public (at least those reading blogs) will be able to understand more about their predicaments.

PrincessJournals said...

everytime i read ur post, mesti my blood go upstairs punya. remember my comment in ur previous post abt teachers only reading the textbook and take tht as teaching? ha, inilah 1 contohnya. i dun undersatnd why cant tht teacher go look up abt hiv/aids so tht she knows how to help boboy. ini tidak. ada ke disuruhnya budak tu not to attend school? tak ada perasaan ke apa bila treat budak kecik camtu? grrr...

Pi Bani said...

Princessjournals,
Macam ni I think I need to put a disclaimer note on my blog lah... those with high blood pressure are to read this blog at their own risk. Nanti my stories make their blood semua go upstairs susah le pulak! :)

Anyway, some people are just too afraid to be associated with any HIV infected people. Tak kiralah adults or kids. Like this kindergarten teacher - she cannot simply throw the boy out of school, so dia buat tak layan sampai budak tu sendiri tak nak pergi sekolah. I guess she just wants to look for the easy way out. Tak taulah...

Raden Galoh said...

KakPi...Alfatihah buat Lily..

Tak terkata apa bila baca hal boboy...sebak dada saya kak. Semoga Allah mudahkan urusan mereka itu ye...

Selamat berpuasa Kak..semoga ibadah kita diberkatiNya, insya'allah...

Pi Bani said...

Raden Galoh,
Yang I paling kesian pasal Boboy ni is the fact that he doesn't even know what's going on. Muka pulak memang cute sangat-sangat...

Selamat berpuasa to you too...

Kata Tak Nak said...

Selamat Menyambut Ramadhan Al Mubarak kepada semua

Pi Bani said...

KTN,
Same to you and to all Muslim readers!

Kerp (Ph.D) said...

Kak Pi,

i read startwo this morning and i was proud to see more youth of today are getting themselves involved with creating public awareness as far AIDS/HIV+ are concerned. even i need to learn more abt it, which admittedly, my knowledge is something i cant be proud of.

hats off to those young fellas.

Pi Bani said...

Kerp,
Check out this blog:
cqsmkseribintangutara.blogspot.com

Young ones on Aids and Volunteerism