August 1998.
In a dimly lit hospital bed of a government hospital in Delhi was a couple, whose life was recently jolted by a massive wave.
They were blessed with a baby girl. She had a disability.
New parenthood often brings with it a new set of vocabulary. But for my folks, it meant not only acquainting themselves with pediatric jargon but also learning names of illnesses and disabilities that sounded more like tongue twisters and names of nuclear missiles.
Their life ahead was lined with challenges. But more than that, there was uncertainty. What was a disability? Why couldn't I walk? Would I be normal ever again? A million questions raced in their minds.
One of the earliest indications that I had a disability was that I couldn't walk. "Only a miracle could have her stand on her own feet," the doctor informed them.
What followed was the long stride to find a solution that could make life better. Physiotherapies, occupational therapies, MRIs, X-rays, muscle biopsies. You name it and I would have undergone it. After almost six months of running from one hospital to another, they finally found it.
Not a cure. But a name.
Arthrogryposis Multiplex Congenita.
My condition now had a name. It meant that my joints couldn't function as well, I had low muscle strength, and my body needed support for everyday activities. My parents had to be with me throughout.
So, while my dad went to work, my mom gave up hers to look after me. Her dream now was to see me fulfil mine. Her face lights up like the brightest of firecrackers whenever I accomplish something. Because it is her dreams coming to life, bit by bit.
Throughout, she's been my back, both literally and figuratively. She knew I had a life unlike the other kids (come on, I'm not 1 in 3000 for nothing). She also knew that I needed her to be able to live that life. So, she set off, like a brave, headstrong, and fiery woman, on a journey to build my life. From scratch. Like a creator.
First, it was the society that she had to battle. When a child has a disability, the first question is why. Why do you want to raise her? Why do you want to send her to a school? Why do you want to take her to dance classes? Why should she even have a life? What good is that, anyway? The society thinks that a disabled child is a waste. So, my mom fought these questions. Her idea was simple. If other children could, her child could too.
The next question was how. How are you going to send her to school? How is she going to cope? How can she study? How can she paint? How can she dance? Sure she can't. Because there were no ways through which children like me could do these things, Mum made sure that she became the medium. She stayed with me in school for 12 years because the school did not offer support. She took me wherever I had to go, often carrying me in her arms because people still thought that disabled people were meant to be locked inside the house. She even accompanied me to my dates and parties, not because she had no choice but because she wanted me to have a life as normal as I could, and she left no stone unturned to do that. My friends say that my mom is cooler than me. I second them. She is the coolest, bravest, and fiercest of all!
Today, 25 years down, I looked back and finally understood what the doctor meant. Only a miracle could make me stand tall despite having zero muscle strength in my legs and encourage me to chase the sky...
and that miracle is my mum.
