The Story I Needed

Why I wrote Beyond the Divide (coming soon).

I don't remember the drive home.

I remember sitting in the eye doctor's office for what I thought would be a routine eye exam. I remember the doctor explaining that my son had Usher syndrome—the leading genetic cause of deafblindness.

I remember hearing the words.

I remember nodding.

And then...

nothing.

To this day, I honestly don't remember how I got home. I don't remember whether I cried in the car. I don't remember what I said to my husband. I don't even remember walking through the front door. I think my mind simply did what it needed to do until my heart could catch up.

There are moments in life that quietly divide our lives into a before and an after.

That was one of mine.

In the weeks that followed, everyone wanted to help.

They handed me research articles. Pamphlets. Books. Phone numbers. Appointments with specialists.

I'm grateful for every one of them. They helped me understand my son's diagnosis.

But looking back, I realize they weren't what I needed most.

What I needed was someone's story, someone who had walked a similar path.

Not because I wanted someone to tell me what decisions to make.

Not because I thought there was a right way through it.

I simply needed to meet someone who had stood where I was standing.

Someone who could look me in the eye and say, "I remember."

Someone who could tell me that, while life would never be the same, it wouldn't always feel like this.

I needed someone who could help me imagine a future that I couldn't yet see for myself.

For a long time, I thought that was just my story.

Now I think it's true for almost all of us.

Every family has a story they never expected to live.

Sometimes it's a diagnosis.

Sometimes it's cancer.

Or addiction.

Or divorce.

Or infertility.

Or grief.

Or mental illness.

Life has a way of introducing us to stories we never imagined would become our own.

When that happens, information helps us understand what's in front of us.

Stories help us imagine what comes next.

That's why I wrote Beyond the Divide.

Not because I have the answers.

After more than twenty-five years as a mother, educator, researcher, and advocate, I've become less interested in having answers and more interested in understanding people.

I've learned that there is no perfect roadmap.

Every family is different. Every decision comes with tradeoffs. Every path looks a little different.

This isn't another parenting manual.

There are wonderful books that explain diagnoses, therapies, educational rights, genetics, communication choices, and medical research. I read almost all of them. They helped me understand my son's diagnosis. But they couldn't tell me what it would feel like to become this version of myself.

They couldn't tell me how lonely advocacy could sometimes feel.

How much I would question myself.

How our family would change.

How our marriage would be stretched.

How our dreams would shift.

Or how this little boy I worried so much about would become one of my greatest teachers.

If we were sitting together over coffee today, I wouldn't spend much time giving advice. I'd ask how you're doing. Not just your child. You. How is your family holding up? What's been the hardest part What has surprised you? Where have you found hope?

Because before we talk about diagnoses or therapies or educational plans, I want to understand what life has been like since the ground shifted beneath your feet.

One of the hardest things about receiving a diagnosis is that it doesn't just change what you know.

It changes the story you've been telling yourself about the future.

I remember wondering what life would look like. Would he have friends? Would he go to college Would he fall in love? Would he have the life I had imagined for him?

Looking back, I smile at those questions. Not because they weren't real. But because I couldn't yet see that my son was still exactly who he had been the day before.

He still laughed at the same silly things. He still loved to explore. He still reached for my hand.

The diagnosis changed what we knew. It didn't change who he was.

And over time, I realized something else.

We were still the same family too. Not unchanged. We had changed. But we were okay. We were simply learning to live a different story.

Looking back, I think that's true of every family.

We all carry stories that have shaped us. Most of them are invisible.

That's why, when I first started writing Beyond the Divide, I thought I was writing about disability.

Somewhere along the way, I realized I was writing about something much bigger.

I was writing about the stories we all carry.

Because I don't think the biggest divide between us is disability.

Or politics.

Or religion.

Or culture.

I think it's how little we know about one another.

It's easy to make assumptions about people when all we can see is a moment.

A wheelchair. A white cane. A hearing aid. A child having a meltdown in the grocery store. A family that looks different from our own.

But stories slow us down and invite us to look again.

To ask another question.

To become curious instead of certain.

Over the years, I've watched that happen again and again.

Someone hears one of my sons' stories, and the questions begin to change.

Instead of asking, "What's wrong with him?" They ask, "Tell me about him."

That small shift changes everything.

Because once we know someone's story, it's much harder to reduce them to a label or to make assumptions.

My sons taught me that.

I thought I was learning how to raise children with disabilities.

What they were really teaching me was how to see people more fully.

That's the book I wrote. A book that begins with disability but doesn't end there. A book about families. About curiosity. About listening. About the stories that quietly shape every one of us.

If you're a parent standing where I once stood, I hope this book feels like sitting across from someone who remembers.

If you've never walked this road, I hope it helps you see the families around you a little differently.

Either way, I hope it leaves you a little more curious than you were before you opened it.

Because I still believe the thing I needed most twenty-five years ago wasn't more information.

It was a story.

I hope Beyond the Divide becomes that story for someone else.

Beyond the Divide: The Stories That Bring Us Together is coming soon, and I can't wait to share it with you.