I wrote this piece when I was about 16 or 17 for a speech contest at school. Almost 9 years later, my sister has finished school and is on her way to university. It has taken Allah’s grace and mercy, all four of us in our family, sacrifices, compromises and countless dedicated teachers over the years to make this happen. My sister is honestly the most motivated and strong-willed person I have ever met, and my mother is the personification of love, support and patience. This piece will forever and always be one of my favourite things ever.
I would be lying if I said that any of it is easy but I wouldn’t change a damn thing because my sister, and all people with Down’s, can brighten up the world with their unconditional love, their smiles and their hope! She’s taught me more about being, than anything or anyone in this world could and I thank Allah swt everyday for blessing our lives with Habon!
A Smile of Down’s Syndrome
You see I have this friend. Actually she’s more than a friend, she’s my other half, my role model… my sister.
The first day I met her, it was the summer of ’97, she smiled at me, forget my mum she was too tired to realise, she smiled at me and marked my heart forever with a smile of Down’s syndrome. She looked at me and whispered:
“I have a deal to make, more like a proposition actually and it is imperative that you understand it’ll last for my entire lifetime. You see these stuck up doctors in white coats and nurses in blue scrubs don’t think I can make it, no-one thinks I can make it but I’m telling you I will make it because you will help me make it. I will feed of your hope and you’ll carry me over the highest mountains and I will reach my goals for I am not less worthy than any other child in the world… you won’t regret it. But if you don’t help me I will tell mum.”
That’s when I knew the stubborn, annoying younger sister character had arrived in my story.
When children taunt her at school she comes crying to me and I feel her pain for we are bonded by a pact, mentally we are bonded, we are bonded psychologically. But sometimes I might shout at her and she will freeze in her position and look around for help, while her tiny eyes fill up with salty tears and her lower lip will start to tremble. Her eyes will fixate on mine and I will feel so guilty and I won’t be able to breath almost like all of my internal structures are disintegrating like her pillars of strength, courage and confidence are, because the one person who was meant to carry her along for as long as she lived just broke the alliance with a frown of Down’s syndrome.
You see she is also a music fan and she loves to dance, you should see her, when she hears a beat it travels through her, goes through every nerve, hits every vital organ, touches every part of her body almost like an electric shock except this is good feeling. She moves her feet faster than you can imagine and her shortened face looks as animated as when you see dancers battling it out on the street in the YouTube videos. She’s my role model never afraid of pursuing what she wants and chasing it down and when she gets a grip on it pulls and tugs and tows, heaves, jerks and wrenches it in and looks at it and smiles almost as wide as the day we signed our pact and she exhales slowly and says “you’re not going anywhere”.
Ladies and Gentlemen, my role model has an extra chromosome 21; this condition is called Down’s syndrome. Individuals with Down’s are more susceptible to diseases such as leukaemia, defects in heart and brain formation and are generally slow learners, they are what doctors would call ‘mentally retarded’. They are the sweetest individuals one will ever meet.
Although living with a person with Down’s syndrome can prove to be tedious at times and emotionally devastating at other times, I have to say that it has been the experience that has made me a better person. Research tells me that my sister wont live a long life or it is rare for a person with Down’s syndrome to live long, but she’s marked my heart forever and our bond runs in our genes it won’t go away even if she is gone.
So I’m telling you to reach out to that person everyone outcasts, who knows maybe they’ll mark your heart too.