syukur

his name is a play on the word “syukur“, meaning “thanks be to God“.

his mother had dangerously high blood pressure during her 32nd week of pregnancy (pre-eclampsia, for you medics) and he was delivered via caesarian section. “i’ve heard of how doctors always show babies to their mothers once they’re born,” she said, “i knew there was something wrong when they didn’t let me see my son.

he was taken to 3 separate wards in the days following his birth, whipping his mother into a frenzy in the search for her child. she got nothing but vague responses when she queried his whereabouts. she knew things weren’t right, but she had no answers.

when she finally got to see her baby, she was told he had cerebral palsy.

that was 18 years ago.

since then, she moved back to her hometown. she and her husband decided that it would be best if she worked and he stayed home to look after their gift from God. they brought him everywhere – to weddings, funerals, offices, shopping malls. they felt he needed the exposure and made it a point that they were not ashamed of their child.

he is very sensitive to sounds,” said the proud mother, while her son was strapped onto a contraption that allowed him to stand and relax his flexed muscles. “i’m sure if he were normal, he’d have become a sound engineer.

while the physiotherapist worked nearby, using various tools to exercise his coordination skills, his mother recounted the instances where his powers of observation surprised even his parents. there was a tinge of regret as she spoke of how he’s closer to her husband because he’s the main caregiver, but there was no denying her love and devotion for her one and only child.

the doctor actually apologised and told me that he should have given my baby oxygen sooner instead of placing him in the normal ward for neonates,” she said with bitterness in her eyes. “it was like a tailor expressing his regret for wasting cloth because he made a wrong cut. but a tailor could alter the clothes he made. who could repair my child?” she continued, “quicker thinking could have saved my baby from this fate.

i was both saddened and encouraged by her story.

although there are still doubts as to what causes cerebral palsy, delay in giving oxygen to a premature child is among the postulated theories. of course it could very well be multi-factorial, but this story serves as a reminder that i will need to be constantly vigilant in performing my duties as a doctor in the future. there is no excuse for incompetency, there is very little room for error. i could deprive a person of his future as a sound engineer.

however, the healthcare staff were not the only ones who had a hand in altering the course of his life. his parents’ decision to treat him as a gift rather than a curse has granted him as normal a life as he could possibly have. he enjoys riding in the elevator, he teases his physiotherapist, and he looks forward to sessions at the clinic because it means going for breakfast at his favourite coffee shop afterwards. it was uplifting to know that he is loved and cared for with such devotion.

there is no doubt his parents must have had some tough times during those 18 years. decisions to make, money to spend, family to face. parents of children with disabilities often experience frustration and exhaustion; frustration that their child cannot develop normally and cannot do the things other kids can do, exhaustion that they have to invest so much energy into caring for their child. let’s not forget the financial burden of seeing multiple specialists, trying alternative treatments and therapy sessions.

but i am so glad they chose to say “syukur” for their child. i wonder if he knows how blessed he is to have parents who are so willing to love him.

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