“When Norah was born, we found out that she had down syndrome. There was definitely the grief of an imagined life that we were going to live. Whatever we had planned for us, our future, and our child was thrown away. My husband, Vivek, was pretty calm and confident that we would deal with it. I, on the other hand, took some time to come around. Knowing that my daughter came with so many limitations, I was concerned if she would ever be accepted in society. What if she gets bullied? What if she is not able to have a good life? What if she is not able to go to school? What if she is not able to have friends? As a mother, I had a million questions. ⠀
At the time, I did not know much about down syndrome. I wondered whether people would be okay having someone different from them around. So my initial focus was on helping Norah getting into society. I wanted to put her in a box to make sure that she is exactly how other people are. But, over time, I have realized that I don't want her to fit in. She was not born to fit in. All the concerns I had about her stemmed from my own insecurities. It had nothing to do with her. Moreover, I didn't think of inclusion then. The only thing that was going on in my head was "Will she be accepted?" instead of "Will she be included?"
A month post Norah was born I started to write about her which started to create a safe space for me to discuss and raise all my concerns with a larger community part of this new world that I was introduced to. That is when I truly learned to accept my new life and this wonderful little baby in my arms and the possibilities we could create for her. I want people to be sensitive enough to know that she is different. That's who she is, and it's okay to be different. It is okay to have a life different from yours because all our lives are so different from each other.⠀
We decided that we were going to live by the day. Planning our lives clearly didn't work out for us. We often want to box ourselves into somebody else's life because we think it looks so much better. But why does it need to be exactly how you imagined it? I didn't want to limit Norah's future with my limited imagination. We will let her flow the way she is flowing. I have no idea where this is going to go, but I know that she is leading a good life because she is happy at the end of the day. She is healthy, she is among people who love her, she may be taking her own time to do what she loves, but at least she is doing it. I have come across people who are genuinely sensitive about Norah and those who are opinionated as well. Some might say something offhand, but I don't think they all come from a bad place. It is just ignorance, I was ignorant at one point in time. It has taken me having a child to evolve and come on the other side. So I can't expect everybody else to understand.
She is growing and getting stronger. Also, people are able to understand her a lot more. So I think she, too, is slowly getting comfortable being around other people, especially family. She has just started mingling with kids her age. She understands that she is not able to do certain things as easily as the other kids. So, at times, if she gets intimidated then steps back only to get used to that person in couple days again. She mostly gels well with older girls because she almost looks up to them. She loves feminine things. She has hardly seen me wear make-up, but when we are stepping out of the house, now she always says, "Mama lipstick!" Then she will check herself in the mirror and pout even when there is nothing there.
We taught her sign language- things that she needs to know, things that she can tell us without feeling restricted for when she cannot use her words. We worked on her being able to express herself. Every day we start with simple signs, a lot of which we're still learning through songs. We wanted her to be independent enough to know hunger, know when she is full or wanted some more. We taught her to express basic emotions and activities her life revolves around. Her association has become so much better that now if she is trying to tell me something and I cannot understand, she will sign it for me.
It is important to remind ourselves to take it one day at a time. You cannot think of the future because it is going to be drastically different and much better than what you imagined, might I add. We all have our stories. But life is not made up of just one. You cannot live with one story. That's the important thing.”