One fine day, few months ago, while browsing instagram, I came across a post of a little baby who had the most prettiest eyes. From the post, I got to know her name is Norah, and it was a post regarding ‘Down Syndrome – being different is good”. And that rose my curiosity to check out more photos from @pooja_and_norah‘s instagram account. And I am really glad that I did that. It was Pooja, Norah’s mother’s instagram account, and Norah has Down Syndrome. As we speak, Norah is 23 months old and approaches her second birthday on July 2. And seeing their little baby grow through therapy and beating limitations God bestowed on her each day is how Pooja & Vivek (Norah’s father) cherish & celebrate each day. I pinged Pooja on instagram and she was kind enough to reply back. We had a little conversation about my sister & Norah.
Your child is not like others. She is different. This was first told to my mother when my sister was 4 years, by her kindergarten school teacher. Later on, we came to know that she is mild autistic. And the meaning of different changed for us. We eventually started seeing different as beautiful. My sister is now 21 years old. She is beautiful, compassionate and a very loving soul. We have celebrated “being different” with her since she was small, and we still do!
But it was not easy. All the while I grew up, I have seen society’s perception of being different. And I deduced that noone likes to be treated as different. No one wants to be labelled and segregated from society. No one wants to be discriminated for being different. No one wishes to be reduced to being considered unworthy for being different. No one wants to be different, if that comes with a stigma or being looked down upon. So it’s really easy for us to say that you need to stand out to be remembered because that’s a choice we have when we aren’t born different! The problem lies in acceptance. Accepting that being different is beautiful and good for you and then move on accordingly. When I heard Norah’s story, I could connect so much with Pooja. I really desired to meet Norah and photograph her.
We had infact longed to do a family documentary session/ A day in the life session since a very long time. Pooja instantly loved the idea of “A day in the life” as we explained her. To be frank, we were quite unsure whether Pooja would agree to let us into their lives for an entire day as the prevailing trend is to capture posed photos of babies and kids. But to our surprise, Pooja instantly understood what we were trying to do, and as we got to know more about Pooja we realised her understanding stemmed from the fact that she is a very creative person herself. Pooja left a successful career as interior designer. She was a partner at a reputed firm before she decided to be a mommy full time and currently playing an amazing role as being an Down’s Syndrome Advocate. One of the first question, Pooja had was how the idea came to us. And after little soul search, we realised it is mostly due to our strength of telling stories first as a street photographer and then as a wedding photojournalist. Photos are a powerful medium and a universal language, understood by everyone. A well put photo-essay can convey emotions across borders which words couldn’t describe easily.
We felt just one day in the day of the life of Norah wasn’t enough, so we visited them twice and thought it would be a good idea if we share the photos of both the days (Day 1 & Day 2). Thanks to Pooja & Vivek, who were so welcoming to let us into their space & lives. We are grateful to them for giving us this opportunity to spent two beautiful days with them and Norah. They are surely an inspiration and give us parenting goals. Norah means shining light, & she exactly lives to her name by bringing extra sunshine wherever she goes and whomever she meets. Norah has also been featured in Official Humans Of Bombay, Kidsstoppress, Firstmomsclub, Yoocan, Ketto.
Scroll the gallery below that would take you through the “Day in the Life of Norah” in her own words. Do tap on the image to read the caption 🙂
A DAY IN THE LIFE OF NORAH : DAY 1
A DAY IN THE LIFE OF NORAH : DAY 2
As we got started with the project ” A Day in the life of Norah”, we had some imminent questions regarding Down’s Syndrome. There is a lack of awareness which is very much prevalent in our society, which is why we got Pooja to answer a few questions, and she opened up heart for us. We are sure most of us would find this helpful 🙂
1: What are the limitations a child faces with Down Syndrome. When a child is born with Down Syndrome he/she comes with a label. This label has a lot of negativity around it, so already the child has to fight the label to show its worth to the parents to begin with as opposed to a typical child being born and being welcomed with open arms and big dreams.The biggest limitation that a child with Down Syndrome faces is the limited perception of the parents for their child,giving the label more importance than the child. Due to low muscle tone and if they have congenital issues, their physical milestones get delayed but that is not a Limitation. Their intellect may vary but that is still not a limitation because each child comes with limitations. Our biggest limitation is our own thinking for people around us who are different. They aren’t the ones limited, we are!
2: How do you think therapy plays a role in the development of a child with Down Syndrome?
Early intervention plays a very vital role in the physical and cognitive development of a child with Down Syndrome.Physical Therapy helps them strengthen their muscles,improve their motor skills, gives them good postural alignment. Occupational Therapy also helps with fine motor skills so that they are able to perform their daily tasks. Speech therapy helps them with speech and language development so that they are able to communicate with everyone and be understood. Some individuals also need behavioural therapy to help them with the emotional difficulties that may come with Down Syndrome.
