2008, the year my baby brother Satyam was born. This year was a bumpy ride for my family. We went through disappointment, excitement, nervousness, grief, happiness and all of those mixed up emotions. But what kept us together was hope and belief. We believed that god cannot be so cruel to take away the life of a just born baby who was yet to explore the world in his own way. 2008 had started with disappointments but ended up with happiness.
While my family was going through so much , while my brother was battling for his life, I was sitting at one corner wondering why everyone was tensed , why my mother was crying, why were we in the hospital. I was too small to even pronounce the disorder my brother had, “Down syndrome” it seemed such a heavy word. They said he would be different, he would need a lot of care, and he would not be the same as others. It took me a while to realize that my brother may not be able to call me “dijju” or he will not be going to the same school as me or he will not fight for the remote with me like other brothers do with their siblings. But it didn’t take me much time to realize that we were not going to travel the same path like other siblings, we were about to start on a journey that a very few get to experience, we were taking the road not taken.
When people ask me how it feels like to have a brother with Down syndrome, I just smile and say it’s a new experience with him every day because every day I learn something new about him. I don’t think I would be this happy if he was born as anyone else. His behavior and his habits amaze me. I have no complaints towards god for giving me a brother with special needs because his special needs made me a special sister. Ever since I came to my senses I have had only one goal in life, to never let go of his side and to always give him opportunities which would help him grow. I always had a reason to never give up, be it my studies or be it any difficulties. I had to go on because I was doing it not only for myself but for him too. He is no less than any other normal brother. He makes me angry by not listening to me, he tickles me when he wants to joke around, and he takes selfies with me and pouts better than me, he loves my friends and they love him too. It’s true he cannot express what he feels or tell me what he wants but that’s the exciting part. This is the part where I get to learn more about him, where I observe his way of expressing what he needs. Sure he doesn’t say that he loves me but he expresses it every night when he comes running to my room and covers himself with the blanket so that mom doesn’t take him away from me to sleep with her. That’s when I wonder how many brothers sleep with their sisters when they are 12? Whenever we are in a party or a place where there are a lot of people he looks up and holds my hand because he feels safe with me. So ain’t I lucky? There are very few brothers who express their love for their sisters when they are 12, but my brother makes me feel loved every day.
Satyam changed the lives of all my family members. My mother who always saw herself as a healthy housewife and was not at all interested in many latest technologies or any new ideas of the 21st century is now a well-established lady who is recognized by many as the mother of all the children with Down syndrome who supports and fights for their rights. My father finds time out from his busy schedule to spend time with us because Satyam is very fond of him and loves playing with my father. My grand mom loves him dearly and he definitely is the most loved grandson out of all 6 of her grandchildren. Me, he taught to see good in bad, to take bumpy rides as in the end it is all going to be fine. He gave me the motto of my life “whatever happens, happens for good”. Satyam has taught me not to care about what others think just love yourself and love what you are doing.
People think that having a child with Down syndrome is burdensome and it would interfere with the functioning of the society, but what is society if tie has only people following the crowd, society needs people who bring change in the people, who force them to reevaluate their thinking. Having a sibling with Down syndrome is not a burden, it’s a beautiful experience which if everyone would understand then they would definitely be jealous of the ones having a brother or a sister with Down syndrome. Their extra chromosome makes them extra cute and does not decide the value of their lives!
By Sashakta Thapa
