When you have a special child

Remember Siti Aisya? The little girl who was suffering from a rare syndrome called Fraser Syndrome? Her story was first highlighted by Daphne Ling in her blog back in 2007. Fellow bloggers and blog readers then rallied to collect donations in cash and kind for the family since Aisya was a high maintenance child due to her needs – follow-ups to hospital, diapers, milk (Aisya could only take milk and not any other kind of food).

On 19th April this year, little Aisya passed away. When I received the text message from Daphne, I went to visit their home, but nobody was there. I knew then that probably her funeral arrangements would be at her grandparent's kampong. I didn’t know where that was, so I didn’t get to visit the little girl for one last time.

Well, Daphne is now back in Malaysia for her holidays, and when she asked if I’d like to visit Aisya’s family, I definitely said yes. It was an opportunity not only to visit the girl’s parents, but also to meet up with Daphne… although we actually stay only 5 minutes from each other!

So yes, this morning we went to visit Aisya’s mom, Yati. Big brother Syazwan was in school, while dad Shahidan was away.

The first thing I noticed when I walked into the house was that Aisya’s mattress and pillows were still there in the middle of the living room – right where it was when I visited a few years back. Yati simply couldn’t bring herself to put them aside. She tried once, but felt ‘empty’, so she put it back where it always had been when Aisya was still around.

Yati showed us the latest pic she had of Aisya after her last operation. Wah, the girl had grown! She’s taller and her face was also chubbier. According to Yati, Aisya was no longer scared of people like she used to be. She loved meeting people and she’d go to salam them, kissing their hands and all. Yati & Shahidan even brought Aisya out shopping and the girl loved it despite not being able to see anything. Yati herself had expected there would be all kinds of reactions by the people they’d meet outside.

There was a kid who said out loud, “Mak, tengok dia takde mata!!” – earning the kid a pinch from the mother, telling him to keep quiet. There were parents who came to talk to Yati and asked her about little Aisya. Then she’d hear some who’d say, “Ya Allah, kesiannya dia…” And then there were kids who’d cry when they saw Aisya.

Yati was okay with all those. She was kinda prepared for such reactions.

But what I hate is the fact that there were parents who scolded Yati for bringing Aisya out because their children got scared and cried!

Goodness gracious me, they should have taken the opportunity to explain to their children how unfortunate the little girl was… that they should be thankful with what they have! They should have taken the opportunity to teach their children about sympathy and empathy! Or the least they could do, just drag their children away lah. What right did they have to deny Aisya the opportunity to go to public places? Why scold Yati for giving Aisya a chance to live like other children – going out shopping with their parents etc?

Hmmm… maybe if such people had a child like Aisya, they would probably just lock her up at home?

Which reminds me of the time many years ago when I was at the hospital, waiting for my mom’s medication at the pharmacy. I noticed there was this one child with a cap on, sitting beside a lady. I could tell he was a down-syndrome child. I think he got restless, and uncomfortable having the cap on when it was indoors, so he took his cap off. Immediately he got scolded by this lady (I think it was his mother, but I shall not assume) who immediately put the cap back on, with the front being pulled down a bit to hide his face. Goodness, this person was embarrassed to be seen with a down-syndrome child??? In contrast, a very young couple sitting behind them, who had nothing to do with the child, I noticed were trying to play with the child, making him laugh and smile.

A child is a precious gift – no matter how she/he looks like. There’s nothing to be embarrassed about even if they are physically different from other children – just appreciate them for who they are.

By the way, Yati now opens a food stall right in front of her house. And to keep herself busy, she visits parents with special children from time to time – to educate them, to give them encouragement. Aisya may be gone, but the little girl has turned Yati into a stronger person, whether she realised it or not.

Happy Birthday Aisya!

Remember Aisya? The girl whose story was highlighted by Daphne Ling? If you haven't read about her before, you can read her story here and here.

No, this has nothing to do with any of my HIV families. But today, 1st July 2007 is Aisya's 4th birthday and Daphne and I promised each other that we'd both do a posting on this.

HAPPY BIRTHDAY dear Aisya!

Yesterday, Daphne and I went to menyibuk to Aisya's house to celebrate her birthday. Daphne had earlier just told Aisya's parents, Shahidan and Hayati, that we were paying them a courtesy visit... just to be sure they'd be home.

First, we went to Kinta City, to buy whatever. Whatever??! You see, given her condition, we didn't really know what to buy for Aisya. Clothes? What's her size? Toys? What does she play? Birthday cake? She cannot eat! Aiyoo... banyak susah lor...

Well, we ended up buying some t-shirts for her. The ones for 3-4 years looked rather small, so we bought the ones for 5-6 years. Then Daphne bought some chocolates for Syazwan, courtesy of Nenek (Daphne's mom). And finally we bought KFC (ooops... they don't ban fast food ads on blogs do they? :) ) for our lunch.

Then off we went to their house. That was my 3rd visit. But this time, there was a difference. A pleasant difference. Aisya was no longer the girl who was scared of strangers. This time we saw her smile! This time we saw the playful side of her! What a pleasant sight...

The happy family:
Shahidan, Syazwan, Aisya & Hayati

Oh, of course, she still throws her tantrums from time to time when she doesn't get what she wants. Like when we went yesterday, Shahidan had actually said "Jom" to her... and to little Aisya when her father says "Jom", that means he's taking her somewhere. When he did not, she started to cry. So, off they went on the motorbike for one round around the taman. For a girl who previously would simply cling on to her dear mom wherever she went, I was happy to note that this time she was not so scared of people. She's a very brave girl now!


