My journey with Norah started on a really bad note. Our introduction to each other as mama and daughter was definitely not a happy one. I never in my wildest dreams imagined me having a child with special needs because things like that don’t happen with us, that was my opinion.
On the other hand, my husband had 15 seconds to process the new information given to him before me. He held my hands and whispered, “Everything will be ok, I got you!” We were standing in the NICU and I imagined the worst after he said that to me, but when the Dr said, “Norah has Down Syndrome”, I went blank and went back to thinking the worst that I was imagining was still better than what the doctor had just told me. Then Vivek turned around and looked into my eyes and repeated, “Everything will be ok, I got you!!”
Even though I was a complete mess, Vivek stayed strong for Norah and me. I cried for hours and he just kept holding me. No words were spoken, the room was filled with white noise. He just kept holding onto me until I fell asleep. The first thing he Googled after that was, “Successful people with Down Syndrome”. There were pages and pages filled with different individuals with Down Syndrome and their achievements- successful entrepreneurs, supermodels, dancers, Olympic level gymnasts and the list went on.
For one month he kept showing me videos, documentaries and ted talks of people with Down Syndrome. He kept defending Norah’s existence in my life and tried to show me her future!!
Slowly we started to resonate on the same page and he didn’t have to prove my daughter’s worth to me anymore! A father who loved his daughter and never saw anything different and a mother who needed to be shown her daughters worth, that was our beginning! Vivek has been Norah’s biggest cheerleader from the day she was born and continues to do that every single day!!
The reason I am where I am today with my thoughts and words is because of him! I owe him immense gratitude to help me realise that Norah is so much more than just a label.
He doesn't get enough credit but my daughter is a firecracker because she has him for her father!! Our life is better because Norah and I have him in our lives and as much as I give Norah credit for changing my life, I have to give Vivek credit for making me see that and always being my biggest strength. Choosing to be happy and seeing the best of what life has given us is a choice we have made and Vivek and I both are working towards creating an awareness and a label-free, inclusive environment.
Every child has its strengths and weaknesses but no child can be defined by them.
No child is labelled with their weakness.
Like I say each human has different needs and Norah’s needs are also human and not special. They may be different from my needs and mine may be different from yours but it doesn't make my needs special.
Parents of kids with special needs are not lucky or special, they are ordinary people put in unordinary situations and they have to learn how to do their best to help their children. We as parents are fortunate to find help and ask for it because we know we need that before we can help our kids. So the faster we help ourselves the better we are at helping our kids. This is what I learned from my husband.
People ask us a lot of questions about Norah's health which is great because there is no wrong question and the more you ask the more you understand
We are more alike than different! Some frequently asked questions:
•Did you know pre-birth about Norah’s condition?
No, we didn’t know, Norah was diagnosed at birth.
•Did it happen because you were on bed rest during your pregnancy, or did u eat something, or did it happen because you went through trauma during pregnancy?
Down Syndrome aka Trisomy 21 happens at conception where the third copy of the 21st chromosome is replicated so instead of having a pair like everyone else, Norah has 3 copies of 21st chromosome -Trisomy 21.
•Do all kids with Down Syndrome need therapy?
Kids with Down syndrome have low muscle tone. Physical therapy helps increase muscle tone which facilitates gross motor skills. It also helps them form the right posture and prevent poor compensation of movements. Speech therapy helps improving communication skills, oral motor skills, learning and using language to communicate. Occupational therapy helps develop fine motor skills.
•Why early Intervention?
Early intervention helps accelerate development, enhances the ability to achieve their milestones and helps with their cognitive development.
•What is your daily routine?
Our daily routine starts with waking up and doing our oral motor exercises followed by brushing our teeth, breakfast time. We go to school Toddler's Den every alternate day for a parent-toddler program. Then post-school we have therapy.. evenings are mostly spent either going to a play area or horse riding or catching up with her bestie Innaya or music class.
Our routine except therapy is pretty similar to everyone else. It’s not hard work all day every day, or let’s just put it this way…some days are great and some days are terrible because she’s a toddler not because she’s a child with Down Syndrome!!
•Are you worried if you have a second child, what if she had special needs too?
Yes, that thought crosses my mind and it did even when I was pregnant with Norah. Life has its way of helping you steer through it and it’s up to us how we choose to see it positively or negatively. I never dreamt of having Norah in my life but I am only thankful each day the way things turned out!
•Do you ask yourself why you?
Yes, when Norah was born, I asked my self that question a million times a day.. and then slowly it became a few hundred times a day and now when I ask that question in my head once in a while… I have an answer— BECAUSE SHES HERE TO BE MY CHEERLEADER WHILE I CHOOSE TO CHEER HER!
She’s here to help me see the beauty and reach out to others and help people show ability.. to be the best advocate I can be to show her worth…because she will be absolutely fine in the world… it’s the world that needs to change their perception.
There is nothing that she needs to change about her. it’s the world that needs to change to include different people like Norah and not discriminate based on differences.
She is the change I wish to see in the world!!! I want people to see the world through Norahs eyes because the world Norah sees has more beauty, happiness and everybody is worthy!
Parul Gupta
Mansi Zaveri
Neha Savla
