Finding Hope One Step at a Time

A Mom’s Experience with her Child’s Hearing Loss

Sometimes you don’t want your mother’s intuition to be correct. That was my thought the day I heard the doctor say, “You were right—Olivia has bilateral hearing loss, and it’s permanent. She’ll need to wear hearing aids.”

Those words rang in my ears for weeks, even months later. Even though I had known deep down that my concerns were warranted, hearing the confirmation out loud was difficult to process. My brain started swirling with questions. Was it something I could have prevented? Will it get worse? Was it from the chronic ear infections she had? What will the diagnosis mean for Olivia’s future?

Olivia’s formal diagnosis of sensorineural hearing loss came on June 1, 2023, just a week before she turned six. She had been heavily into gymnastics and was just finishing kindergarten—her first year in a dual immersion program, learning Spanish.  

Signs of a Problem

By the end of the school year, there were many concerns that I couldn’t dismiss. Frequent ear infections and often having to repeat ourselves when speaking to Olivia. Her iPad volume was always up full blast, with us asking her to turn it down.

When I volunteered in her classroom, I noticed her closely watching classmates to follow along and stay on task. I wasn’t sure if this was from learning a new language or not being able to hear instructions.

Eventually our ENT agreed to a hearing test. She missed responding to a few of the beeps, but the audiologist said, “it’s very common at this age.” I found myself in a similar position to many other parents—insisting that my child be tested further and resisting a professional’s advice to wait and see. I trusted my intuition that something was wrong.

Diagnosis and the Road to Acceptance

When we got the definitive news of Olivia’s hearing loss, I cried on the way home and again when I told my husband. A few days later, I casually mentioned to her that just like some people wear glasses to see better, others wear hearing aids to hear better. I told her that the doctor said she needs to wear hearing aids and I showed her some photos of other kids wearing them.

She asked me if she’d have to wear them only for a day. I told her no. She asked, “two days?” Her eyes welled up with tears, and I didn’t have the heart to tell her yet that she was going to need them daily. I gave her a hug, and we cried a lot over the next several days. She asked hard questions like, “Why me?” and confided she was worried about the kids at school making fun of her. She vowed to wear her hair down every day to cover them up. Her confidence was depleted.

Knowing your child is going through something so emotional and not knowing how to help them is very difficult. I threw myself into searching for resources. As so many parents in this position do, I dug deep into the internet to learn all I could about her new diagnosis, and how I could help her live her best life.  

Finding Hope and a Community of Support

A mom from an online group told me about the Hearing Loss Association of America (HLAA), a nationwide organization that offers education, advocacy and support for families facing hearing loss, and their Walk4Hearing event in Long Beach, CA, happening just a few days later on June 11. As soon as I found the event online, I saw pictures of families and kids with hearing aids smiling and happy. HLAA holds Walks in 21 cities across the country, all designed to raise funds, awareness and give support to families just like mine.

I immediately registered Olivia, my other daughter Audrey and their Aunt Marissa. Although it was only 10 days after her diagnosis, I was anxious for Olivia to see hearing loss in a fun environment and other kids in the same position. I hoped to show Olivia a community of support and a place where hearing loss is normalized, not stigmatized.

For this particular Walk, there happened to be a drawing to win a free pair of donated Oticon hearing aids, and each of us completed the online entry form. I hadn’t even considered the potential costs of devices, insurance coverage or other expenses yet. I just knew I was desperate for some hope and emotional support for my daughter, and I filled out everything I could to be all in for the event.

The Walk took place in a fun location near beautiful ocean views, shops and restaurants. There were magicians, a face painter and other children wearing colorful hearing devices with cute charms that Olivia was taken with. She liked seeing all the different colors of the earmolds as well—a huge change in attitude.

The feeling of support, joy and hope were overpowering that day, and Olivia seemed to feel it, too. We overheard the announcements of prizes for the fundraising teams and then the grand prize of free hearing aids. I’ll never forget how excited we were when they drew Marissa’s name! She immediately donated the hearing aids to Olivia—who felt like the luckiest winner. It was a long way from her “Why me?” attitude from just days before.

Leaving the Walk, I asked Olivia what color hearing aids she would get, and she said definitively, “pink!”  I noticed her eyes were wide open and her face looked bright, something I hadn’t seen since the diagnosis. It was a special moment of hope that I owe to Walk4Hearing.

Hearing Aids Highs and Lows

We had Olivia’s final hearing aid fitting a few months later, and I will never forget her smile when the audiologist turned them on for the first time.  The first thing she did when we got back in the car was turn down the volume of her iPad. We noticed a huge difference right away in her hearing ability.

But Olivia remained uncomfortable wearing her hearing aids to school, often crying, and wanting to wear her hair down to cover them. She eventually stopped wanting to go to gymnastics, too. We continued to find new strategies to help her feel much more comfortable. Her teacher and I decided to read a book about hearing loss to Olivia’s classmates, showed them her hearing aids and answered all their questions. That seemed to take the pressure off and the very next day, Olivia asked to wear her hair up in a ponytail again!

Although it’s been a process, with a few steps back here and there, Olivia is adjusting to her new normal and learning to advocate for herself. She is now back in gymnastics, doing well in school and even cried when I had to take her hearing aids in for a check recently because she didn’t want to go without them.

It’s a relief to see her happy again, and it all began with last year’s Walk4Hearing. Winning the hearing aids allowed us to fully focus on Olivia’s emotional well-being, and seeing so many others in similar situations gave us the hope we needed for her future.

Since her initial diagnosis, we’ve learned that her hearing loss is progressive, and we are seeking answers. I am now volunteering on the planning committee for the 2024 Long Beach Walk4Hearing in June. I would like to help bring that same spirit of empowerment to others facing hearing loss, and I want Olivia to be a part of this amazing community of support.

Walk4Hearing events raise awareness, funds and hope for people with hearing loss in 20+ cities across the U.S. Join us! Learn more and find a walk near you.