When our son, Sawyer, was born, everything felt perfect. He was healthy, beautiful, and filled our hearts with joy. Then, before we even left the hospital, he failed his newborn hearing screening.
“It’s probably nothing,” the nurse said reassuringly. “Just a little fluid. Come back for a follow-up in a week.”
But a week later, at the ENT’s office, he failed again. When I nervously asked the doctor when we should start to worry, he looked at me and said gently, “You should worry now.”
My heart sank.
A few weeks later, we found ourselves at the children’s hospital for an ABR test auditory brainstem response where they placed tiny wires all over Sawyer’s head. I remember sitting there, staring at my perfect baby, praying for a miracle. Halfway through the test, the audiologist looked up and said, “It does look like he has some kind of hearing impairment.”
I held my breath, heart racing.
I nodded numbly, trying to absorb the words. But the rest of the appointment passed in a blur. The next thing I remember is being outside in the hospital parking lot, sobbing in my husband’s arms. That moment broke me. As a parent, you’d do anything to protect your child and this was something I couldn’t fix.
Sawyer was diagnosed with bilateral moderate-to-severe sensorineural hearing loss. The doctors explained it was caused by damage to the inner ear and couldn’t be reversed.
Suddenly, all the little moments made sense the way he startled only at loud noises, how I’d comforted myself thinking, oh, he heard the dog bark. He’s fine. But the truth was, my baby couldn’t hear my soft voice when I whispered, “I love you.” Tears blurred my vision instantly.
He was fitted for hearing aids at just two months old. I remember the first time we put them in they looked so tiny on him. We were scared, but hopeful. We started speech therapy when he was five months old, and he blew everyone away. His therapist said if it weren’t for hearing loss, he probably wouldn’t even qualify for therapy. Watching him learn to speak hearing his first words felt like witnessing a miracle.
For a while, life felt manageable. The hearing aids were tough he’d pull them out constantly, and we’d have to refit new molds every couple of weeks because he was growing so fast, but we were adjusting. We had support from incredible audiologists, other parents, and the Deaf and hard-of-hearing community. Slowly, we found our rhythm.
Then came the genetic testing. Our ENT suggested it to rule out any underlying conditions. We went through scan after scan, appointment after appointment, until finally, I got the phone call. I was at the gym when the hospital number popped up. I ran outside to answer.
The genetic counselor’s voice was calm but heavy. “Are you somewhere you can sit down?” she asked. My heart started racing.
Sawyer had Usher Syndrome, a rare genetic condition that causes hearing loss from birth and progressive vision loss starting in adolescence. I could barely hear her after that. He will lose his vision. That’s all that echoed in my mind. I drove home through tears I could barely see through. When I told my husband, it was the first and only time I’ve ever seen him cry.
We learned that both my husband and I are carriers, giving each pregnancy a 25% chance of Usher Syndrome. Around that time, we found out I was pregnant again. We were terrified but also filled with hope. When our daughter, Olivia, was born, she passed her hearing tests. Later, genetic testing showed she was only a carrier. The name “Olivia,” which means “peace,” truly fit.
Today, Sawyer is thriving. He’s almost four, speaks beautifully, and will start soccer soon. He’s smart, polite, and full of life. Watching him navigate his world with hearing aids, with resilience, with joy reminds me daily how wrong I was when I once said, “I can’t imagine anything worse than being deaf and blind.”
Because the truth is, Sawyer isn’t broken. He doesn’t need to be fixed. He’s perfect exactly as he is. And like Helen Keller once said, “Although the world is full of suffering, it is also full of the overcoming of it.”
Every day, he teaches us resilience.
