Raising A Child With Down Syndrome: A Mother's Story

Pooja Maheshwary , 16 Jan 2020
Vivek, Pooja and Norah (Source: Shruti Tejwani)
Vivek, Pooja, and Norah (Source: Shruti Tejwani)

A few weeks ago, I came across an Instagram handle that caught my attention. The feed had pictures and videos of a young mum and her child who has Down syndrome. What really piqued my interest was the positivity and love I felt while browsing through their feed, and I felt I simply had to reach out to her and learn their story. What followed was a conversation that stayed with me long after.

Read on to know about Pooja Khanna and Norah Mittal, a mother-daughter duo that is changing the narrative on children with special needs one post at a time!

The Beginnings

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#Truthtalktuesdays . To all New Moms whose children came with a diagnosis —— . It was such an exhilarating feeling when we were holding our child for the first time.We felt a range of emotions with every fibre of our being.In the midst of this outpour, we were told that our child whom we had carried for so many months, with whom we imagined a life full of dreams didn’t come but instead came a child who turned our dreams into our biggest nightmare. That sense of betrayal, anguish and grief felt so real at that time.Our emotions were left ablaze!! . To all the moms going through this feeling that feels so real right now and wondering if they will ever feel differently,If they ever will be happy, if they ever will smile, if they ever will feel alive, if they ever will feel anything apart from what they are feeling right now..The answer is—ABSOFREAKINLUTELY!! . When life hits us hard and breaks us, it builds a new version of us, a better version of us. We pick up the pieces and make something we never imagined out of it. It is human nature to do whatever it takes to survive. Consciously or unconsciously we learn to adapt. We change. We make our life whole again. Those broken pieces then fit so well together, we feel like it was supposed to be that way all along. . We somehow rearrange the broken pieces of our life so beautifully that every time we fix a piece of the puzzle differently we get a whole new perspective. . I could not have imagined the life I am living today. I could have dreamed a million beautiful dreams but it would never match up to the life I am LIVING today!! . So mamas hang in there! You are entitled to your pain and your grief. It is real. But the beautiful life that’s waiting ahead of you with your child is also real!!! It’s just a matter of time before you have a shift in your perspective and see the amazing life you will build, and the joys you will experience inspite of all the struggles that come your way!! . The grass will always be green WHERE YOU WATER IT!!! . . . #theluckyfew #norahmittal #meetthedetermined #warriorprincess #downsyndrome #daughtergoals #happinessisachoice #loveislove #bornthisway #iamworthy

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Norah was born six weeks premature. She wasn’t breathing on her own and was kept in the ICU. The doctors said there was a possibility that she has Down syndrome. Pooja says,

Our first reaction was disbelief. We were in complete denial. It couldn’t be happening to us! We tried to reason it through little excuses… my father too had small eyes, after all.

A lot of tests were done to rule out the condition. And to ensure Norah’s heart, pancreas and other organs were fine. Pooja says,

When the confirmation came through, we took it hard initially. My family was very supportive though, and my husband was amazing throughout. Normally people would look up the challenges or implications of the condition. Instead, he looked up success stories of people with Down syndrome. This kind of positivity helped us start to come to terms with it. He was my rock.

Norah started undergoing physical therapy when she was four weeks old to improve muscle tone and enable her to reach her milestones. Early intervention in her developmental process was key. Pooja goes on to share,

We started seeing her for who she is. You cannot ignore a child no matter what. The needs of children are the same. The more I started seeing Norah the more I realised she’s not very different. We took the help we needed in the form of therapy, and she surprised us since the day she was born by doing things not expected of her.

Norah underwent speech therapy and occupational therapy, apart from what kids normally do.

