Shakti Thapa
“When I think back, it feels like a lifetime ago - before my daughter, before the diagnosis, before everything changed. My name is Shakti Thapa. I live in Tarakeshwar now, but I come from a strong and well-established family in Gorkha. My childhood was filled with laughter and the warmth of my parents and siblings. Life was simple then, uncomplicated. I never imagined the kind of strength I would need in the years ahead.
After I finished my studies in Gorkha, I moved to Pokhara for further education, and soon after, I got married. I was just 21, still trying to figure out who I was. My husband is a musician, and from the day we were married, my life was filled with the sound of his music. It was beautiful, almost poetic. Our home was always buzzing with creativity and energy.
In 2056 BS (1999), we welcomed our first child, a son. I remember being so prepared, so sure of everything. I had packed my hospital bag weeks before, eagerly awaiting his arrival. The delivery went smoothly, and I felt like I was in control - of my life, my family, and my future. But control is such an illusion.
Seven years later, I was pregnant again, this time with my daughter. I was overjoyed, dreaming of all the beautiful dresses I would make for her, imagining the bond we would share. But life had other plans. On the day of her birth, I knew something was wrong. My waters had started leaking early in the morning, but there was no pain. I stayed home, resting, and watching movies with my husband, not realising how serious things were about to become.
By the time we reached the hospital, the situation had worsened. There were no beds, no doctors attending to me - just panic in my chest. Hours passed before they finally examined me. The doctors rushed me into surgery, saying the baby had ingested fluid and was in distress. I barely remember much after that, except my husband's voice telling them, “Save her first”.
When I woke up, they told me my daughter was critical, and that she might not survive. My heart shattered in that moment. I couldn’t hold her, couldn’t even see her for four long days. She was so tiny, barely 1.75 kg, and hooked up to tubes in the incubator. She fought so hard, but the world had already been unkind to her. They diagnosed her with pneumonia, and we spent 26 days in the hospital, praying for her life.
When we finally brought her home, I thought the worst was behind us. But 15 months later, as I watched her struggle to reach milestones other children did effortlessly, my hope turned into fear. She wasn’t sitting up, wasn’t walking. Something was wrong, and deep down, I knew it.
The doctors confirmed my worst fear. They told me my daughter had cerebral palsy. "She may never walk," they said. "She’ll only develop halfway compared to other children." Those words were a death sentence to all the dreams I had for her, for us. I cried, I screamed, I broke down in ways I never thought possible. But I couldn’t give up on her. How could I?
I poured every ounce of energy into her therapy and her treatment. I quit my job to care for her full-time. My husband went abroad to work, but the financial strain took its toll. He came back within six months, and our lives felt like a constant battle - against the world, against time, against an unforgiving fate.
In the midst of it all, I kept going and kept learning. I finished my bachelor’s degree in Public Health, and then my master’s degree. But the headaches wouldn’t stop. In 2073 BS (2017), they found a tumour, and I had to undergo surgery. It felt like life was testing me at every turn, asking, "How much more can you bear?"
But I’m still here. I found strength in places I didn’t know existed - through meditation, through the love I have for my daughter, through the community of parents I’ve built around me. We started small, meeting in temples, and in homes, just trying to share our experiences, and our pain. With the support of Self-help Group for Cerebral Palsy, we were able to start the Carers Association (Nawa Aagman Samrakchhek Samaj). Today, we have over 400 members, all fighting for children like mine, children who deserve a future, a chance.
It’s not easy. The government has forgotten us. There are no day care centres and no real support for families of children with cerebral palsy. But I refuse to give up. I’ve made it my mission to create a better world for my daughter and every child like her.
Some days, it feels like I’m climbing a mountain with no summit in sight. But then I look at her, and I remember why I keep going. She is my reason, my strength. And as long as I have breath in my body, I will fight for her.”
