Family Stories

Adley is our beautiful, curious and life loving girl who is navigating the world with unilateral Auditory Neuropathy. This condition is rare and affects the way sound signals are transmitted from the inner ear to the brain.

Adley's journey began shortly after birth. Standard newborn hearing screenings revealed an atypical response in her right ear, prompting further testing. We were told upon discharge from the hospital that it was most likely due to residual fluid and to follow up with Audiology. After re-screening, multiple Auditory Brainstem Response (ABR) tests and an MRI, a diagnosis was confirmed.

Understanding the diagnosis was the first step. We gave ourselves time to grieve the life we imagined and began the journey into our new unknown world. Although joining the Deaf and Hard of Hearing community seemed intimidating at the time, it has truly become one of the best experiences for our family. The families and people we have met along the way have become more than just a support system; they are truly an extension of our family. We celebrate every milestone, no matter the size. To someone who is just beginning this crazy wonderful journey; I recommend you find your people. This journey can feel isolating at times and having families who are also walking the same journey as you is so important.

Living with unilateral Auditory Neuropathy means Adley experiences the world with one "good" ear and one ear that receives distorted information. This can impact various aspects of her daily life. Adley often struggles to pinpoint the direction from which a sound is coming. Understanding speech in noisy environments is another significant hurdle. Despite the challenges her diagnosis throws her way, she continues to make great strides.

While Adley's overall language and speech development has been remarkable, there were early concerns about how her unilateral Auditory Neuropathy had shown impact in these areas. Close monitoring and early intervention, including speech therapy, have been crucial in ensuring she continues to develop strong communication skills. Adley is very much a visual learner and uses American Sign Language (ASL) to support communication. Although she is verbally more expressive, we as a family use ASL to help fill in the gaps of any information that has been missed, or when clarification is needed. Adley's journey has been wonderfully supported by an amazing team of dedicated professionals with early intervention. They were able to open our eyes and hearts to the beautiful life that is being lived in our little girl.

Adley is learning to navigate her world with a unique auditory perspective, and her joyful spirit, determination and adaptability shine through. Her story is a reminder of the importance of early diagnosis, support, and a belief in every child's potential to thrive.

Our daughter’s story began like so many others — with joy, hope, and overwhelming love. But shortly after her birth, we found ourselves on a journey we never anticipated.

She failed three newborn hearing screenings. Doctors reassured us that this was common, likely caused by fluid in her ears. We held on to that hope for weeks. But when her first ABR (Auditory Brainstem Response) came back inconclusive — indicating signs of potential hearing loss — we knew we needed clearer answers.

Once the fluid in her ears resolved, a second ABR confirmed what we had been bracing for: our daughter has bilateral moderate-to-severe sensorineural hearing loss. Even though we were preparing ourselves for this possibility, receiving the official diagnosis was still incredibly difficult. Like many parents, we experienced deep grief — mourning the life we had imagined for her and stepping into a world that felt unfamiliar and uncertain.

But we weren’t alone. Our early intervention team surrounded us with guidance, encouragement, and care. One of our daughter’s providers shared words that forever shifted our perspective: “Your daughter is fearfully and wonderfully made. She was placed in your family because you are the parents she needs.” Those words became a turning point — offering strength and helping us reframe our journey. At five months old, our daughter received her first set of hearing aids. We began learning American Sign Language (ASL), committed to raising her in a bilingual, bimodal environment — supporting both spoken language and sign.

As we continued to adapt and learn, we pursued genetic testing to better understand the cause of her hearing loss. That’s when we received another unexpected diagnosis: Usher Syndrome — a rare genetic condition that affects both hearing and vision, leading to progressive vision loss over time. This news was heartbreaking, and we were faced with a new kind of grief — one for the vision loss our daughter had not yet experienced but that would eventually impact her world.

In time, though, we found strength. We discovered resilience we didn’t know we had. We connected with the Deaf/Hard of Hearing and Usher Syndrome communities — families, individuals, and advocates who helped us find not just understanding, but also hope, clarity, and purpose.

At 2.5 years old, she started a DHH preschool program and in just three short weeks we watched her blossom. Her verbal language grew rapidly, and her sign language skills grew right alongside.

We can’t wait to see what God has in store for our vibrant, determined, joyful, and endlessly curious daughter. We don’t know exactly what the future holds, but we know this: she is capable of amazing things. We’ll be by her side every step of the way — learning with her, advocating for her, and reminding her daily that her story is powerful, her voice matters, and her life is beautiful. We are endlessly proud of the little girl she is and excited for the person she’s becoming.

Our little boy was born with Goldenhar Syndrome. Even though he was not officially diagnosed until after his first birthday, we were pretty sure he had it thanks to our internet searches. For Ethan, Goldenhar Syndrome looks like atresia of one ear — his ear is completely closed, skin tags on the cheeks by both ears, and hearing loss.

Our son was transferred from the hospital he was born at to one with many specialists.