Thriving Despite The odds

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Disability does not mean Inability. – ❤️Her special need is to be loved the way she is. ❤️Her special need is to be valued for what she has to offer to the world. ❤️Her special need is being different isn’t considered less. ❤️Her special need is to not be recognised for her limitations. ❤️Her special need is not to justify her worth. ❤️Her special need is not fearing her birth. ❤️Her special need is understanding her differences and respecting her for them. ❤️Her special need is changing the world to include her. ❤️Her special need is respecting the time she needs to do things. ❤️Her special need is seeing her inspite of her differences. ❤️Her special need is treating her like a human being not a medical failure. . Be Kind to Differences!!! . 📸 @saurabhpanjwanikidsphotography . #theluckyfew #meetthedetermined #norahmittal #warriorprincess #downsyndrome #advocatelikeamother #diversityandinclusion #choosetoinclude #sparkjoy #confidentlybeautiful #lifeoftheparty #daughtergoals #proudmama #breakthestigma #changingperceptions #changingthefaceofbeauty #breakingthestereotype #changingthenarrative #notspecialneedsjusthumanneeds #happinessisachoice #bornthisway #dontlimitme #iamworthy #iamenough #decembertoremember #strongereveryday #buildingherlegacy #borndifferent #thisisus

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Exposure is key for learning for any kid, and Norah’s family includes her to be a part of everything they do to help stimulate her mind. Pooja says,

We treat Norah like any child. My friends have kids of their own, and I see each kid is different from the other. Even in one family, each sibling has different personalities and strengths. Just because a child comes with a label, doesn’t mean they don’t deserve the same opportunities.

Pooja dotingly adds,

Norah is very friendly and makes friends easily. Her school’s environment is very inclusive. The other kids help her if they see she needs help, and it isn’t like their parents or teachers have told them to do so. It’s something I feel we need to learn from kids—they don’t see each other as different. She’s a happy, confident kid and irrespective of what you think of her she’s very comfortable in her skin.

Norah loves music and every day, her family does a lot of signs and songs with her. She sings with signs, and learnt to dance even before she walked! 

Challenges

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Before the therapy session in Hyderabad in the waiting area— . Mama- We all have to exercise to become strong Nori!! Look mama also gets tired after exercise. Mama can’t do everything either. It’s ok.. we do together!! . Norah- Ok! You do!!!! (So I had to do those crazy things in the waiting area!!) . Mama- See Nori, mama can’t do everything, mama needs help too!! We become stronger together ok? . Norah- Ok… k..k… strong!!!! . Last picture— Post Therapy captured by papa!!! . . #strongertogether #theluckyfew #norahmittal #meetthedetermined #warriorprincess #downsyndrome #differentandable #bornthisway #daughtergoals #dontlimitme #dontjudgeme #choosetoinclude #changingperceptions #changingthefaceofbeauty #breakthestigma #breakingstereotypes #changingthenarrative #happinessisachoice #lifeofadventure #unlearning #buildingherlegacy #notspecialneedsjusthumanneeds #advocatelikeamother #diversityandinclusion #iamworthy #worththewait #confidentlybeautiful #differentnotless #lovedoesntcountchromosomes #bekind

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Like any mother raising a toddler, parenthood came with its own challenges for Pooja. She says,

There are challenges every other day, be it as a mum of a two-year-old or as as a mum of a child with special needs. Norah’s currently going through the terrible two’s phase, with her tantrums and all, haha. She is strong and opinionated and clear about what she wants.

The real challenges, Pooja says, are in dealing with people who are not aware of Down syndrome. Sometimes, parents refuse to let their kids play with Norah as they think her condition is contagious.

Pooja was on bed rest during her pregnancy, and after she had given birth to Norah some people made her feel guilty about that saying things like “had you not been idle during pregnancy, this wouldn’t have happened”. Pooja shares,

Comments like ‘your kid looks Chinese’, ‘she’s already one, how is she not walking yet’ or ‘why does she stick her tongue out so much’ hurt a bit. It’s not a pleasant experience. When you hear, ‘oh, I’m so sorry’ you wish people would realise that it’s not a disease, Norah isn’t ‘suffering’. No, she’s not a ‘Down’s baby’; that’s not her identity. She is  a person first and her diagnosis comes later. At the same time, I understand it comes from ignorance. And we’ve received a lot of love from others, and that’s what we focus on.

