Recently, I met up with a cousin, whom I have known and played with since childhood. So, imagine my surprise when she arrived at our meeting point dressed in matching leopard prints all over and a picture of the albino-looking actor in Twilight hanging off the rear-view mirror in her SUV. Not that there’s anything wrong with it, I know……..just never saw that coming from someone I thought I knew well enough. But as we chatted on, I realised she had little to say about her family and preferred to talk about her new business venture and social gatherings that she attends.
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This cousin of mine has two little boys, the youngest suffering from muscular dystrophy. From the very beginning, many of us could see that the baby had some problems with movements but despite our concerns, my cousin never saw it urgent enough to get him checked. Funny the baby’s pediatrician never noticed anything unusual. It was only recently when he turned 2 and was still lying down on his back with difficulties turning over or grabbing things with his hands and had trouble swallowing solids that she finally relented and sent him to be assessed. And that was when it was confirmed that her youngest son suffers from muscular dystrophy.
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Muscular Dystrophy is an inherited muscle disorder that causes progressive weakening of body muscles. As it is an X-linked genetic disorder, this means it affects exclusively the males, with most boys inheriting the mutation from their carrier-moms. According to most researches, there is no cure for this disorder, but with proper therapy and treatments, the progress of the weakening of muscles may be slowed down. But ultimately, those inflicted with this disorder will die young.
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I may not ever comprehend how it feels to know that your baby only has that few years to live but I do know I would be determined to make those few years in this world as memorable and full of love as possible. While there may be no cure, if therapy helps to improve the quality of life for the child, then by all means, I would go to the ends of the world to get that sort of help.
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When I realised my youngest child wasn’t speaking as he should be at the age of two, I knocked on as many doors as I could locate, trying to get a speech pathologist to assess my child. Although most of them told me to wait till he turned 3 for a proper assessment, I insisted that he started speech classes immediately. I remember those years to be full of sweat and tears, but then again, there were just as many laughter and love, because we decided as a family to do right with one another and to stick together in any situation. I’m glad to say that my son’s progressing really well today, doing awesome at a normal school and although he will still need to go for regular speech classes, we are definitely on the right track.
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From the onset of receiving the bad news about her child, my cousin and her husband have used their busy-schedules in their business as excuses to leave him with her parents or in-laws 24/7. Although there are schools nearby with available physiotherapy treatment for special-needs children, the poor boy has never gone to any because both his parents are apparently just too busy for him. Funny thing is that they don’t seem to be too busy for their tri-annual holiday trips overseas or chilling out with friends in pubs and bars.
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Her eldest boy is also not having it good from his parents either. He suffers from acute eczema but because there’s no one to cook nutritious home-cooked meals for him, he continues to suffer from itchiness and broken skin all over his body due to eating at hawker stalls everyday.
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Giving her the benefit of the doubt, I had wondered if the stress of being a mother to a special needs child had anything to do this state of denial or could it be that she’s just too busy to play mummy at the moment.
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I don’t know about you, but I always believed motherhood, or for that matter, parenthood is a privilege bestowed onto us, where we have been entrusted with the future of our next generation, to mould and guild them as well as we can. So no matter how our child turns out to be, special or super-duper special, we need to give our all in nurturing them, even if this means going to the ends of the earth to look for that pot of gold at the end of the rainbow for them. How they turn out as adults eventually will be a testimony to how we were as parents, don’t you agree?
