One extra chromosome. Just one extra chromosome can change what life is like for a newborn baby…
I remember when my mother told me she was pregnant; I was almost 12 years old. I noticed her stomach growing, but I never imagined it could be a baby. I always wanted to have a little baby sister, so when I heard about it, all I could do was pray that the baby was a girl.
One Friday morning, I woke up to find that no one was at home except my younger brother. My dad called to say “Your mom has just given birth to a boy.” My baby brother Hiyab was born that day- July 22, 2010. I was in ecstasy- all had gone well, and there would be a little baby coming home, even though I was still a little disappointed it wasn’t a girl.
Until the moment that Hiyab came into our life, I didn’t know I was capable of loving someone so quickly. I could be feeling absolutely nothing and then just watching him smile, I would feel everything. He was beautiful. He was ours. Just as his name conveyed, he was hiyab, a gift.
Almost a month after Hiyab was born, he started to develop flu-like symptoms. We took him to a hospital and got more information than we bargained for, because we found out then that he was born with Down Syndrome. We didn’t know what Down syndrome was. We didn’t know what it meant to be born with Down Syndrome. In our minds, questions swirled. Would he live? Would he die? My mom spent the majority of the next hours crying. We all were scared of the ‘bad news’. We could already see the pity in the faces of those around us. We were all afraid, because we were already fiercely in love with our baby boy Hiyab.
“He was beautiful. He was ours. Just as his name conveyed, he was hiyab, a gift.”
Hiyab is 10 years old now. He is growing slower than his peers, but growing at his pace. He started to walk on his own when he was 5 years old. Though it is hard to choose from all those beautiful memories my brother has given me, when he started to walk on his own for the very first time has to be one of my favorites. We were all waiting for that moment desperately and he amazed all of us so much that we all cried tears of joy. That was when I felt like I achieved my life long dream of taking a walk with my little brother. He can now read the letters of the alphabet though he can’t yet write most of them. He speaks well, even though there are words only we can understand. He can use the phone well. He even fixes stuff and shows how things are done to my parents. He is our little tech scientist.?
Some things and most people are worth fighting for. My brother has shown me time and time again that he is worth fighting for. I see how people with disabilities are treated and ridiculed, and as in many other countries, people with Down Syndrome and other disabilities face many challenges here in Ethiopia. It is often viewed as a curse in most communities. I want people with Down Syndrome to be accepted and loved and enjoy life to the fullest. I hope that one day people will see them beyond their disability. And that is what I am trying to do with my social media platform.
I started being active, because I thought I should start being the voice to such beautiful souls like my brother, breakdown stereotypes and to show that a life with Down Syndrome is a worthy and meaningful one.