The Shock Of My Daughter's Cerebral Palsy Diagnosis, And How We Learned To Embrace It

Being told that your child might not be able to walk without support isn’t something you can ever be prepared for
Harald Bekkers

Being told that your child might not be able to walk without support isn’t something you can ever be prepared for. And that pretty much describes what I often feel: out of control, unprepared, trying to reinvent a solution every time in my role as a parent to a child who is differently abled.

My daughter Saharsha, now three, was diagnosed with cerebral palsy at one. Cerebral palsy is an umbrella term for a condition that limits a person’s ability to move. The neurologist got off his chair and walked with an exaggerated gait, showing how the legs might scissor if Saharsha eventually learns to walk. And with that diagnosis, we were left out in the cold in Singapore with a recommendation to go for physiotherapy to teach Saharsha to move.

My husband and I survived the diagnosis. It gave us pain and anger, we cried and screamed and finally we learnt to accept it. But that was just the beginning.

In the Asian sub-continent, we are often conditioned to only talk about our strengths. Strengths are meant to be shared, bragged about, while weaknesses/flaws are personal, and need to be carefully dusted and hidden under the carpet. And that’s what I also did in that first year when we found out about Saharsha. For that one year after her diagnosis, I “fakebooked” about my imperfectly perfect daughter. We were living in Sri Lanka at that time and I only posted carefully selected photos of her sitting and not the remaining 95% when she would topple over as she lost balance when unsupported, and of course never standing as I didn’t have any of those. I only felt at ease talking with my immediate family or closest friends about it.

At the same time, Saharsha continued to grow into an incredibly happy child. When most children of Saharsha’s age can do what they want, Saharsha needs my help to even get out of bed. She can walk with a walker, but needs help in her transitions of getting in and out. A simple task like brushing her teeth requires perseverance on her part as she needs to work on balance and sit and keep her hands steady. While children of her age can play around to their heart’s content, Saharsha leads a much more carefully planned life filled with physiotherapy, swimming, occupational therapy, personal training, speech therapy, and soon, horse riding. Yet she finds joy in the littlest of things, and is full of enthusiasm for life. That was the time I had a realisation: I could either shy away from facing life, and pass on society and my own inhabitations to my child, or I could take the cue from her and teach her that just like everyone else, she too can achieve anything as long as she works hard for it.

It is still a tough ride especially since people tend to point out our differences. One day when Saharsha, in her walker, was playing with her younger sister Anwesha a lady came up to tell her how deeply sorry she felt for her. Saharsha looked at her in utter confusion. Similarly, I have people telling me how sorry they are, that they will pray for Saharsha and of course my favourite, “She will become normal.”

Cerebral palsy is not a disease and can someone really define normal? For us, this is the only life we know. Sure, we need to make small adjustments, but it hasn’t stopped us in anything. Saharsha has already travelled to over a dozen countries with her walker right from getting a surgery done in America to feeding the giraffes in Kenya to eating the best congee in Vietnam to building sand castles in pristine Fiji. Who said I wanted normal?

Thus, we also started to document Saharsha’s journey through an Instagram account, Chronicles_ofZhazha. It began as a way to document our incredible journey. Soon enough, our followers started increasing. Through this account, we started advocating for inclusive fashion. We wanted to show that you can be fabulously cool, brave and happy in a walker just as without it. I hope one day children who are differently abled are featured just as regularly as typically developing children in mainstream media.

We are very normal people, maybe living under extraordinary circumstances, but we hope to give Saharsha the confidence to stand up against bullying and any other prejudice and also realise that she has every ability to live her dreams. That girl whom they said might never be able to able to walk, has started walking with sticks and can balance herself to stand for a few seconds without any support. Anything is possible.

This piece was originally published here.