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.