Maya’s Journey: life with hearing loss

“Our journey with hearing loss began July 7, 2011 at 5:43 pm with the birth of our beautiful daughter, Maya Hope. Everything about her was different, her size, the way she looked, and even the way she cried. By the next day, I was told that she had failed her first hearing screening, which would be the first of many subsequent fails on multiple tests.

We were in a small town and possibly due to limited resources no one gave her an actual diagnosis. We were told she would grow out of her hearing loss, that her head and ear canals were too small. We were hopeful that her lack of response to sound was due to this reason, so we watched and waited for her to “grow out of it.” We were sent to Hearts for Hearing, and this was the first time someone gave her an official diagnosis of moderate to severe hearing loss. We were relieved to finally have a diagnosis, and at the same time we were devastated that our precious child had something wrong with her. In our Indian culture, any type of disability is looked down upon. It’s not something that is talked about much less supported.

I immediately worried about her future, her potential, her ability, her career and sadly at that time I was not able to see much hope. In my life, I have never treated anyone differently due to his or her disabilities, but there I was judging my daughter, limiting her success, labeling her because she wasn’t “normal.” I was already writing her life story in my mind. Thankfully, the real story is very different because of Hearts for Hearing

It wasn’t till we came to Hearts for Hearing that our fears were stilled and truth was able to pierce through the skepticism and stereotypes we had. It was the first place I openly voiced my concerns of Maya not being “normal.” It was the first place I was told that Maya is “normal,” she just has a hearing loss, and we were going to do everything to deal with it. I had never heard anyone refer to my deaf child as “normal.” While I was making a long list of things she could never do, the team at Hearts for Hearing were making a list of things she could do and celebrating her for it.

We got her first hearing aids when she was 4 months old, and I remember the appointment in which she heard my voice for the first time. I thought of all the days and nights when I wasn’t able to console her with my voice. It was heartbreaking, but we knew this was the first step in the right direction on this long journey.

So, we were on our way to correcting her speech errors and were ecstatic with her progress. It was music to my ears hearing her voice call out to me and talk with me, and knowing that she heard me too, was exciting. Things changed again when she was 2 ½ when she had bilateral ear infections. She stopped talking completely for about a week. I immediately knew something was wrong since this was not her personality. A few months after later we found out that her hearing had progressed to a severe to profound hearing loss.

Once again our “normal” was rocked. Her language began to deteriorate, and the words and grammar she knew before began to fade. It took a long time for us to make the difficult decision of moving forward with getting Maya a cochlear implant.

It was hard to explain our position to family who still didn’t approve of hearing aids. A few months after her 3rd birthday, Maya had her first cochlear implant surgery on the left side. Since her activation, the progress in her language skills has been massive. A few weeks after her activation, we were listening to a song we’d heard many times, and for the first time, she asked me bout the lyrics of the song. I realized that she’d never heard lyrics before. We’d always danced around to music, but the words didn’t mean anything to her.

We have been challenged every step of the way. Every decision from giving Maya hearing aids and speech therapy from the age of 4 months to doing a permanent procedure such as cochlear implant surgery has been difficult, but Hearts for Hearing has stood by us. Taught us. Celebrated with us. Encouraged us, and seen the best in Maya.
Maya is a smart, independent, and sweet little girl with a powerhouse personality. We joke and say that she will be shocked the day she finds out she is profoundly deaf, because her deaf ears do not limit her and she thinks she can do absolutely anything. She is a chatterbox who loves to talk and sing. Of course she will have certain limitations, but that list is becoming shorter and shorter as she gains more confidence and access to language. She has language and speech skills well beyond her 4 beautiful years.

I used to wish we were just a “normal” family with a “normal” kid. But when I look at her, I wouldn’t trade her or the relationship we have developed through the different seasons of this lifelong journey for anything. Her hearing loss has helped us tear down cultural stigma and stereotypes. There may be many unknowns in the future, but we will take one obstacle at a time. We won’t put Maya in any kind of box because we have the highest expectations for her future.”

– Elsa (Maya’s Mommy)

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