When we found out I was pregnant, the only thing we wished for was for the baby to be a girl child since we already had a son. As young parents living a stereotypical life, we were naïve enough to take the health of the baby for granted. We went through the routine tests of pregnancy without putting any thought into it as we cribbed and joked about the boring uneventful visits to the doctor’s office. Well, that changed in the 17th week of pregnancy as the baby tested positive for Down’s syndrome. This came as a jolt from nowhere and all that I remember is me and my husband sitting on the floor holding hands in silence and staring into space, for what felt like eternity, our thoughts racing in a million directions, not knowing what to expect, too scared to verbalize our thoughts lest they came true. And yes, it was a baby girl, but did that matter now? After weeks of sleepless nights and a series of tests later, the doctors ruled out the possibility of Down’s syndrome. Boy, were we relieved?! Maybe momentarily.
Few months later, Arya was born and in the midst of our celebration, we were told that she had failed the newborn hearing screening at the hospital. Then started another fleet of hearing tests, MRI and CT scan that we went through lifelessly, our hearts sinking and our glimmer of hope getting dimmer after every test and 3 months after her birth, the judgment was passed. Arya was born with profound hearing loss in both her ears.
This was now a fact that no one could change, no matter what I did, no matter how much I loved my child, not even god. This was so terminal. Our emotions at that point were anything from numbness to denial to guilt to helplessness to anger. I would look at Arya, a happy little baby kicking and cooing to grab my attention, oblivious of the issue and smiling at me as I looked into her eyes. I would be in tears as I felt it was my fault that she had hearing loss because I didn’t do my job right as a mom. I didn’t want her to know that it was my fault. I felt guilty. It felt it was unfair that she had to have this problem. What wrong had she done to anyone? I wanted to hide from the whole world. I didn’t have the words to explain nor the inner strength to hear myself talk about it without breaking into tears. I didn’t want the world to pity my child or to treat her any different from any other normal child. It made me angry to see people happy. I felt like no one had a right to be happy anymore. My logical mind kept looking for reasons why she was born with this problem and found no answers. All that I was given was statistical data that did little to justify the reason and nothing to reduce my pain or solve her problem. Visits to the audiologist to get fitted with hearing aids, conversations with surgeons about cochlear implants, with insurance companies on the coverage felt very alien. I was angry that all these people had accepted that Arya had hearing loss. I was still in denial. It felt like I was on a planet where I didn’t belong. This is not the world that I was meant to be in. This was just a nightmare and all that I had to do was wake up and everything would be back to normal.
I couldn’t go on like this anymore. It was not good for Arya or for my 3 year old son. It felt like my spirit was at the rock bottom of the ocean floor and the only place to go from here was to bounce back up and thankfully, that’s what happened. One fine day, I decided enough was enough and I had to chin up and take on the world. I realized that as I was mourning, my whole family was looking at me for strength. I figured Arya was going to be only as strong as I made her and I was her biggest hope. Once I realized that, there was no way I was going to sit around and mope anymore. I was now ready to pick up my little girl and greet the world and scream, “Hello world, hear we come!” And there’s been no looking back since then.
Our early memories of Arya unfortunately are mostly her doctor visits and audiology appointments and hospitals. But thankfully, my mom was with us during that time supporting us. She constantly reminded us to celebrate all the regular milestones of a normal child. I still remember her words that everyone in the world has to go through their share of pain. She reminded me that good days pass and so do bad days. And as painful as it is to survive the bad days, it is important to stay focused on day-to-day activities and celebrate the milestones along the way so that once the bad days pass and we look back, we still have some good memories from those days. She would always tell me that god trusts his special kids with special parents like us for a reason. These words of wisdom that I had heard a million times before finally made sense and gave me the strength to look at Arya beyond her hearing loss. My mom was my pillar till Arya turned 5. She left the rest of the family behind in India to support Arya. She was Arya’sprimary caregiver and would go to the special school with Arya, which was a good 40 miles from our house 3-5 days a week, which can be draining. She would participate in the class and the teachers would coach her on what to work with Arya. My mom would not only work with Arya but also pass on the information to us so we could also follow the same. I know my mom stretched way beyond her comfort level working with Arya be it dancing to the action songs during music time or pretending to be a cat or a clown.
