One Mother's Journey With A Child With Cerebral Palsy |

“Nothing prepares you for parenthood, but dealing with cerebral palsy made us feel like we were parenting blindfolded” – One Mother’s Journey With A Child With Cerebral Palsy

I have always been that person who walked with a spring in her step and music in her heart, but that was before I got struck by real life. It’s hard work, this keeping happy business, and it became easier to fall into a deep dark pit of anger, rage and gloom than climbing back up again and searching for sunshine...

I breezed into my thirties. I had a wonderful family and close-knit friends. I left Bangladesh to study in Canada, scored my dream job living in Cambridge and travelled to exotic locations to help make the world a better place. I even married my knight in shining armour and lived in an island paradise also known as Fiji. Then in 2013, life changed. I had a perfectly imperfect stillborn daughter. My father aptly said to my best friend, “this is real life, you have hurdles thrown at you and you need to move past it.”  And so we did, my husband and I, sometimes by crying together and at other times by drinking copious amount of wine. I consoled myself into believing that no one has a completely happy life and that it can’t get any worse from here. I became pregnant again in early 2014. It was a relatively uneventful pregnancy apart from the careful monitoring due to my pregnancy history. We moved from Timor Leste where we were based at that point to Singapore to have access to all first world medical facilities. On a particularly uneventful day, I put on my PJs dreaming about the Toblerone waiting in the fridge for me when I slipped on the bathroom floor and started bleeding like a scene out of a bad horror movie. I was immediately taken in for a c-section and delivered a beautiful little girl with very weak lungs. Later my mother told me that when she heard that I was bleeding all she prayed for was my survival, which made me feel a pang of anger. There could be no life if I lost two daughters. My mother probably felt exactly the same fear of losing her own daughter in that moment. After seven weeks at the hospital, my daughter was released without any complications. We named her Saharsha meaning ‘Joyful.’ We decided to move to Sri Lanka, where my husband had an office for his multi-country work and had a textbook first year as new parents – no sleep, celebrating every squeal and fretting over every little ailment. But as Saharsha started nearing her first birthday I began to notice that she wasn’t yet reaching all her motor milestones. She couldn’t roll or sit upright unassisted, yet paediatricians in both Sri Lanka and Singapore dismissed my concerns and simply labelled her a “lazy” child. It was only after seeing a physiotherapist in Singapore that we were advised to see a neurologist and get a brain scan. The scan showed Saharsha had suffered grey matter damage in the area that controls motor movement in the brain, and the official diagnosis was cerebral palsy. We were shattered. We didn’t know anything about cerebral palsy, and by Googling we discovered that it was an umbrella term under which fell a large list of motor delays. We saw images of people in wheelchairs, people with severe developmental delays… suddenly, Google became the enemy. How could we cope with seeing our beautiful daughter live a life filled with challenges we couldn’t ever imagine – didn’t we go through our quota of pain by losing one child already?

After the diagnosis we went and hid in a small island in Vietnam for a week, looking at the magical sunset every day and hoping this was all a bad dream. We were sad, angry and disillusioned all at once, but we also had Saharsha with us who squealed in delight every time the sea tickled her toes. We knew in our heart that we would have to make things work and give this little girl the best shot at life. After a routine of daily exercises in Sri Lanka and regular visits to Singapore, Saharsha learnt to roll, sit by herself and army-style crawl. During this time I fell pregnant again, so we decided to move back to Singapore and have access to better treatment for the both of us. Nothing prepares you for parenthood, but dealing with cerebral palsy made us feel like we were parenting blindfolded. Cerebral palsy is a condition so unlike a disease there isn’t a treatment to cure it. Despite having supportive parents and family, we felt alienated and alone. I would only post photos of smiling Saharsha sitting like every other child as I wasn’t ready to share the reality with the world beyond my close-knit circle. Saharsha was progressing but we again felt restless at how slow the process was. No one could tell us when or if she would ever walk independently. I was on a relentless mission to find out everything about cerebral palsy and do whatever it took to make a difference. I started asking about treatment in Australia when a friend recommended a therapy programme in Sydney. A few days before Saharsha turned two, we went to Sydney to do an intensive three-week therapy programme consisting of daily physiotherapy. Thanks to our wonderful therapist, who still treats Saharsha today, we saw dramatic improvements. This was a huge turning point in our life and one which saw us eventually move to Sydney after a trip to the United States for state of the art surgery called Selective Dorsal Rhizotomy with renowned neurosurgeon Dr Park. The three-hour procedure cut all damaged nerves from Saharsha’s spine that caused her muscles to tighten. Postoperative care now requires Saharsha to do physiotherapy as much as possible, so we go daily. I spend hours every day researching the latest news on cerebral palsy and what other parents are doing. Although my husband and I are both avid believers in science, we even considered taking Saharsha to see a healer in Fiji… we would try anything. This is why I say happiness and despair are two sides of the same coin. When other children of Saharsha’s age are free to do whatever they want, Saharsha needs my help to even get out of bed. She now walks with a walker but needs help in her transitions of getting in and out of it. A simple task like brushing her teeth requires immense patience and perseverance on her part as she needs to work on her core to balance and sit, and has to work hard to keep her hands steady. Yet through all of this, she continues to be our shining star. Saharsha has a smile that can light up the world, she finds joy in the littlest of things and she is full of enthusiasm for life. When I take her to music lessons and all the other children get up to dance, my heart breaks into a million pieces. But Saharsha doesn’t wince, she stands tall in her walker and starts singing out loud and swaying to the music. And all those million broken pieces in my heart suddenly start dancing with joy. Saharsha has a little sister who worships the ground she walks on. I worried about what it would be like having a child who is differently abled and another who is ‘typical’, but my concerns were completely unfounded as both the sisters have only seen this as their norm. When it’s time to go out, my one-year-old runs to me pushing her sister’s walker so that I can pack it to leave. These two little girls have filled our lives with an urge to be happy, to find peace and to lead a so-called ‘normal’ life despite living in very extraordinary circumstances. And that led me to chronicle our journey through an Instagram page called @chronicles_ofzhazha. For me, it is a story of acceptance, finding joy while going through a difficult journey and a celebration of my children. At three, Saharsha loves dressing up and strutting around in her walker, she models for small local and international brands and she has travelled the world. The Instagram page lets me spread the word on inclusiveness while showing that cerebral palsy doesn’t hold us back from celebrating life at its fullest. Follow @chronicles_ofzhazha Words: Nabanita Sen Bekkers | Holding image: Harald Bekkers