Living with Sensorineural Hearing Loss: Thomas’s Story

In 2017, God placed the greatest gift of my life in my arms, my son, Thomas. From the very beginning, he became my whole world, and long before I understood the full shape of his journey, he was already teaching me about faith, resilience, and what it truly means to fight fiercely for someone you love.

Thomas was born with fluid in his ears, which meant countless hearing tests in those tender newborn days. As a first-time mama, nothing prepares you for watching your tiny baby endure medical testing. One test in particular, the ABR sleep hearing test, required him to fall asleep in my arms. I remember holding him so tightly, my breath shallow, my heart praying silently that everything would be okay. When we were told he passed, I felt relief wash over me.

Later, we moved forward with ear tubes. I still remember the day he came home and jumped when the refrigerator turned on. To me, it felt like a victory, a sign that we were in the clear. But life has a way of unfolding differently than we expect. When Thomas was about two and a half, his preschool gently suggested speech therapy. It did not alarm me, I had been in speech therapy myself as a child, so I acted quickly, determined to give him every possible support before he ever stepped into a classroom.

Then COVID arrived and changed everything. Services were delayed, routines were disrupted, and uncertainty became our new normal. Still, as soon as we could, Thomas began speech therapy multiple times a week. We kept moving forward, doing the best we could with what we had, trusting that each small step mattered.

Another chapter came quietly, but it shifted everything. Thomas’s ear tubes did not fall out on their own. They had been in too long, and surgery was needed to remove them. Afterward, he failed his hearing test. His teachers and speech therapist believed it was likely a fluke, but it was not. In April of 2022, we received the diagnosis of Sensorineural Hearing Loss.

By the time we had answers, Thomas was considered too old for Georgia’s free, home-based early intervention services. That reality hit me hard. I was not just sad, I was angry, overwhelmed, and heartbroken. All I wanted was access to every possible resource that could help my child thrive. So I learned. I researched. I advocated. I made a promise to myself that Thomas would never be defined by what he may have missed early on, but by what we fought for next.

Along the way, I learned things no parent expects to learn, that hearing aids for children often are not covered by insurance, that Sensorineural Hearing Loss can change at any time without warning, and that uncertainty can quietly weave itself into daily life. There was a season of grief, a mother’s grief for the unknowns my child might face. That grief was made heavier when, in the midst of my heartbreak, someone told me that Thomas’s hearing loss was a punishment from God. Those words could have shattered me. Instead, they became a moment of clarity. My child was not broken, and God had never abandoned us. That realization changed everything.

I stopped asking why and began focusing on what. What Thomas needed. What he deserved. Who he already was. I poured my energy into building the right support system, surrounding him with people who believed in him as deeply as I did. His audiologist became a steady presence, guiding me through every question and fear, and helping lead us to a new school system, where Thomas found an incredible team ready to support him fully.

Today, Thomas is in second grade, and he is thriving. He has been accepted into the AIMM gifted program. He has graduated from private speech therapy and continues receiving support at school. He is learning ASL and teaching me right alongside him. Most importantly, he is learning how to advocate for himself.

There were seasons when Thomas longed to meet other children like him, to know he was not walking this road alone. That longing is part of why this project means so much to us. My deepest hope is that another mama, another family, or another child sees this story and feels less alone, that they realize there is community, support, and hope, sometimes waiting just beneath the surface.

To those walking a similar path, if you are doing your best with the information you have, you are doing it right. Trust that. And trust that God chose you for this role for a reason.

Thomas wants to change the world. And I believe, without a doubt, that he will.