“kya ab koi umeed nahi hai?” I asked upon learning about my daughter’s diagnosis of cerebral palsy in 2018. I knew my daughter might have problems, she was born prematurely, but I never imagined the hitches that lay ahead.
Though my daughter- Mia seemed fine at first, after several months, I started to notice that sometimes Mia seemed very floppy, almost like a rag doll. Other times, she seemed to stiffen. I knew that she didn’t reach the same growth and motor milestones as my older daughter.
My worries and fears:
Two types of attitudes can be adopted as a result of future thinking: positive or negative. Therefore, the next emotions tied to thinking about the future are optimism and anxiety. They are interrelated and may differ in frequency. The influence of one kind over the other is either negative or positive for the human.
Most if not all, parents develop wishes, expectations, and dreams for their children, even before the child is born. At a minimum, parents wish for a healthy baby (“We don’t care whether it’s a boy or a girl, just as long as it’s healthy” is the cliché that is repeated over and over), and we assume that it will be so. The discovery that the desired child has impairment can be seen as destroying the parent’s hopes and dreams. Questions started creeping my head like I was a child trapped alone in a dark room. Worries like:
- Can a child with cerebral palsy live a normal life? What is the leading cause of cerebral palsy?
- How do I know if my child has cerebral palsy?
- Does cerebral palsy get worse with age?
- Can children with CP walk?
- Is Cerebral Palsy painful?
- What is the best treatment for cerebral palsy?
- Does cerebral palsy qualify for disability?
Numerous doctor appointments later, my daughter was eventually diagnosed with cerebral palsy. I went to the Internet right away to search for anything and everything about cerebral palsy. Ahhh… Infinite questions and so few answers and without the authenticity to rely on. I felt irritated by the limited information I could find that precisely addressed the needs of parents.
I expressed my frustrations to Mia’s orthopaedic surgeon, who connected me with another parent of a child with cerebral palsy. My new-found partner in distress, Neha, and I set out how to help educate other families on prevention and treatment. But we weren’t sure where to start. We read about spina bifida, a disabling birth defect of the spine, and about the discovery that folic acid can help reduce it. That’s what we want our ‘folic acid’ something that could help prevent cerebral palsy, I said. We find out that without knowing the root causes, we cannot avoid and treat cerebral palsy.
At such a young age, it was hard to watch Mia go through the pain of two major orthopaedic surgeries, but we knew it was necessary to help her walk.
Mia is flourishing today, but I know there are going to be many challenges ahead. I dare to dream, like all parents, that my daughter will go to college and have a meaningful life.