A Life Less Ordinary, More Then Perfect

Even as you read this, I’m sure you are wondering why a life that is less then normal can be more than perfect. This is the paradox of the world and it will always be there.

“Jessica! Where are you?” I shouted. It was a sunny day and I brought my sister out to enjoy the company of my friends. It so happened, that she wandered away from the group and was lost. We searched everywhere for her but to no avail.

Jessica Szeto Pei Ying, age 16, about 130cm tall, short black hair and wears glasses. This is the person I love most in this world. My sister was born 2 years after me and she has Down’s syndrome. Not knowing much about DS, I grew up throwing tantrums and many a times made a fool of me just so that my parents, relatives and friends would notice me. What could I do? I was only 8.

As I went through primary school, my sister went in and out of the hospital countless of times. She would see doctor after doctor and when she was not, it would be a therapist. I spent my noons after school at the hospital daily. My refuge would be the television room at ward 55, on the 5th floor. I rested there, played there, studied there and cried there. Even now, I can still smell the disinfectant that would linger over the low, green, cushiony chairs of the hospital grounds.

Now why would God allow someone so precious to go through life like that? I believe it is to teach what no other can impart. A person with Down’s syndrome is no more handicapped than a person who struggles through his own imperfections to live his life to the fullest. To be given the privilege to live with one so special is more than what I deserve. The trials that came into my life would have engulfed me if not for her. When I was scolded and beaten, and had no more tears left to cry, she would stand there and cry with me. When I was afraid and thought of running away, her simple words of, “Kor Kor (Brother), I love you.” would lift me up. I could not understand how she, who is denied so many of life’s pleasures, is able to see so much pleasure in what little she has. Maybe it is I who is “disabled”.

The years went by and I’d be lying if I said I wasn’t jealous of Jessica. Everyone seemed to love her more. My self-pity blinded the love that surrounded me as well. By God’s grace, I started to see the light some more years later and took an interest in helping people. Changing the core foundations of any building overnight is near impossible. It seems that the building would first have to be brought down. I broke through my comfort zone and did something that changed my life forever.

The time came when Jessica had to be admitted into the hospital for some checks. It was the school holidays and I volunteered to be the sole person to stay over night at the hospital with her. I was 11 going on 12. It was frightening and I remembered checking on her as and when I could and time passed so slowly. Every minute felt like an hour. But, I was laying new foundations. The old building was demolished.

Then came the teenage years. Through the course of my 4 years in secondary school, my sister continues to amaze me and now I see which road I am headed for in life. I only want what is best for her.

The process of self renewal gave me other valuable soft skills that improved me as a person as well. This is very important as Jessica looks to me as a role model. My desire to help, teach and lead others spurred me to pursue a dream to touch and change lives. Towards the end of my secondary school education, I decided once again to break my comfort zone by gearing to enter the Early Childhood Field. I felt that to help others, I needed to know how one develops. I always had Jessica in mind as I made life changing decisions.

The road of our friendship and love for each other never ceases. I would sometimes sit and think, what would happen if she was no longer a part of my life? I don’t think I can live to the fullest if it ever happened. I started to treasure and remember each and every moment spent with her. Even the simplest things we do together like going shopping would be enough to keep me going.

People who have children, parents, siblings or relations with disabilities have 2 main choices in life. They can choose to see it as a gift or as a curse. Ultimately, the choice taken is determined by one’s attitude. No man is an island. Family, friends, strangers who showed love - these people are angels who made my life and that of my sister’s more meaningful. I thank you if you are one of them. But if you are not, I thank you as well. You have shown me a different perspective of life.

There is a mindset in society that views people with special needs as being incomplete. Sadly, some parents and siblings are ashamed of their own child and brother or sister respectively. I feel that the innocence of people with special needs sheds a light on our imperfect world. Acceptance runs both ways. True acceptance brings joy and the joy people with special needs bring to those around them comes from their whole-hearted being, deep within. I thank God for you Jessica for accepting me as I am.