For many parents of children with special needs, being a caregiver is not a choice. You wanted a baby but that baby turned out to be handicapped. That baby is now yours to love and care for come what may.
When I had Omar, my firstborn, I never thought my life would turn out the way it did. We had waited four years before he entered our lives. And when he did, he was born physically and mentally handicapped, a diagnosis made months later but the abnormalities were detected on his second day of life.
With Omar, my life took a different route from the one I had planned. I thought I could have it all - being a journalist/writer (of the award-winning kind), a mother, a wife, basically, an all-rounder. I had not planned for or counted on frequently being in and out of hospitals for more than two decades now.
I had not counted on a non-existent "me time" or being cut off and excluded from some things. I had also not anticipated on meeting or interacting with different kinds of people in different circumstances. I thought my life would be somewhat secure and revolve around things I was familiar with.
Omar's birth changed all that. My journey with Omar thus far has been about going through unchartered routes and constantly facing the unknown. His diagnosis is West Syndrome, a rare and severe form of epilepsy. The outcome was bleak whichever way you look at it.
If he lived through the barrage of intractable seizures, he would be a child disabled with cerebral palsy, autism, Lennox-Gestaut syndrome or epilepsy.
After surgery at 2 years old, where a small portion of his brain was removed, Omar's seizures stopped for 10 years. As predicted by the medical prognosis, Omar also had a bit of everything that came with this. He was "globally delayed" and would need assisted living throughout his life.
Basics took years to accomplish
Basic things like teaching Omar how to roll over, sit up, sit down, stand, walk, eat, focus on his vision and hearing all became magnified, exaggerated and took years to accomplish. His speech centre was the portion removed from his brain, so he could not speak, but he had to learn how to communicate. And teach him we must.
I was very fortunate that I had assistance from many different people. Most importantly, I came into contact with people who were experts in the field. I also met people who took the learning journey with me as we discovered new things together.
Through working with Omar's special needs, I came into contact with other children and adults with special needs. I learnt from their parents. I gained strength from their wisdom. I learnt that I am not alone in this, and if we get together and pool our knowledge and resources together, we can make a small difference somewhere.
My life certainly took unexpected turns. But you know what? I would not trade it for anything!
In retrospect, after 20-odd years, I had not counted on leading such a blessed and enriched life through Omar, seeing the world from a different perspective and meeting people with depth, character and hearts so big it is humbling.
I learnt not to take things we are born with for granted and to appreciate everything we have. I was given first-class seats to witness the miracle of the human body and marvel at everything we are born with. There I was with Omar, a "broken" baby that needed to be fixed. I had no clue where to begin. As an infant, Omar had cortical blindness. We had to teach his eyes to sync with his brain to process what he sees. We also had to "programme" everything else through a series of regimented exercises.
Having Omar in my life has undoubtedly been the biggest job ever. It has certainly been tough but it is not a burden. Having Omar has been the greatest gift that strengthened my faith in God and humanity, and the opportunity to bond with friends who will be there come what may. It has also strengthened our family ties and values.
Omar turns 21 today. To many, it is April Fool's day, a day of jokes and pranks. To me, this day is always about being given a gift from God, a day of thanks and gratitude that has allowed me to keep my feet on the ground while reaching for the stars. I have seen miracles and I am blessed.
Happy birthday Omar!