He spent 2 1/2 weeks in the neonatal intensive care unit (NICU), where he had every organ checked and what seemed like, every test done. Throughout that time, as we observed and interacted with him, it seemed obvious that he either couldn’t hear or there was something cognitive going on. He didn’t react to sounds or talking; he only reacted to touch or light changes.

Ethan had his first BAER test a couple days before he was discharged and the test results came back inconclusive. We were told he would need a follow-up BAER but that his ear with atresia was more promising than the other. I started learning American Sign Language (ASL) right away and felt pretty comfortable with the alphabet before we left the NICU.

Even though we didn’t know much about what Ethan could hear, we were okay knowing that he hears differently. For me it seemed that if he just couldn’t hear, he could still have a promising future. But other people were not as okay; they tried to reassure me that Ethan really could hear.

At 2 1/2 months old, Ethan had his repeat BAER and was diagnosed with a conductive hearing loss from the atresia in one ear and auditory neuropathy in the other. We understood atresia — sound was unable to enter his ear—but we did not understand how much, if any, he could hear with auditory neuropathy. But it felt reassuring to have a diagnosis.

Around the age of 6 months, Ethan got his bone conduction device. He didn’t have any big response like kids in videos hearing for the first time. I felt a bit discouraged, but as time went on, it became evident that there was definitely a difference of response from Ethan, with and without his device.

I continued learning ASL and implementing it where I could. I used some ASL Apps, took online courses, looked up words as needed, and even did one on one ASL lessons with our DHH provider.

Ethan got started with speech therapy, first working on eating/swallowing, and later working on communication of speech and sign.

At age 3, Ethan started preschool in a DHH classroom. After just 6 months in school, he went from communicating very minimally, mostly just basic needs, to having conversations and chattering most of the day.

We do our best to give our son whatever means of communication best suits him. He favors spoken words but will also sign. Ethan is 3 ½ now. He is not yet understood by everyone, but I am so proud of him for how far he has come!

“Do you know about his ear?” Those were the first words I remember hearing as my son was delivered, and they caught me completely off guard. Before I could process what was being said, he was whisked away by the NICU team to be checked over. Confusion quickly joined the emotional whirlwind of having a newborn. When I finally got to hold him, I noticed his smaller ear. But in that moment, nothing felt out of the ordinary.

When it came time for his newborn hearing screening, someone told us he failed it. I can’t recall every step that followed, but I remember our nurse. She gently shared that a family friend of hers had Microtia Atresia — and spoke about it with calmness, warmth, and positivity. Her words were the first welcome we received into a community we didn’t even know we’d just joined. I’ll never forget how much that meant; it is ingrained in our story because it didn’t cause panic, just helped us adjust our sails.

So, we did what many parents do in those early days — we dove headfirst into learning everything we could. We researched Microtia, got connected with a Microtia clinic right here in Michigan, leaned on each other, and got to know our amazingly happy little boy while adjusting to life as a family of four.  At eight months old, Henry was fit with a bone conduction device, which opened up a new chapter of learning for our family. The device supported his access to sound and was an important tool for his development — but explaining that to others was often the hardest part. The first question people would ask was usually, “But his other ear hears fine, right?” And that question, no matter how well-intentioned, always carried weight. Because it overlooked the reality that Henry’s hearing device wasn’t just a backup — it was essential to his growth, communication, and sense of self. It was — and still is — a part of who he is.

We began early intervention services — an incredible support not only for Henry, but for us as well. There were many visits with our providers that left me feeling drained and questioning if I was doing enough — or doing the right things — to support Henry’s growth and development. I was constantly trying to absorb as much information as I could and apply it immediately, doing everything in my power to help him thrive.

Early On visits at daycare provided modeling and coaching across multiple environments. The staff in his daycare room began learning signs and using language strategies. They fully embraced the fact that Henry accessed language through multiple modes — his bone conduction device, spoken English, and ASL. By setting that example, his peers followed suit. The classroom community became a space of acceptance and understanding.

As Henry’s third birthday approached, it was time to consider what kind of support he would need moving forward. When we visited the DHH preschool with Henry, we knew almost immediately that it was the right place for him — it was a space where he could be fully supported, both academically and linguistically and the IEP team agreed.

On his third birthday, his lead daycare teacher walked him to the school’s van and sent him off for his first day at DHH preschool. I’ll admit, it was hard for all of us. The idea of putting my three-year-old on a 30-minute van ride alone made me anxious. But he adjusted quickly, and we could see daily that it was the right decision.

Henry attended DHH preschool for two years, surrounded by teachers who used both ASL and spoken English, Deaf Language Models, Language Facilitators, and peers who looked like him and shared similar experiences. During this time, we came to understand more about Henry. He likes to use both English and ASL and that his ASL use is powerful: it allows him to fill in gaps when he misses information, and to clearly express his needs, wants, and emotions. He’s endlessly curious, especially about hearing technology and how it works, and he’s eager to keep learning more ASL.

