I don’t update this blog nearly as much as I used to. For a while, things seemed pretty stable, and honestly, there just wasn’t as much to share.
When I first started writing here, so much of our journey revolved around Brody’s hearing loss. From his diagnosis and cochlear implant surgeries to the years of working on his speech, language, and communication skills, there was always something happening.
Over the years, Brody has done phenomenally well with his cochlear implants and communication. He has become a great advocate for himself (at least when he realizes he’s missing something), and we often hear people say, “I didn’t even know you were deaf!”
And that’s both wonderful and frustrating at the same time.
It’s wonderful that his communication skills have developed to the point that people don’t immediately recognize his hearing loss. But it’s also frustrating because when people don’t realize he’s deaf, they tend to forget that he still needs accommodations and communication strategies to have full access to what’s happening around him. Just because he communicates well doesn’t mean he hears everything. And when people forget that, he’s the one who has to work even harder to keep up and be included.
But over the last several years, the focus of our journey has shifted more and more toward the other part of Usher syndrome: his vision loss.
Brody has retinitis pigmentosa (RP), a progressive condition that affects the retina. It causes night blindness and the gradual loss of peripheral vision. Essentially, his world is slowly getting smaller.
Every two years, we attend a low vision clinic, and those appointments give us more information than we often get from multiple other eye appointments combined. They look at everything from depth perception and color perception to how he functions in the dark, his white cane skills, the font size he needs to read comfortably, visual acuity, peripheral vision, and so much more.
While we’re currently searching for an eye doctor who meets my standards (and apparently those standards are pretty high), I absolutely love his low vision team. The team members may change from visit to visit, but every experience we’ve had with them has been wonderful.
This past Wednesday was no different.
Dr. Sanchez led his appointment, and I cannot say enough good things about her. After meeting her and seeing how she worked with Brody, I would trust her with all of his medical care if I could. She was an absolute bright spot in this journey. She answered more questions and provided more information than I’ve ever received from someone in the field.
But what impressed me most was that she talked to Brody.
Not just to me. Not over him. Not around him.
She talked directly to him, included him in the conversations, explained what she was seeing, and treated him like the patient who is actually living this journey.
That means more than I can explain.
Wednesday was the appointment. Friday, we received the report.
And Friday was hard.
We know that every time we go to the eye doctor, his vision is likely going to be worse. That’s the reality of a progressive condition. We know it’s coming. We prepare ourselves for it. But actually seeing those numbers in a report is a completely different feeling.
It’s like getting punched in the gut.
Two years ago, Brody had approximately 40 degrees of his visual field remaining. This time, his measurements ranged from about 15 to 30 degrees, depending on the direction.
For those unfamiliar with visual fields, think about everything you can see without moving your eyes or turning your head. You have your central vision, which is what you’re looking directly at, but you also have peripheral vision. Most people think of peripheral vision as what you can see to either side, but it also includes what you can see above and below you.
Brody’s remaining vision isn’t a perfect circle. It’s more like a squished oval. He has only about 15 degrees of visual field remaining in the upper portion, around 30 degrees toward the inner sides, and approximately 25–30 degrees along the outside and bottom.
It’s hard to wrap your head around just how much of the world he isn’t seeing.
But this report hit particularly hard for another reason.
Driving.
Based on his current visual field measurements, Brody no longer meets Kentucky’s vision requirements for getting a driver’s license.
And that one hurts.
We have known for years that this was a very real possibility. I’ve been preparing Brody for the idea that he might never be able to drive. We’ve talked about it many times, and I’ve tried to make sure he understands that there are other ways to be independent.
But knowing something might happen and realizing it actually has happened are two very different things.
Getting your driver’s license is such a huge milestone for a teenager. It’s something most kids look forward to for years. The freedom, the independence, the excitement of getting behind the wheel for the first time.
And now, that’s a milestone he likely won’t get to experience.
I spent a good portion of Friday sitting, standing, and crying as I processed the report. And then came the part I was dreading even more: telling Brody.
When I finally told him what the results meant for driving, his response was pretty simple.
“Well, that sucks.”
He gave me a hug.
And then he moved on.
Meanwhile, I was still trying to hold myself together.
That kid. He is something else.
He is incredibly resilient. He has faced challenges his entire life that most people will never understand, and somehow, he continues to adapt and move forward.
And the thing is, nothing really changes in our day-to-day life because of this report.
He’s still doing marching band. He played golf this fall. And as I’m writing this, I just dropped him off at an archery clinic.
He’s still doing all the things he loves.
If you spend time around Brody, you probably wouldn’t even realize how much vision he’s lost. At least not right away.
But then you might notice him scanning an area, trying to find someone with his eyes. Or walking right into the metal detectors at school because he didn’t see them. Or tripping over something on the floor because it wasn’t where he expected it to be.
Those are the moments when his vision loss becomes more apparent.
Most of the time, though, you just see Brody.
A kid who loves band, golf, Scouts, and trying new things. A kid who is involved in just about everything he can possibly fit into his schedule. A kid who has learned to adapt to a world that isn’t always designed with his needs in mind.
And sometimes I think people forget just how much work that takes.
Which makes the timing of this update particularly fitting.
October 18-24 is Invisible Disabilities Week.
An invisible disability is exactly what it sounds like. It’s a disability that you can’t necessarily see just by looking at someone.
You can’t look at Brody and know how much he’s missing when people are talking around him. You can’t look at him and know that he may not see you standing just a few feet to his side. You can’t see how much concentration, effort, and energy it takes for him to navigate situations that most of us don’t even think twice about.
And because you can’t see it, it’s easy to forget.
That’s why awareness matters.
It’s not about feeling sorry for him. It’s not about treating him differently or assuming he can’t do something because he has a disability.
It’s about recognizing that he may need support, accommodations, or a little extra understanding to have the same opportunities as everyone else.
It’s about remembering that someone can appear to be doing just fine while working twice as hard as everyone around them.
And it’s about treating people with respect and dignity, even when you don’t fully understand what they’re experiencing.
I’m still processing this latest chapter of our journey. I think part of being a parent is grieving the opportunities your child may not have, even while celebrating all the incredible things they do.
But Brody?
He’s already moved on to the next adventure.
And I guess I’ll just keep doing my best to keep up with him.
Because while his field of vision continues to get smaller, I’m going to do everything I can to make sure his world doesn’t.
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