Doctors dismissed Saharsha Bekkers as a “lazy” baby. As she approached her first birthday, she could only roll halfway and could only sit if propped, and even then she needed to use her little hands to hold herself upright. But as the weeks progressed without improvement, the Singaporean-born girl’s mother, Nabanita Sen Bekkers, grew increasingly concerned.
“Just like every other Google- and Facebook-enlightened mother of our age, I began to panic and finally decided to take her to a physiotherapist,” the 35-year-old told Mamamia. “The physiotherapist only took a moment after seeing her to refer us to a neurologist.”
Given the symptoms and Saharsha’s 10-week premature birth, Nabanita and her husband, Harald, were told to prepare for a diagnosis of cerebral palsy – an umbrella term for movement disorders caused by damage to the brain, generally before or shortly after birth. But when it came, the forewarning had done little to soften the blow.
“[We] were shattered. I didn’t know to whom I should turn or where to find peace. While our friends and family were all very supportive, we felt we were on a completely different boat, as no one else we knew had dealt with something similar,” she said. “We went through the usual emotions of sadness, anger, despair, and [to process them] we went for a week to a remote island in Vietnam and drank copious amounts of wine.
“However, Saharsha was always our saving star. She has a smile and a laugh that can light up any dark day. So I would say, in the end, our love for Saharsha was stronger than any other emotion we felt. We knew we had to make it work and make sure we give our little girl the best shot at what life has to offer.”
Nearly three years on, that smile is reaching thousands via an Instagram account Nabanita started to chronicle her daughter’s incredible life. It’s called Chronicles of Zhazha (Saharsha’s self-appointed nickname.)
“Saharsha in her wee three years has already lived in three countries (Sri Lanka, Singapore and now Australia) and travelled to over a dozen, spanning from the US to Fiji. Then I thought why not showcase that to everyone, to also show that being differently abled doesn’t necessarily limit you from living your life to the fullest.”
Paralympian Jessica Smith lets us know how best to speak to kids about disability, and how she answers their most curly questions. (Post continues below.)
She’s also become a champion for inclusive fashion. Saharsha loves clothes and accessories, and she and her mum use the account to represent small Australian labels that are helping to undo industry stereotypes.
“You can be fabulously cool, brave and happy in a walker, just as you can without a walker. Beauty comes in all forms, and Chronicles of Zhazha is our attempt to spread that word,” Nabanita said. “I hope that one day we will see more ads that include children who are differently abled, and instead of saying ‘Wow, that brand has a child in a wheelchair’, we don’t even bat an eyelid as that is the norm.”
But it’s also about instilling that message in her little girl.
“I hope I manage to give Saharsha the confidence to realise that she can do anything as long as she puts her mind to it, because I honestly believe so,” she said. “I also hope that this confidence helps in making her a stronger person, so that in the future she stand up against bullying and any other prejudice that might come up on her way.”
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Of course, as she gets older, Saharsha is recognising her CP more and more. Though she can sit unaided and can stand and walk with her walker, she requires help with transitional movements – getting out of bed, into her walker, onto a chair. She also needs a helping hand with tasks like putting on her shoes or using a swing at the playground. She undergoes physical therapy several times a week.
“This is the life we know, that she knows, so I do not know how it would be otherwise,” Nabanita said. “So we try not let CP limit us. We might need to think a little harder about how to make it work, but we do things that we would have done regardless.”
Sadly, it’s other people that make Saharsha most aware of her difference. A passerby who asks what’s “wrong” with her, a relative who assures her parents she will eventually be “normal”.
Today was one of those days. I got asked three times by three different individuals what is wrong with Saharsha as she was walking with her walker. There’s absolutely nothing wrong with her you ignorant bafoons, what’s wrong is that the world is filled with ignorant people such as yourselves who don’t know any better than to also ask in front of a little child what is wrong with her! I didnt say that but I did say that there is absolutely nothing wrong with her, she only has cerebral palsy. Zhazha is strong, fierce and happy, take that world! #mommyhood #fashionblogger #followme #photooftheday #follow #swag #cpwarrior #cerebralpalsyawareness #cpawareness #grind #prematurebabies #picoftheday #instadaily #raisingawareness #brightandbeautifulbabes #specialneeds #specialneedskids #ignoranceisnotbliss #strongandhappy #nimbowalker #cutekids24
“Just the other week I was walking in a shopping centre with Saharsha and [her 14-month-old sister] Anwesha, and the girls were having a blast chasing each other,” she said. “I could see one lady nodding her head in pity from a distance, pointing at [Saharsha] to her friends. That’s OK; I usually ignore it. But then the lady actually walked over to her, stopped her and started telling her, ‘You poor poor girl, I am so sorry for you.’ She didn’t mean bad at all, but no one – not even a three-year-old – needs or deserves that.
“I politely told her, ‘Do not give my daughter your pity, as she doesn’t need it. She is just another happy three-year-old enjoying roaming around the mall. The next time you see another child in her walker, say how amazing she’s walking and how happy she looks!'”
As Nabanita wrote on Instagram after the relative’s “normal” comment, no, Saharsha may not be able to walk on her own, “But she can light up [a] black hole with her sheer presence. She knows names of almost all dinosaurs and can count and knows all her alphabet. She has the kindest heart and the ability to love unconditionally. She can sing from her heart and her eyes dance when her feet give away. She knows how to say the lamest jokes in the funniest ways.
“Who said I wanted normal?”