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One Year Later: Our Journey Through Fear, Community, and Hope
by Michael Poalise
February 22, 2026
So many emotions run through my head every single day. Some mornings I wake up hoping this past year was just a bad dream. I want to go back to a time when I had no idea what Usher Syndrome even was. I ask myself, how can we be that unlucky? How could this happen to my son?
It has been just over a year since the diagnosis, and I remember that day almost moment by moment. It was an ordinary Tuesday. I was at my office and my wife was working from home. We had a virtual call with the genetic counselor, thinking it would be a quick check in. I had no idea our life was about to change in ways I could not even understand yet. The news he shared was heavy in a way I had never felt before. My brain could not accept the words. All I could process was that my son, who was already deaf, would also lose his vision.
A part of me died that day. I am not the same person I was before that call, and I know that I never will be. When my wife and I look at pictures now, I wonder whether they were taken before the diagnosis or after. I can see the difference in my own eyes. A part of me was lost that day, and our lives were split in two. Now, there is a before and an after. This year changed how I see the world, but it hasn’t changed Joey. He is still the same kid who makes us laugh nonstop, pushes every boundary, and fills our home with energy. Somehow, through the hardest year of our lives, he has pulled us forward one day at a time.
The Day Our World Split in Two
I remember watching the counselor’s face on the screen before he even spoke, feeling something shift. He started explaining the results, but my brain shut off as terms like progressive vision loss, night blindness, peripheral vision, and retinitis pigmentosa blurred together. I was certain he had mixed something up. We had already gone through so much during the pregnancy and had only just come to terms with Joey’s hearing loss. We had worked so hard to get to that point. I couldn’t comprehend how this could be our story on top of everything else we’ve gone through.
I imagine there are moments in every parent’s life where you feel something break inside you. Maybe not in a dramatic way, or in a way anyone else can see, but you feel it. While some cases may not feel as extreme, that feeling is there for all parents. For Autumn and I, it was hearing the words that one day our child will lose his vision and already is hard of hearing. I could not imagine what his fears would be. I could not picture him reaching for me and not being able to see where I was. That thought alone took the air out of me.
When the call ended, I remember just screaming. My wife and I were not together so I could not hold her. There was no plan. There was no next step. There was no quick fix. Just the weight of something we never saw coming and it felt like the entire world had split in two. There was our life before that call and there was whatever our life was going to look like after it. And I knew nothing would ever be the same.
Joey pointing at a Deaf Child Area sign
Learning to Live in the After
The weeks after the diagnosis felt like trying to walk while the ground was still moving. Nothing felt steady or familiar. You wake up every day hoping the feeling in the pit of your stomach would be gone, but it’s not. It just intensifies, following you into work, into every conversation. I spent my nights searching medical studies, articles, and other families’ stories for anything that made sense. Nearly all of it terrified me but some gave me some hope I did not know how to trust yet.
Meanwhile Joey just kept being Joey. He was crawling, then walking, then running. He was laughing, climbing on everything he could reach, being the same stubborn little kid who never stops moving. Watching him, it was almost confusing. How could he be so full of life while I was walking around feeling hollow and constantly replaying the diagnosis in my head. Eventually, it hit me. Joey was not living in the diagnosis. I was. He was living in the moment. He was learning how to communicate. He was exploring. He was growing. He had no idea he was supposed to worry about the future. He was just being a kid.
Michael with Joey at the beach
And that started to pull me forward.
Slowly I realized we were not the only ones going through this. We started meeting other parents who had stood exactly where we were standing. People who understood the fear, the confusion, the late night researching, the moments of guilt, the anger, the hope. Conversations with those families changed things. They showed me what was possible. They showed me what resilience looks like. They showed me what it means to keep going even when your heart is still trying to catch up to your reality.
Organizations like the Usher Syndrome Society became the lifelines we didn’t know we needed. These people were CHAMPIONS who had started paving the way years ago. Families offering support, resources, and strength without expecting anything in return. And at the center of so much of it was Nancy, whose leadership and compassion have carried so many families through their hardest moments. Most importantly they are trying to find a cure. Their guidance, energy, and commitment to our kids gave us direction when we felt lost.
Finding Strength in Community
Our community grew in more ways than one this past year. The Usher community wrapped around us in a way that still amazes me. But another community quietly stepped in too, and that was the one waiting for us when we moved back to Hammonton, NJ.
At first our move felt practical. Familiarity was a big factor in our decision. But I never expected how important that small town support system would become. Hammonton gave us a sense of grounding we did not realize we needed. People checked in. People asked about Joey. People cared about our family in a way that feels personal and real.
Between both communities, the one spread across the world through the Usher syndrome Society and the one right in our own neighborhood, we felt supported when we needed it most. The Usher community understood our fears while Hammonton will be where Joey calls home.
Family picture in Central Park for an Usher syndrome event
Family picture in front of Magic Kingdom
One Year Later
One year after learning about Joeys Diagnosis our family took a trip to Disney. We didn’t plan to purposefully go 1 year from November 19th but as the date got closer, I realized we were going back exactly one year to the day. The same date that shook our world. One year later when we walked into Disney, I looked at Joey and saw strength, growth and light. We have made unbelievable progress in one year. Our confidence is bigger and Joeys personality fills every space he enters. Joey is a BOSS!
Watching him run toward the characters, chase his brother, and smiling from ear to ear made something inside me settle that had been unsettled for a long time. Disney this year was not an escape. It was proof. Proof of resilience. Proof of joy. Proof that even when your world changes in ways you never imagined, it can still be beautiful, full, and moving forward.
Looking Forward with Hope
When we first learned Joey had Usher syndrome I thought the future had been rewritten. It has, but not in the way I feared. This year taught us that although the unknowns are real, so is the hope. I’d be lying if I didn’t say that on most days I need to check myself into this mindset. As a Father I have a responsibility to lead by example. Joey needs a strong father and I intend to be that for him.
Research is happening right now for Joey’s specific genetic mutation. Researchers are pushing the science forward every day with people like Nancy leading the fight with passion and purpose. Being part of that gives us strength and reminds us that we are not powerless.
Autumn with Joey and Mikey
More importantly, Joey is not defined by his medical diagnosis. He is defined by who he is today. A kid full of fire, humor, stubbornness, and love. A kid who keeps moving forward without ever knowing the impact he has on us.
A year ago we were thrown into a world we knew nothing about. Today we stand in it stronger, more connected, and more hopeful. This is only the beginning of Joey’s story. I believe with everything in me that his story will be one of progress, breakthroughs, and a life filled with moments that remind us why we never stopped believing in him.
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