Usher Syndrome Awareness Day - Awareness Isn't the Same as Understanding
Every year, on the third Saturday in September, I write something for Usher Syndrome Awareness Day.
I've been doing this for a long time.
And I've told a lot of versions of our story.
I've written about diagnosis. Grief. Hope. Research. Advocacy. Finding purpose in something I never would have chosen. I've written about my sons and all the ways they have amazed me.
Two years ago, I wrote about reframing my outlook. I wrote that I was trying to move from asking, “Why is this happening to us?” to “Why is this happening for us?”
I still believe that.
But this year, I want to tell a slightly different truth.
This has been really, really hard.
There. I said it.
More than twenty years have passed since I sat in an eye doctor's office and was told that my oldest son, Conner, would eventually lose his vision.
I can still remember that day.
I can remember the shock. I can't remember driving home. But I can remember desperately wanting someone to tell me what to do next.
And then I did what I have always done when life hands me something I don't understand.
I started trying to understand it.
We started a foundation. I learned everything I could about Usher syndrome. I became an advocate. Eventually I went back to school. I studied families and systems and deafblindness. I earned a Ph.D. I worked in the field. I conducted research. I helped other families navigate systems I had once struggled to navigate myself.
I built an enormous part of my life around trying to make this road a little easier for the families coming behind us.
And somehow, more than two decades have passed.
And My Boys Grew Up
That's the part that gets me this year.
In my 2024 Usher Syndrome Awareness Day blog, I wrote about 16-year-old Dalton starting Running Start.
Now he's in college. College.
He's living away from home, building his own community, making his own decisions and figuring out who he is separate from me.
There was a time when I couldn't imagine that far ahead.
When your child receives a diagnosis like Usher syndrome, people tell you about everything they might lose.
Hearing.
Vision.
Balance.
Independence.
The future can suddenly feel like a long list of things to fear.
What they don't tell you is that your child is still going to grow up.
He's going to make you laugh.
He's going to frustrate you.
He's going to find his people.
He's going to leave his stuff everywhere.
He's going to become an advocate—or decide he doesn't feel like talking about Usher syndrome at all that day.
He's going to go to college.
He's going to build a life that belongs to him.
Usher syndrome is part of Dalton's story.
But it isn't the whole story.
And the same is true for Conner.
Now Conner and I Are Going to Washington
In a little over a week, I'm facilitativing a trip to Washington, D.C., with a small delegation of self-advocates and professionals from the blindness, low vision, and deafblindness communities.
And Conner is coming with me.
Even writing that makes me emotional.
The little boy whose diagnosis changed the trajectory of my entire life is now 27 years old, and we're going to Washington together.
Not so I can speak for him.
So he can speak for himself.
That distinction matters enormously to me.
For years, I was the mom at the table.
I was the one trying to explain what my children needed. I learned acronyms and laws and systems. I learned how to push when something wasn't right. I learned how to make people listen.
Eventually that advocacy became research and professional work.
But the goal was never to become the permanent voice for my children.
The goal was always for them to have their own.
And now I get to stand beside my adult son while he uses his.
There is something incredibly full circle about that.
And there is something incredibly painful about why we still need to go.
Because People Still Don't Understand Deafblindness
This may be the part of our journey that has surprised me most.
After all these years, I still find myself explaining deafblindness.
Again.
And again.
And again.
People hear “deafblind” and imagine someone who can neither hear nor see anything. They think of Hellen Keller.
That's not always what deafblindness means.
It is the combination of hearing and vision loss—and that combination creates needs that are different from hearing loss alone or vision loss alone.
One plus one doesn't equal two here.
It creates something different.
That matters in a classroom.
It matters when navigating a college campus.
It matters when looking for a job.
It matters when accessing technology.
It matters in transportation, communication, relationships and independence.
It matters when policymakers design programs and decide where resources go.
And when people don't understand deafblindness, people with deafblindness can disappear between systems.
Too deaf for one.
Not blind enough for another.
Served for one disability without anyone understanding what happens when you combine the two.
Families become the translators between systems that should already know how to communicate with one another.
I know because I've spent much of my adult life doing exactly that.
And it is exhausting.
I Want Awareness to Mean More
So this year, I'm not asking people simply to know that Usher syndrome exists.
That's important. But after more than twenty years in this community, I want more.
I want understanding.
I want educators who understand deafblindness.
I want systems that recognize children with combined hearing and vision loss early enough to actually support them.
I want families to have access to people who can help them navigate what comes next instead of being handed a diagnosis and sent home to Google it.
I want young people with Usher syndrome to grow up surrounded by expectations for what they can do, while still having honest conversations about the accommodations and support they need.
I want them to have access to college.
Careers.
Technology.
Community.
Love.
Adventure.
Independence.
Choice.
And I want them at the tables where decisions about their lives are being made.
Not as inspirational stories. As leaders.
The Hard and the Beautiful Can Exist Together
Maybe that's what I've learned most in these twenty-plus years.
I don't have to turn the hard parts into something beautiful in order for my life to have meaning.
Some of this has just been hard.
Watching your child's vision change is hard.
Watching them work harder to access things other people take for granted is hard.
Fighting systems is hard.
Worrying about the future is hard.
Being the person who constantly has to explain, advocate, translate and push is hard.
There have been moments when I have been angry.
There have been moments when I have been terrified.
There have been moments when I have been so tired of advocating that I wanted someone else to please pick up the darn torch for a while.
And there have also been extraordinary moments.
Both things are true.
Usher syndrome brought people into my life whom I deeply love.
It helped me find my voice.
It shaped my career.
It led me to research questions I desperately wanted answered.
It introduced me to families who changed me.
It helped me understand that lived experience isn't something we add to professional expertise as an afterthought.
It is expertise.
And perhaps most importantly, it gave me a front-row seat to watch two remarkable human beings become themselves. They have taught me so much.
Not despite Usher syndrome.
Not because of Usher syndrome.
Just as themselves.
This Saturday
This Saturday, September 19, is Usher Syndrome Awareness Day.
The 2026 theme is “Your Diagnosis Is Only Part of Your Story.”
I love that.
Because Conner's story is so much bigger than Usher syndrome.
Dalton's story is so much bigger than Usher syndrome.
And my story is bigger than being their mom and advocate.
But Usher syndrome is woven through all of our stories.
I don't need to pretend I'm grateful for every part of it.
I'm not.
What I am grateful for is them.
I'm grateful for the community that has held us when this was too heavy to carry alone.
I'm grateful for every researcher, teacher, intervener, advocate, professional, friend and family member who has walked some portion of this road with us.
And I'm incredibly grateful that after all these years, I still get to be part of what comes next.
Next week, Conner and I will go to Washington, D.C.
Twenty-plus years ago, I was a terrified mom sitting in an eye doctor's office wondering what kind of future my little boy could possibly have.
Next week, I'll walk into rooms in our nation's capital beside the grown man he became.
I won't be there to speak for him.
I'll be there to make sure there's room for him to speak.
And maybe that's what awareness should ultimately lead to.
Not pity.
Not inspiration.
Not even just understanding.
A seat at the table.
Happy Usher Syndrome Awareness Day.
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