3. How has Norah changed your lives?
Norah has been a life saver. Where I drew my happiness from mostly everything external, where I put success charts based on my achievements, where I believed I knew what unconditional love was, she changed all of that. She made me realise, that life could be simple and being happy was my choice. Projecting my successes and failures on external factors wasn’t really the best way of seeing my self-worth.
She saved me from the rat race of life that I was living. She helped me calm down and enjoy life for how I wish to see it.There are always 2 sides of a coin. Norah helped me realise that, all I had to do was flip my coin and see the bright side. She helped me change my perspective on life. She made me more able than I was before her. She continues to help me rediscover myself and try to live life to the fullest and own my differences like she owns hers!! The biggest thing she taught me was Unconditional Love!! We always say, I love you no matter what.. but do we really know what that truly means.She taught me the “no matter what” in unconditional love!
4. What role parents can play in shaping the lives of the children with Down Syndrome?
If only someone could show me a glimpse into my life now I would’ve never been so shattered and I would’ve figured that everything would be ok and actually better than I would ever imagine my life could be. Even though I couldn’t get a glimpse into my own life, I did get a glimpse into many other happy lives of families who had children with Down Syndrome. These adults are thriving and doing great things in life,breaking stereotypes and living their life to the fullest. What was common among all these successful people?— Their support system-Their parents treated their kids with love. They did not limit their kids to anything. They believed their kids were worthy. They did not give them any special treatment. They were treated equally and were given equal opportunities right from home. They were taught to be proud of who they are. Their parents may have struggled to show the worth of their kids to the world but they taught their kids to raise the bar inspite of their differences.They never saw the label, they saw their children for who they were.
So that’s what we all need to learn from parents who have come before us and have raised their kids with Down Syndrome with love and pride.Drop the label,don’t focus on the limitations and teach them to love who they are and be proud of themselves and own their differences!! Educate people around you because you also walked into this life without knowledge. So be kind to others who may not get you as parents and some who maynot understand your kids worth.. it’s ok!! That doesn’t define your child or you as parents!! When we know better we do better!!
6: Lot of parents worry about the future of their child. What according to you can the society do in order to make it easier for children with special needs and their future.
Every parent worries about their child’s future because we all want the best for our kids.I try not to think of the distant future and live in the present. I try to work towards short term goals with Norah so we are able to see the positive side of things where she is working hard at being able everyday.
We need to change the way we look at our kids before we reach out to our society.If we don’t believe they will be ABLE enough to live independently when they grow up and we don’t believe that they can have a good life, we can’t reach out to the society and preach that.So by giving our kids equal opportunities from home and not giving them any special treatment we are building an environment for them where they will learn to thrive. By creativity a positive and healthy environment at home and giving them the tools that they need to be Able, will help them develop into good human beings who will live independent lives.
We as a society need to learn about different abilities. We are still taught archaic theories on Down Syndrome and the archaic stigma attached to it continues to scare new parents, where as Down Syndrome is nothing like it was decades ago.With the scientific progress life expectancy has increased and the quality of life has improved drastically.We as a society need to learn to be kind and not judge people based just on their intellectual capabilities. We as a society need to start creating a diverse and inclusive environment in our own communities and give individuals with different abilities equal opportunities so they can also be contributing members of our society and live independent lives.
7: Do you think meetups of kids with Down syndrome and their parents can help, and if yes, in what ways.
Our community is small and we all need each other to not feel like we are in this alone. So meet ups where there is a sense of positivity would help all of us immensely. Meet ups will also give a chance to welcome new parents where they can see the true life of an individual and parents of individuals with Down Syndrome. Meet ups would immensely help parents who have younger kids to get direction as to how they could help their kids reach their highest potential.
The sense of belonging comes from a community where everyone feels welcomed and no one feels judged! Where all thoughts good,bad and ugly have a place without any judgments and that in turn can be very therapeutic for the parents too.
Meet ups can also include a lot of activities for kids so it’s fun for them to hang out together and learn from each other!!
The main aim of meet ups is recognise the bond we all share because of our kids and to take pride in their achievements and their hard work. To value our kids,because of whom we can have a community who will be there with us with open arms without wallowing in self pity and darkness!!
They say Special Needs Parents are 200% more likely to consider suicide. I know this may not be because of the Disability but it could be because the parents themselves have had no time to take care of themselves and have burnt themselves out for their kids without addressing their own physical and mental health. So meet ups will definitely help in addressing needs of the parents which is most important.