Feeding time for Aisya. Sorry dear, no birthday cakes for you...

By the time they came back, Aisya was much happier. Syazwan was happy enough with the chocolates given by Nenek Ling :) and the Chicky Meal we bought for him; while we had fried chicken. Aisya? Sorry dear, no cakes or any solid food for that matter... just her usual liquid food (see pic above).

Big brother Syazwan, enjoying his drumstick.

And the t-shirts? They fit Aisya just fine!

You can read more about the visit and updates on Aisya at Daphne's blog.

But wait, there's another thing I wish to highlight. Yesterday we also found out that Aisya's a big fan of................. ready for this?

M A W I !!!!! (world!)


According to Hayati, since Aisya was younger, she always seem to love listening to Mawi's voice. Well, she can't see, so she can't be going ga-ga over his looks, right? At first I thought maybe there was one particular song she loved. But no, Hayati says Aisya had been a fan of Mawi since his Akademi Fantasia days, it didn't matter what song he sang. And whenever Aisya cries, if suddenly she hears Mawi sing ANY song, she'd stop crying. Oh wow...

I'm not a fan of Mawi, but hey, since Aisya loves him so much, maybe for Aisya's 5th birthday, we can put Mawi in a big box, tie a ribbon around it and send the box over to Aisya?

OUCH!

Oii, who threw that rotten egg?!

House visits over the weekend

I keep a log book to jot down details of all my contacts with my PLWHA clients. Whether they are telephone calls, house visits or outside meets, I jot them all down. I’m not really an organized person (you should see the table beside my computer table at home – it’s a MESS!), and I was never the type who kept a personal diary either. But I needed the log book so that I wouldn’t forget whatever follow-up actions that I needed to take. And so that I’d remember when my next house visit is due – especially for families with babies to whom I need to send supplies of milk powder and diapers. Furthermore I’d need to write a contact report every month for my NGO’s records.

And no, the log book is needed not because I have a lack of memory! It’s just… just… oh well… a surplus of forgetfulness… ;-)

I will be doing one house visit today. I am going to visit Shah’s family. Will bring along some diapers and groceries donated by some good Samaritans… and the milk powder I managed to “hijack” from private clinics, you know… the free samples they usually get in boxes. Rather than keeping the milk powder in their clinics until they expire, might as well give them to me and I’ll distribute them to the needy families. I will also need to hand over this month’s bus fares for the schooling children – it is covered by my NGO’s Children Education Fund.

Yesterday however was a slightly different visit. It had nothing to do with my HIV work, so I don’t have to report this one to my NGO. With my new friend whom I just got to know a few days ago through the blogosphere, I went to visit little Aisya. Yes, I went with the person who highlighted the story in the first place, Daphne Ling, who so happened to be back in Ipoh over the weekend to hand over the contributions collected from her college mates.

When we (Daphne, her parents and I) reached the house, Syazwan, the couple’s 7 year old son was helping his father wash the car. Little Aisya, as usual, was being cuddled by her mom, Hayati. She’d never let her mom go. She may not be able to see, but she knows very well her mother’s touch.

One glance, the family seemed to be doing okay. They have a house to live in and they have a car. That’s the impression you get if you don’t know their story. That’s the excuse given when their application for financial aid was rejected – they have a house and a car. The rationale – if the family is really going through hard times because of Aisya’s condition, then they should sell either the house or the car!

Sell the house? Then what? To rent a house they’d need to pay rental. That still requires money. Bad idea. Okay, so sell the car. Right… that means they need to use public transportation to bring Aisya for her hospital appointments – including the appointments in KL. Uhhh… not a good idea either. They have to bring along so many things including some medical equipments for Aisya wherever they bring her… and with Aisya’s condition, it won’t be easy!

The house and the car were bought when Shahidan (Aisya’s father) was still working. Due to Aisya’s medical treatment, he had to take leave from work quite often. As a result he got sacked – without compassion.

But this is a strong family. They are not simply sitting down doing nothing waiting for people’s sympathy. They are not about to leave everything to fate.

Shahidan however has had it with working for others. Aisya still needs a lot of medical attention and that means if employed, Shahidan will still need to take leave quite often. So they (Shahidan & Hayati) have decided to do a small business of their own – from home.

We had the chance to taste some home-made pizza – Hayati makes really nice pizzas! Daphne even had a second helping (Sorry Daphne for telling the whole world… Ha! Ha!). Yes, they sell pizzas… and dadih (curd) – cappuccino and strawberry flavour – also home made… by Hayati herself! Wow!

Shahidan will be attending an entrepreneurial course by MARA soon. Hopefully after that he will be able to run a more proper business – with financial help from MARA.

They are going through difficult times at the moment, especially with Aisya being a “high-maintenance” child, but with their determination, I believe they will survive. They are grateful to all donors, most of whom have remained anonymous, whose contributions have not only lessened their financial burden, but have also given them some hope. Most of all, they are very grateful to Daphne who highlighted their story. Before this, they said, nobody seemed to care. But after Daphne highlighted their plight, contributions started to come in for little darling Aisya.

Indeed Daphne had done a good job. Mind you, she’s only 21 and she has already made a difference. Me? I am only s l i g h t l y more than… DOUBLE her age… :-)

Now, what had I done for the community when I was 21? Allow me to list them down… let’s see… hmmm…. Aiyah! Nothing lah… all I cared about back then was myself…