The most difficult bit about navigating the world as a parent to a newly diagnosed child who is differently abled is that all of a sudden you find yourself isolated. You are surrounded by people with children who are neurotypical. You look through your library to only find books that describe the typical child and her development. Even your paediatrician hands you a child health book which talks of vaccinations, milestones, weight, nutrition, illness, treatment. It feels like getting the instructions for a digital watch, only yours is mechanical and you have no idea on how to wind it up! And then when you do find the instructions, you realise your watch has different complications (literally)!
You deal not only with stress related to the medical situation itself but the strain of dealing with societal isolation because you feel different. While records by UNICEF state there are at least 93 million children who are differently abled in the world, I felt I hardly knew a single one other than my daughter.
So how did I survive? By making a few of my own rules.
I allowed myself to grieve without guilt. I grieved not having a normal pregnancy, I grieved not bringing my baby home right after she was born, I grieved and I still grieve not being able to just go to a playground and watch my child run around and climb up the monkey bar with other kids while I chat carefree with other moms. It doesn’t make me weak and it has certainly helped me in accepting my circumstances instead of having pent up emotions.
I took charge. It is easy to get overwhelmed with the sheer volume of advice you receive from family, friends, well-wishers, doctors, social workers. I found it important to teach myself to pause, breathe and filter. I particularly found it useful to read up on any piece of advice I received and then make my own judgement on whether it applied to my case. Reading up on modern advancements in science helps me connect to a whole new world of possibilities instead of being limited to ‘Oh she might not walk without a wheelchair or aid.’
I started talking about ‘the elephant in the room.’ Like any other parent, I wanted to talk about my child. And I could only do so freely by talking about her cerebral palsy and the difficult bits because in the end that affects who she is and how we operate as a family. Because I initiate this conversation I also felt others felt less daunted to ask me questions.
I started celebrating my daughter. Every parent revels in their child’s achievements. And sometimes in our world this is even bigger because we know how much effort, patience and resilience it requires to do the simplest of things. The first time Saharsha rolled, when she sat unaided, when she used her walker by herself. Each of these milestones I record and celebrate.
Today I find it important to share this story because if you are reading it as a newly diagnosed parent of a child who is differently abled, look around you.
You might feel isolated at first but once you open up you will discover new friendships: that mother in the therapy waiting room with you; the mother waiting for a diagnosis at the paediatrician’s office and the tribe of mothers from all over the world that you suddenly find yourself connected to, thanks to the power of social media, sharing the same concerns and hope as yourself. All you need to do is reach out and connect.