My Son, Walter

I have a 5 year old son, Walter Sangking de Run. He is my joy.
Each time I see him, I feel like hugging and kissing him, even when he is naughty.
Walter was born on 24 February 2003 at the Sarawak General Hospital. Just after his birth, we noticed that he was rather limp and hadnt done his 'business.' A doctor came to see us, after we (my wife and I) became worried and started asking around, and simply stated 'Your son has Downs,' and left.

We were devastated.

The doctors kept my wife and new born son in the hospital for further observation. My wife just couldnt leave him, got extremely stressed out, crying and just devastated and we watched him in the special room they had for him.

Seven days later, our son turned blue. He was then rushed for an operation. He had Hirsprung Disease. My wife collapsed with very high blood pressure and was warded. And by the way, did I tell you that I was finishing my PhD at that time too. I brought my laptop and worked next to my wife, while carrying milk from her to my son every few hours.

I cant tell you of the pain, even now I feel like crying, of seeing my son after the operation. He had sunk, became smaller, a long wound from one end of his stomach to the other, with tubes running in and out of him, and needles potruding here and there. Those were trying times. Sometimes we fought with each other over trivial things, sometimes we just cried with each other. Many a time we stood by Walter and just looked at him.

We are forever grateful to Miss Anne (surgeon) and her staff at the hospital for all they have done. Whenever I can, I get toys and send it to the Paed Ward. We are also thankful to the many people, family and friends who stood by us and helped us through this time.

After some time, we finally could go home. I was so proud. And here the story goes to my wife, for her courage and her efforts in bringing up Walter. Walter had a colostomy bag and a wound that needed to be cleaned. My wife did this every day till the wound healed and till after the last operation that stoped the use of the colostomy bag. And do you wonder why Walter is bald here? This is because they had to shave his head to stick in needles during his operation.

I had to leave to New Zealand to finish my PhD. My wife had some help from my mother, but basicly she did everything. We set up a small tent room in the middle of my in-laws house and placed Walter in it. The sad thing was to stop everyone from coming in and carrying Walter. Some of our relatives didnt understand why we did not allow them to hold Walter and my wife had to bear the 'stories' from certain persons.

We had wonderful help from Datin Linda, who came to visit us many times and shared her experiences and very strong point of view with us on how to care and bring up Walter. She gave strength to my wife, because before this all we saw was difficulties and hardship. Now we saw hope. Now looking back, and through our experience of seeing so many other Downs children grow up and become worthy members of society, makes us hope so much more for our son.

A year later, Walter had to have his second operation. This time it was in Kuala Lumpur. My boy had grown and was so upbeat. We on the other hand were so afraid. The cost for us to be in Kuala Lumpur was high and I must thank Michael for his help and my boss, Shazali, for allowing me to be with my family at that time.

The operation took a long time. Every few hours the surgeon would call us and explain, each time it was bad news. It was exhausting and I worried for my wife who had to take care of my son while I went back to the hotel to sleep. It was an extremely tiring time. But soon even this was put in perspective as we saw other children suffering in the wards.

A year later, and after many visits and stays at the Sarawak General Hospital, the third operation was carried out. This time it was done in Kuching and was relatively short, only a few hours. Yet time was spent at the hospital for my son to recuperate. And I shuttled between work, home, hospital, and in laws house for some time.

Walter now doesnt need a colostomy bag, but because he still cant control his 'business' he needs to wear diapers and we have to still care for his backside. Its still not that good and we are certainly not out of the woods yet. There are constant visits to the hospital and surgeons and ever worry of his health. Yet when he smiles, says a few words, hugs us, kiss us, or even cries, all is forgotten for that brief moment.

Ernest