The First Milestone…

As I stand in my daughter’s classroom in one of the most prestigious schools in the country, I am surrounded by parents who have lots of questions to ask to the future teachers of their young kids. I am suddenly overwhelmed by a lot of emotions. Memories flood my mind and reflections flash before my eyes.

For four years my wife and I had only one dream, to get our daughter in a mainstream school.

Born with a moderate to severe hearing loss, our little angel had come in our lives as a blessing. We were broken to the core when we realized that she had hearing loss. We were emotionally lost and our belief in God waning. We suddenly realized that our daughter might not have a normal childhood. Many discussions with doctors, family members and friends brought up options like special schools and homeschooling. Being from a country like India, we were staring at very limited options of making sure our child explores her true potential.

That’s when we both decided that we would make sure that our daughter goes to the best school of the country. With that pledge, our four-year journey had just started.

The first stop was the doctor. Lot of research went into finalizing the best doctor for our daughter. We went to many places, even different countries to get our research in order. The first plan was lots of testing. So that needed a team of professionals that consisted of audiologists, teachers, and speech language pathologists. We started looking for the team that we needed. I think it is something similar to Nick Fury assembling the Avengers team. I needed my super-heroes, Thor, Iron Man, and the Hulk!

Sometimes we tend to miss out on researching the people who in fact matter the most to our kid’s development of listening and spoken language. In my journey so far, the people who have really changed the way I think are the members of the rehabilitative team – teacher of children with hearing loss, speech language pathologists and audiologist. The search for our team took us to many parts of the country and beyond. We learnt something from everyone we met and everyone contributed to our journey. Finally, we could narrow down to the team we needed. The medical team here in Delhi and the rehabilitation team at the very beginning of our journey from the Weingarten Children’s Center in California. I cannot thank these guys enough for what they gave us. Our daughter’s listening and spoken language journey continued to progress thanks to the continued support of this team. Particularly Ahladhini Dugar, who was then a teacher for children with hearing loss at the Weingarten Children’s Center and now the co-founder of Listening Together, who taught us not to accept anything less than excellence. The Delhi team helped us set up the amplification and our little angel was given hearing aids. The team at Listening Together provided coaching and mentored us and taught us how to talk to our kid, how to teach her, how to make sure she understands.

It took one day at a time, one playtime at a time, but gradually over next few months we could see some changes.

Then the time came that our little angel needed to go to a play school. So, once again we researched and met lots of teachers. We decided on one school that would help us work with our daughter. So that added another member to the team, and the next step began.

Initially when she went to school, she was not that comfortable possibly because it was noisy and she was apprehensive. But that also gave us a clue that maybe her amplification has to .be checked.  So, we went back to our Delhi centre and having discovered that her hearing loss had progressed we started the nerve wracking process for cochlear implantation.

Cochlear implant is a hard decision to make. To choose for your own kid to go under the knife isn’t easy. You constantly doubt your decisions, wonder about outcomes, and are scared about complications. To add to all this there were decisions regarding the type of implant you want to choose, the electrodes, the accessories and stuff. One hardly has enough knowledge of these things and to then have to decide what our little angel might need 5 years down the line was tough. This cochlear implant is going to be with her for her life and it will be part of her living. So, this decision gave us many sleepless nights. We were scared.

Finally, we made the call and went for the surgery. On the planned day we tried to be brave in front of our angel but inside both of us were scared to the core. The surgery went smoothly and we could go home the next day.The day of activation came and we couldn’t stop being emotional about it, we knew that it’s just activation and it’s not just that she will start hearing the first day, but for us it was the start.So that was it, our final push into realizing the dream we had started. Our little one was activated and we were stronger than ever before to start her on her hearing journey.

Hours and hours of countless sessions, home therapies, online therapies, score of books and games dotted our home. So, days became months, months turned into years and we kept on working, testing and working. Not a day went by when we didn’t read to our little angel. Every aspect we tried to look into and make sure our daughter gets it. Our Listening Together team became our beacon of hope and whenever we felt tired or weak, we would just turn to them for inspiration. There were days when the going was very tough and we almost gave up. But something kept us going.

Our little angel, has always been a strong person. She went through all this and never for a single day did she ever give up. Day by day she became the strong, confident girl that we wanted her to be. One important aspect of the team is family. We were lucky to have a strong family backup. Our parents made sure that our daughter was taken care of. They were part of the therapy and part of the upbringing. The whole family rallied together for our daughter and made sure that she is given the best opportunity to develop as possible.

By no means, this is the end of story. It’s just the first milestone we strived for since the beginning of the journey. But it is ok to stop for a moment and celebrate what we as a team have achieved. More importantly, to celebrate what our little angel has achieved. Doing that gives us a sense of how far we have come and how far we need to go.We are still working and we will keep on working till she is an independent, confident person. We certainly aren’t finished yet. The journey continues further.

Statistics tell me, from a 2011 study, the acceptance rate of Harvard Business School was 7.1 % and whereas The Shri Ram School’s acceptance rate was 4.7%. But this day as I stand in the classroom of The Shri Ram School, I just take a moment to look back. It is our daughter’s confidence, the team members (family, doctors, audiologists, therapists, speech language pathologists, teachers, implant company representatives) resilience and dedication, and God’s will, that we could reach this stage. Our first step has been accomplished.

As Robert Frost famously said. “Miles to go before I sleep………”

– Written by Zubin Dev Sharma