I was very confused as to why he was there (I obviously couldn't put 2 and 2 together at that age). "Where is mom?" I asked.
"She's at the hospital. She had the baby," he answered.
I couldn't believe it!! I was overjoyed! "A boy or a girl?" I asked breathlessly. I really wanted a little brother to play with because Dilmeet and Paul (or 'Tom and Jerry' as my family dubbed them) were very close to each other. Even though Dil and I are two years apart, my brother and sister had birthdays almost within a year of each other and could not be separated by any physical means. They were joined at the hips, always opting to play together while leaving me out of the loop. I remember praying for another brother to play with; someone I could be best friends with, just like Tom and Jerry. I even had nicknames for us - Roadrunner and Wile E. Coyote.
"Boy," grunted my grandfather. He was never one to elaborate.
A boy!! Oh, boy!!! I couldn't wait to meet him!!! What did he look like? Did he look like me? Would he know I'm his sister? Was my dad there? When could I go to the hospital? Would they come back tonight?
My grandfather just snorted at my questions, not giving me proper answers. But I didn't care, I had a beautiful new baby brother all to myself! Yeah, sure, I would have to share him with my other brother and sister, but we all knew that he was mine really. He was born to be my best friend -- Dil and Paul already had each other. Finally, someone I could go to the park with and dance around with and tease Tom and Jerry with. We would make an amazing team, my new brother and I, always defending each other and pleading our case to my parents.We were going to be unstoppable.
I didn't get to see him that night. I really wanted to.
I was told that he wasn't well and that I was not allowed to visit. I couldn't understand. How sick could he be?
The next few weeks are a blur of visits to the Vancouver Children's Hospital where I would have to wash my hands a million times before entering the ICU. When in the ICU, I still could not visit him - I could only watch as the adults were allowed to get closer to my brother. My brother! Why was I not allowed to visit? I could only look into the room through cold glass windows, pointing and waving, while proudly beaming that my beautiful new baby brother was in there.
As weeks slowly turned to months and my mother was released from the hospital, I still could not understand why my brother was not allowed to come home. And I was still too young to visit him inside those glass doors.
Can't I get closer to him, just once?
I promise I won't touch.
6 months. 3 hospitals. Down's Syndrome.
Down's is a genetic condition where there is a third copy of the 21st chromosome. I remember the nurse used to come by every week and gave my family a copy of "My brother has Down's". This is when I first got to learn about the condition and started to understand that Arjun would never be the brother I imagined he would be. He would always live with a mental disability and because he had secondary and tertiary conditions as well, he may not ever be able to speak or ever function independently.
A lot of people with Down's can dress themselves. My brother can't. Many of them can talk. My brother only grunts or smiles or makes noises. My brother walks hunched over and still wears diapers.
I wouldn't change him for the world. Not even if you offered to exchange him for a dozen brother's who would be the Wile E. Coyote in our dynamic duo.
I'm not going to sugar-coat it and say it's been an easy ride. It's actually been very hard for our family. Can you imagine living in a country not your own, giving birth to a boy with disabilities, and not understanding how to raise him? Not understanding how it could happen? Having three needy children already, making minimum wage, working 7-days a week just to pay your bills. Now this?I remember when I was young, taking Arjun to the park with my sister and he didn't want to come back home. Because he could not communicate his frustration and did not understand why he had to go home, he started pulling my hair and clothes in the middle of the street. My brother may be 9 years younger than me, but he is very strong and when he demands attention, it hurts. My sister and I could not constrain him, and I remember him finally chasing us down the street to our house. He's a hard one to calm down.
You should also never give him pop. Ever.
My sister has had a huge role to play in the raising of Arjun. While I was in university and working, Dilmeet watched Arjun for most of the nights my parents worked. I wish I could be half the woman she is when it comes to loving him. But still, the impact this boy has had on my life is undeniable. I wouldn't have ever done a seminar on Down's if it hadn't been for him. I would never have worked with the special needs kids in our high school program if it hadn't been for him. I would never have had a chance to work 4 years in a community centre working with the most incredible teenagers with mild to moderate disabilities if it hadn't been for Arjun.
I wouldn't have cared. I would never have been exposed to the world of Special Education.
My entire life changed because he was born. The only reason I am a teacher now is because I wanted to get my minor in Developmental and Learning Disabilities so I could work with these incredible children for the rest of my life.
When some people find out that they have a baby with Down's they opt to abort it. They feel as though they would not be able to handle the weight of responsibility of caring for someone who is so needy. I can't even fathom what my life would have been like had my mother been given that opportunity and had chosen to take it.You may not know anyone with special needs, but I can guarantee you that they can teach us more about life and ourselves than we can teach them. We can only teach practical knowledge, but they teach us how to be innocent, how to laugh, how to love unconditionally. Our world is a better place because people like Arjun have come into it.
So happy 16th birthday, my beautiful, innocent, wonderful brother. I miss you so much. I wish you could understand just how much you mean to me, how much I love you, and how much of my life I owe to you.
The day you took your first breath was the day my life changed forever.
Love,
Your sister,
Tanisha
