The Joy Truck (tv programme)

Prompted by the special needs support group, Dez and I watched the first episode of The Joy Truck, featured every Tuesday night, 8pm, Channel 8. Today's first episode was on three families with their special needs children.

Zoe Tay and Huang Biren was stunned and speechless when they first saw the children. The three children were Chloe (Pompe disease), Grace and Jarren (congenital hypomylinating neuropathy). We knew Chloe and have seen Grace during last year Christmas party. I have seen Jarren in school though I do not know his parents.

Zoe Tay broke down completely when she saw that Jarren was crying so hard but there was no sound coming out (because he has a tracheostomy). She said that it must be so painful for the parents to be unable to hear his crying as crying is what normal children do easily.

I recalled the first time that Charlene cry so loud that the whole NICU could hear her, I was so proud and happy. But when she kept crying non-stop for the last few months of her life, there were times I got angry with her. I feel so regretful now as I can never hear her cry again.

As parents of special needs children, our wish is so small.That our child will still be alive when we wake up, that one day our child will call us Mummy and Daddy, that our child can give us a hug, that our child is healthy and happy. These are the things that any normal child can do and are taken for granted. For people with normal children, their concerns are which good school to enrol their child, which enrichment programme to send their child to. In a sense, though our children suffer because of their medical condition, they also get so much more love from their parents (unconditional love) with no lofty expectations to be fulfilled.

The parents also shared in the show the rejections they face from society. Whenever the children are in public, carrying their assistive devices and wheel chairs, the people looked at the children as if they are zoo exhibits. Charlene is fortunate in the sense that she doesn't have a tracheostomy or any assistive device like oxygen machine on her. But because of her unusual head shape, we are aware of people staring at her and us when we carry her up the bus, on the MRT and in public places. So because of the logistics involved (especially no car) and what is in store for us, some of us do not bring our special children out so often. The show specially allowed them to visit Sea Aquarium after operating hours (kudos to them). I wish I had a chance to bring Charlene there too.  

Many of us have also heard insensitive and hurtful remarks from the public. I have got aunties on the street telling me that I must have done something wrong during my pregnancy or I have sinned badly in my past life. Even comment like "why don't you have another child? The next child will be cleverer and healthier."  To the special needs parents, we feel that if someone has nothing encouraging to say, they may as well keep quiet.

One of the worst thing we heard was in response to Chloe's condition. Someone left a message on the Rare Disease Society website saying that the special need child is the family problem and they should not seek help from the government because if the government subsidizes their family, the taxpayers have to pay more income tax.

To that someone, when you are old, can I also ask the government not to subsidize your healthcare cost so that I don't have to pay extra taxes?

The show also had an online game where the game score will be converted into donations (max of 10K) to the Rare Disease Society. It was heart warming to see that within 1.5hrs after the show, the amount donated raised from 4K to 10K. There are people out there who care. Perhaps, one day, the hope that our special needs children can be accepted and cared for by our society can be achieved....