Kindergarten is just around the corner and as I look back on these past four and a half years, I can’t help but think of all the obstacles Henry’s faced — and how proud I am of his perseverance through every single one, always with a smile on his face.

To that doctor on day one: Yes, I know about his ear — it’s part of who he is, but it’s not everything. He’s Henry, my smiley boy who loves anything with a motor, is endlessly curious, and gives the best snuggles. His ear, however, has introduced us to an incredible community — one we wouldn't trade for the world.

One last piece of advice for whoever’s reading this: find your people — the ones who are walking a version of this journey too. They’ll understand you in a way others can’t. Trust your gut. You know your child better than anyone. You’ll notice things others might miss. Keep learning. Keep connecting. These relationships and resources will help you navigate the ups and downs — the moments of grief, the unexpected challenges, the advocacy work that comes without a guidebook. You will face things you weren’t prepared for. But you can do this. You’ll make mistakes — we all do — but stay focused on your connection with your child. That bond is your compass. The rest will fall into place.

When our son Noah was born, we had no idea how much strength, connection and joy would come from this journey with a hearing difference. His story has shaped not only his path, but ours as a family. Early on, someone shared the poem “Welcome to Holland” with us and over time, it began to resonate. We hadn’t landed where we expected, but we were exactly where we needed to be. And in this unexpected place, we discovered beauty, strength and a whole new way to love.

Noah’s hearing difference was first detected through newborn hearing screening. At the time, it felt like just another test. But follow-up appointments quickly became more frequent and more serious, filled with repeat hearing tests and eventually genetic testing. Those early weeks and months were full of uncertainty, fear, and endless questions. What type of hearing loss did Noah have? Would it progress? Would he learn to speak? Could he sign? What would his future look like?

At nine months old, Noah received his first pair of hearing aids, and it felt like we had taken our first real step toward understanding how to support him. The learning curve was steep, and it felt as if we were climbing uphill with no map, learning as we went. Suddenly, we had to understand audiograms, hearing technology, speech development, and communication strategies — all while figuring out how to advocate for Noah in everyday life, including while at daycare.

We quickly learned we were never truly alone on this journey. We’re incredibly grateful that, early on our journey, we were connected to Michigan Hands & Voices. Through them, we were paired with a parent mentor who had walked a similar path. She helped us make sense of what we were feeling, gave us practical guidance, and reminded us — often and lovingly — that everything would be okay. That sense of hope and community was a lifeline.

We also enrolled in Early On, which provided critical early intervention services. Through Early On, we were introduced to the basics of American Sign Language (ASL), and our whole family began learning together. Signing became a beautiful way for Noah to connect with us and express himself — especially in those early years when his access to spoken language was still developing.

As Noah has grown, so has our understanding of how to support him. We’ve learned how to build a team — from audiologists and speech-language pathologists to daycare providers, teachers of the deaf, and special education staff. And now, as we navigate the world of individualized education programs (IEPs), we continue to learn how to create the most supportive, inclusive, and accessible learning environment for him.

We know we can’t do this alone, and we are so thankful for the resources and relationships that continue to guide us.

Now, at five years old, Noah is thriving. He is an amazing little boy who adores his 9-year-old big brother, Adrian, and looks up to him in every way. The bond they share — from playful moments to sibling squabbles — is one of our greatest joys. Noah is bilingual in spoken English and ASL, and his personality shines through in everything he does. He loves sports — especially baseball, basketball, and lacrosse — and spends his time crafting, playing outside with friends, and embracing the world around him with curiosity and excitement. He is full of energy, imagination, and joy — just like any other five-year-old.

Looking back, we are incredibly proud — not only of Noah, but of Adrian, who has embraced his role as big brother with heart and compassion, and of ourselves as parents. One of our earliest fears was simply the unknown of what the future might hold. Looking back now, we wish we could have reached out to our past selves and said, “You’ve got this. It’s going to be okay. You will grow in ways you never imagined — as parents and as a family. Yes, there will be highs and lows, moments of doubt and moments of joy. But it’s all part of the journey — just like for anyone else. And you will make it through to the other side, stronger, wiser and more connected than ever before.” We’ve walked through some hard moments together — from the fear of the unknown to the victories of hearing first words or seeing the joy of communication — and we’ve come out stronger as a family. We are excited about what lies ahead and grateful for how far we’ve come.

As the poem “Welcome to Holland” reminds us, while we may not live solely within the hearing community, the Deaf and Hard of Hearing community is truly remarkable. Our journey may look different than we expected, yet it’s beautiful — full of wonder, love, and meaning. We’ve learned to embrace this journey, to celebrate its beauty, and to recognize that we are exactly where we’re supposed to be.

Noah’s hearing difference does not define him. What defines him is his joy, his determination, his spirit, and the love he gives so freely. We share his story not just to raise awareness, but to remind other families that hearing loss is not the end of a dream — it’s the beginning of a new, powerful, and incredibly meaningful one.

Visit the Hands & Voices website for more family stories.