Penang Down Syndrome Association  

DECEMBER 1999

AKAN DATANG?

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Pada 18hb. Disember, 1999, Jam 6.30 hingga 10-00 malam, bertempat di Dewan Bosch, Dewan Masyarakat Penyayang, satu parti Millenium akan diadakan. Tetamu kehormat kami ialah YAB Tan Sri Dr. Koh Tsu Koon. Semua kanak-kanak di bawah 10 tahun dan orang –orang dewasa istimewa akan.diberikan satu beg parti. Tetamu undangan Malaysia yang mashyur , Mohan (Siao Hei) dan Ah Chan, pelakon terkemuka Hong Kong akan menolong memeriahkan lagi majlis ini. Lagu-lagu, tarian-tarian , drama dan satu permainan muzik oleh murid-murid dari tadika-tadika, persatuan-persatuan dan sekolah-sekolah istimewa  adalah di antara acara-acara yang akan diadakan. Semua kanak-kanak yang mengambil bahagian dalam acara-acara tersebut dan individu-individu istimewa sahaja akan diberi makanan di penghujung majlis ini. (Ada juga terdapat satu majlis mengalu-alukan kedatangan Ah Chan di lapangan terbang Pulau Pinang. Sila telefonlah kami jika anda berminat untuk menangkap gambar bersama Ah Chan.)

 

Oleh kerana kami menganggarkan sebanyak 750 orang akan datang pada malam itu, majlis ini hanya terbuka kepada ibubapa dan anak-anak sahaja. Sila jawab sebelum 9hb. Disember, 1999 kepada telefon Puan Tan (017-4791963) ,Puan Pau (2833354) dan Puan Sharifah (2826248) . Kad jemputan anda hanya boleh didapati daripada Cik Lay Bee (tel: 2202195) di GMC dari pukul 8.30 pagi hingga 5.00 petang selepas 14hb. Disember 1999.

 

Mesyuarat Agung 1999 untuk semua ahli-ahli persatuan akan diadakan pada penghujung bulan Januari 2000. Sila hantarkan borang-borang keahlian anda secepat mungkin jika terdapat perkataaan ‘No’ di sebelah nombor keahlian anda di bawah alamat anda.

 

7^TH WORLD DOWN SYNDROME CONGRESS held on March 23^rd to March 26^th , 2000 in Sydney Convention and Exhibition Centre, Sydney, Australia. Registration procedures and brochures are available from our website.

LIFE WITH ELIZABETH  contributed by Mr. Ung Chin Teck.

 

As I watch my daughter , Elizabeth , play with her brother the other day, memories flashed back to the year 1994, when she was born. I can still  recall when the gynaecologist  brought  her to me. She was a bit dark, I thought . Other than that there were no noticeable differences. The doctor said “It’s a girl, Congratulations!” and took her straight into the room. After some time he came over to talk to me. “ How’s the baby, doctor?”. I asked.“ Well, she’s alright except that she has a bit of a ‘ Mongoloid ‘ features.“ What do you mean, ‘Mongoloid ‘? ”. I almost yelled at the doctor. “Mongoloid, is a term used to describe babies who have Down Syndrome. It’s a kind of abnormality due to genetic disorder during pregnancy.The normal characteristics are ;  slanted eyes, fat fingers, Simian crest and protruding tongue. I am not sure yet and will have to refer to the paediatrician for confirmation. He will explain the details to you later.”  The gynaecologist  then went back to continue his work.

 

I felt as if a thunder had struck me on the head. What’s this‘ Down Syndrome?’.  What’s this slanted eyes, Mongoloid features and so on……? All this sounded so negative and frightening.. Can’t they have better words to describe?  I have waited for nine years and this is what I got.!!. Oh, God ,why must you be so cruel.?  What have I done to deserve this?   Questions after questions kept swirling through my head. I wanted to blame the doctor for not conducting a test on my wife earlier during the pregnancy. It must have been at least half an hour before I realized I was standing at the middle of the aisle of the maternity ward. It’s no use blaming anyone.

 

‘What should I tell my wife?’ I suddenly asked myself. I realized that she was just across the room. I was  to go in to tell her the good news. ‘ Should I lie to her or should I tell the truth.?’ ‘ What have we to discuss?’ ‘What’s the future going to be for her.’ The paediatrician had given me some notes on Down Syndrome. In the contents it had information, but what I could remember were all the negative aspects like : short life, heart problem, clubbed foot, inability to conceive, vulnerable to diseases and so on.‘ My god!, I said. How am I going to handle this situation?. I cannot take it!. I finally collected my composure and went in to see my wife. My wife was not aware of anything. She told me that this time the delivery was easier than the last. I nodded my head and pretended a smile. After she stopped talking, I sat beside her, hold her hands and then told her what has happened.  ‘Mummy, ( that’s the name I call my wife ). We had a ‘ Down Syndrome’ baby. She is not normal and the doctor will have to perform a lot of other test to check her health.. They have to check her heart , lungs , blood and everything . I remember after this I left the room . She wept.

 

I drove and drove without knowing where I was going. Suddenly I found myself staring out to the sea at Batu Maung. I sat on some  rocks and kept thinking. It must had been a good  hour of soul searching before I come to terms with myself. There was nothing I can do to change. It was God’s will. I decided to return home. The next day I called the office to take a week off  from work . I called up my sister who then called up the pastor. She flew up from KL and together with some friends and relatives came over and  prayed for me. I was never a religious person until that moment . I felt good after the prayers. The prayer team then tried to console me. I tried to control myself but tears just flowed from my eyes. It was the most traumatic day of my life and I could not believe such misfortune could happen to me. I then realized that in life, one has to be prepared for any eventualities. I have been through ups and downs but never one as traumatic as this. Five years have gone by now. Did I regret Elizabeth was born to me?. No.!

 

Everyday, my wife would drive her to Grove Road  Special School.  She will happily tug  her schoolbag under her arms and wave goodbye. She likes going to school. She has improved on her motor and verbal skills. The teachers have been wonderful and there are so many activities to keep her happy. On  weekends, I will sometimes take her on outstation trips. When I was working in PJ I used to take her to Singapore,.KL. Melaka, Johore, Pahang Trengganu and  Genting Highlands.  She is  active, stubborn, lovable and a ‘ joy’ to everyone in the family. She is so much a part of the family and my wife and I treat

her as such.  We give her all the love we can and try to accommodate her temperaments. Knowing that she is ‘one track-mind’ we try to reason and talk to her to make her understand. She will then respond with a hug or a kiss. This is happiness. As I looked back I asked myself, how lucky I am to have Elizabeth. Nothing in the world can bring such joy and  happiness than to have her.