Arya is blessed to have grandparents who made her their top priority and supported her in every way possible. All of them were a little shaken when they first heard about Arya’s hearing loss and did not know how to react. But once they internalized it, they were all onboard to support Arya in whatever way they could. Most importantly, they were not worried about how the extended family would look at Arya when she first visited India. It was not a big deal to them and they didn’t try to hide it and that mindset is all that was needed. Arya actually brought the whole family together as supporting her was a common goal for all of us. Our bond grew stronger as we shared our uncertainties, cried together when things didn’t go well prayed together during her surgeries and hugged as we celebrated everyone of Arya’s milestones together. All of our friends were equally supportive and never treated Arya any different than any other kid.
Beyond the support from our parents, Arya was fortunate to have the support of the best surgeon, audiologist and the special school, which she attended from the time she was 3 months till she turned 5 and was fully mainstreamed. It really helped her that all of these key players worked together as a team to make sure Arya was best equipped to succeed. I still remember the day Arya got her first CI. It was undoubtedly one of the toughest days of my life as we waited outside the OR pacing the floor, praying, staring at the door for the surgeon to come out. And when he did come out, he had a wide smile on his and as I looked at his face, I broke into tears. He gently shook my hand as he congratulated me and said, “Don’t worry. The surgery went well. Very soon your daughter will be talking so much that you will ask her to shut up.” Those words sounded like music to my ears and gave me strength on days when things were not going well and yes, we did have those days. For the first time, on that day, we started dreaming about the future of our child. Our first and foremost dream for her was to be an average person with good values and education. I remember the day when Arya was 3 years old and her teachers noticed her left eye twitch for certain sounds. They immediately sent a message to us as well as her audiologist. It was a Friday and we were very nervous about Arya not having access to sound over the weekend. Her audiologist understood the situation and made a special accommodation to see her on Saturday morning which was actually a holiday. And there was this time when they were not able to get the mapping right for one of Arya’s CI’s and they spend a good 6 hours with her trying different things, giving her breaks as she was exhausted. She had access to the best SLPs who not only trained her in speech and language but also taught her critical life skills like self-advocacy that has helped Arya tremendously all through her life. These skills have helped her to be a very confident young adult who has the right words to explain what a CI is to her curious friends and she doesn’t bat an eyelid when some kid comments that Arya runs on batteries. We cannot be thankful enough to all the wonderful professionals and their teamwork in supporting Arya.
Thanks to all the support Arya has gotten from family/friends and stellar professionals right from the time she was diagnosed, she was mainstreamed at 5 at the same time as a kid with normal kid and there has been no looking back since then. CI’s are very much a part of who she is but doesn’t define her. There’s always something new for us to explore and a new situation to go through like the first day at school, using the personal FM, when she started to learn swimming, or a new musical instrument, getting through security at airport, going on the roller coaster for the first time, going to the movies or to a summer camp. We still run into mechanical issues with the CI once in a while but dealing with these is no different than dealing with eyeglasses or braces. Arya has done very well academically and she has been able to learn anything that she has desired to be it playing the piano and the violin or badminton and taekwondo or skiing or swimming. We have gone on a lot of family vacations and she has been able to enjoy all kinds of activities such as zip lining, white water rafting, snorkeling, jet skiing, parasailing. Arya just turned 16 and she is yet to find an activity that she could not pursue because of her hearing loss. When my dad first found out about Arya’s hearing loss, his comment was, “Just wait and watch. This girl will become the President of this country.” As Arya is preparing for college, today I can say with confidence that Arya will be able to achieve anything that she sets her heart to. She is well prepared as a young adult to follow her dreams and passions.
On a recent parasailing adventure, Arya made a comment that got me thinking. She said once she was up in the sky, it was very serene and quiet. I could tell Arya’s life has been one roller coaster ride from being born with hearing loss, surrounded by silence to being able to “hear” the silence!
The author of this post is Uma Mididaddi, an early Listening Together champion, and now our project manager.