How I Look at the World Differently Now

Tuesday, October 31, 2017

October is Down Syndrome Awareness Month in America. Riding on their campaign, I'm doing my part over here to raise awareness and spread some love for people with Down syndrome, one story at a time. For this special month, I invite you to hear from my friends in the Down syndrome community in Singapore. Today, we have Ilyana on my blog to share the lessons she has learnt as a passenger on this journey with a child who has Down syndrome.
Guest contributor:
Nur Ilyana

(When Mary invited me to write on her blog, my mind raced at 150 km/h. My writing bug has come alive, after years of being suppressed! I was itching to write! I was thinking of all the topics that I could write about, pertaining to Down Syndrome. I was excited, to say the least. Literally minutes after the invite, I immediately penned down my draft.)

Before I dive into the topic at hand, allow me to give you a brief backstory. (Disclaimer: the word ‘brief’ is used loosely here, hehe)

My two elder kids, Adrianna and Aniq, are typically-developing children. They’re the most awesome siblings to Alyssa, my youngest. She has Trisomy 21, which is commonly known as Down Syndrome. I only knew of her condition when she was born, more than seven years ago. From December 2009, my life has been painted with a myriad of colours -colours which I did not even know existed. To say that it has been a roller-coaster ride is an understatement.

Before becoming a SAHM, I was an education officer. The passion started off with relief teaching when I realised that engineering wasn’t my forte. Then in 1999, I served my six months of contract teaching, and then to NIE, after which I became a full-fledged teacher. Fast forward to 2010, when Alyssa was several months old, I decided that everything was too much for me. I left the service, and have been a teacher for my school of three ever since. :)

I believe that everything happens for a reason. And I believe that all my years as an education officer culminates in me being able to understand how a child’s mind works, and have a relatively good grasp of the basics to teach Alyssa.

It has not been easy, I must admit. I was initially struggling to cope with reality, with my emotions, with society’s perceptions, all at once. They say when it rains, it pours. And oh boy, did it pour! Unknown to me, a storm was coming my way. The weather quickly started to change for me. Sunshine was replaced with dark skies. And one of the biggest pills I had to swallow was the stigma of not being like any Tom, Dick or Harry. Society’s perception of being ‘different’ was harrowing. Back then, I used to notice every single look that people were giving her. I became paranoid and got so worked up every time someone stared at her. I remember feeling like giving them a piece of my mind, every time it happened. I used to cry my eyes out behind closed doors, almost every single day. 

Lessons on having a strong Support system

Thankfully, over the years, with my strong support system, I was able to change my outlook on life as a whole. I got over the denial, the grief and became stronger, in every sense of the word. Never can stress enough how pertinent a strong support system is. I’ve got a wonderful husband who quietly supports every move I make. Him just being there for me, is all that I can ask for. My family members rally around me, giving me moral support and words of encouragement. Their smiles give me much hope for the bleak future I used to think Alyssa would have. Friends, they come and go. I must admit, it’s through this testing period that you know the true meaning of friendship. As a staunch believer of ‘everything happens for a reason’, I know that those who left have imprinted their footprints and made a difference in my life, one way or another. When one leaves this weary heart of mine, another enters. I’ve made wonderful new friends. People who walk the same scenic route as me. And as a bonus, I’ve managed to rekindle old friendships -something which I think would never have happened if Alyssa had never come into the picture. Cause it’s with her existence that old friends start to reconnect (via Facebook and Instagram) and offer their words of support.

Lessons on Humanity

Over a span of seven years, I’ve begun to view people in a different light. As I ignored the stares, my focus shifted to the more positive side of humanity. I see more people smiling at Alyssa and me. They smile with such kind eyes that made me change my whole focal point. I paid more attention to those smiles and less on the stares. I remember asking myself what have I been doing all these while, concentrating on the negatives? I slowly gained my confidence, smiling back, and at times, striking conversations with total strangers. #faithinhumanityrestored

Lessons on Ability

Back when Alyssa was just a few months old, I started reading up on what Down Syndrome was all about. That was a big mistake. As I researched more into it, I got more and more depressed. It snowballed to a point where I gave up and saw no hope in her future. I must say that the books that I’ve found in our libraries were not much of a help to shed positive light onto this condition that I knew nought of. All I read was what people with Down Syndrome could not do, what kind of medical conditions and complications they can develop and the most depressing of all, the short lives that they will lead. I immediately stopped. I focused on Alyssa’s developments. Trying hard to forget the pessimistic views that were at the back of my mind, I started to care for her, like how I did for my first two children but paying more attention to her delayed developmental areas. 

As she grew, I noticed that taking care of her wasn’t that much different from how I took care of her elder siblings. I distinctly remember the first time I saw the potential in her. It was when she was four months old. The books that I’ve read all told me how she will have low muscle tone, how she was gonna be floppy, her neck muscles are not going to be strong, etc. To me, she defied the odds, when at four months, during tummy time, she could hold her head up for a long period of time. Her eyes were bright and alert. At that moment, I decided to ignore all the inane information, and instead, devote my time and energy to give her the education she deserves.

A more recent ‘WOW’ moment Alyssa had was just a week ago. From being able to spell two- and three-letter words back in K1 and K2, my heart was filled with so much joy and pride for my little girl when she started spelling words like ‘nightmare’ and ‘quiet’, and also phrases like ‘foot of the bed’ and ‘as soon as’. Even the mistakes she made were minor -missing only a letter or two. What was more impressive was the fact that she had only practised the ten words and phrases just two days before her spelling exercise. I had underestimated her and she has proven me wrong, yet again.

This has spurred me on to continue teaching her and imparting as much knowledge as I can to her, because I know she’s learning all that is being taught to her. Though she might not regurgitate immediately, she’s absorbing the information, keeping it for another ‘wow’ moment in the future. *wink*

The bottom line is, do not let anything or anyone confine you to what you are able to do. Your ability is a combination of nature and nurture. It’s what you’re born with. And nurturing that innate ability will help hone it even further.

Lessons on Being Positive 

When things happen, especially when things I plan do not go my way, I take it as a sign that it’s for the better. Or that it has been replaced by something even better. I refuse to take it as a setback. Instead, I change it to an opportunity. A learning point, if it concerns me. And a teaching point, if it involves the kids. It is so much better to view it as such because mulling and complaining over something which is out of your hands is so very draining. It drains you of your energy and your capacity to move on. If it rains on your parade, just open your brolly and continue walking. Your clothes might get wet, but hey, standing in the rain won’t help, will it? Before you know it, the sun’s come out and the rainbow you’ve been waiting for is there, just for you!

I’m thankful to Alyssa for this journey which has its stops and starts. Without her, I would not have been able to re-look my view on life and be forever thinking that we have to be the best, the first at everything. We must be fast. We must climb to the top. Everyone is in it to win it.

Everything has changed for me. It’s such a beautiful world that Alyssa has shown me. 
You don’t need to be the best to be happy. You don’t have to be fast to be numero uno. You don’t have to win at everything. Be content. Be grateful. Be HAPPY. :)
About Nur Ilyana

Ilyana is a mother of three: a “newborn-mother” of a teenager, a soon-to-be “tween” and a primary-one-going child. The three children are her light, her heart and her soul. Seeing them grow and become the person each of them is now and will be, is a wondrous process for her. Connect with Ilyana on Facebook or Email.

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