WHEN my eldest boy was born more than two decades ago, it never occurred to me that I would be unceremoniously thrown into the unchartered waters of caregiving. The word caregiving was never in my vocabulary — at least not until I started writing this column seven years ago.
I knew of caretakers, but my knowledge did not include caring for someone that went beyond the normal timeframe and expectations. I knew of those who cared for the sick and bedridden, but I never gave it a second thought. After all, it was someone else’s problem, perhaps a vocation even. Likewise, with adults taking care of their ailing parents, or parents caring for their sick child. It was simply something you did at some point in your life.
“Above and beyond the call of duty” was reserved for those who served the nation such as soldiers, police, all uniformed personnel, nurses and doctors. Mothers are thrown into the mix because being a mother is definitely a full-time vocation.
Like other married women in their 20s, I was looking forward to motherhood and prepared myself for some sleepless nights. Never in my wildest dreams did I imagine I’d have a physically and mentally challenged child, diagnosed soon after birth.
At just 3 days old, my son Omar’s intractable seizures were threatening his life. He was given various medications that didn’t help at all. Finally just before his second birthday, Omar underwent a radical brain surgery which finally stopped the seizures. It came with a heavy price. Our precious firstborn was finally seizure-free. However, the procedure left him with both physical and mental disabilities. Omar became a hemiplegic whose left side is stronger and dominant, resulting in him walking with a pronounced limp. He can’t speak, because that was the part of the brain they had to remove.
We were just grateful we didn’t lose our baby. It wasn’t easy though, coming to terms with his disabilities, but looking at our beautiful baby’s struggle for survival made us resolve to fight this battle with him and for him.
We went in with our eyes wide open and fully aware of the risks. The choices were heartbreaking: Death due to uncontrollable, intractable seizures — or a fairly good chance of survival after surgery but with delayed milestones. We also had to deal with the reality that surgery would come with its own risks, which could be fatal for our child.
So it wasn’t much of a choice, actually. So many cliches came to mind including “caught between a rock and a hard place” and “die trying”. The latter soon became our battlecry.
The good news is that Omar did catch up with his milestones after surgery. However, it wasn’t in the same manner other children his age did. He had to be taught to do everything. His brain needed to be “reprogrammed” because nothing came naturally to him with the exception of hunger and discomfort.
Our journey with Omar has taken us many places and we’ve chalked up so many experiences with all sorts of people, both good and bad. Sometimes these experiences can make you stronger, others can make you want to throw in the towel and give up.
Thoughts of giving up occurred many times but I hardly dared to give it a voice until many years later when I was told it really was okay to talk about it. It lifted a load off me to realise that just because you talk about giving up doesn’t mean it will happen.
In truth, talking about your struggles to trusted people or your counsellors will, in all probability, be the best thing to do. We are, after all, human with our own frailties and shortcomings. Sometimes talking about it can lead to solutions that you may have never considered before. Sometimes it can give you the strength to carry on.
There were days when I’d look at Omar’s schoolmates at his special school who seemed to be better off than him. They could walk, talk and do things like normal children. They were able to express their thoughts and feelings. These children are “high functioning” special children who could be integrated into society and be somewhat independent. That wasn’t the case for my Omar.
Then there were those who seemed to have it worse than my son. Some cried all day without any trigger nor reason. Some were bedridden and many had so much less to go on with. With God’s blessings, that wasn’t my Omar either. He is generally a happy boy.
Of the children who were in the same Early Intervention Programme with him from ages 1 to 6, only Omar and another boy survived. The others did not make it.
We are immensely thankful to God for showing us that life is indeed precious —with all its challenges, tragedies and pain. It has not been an easy journey, having gone through the rollercoaster of emotions from plunging to the seemingly bottomless pit and then rising up to reach such impossible heights. This in itself is a gift and we receive it with gratitude.
This gift has a name, and his name is Omar. He turns 26 today.
Happy birthday Omar, with all our love.
Putri Juneita Johari, volunteers for the Special Children Society of Ampang. You can reach her at firstname.lastname@example.org
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