Pooja explains that people compare because they don’t know any better. And she chooses to speak up on social media to help everyone understand that children are not so different. It’s a way to help normalise the situation, and when other parents of kids with special needs see Norah’s videos (both the good and the bad) it’s almost like hope for them and makes them realise that the situation is not so bad or scary. She stresses the importance of building empathy… Even for the doctors.

When doctors say things like, “she won’t be able to do much so just give her the love she needs” it makes me angry. They are not really looking at people but defining them with their weaknesses and labelling them with whatever they can’t do. For Norah, it’s her life, she doesn’t know any different. Her determination and resilience helps us stay positive too!

I asked Pooja what kind of support or resources she wishes were available to her in the initial phase, and she says,

When Norah was born, there was no one to reach out to. There were very few people speaking about it. I decided to share my stories on social media to reach out to other parents. Not only did I receive immense support and positivity but in the process, I also ended up helping out other parents raising children with Down syndrome. 

Pooja recommends being a part of a community to help make parenthood easier. And it helps to be vocal when one’s looking for a community. Even when dealing with issues like breastfeeding or latching, a support system helps one know they aren’t alone.

A Day In Their Life

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Medek Therapy Intensive Session- Day 4 . @jojela and Norah are now friends, even though in the video it may not look it but Norah woke up this morning and signed friends to me.When I asked her who was she referring to, she tried to say Jo.I asked her if she meant to say Jo-Anne and she signed “yea yea” and then blew a flying kiss. . Jo-Anne has been working relentlessly with Norah to help her develop stability, strengthen her muscles and in turn develop confidence in her physical ability to walk without the fear of falling. . This has been so intense for Norah, but she has been working hard and the waterworks are subsiding. . This too shall be a distant beautiful memory of all the hard work she puts in every single day!! . These are not her special needs just her human needs!! #daughtergoals #proudmama . . #theluckyfew #gratefulheart #medekexercises #norahmittal #meetthedetermined #warriorprincess #downsyndrome #physicaltherapy #strongereveryday #breakingthestereotype #changingperceptions #changingthefaceofbeauty #advocatelikeamother #notspecialneedsjusthumanneeds #daughtergoals #lifeofadventure #confidentlybeautiful #diversityandinclusion #happinessisachoice #candidchildhood #iamworthy #bornthisway #dontlimitme #nothingdownaboutit #worththewait #buildingherlegacy #lifeisbetterwithyou #changingthenarrative

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Pooja shares that she made a conscious decision to take a sabbatical from work and spend time with Norah—not because she had to do it, but because she wanted to.

So, what does a regular day look like in the lives of the Mittal-Khanna family? Pooja says,

My husband wakes her up, prepares breakfast and gets her ready for school. I drop her to school, pick her up, we go for therapy and then have lunch. Post her nap, we either go to the park, playdates or birthday parties. Once in a while, we’ll even head to the mall. She started walking after the age of two, so right now we also focus on activities that promote walking.

Throughout this conversation, I couldn’t help but be struck by Pooja’s positivity. And if I were to be completely honest, I was in awe of her. I’m sure many others out there are similarly inspired by this mother’s stories. How does she find the strength to maintain a calm and positive attitude? She says,

We all have struggles and challenging days. But when we look beyond those to the smallest milestones we’ve achieved, it lifts us up. Personally, I live off Norah’s larger-than-life drive to thrive, and her carefree nature. We don’t know what the future holds, so why worry about it? We might as well just live and have fun with our kids. If you feel like you’re going through a bad thing, someone’s probably going through a worse time. I simply look for one little joy in a day, every day. And that’s how I remember it!

What’s your story? We’d love to know! Please tell us something about yourself in the comments below.

We often have such conversations on Malini’s Girl Tribe. To be a part of them, join the Tribe here.

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