By Rob Harris

“What does it mean to be a dad when your child’s needs change everything?”

That’s the question I found myself answering—not just once, but every day—after my daughter Isabelle was born. She’s legally blind due to Optic Nerve Hypoplasia (ONH), and she’s also had epilepsy, complex medical needs, and major challenges accessing a fair education.

I wasn’t new to adversity. I grew up in foster care and spent time in group homes on the Western Slope of Colorado. I know what it feels like when systems fail kids. That history didn’t make me bitter—it made me determined. When I became a father, I promised myself that I would never let my children fall through the cracks.

So when Isabelle’s diagnosis came, I didn’t step back—I stepped in.

The Weight of Being a Dad Who Stays

Early on, I realized that fatherhood in this context would look different than what I’d imagined. It meant learning how to advocate at IEP meetings, managing medical equipment, reading peer-reviewed studies, and navigating everything from assistive technology to Medicaid waivers. I was in the thick of it, right next to my wife Susan, who’s an RN and a rock in this journey.

Still, I noticed something—when we showed up at school meetings or medical appointments, I was often the only dad in the room.

Why? Because dads aren’t always invited into the caregiving space. And too often, we convince ourselves we’re not needed or that someone else has it covered. But our kids need us. Fully. Actively. Now.

The 2 A.M. Search That Changed Everything

There was a stretch where Isabelle’s epilepsy had taken over our lives. She was on four anti-seizure medications—psychotropic drugs that left her barely functioning. If you ask her, she’ll tell you she felt like a “limp noodle.” Her quality of life was dismal. At the same time, we were battling a school system that didn’t know how to educate a medically complex, blind student going through daily seizures.

One night—well past midnight, while everyone else was asleep—I was searching for anything that might help. You know those 2 a.m. moments. Desperate, exhausted, and searching for answers.

That’s when I found the Pediatric Epilepsy Surgery Alliance (PESA). Their information was clear, evidence-based, and human. They explained that after two failed medications, surgery should be on the table. For the first time, I felt like someone understood the stakes. I learned about resective surgery and disconnect procedures. But ultimately, after an extensive evaluation with some of the best epilepsy specialists in the country, Isabelle received a Vagus Nerve Stimulator (VNS)—a pacemaker-like device that sends electrical pulses to prevent seizures.

It was a game changer. And I’ll say it clearly: If I hadn’t found PESA that night, our story would look very different.

Through their peer support program and partnership with Parent to Parent USA, I became a trained and certified Peer Supporter. That’s how I learned about Parent to Parent Colorado—and I dove in. Now, I’m an Ambassador helping families, especially those on the Western Slope, find the resources and connection we so desperately need.

That moment of late-night desperation became a turning point—not just in Isabelle’s care, but in my purpose.

Redefining Fatherhood Through Caregiving

Becoming a full-time caregiver didn’t make me “less of a man.” It made me more. I’ve testified in policy hearings, facilitated IEPs for other families, and worked on accessibility at the national level—all while being present for every hospital stay, every school challenge, and every celebration.

This is what modern fatherhood looks like.

We don’t get a pass because it’s hard. We get the opportunity to shape our children’s lives—and the systems they’ll navigate long after we’re gone.

For Dads: Start Here, Start Now

You don’t have to be perfect. You just have to show up. Here are three ways you can start today:

1. Attend one appointment or school meeting. Don’t just sit quietly—ask a question.

2. Take charge of one caregiving task. Whether it’s meds, tech, or therapy logistics, own it.

3. Connect with another dad. You’re not alone, and you don’t need to figure it all out in isolation.

We need more dads who step into the arena—not just to support, but to lead, to partner, and to advocate.

For Moms: Want to Bring Your Partner In?

Here’s what helped me get fully engaged: Susan never treated me like a helper. She treated me like a co-leader. She let me bring my own strengths to the table, even if I approached things differently. That trust and shared ownership made all the difference.

If you’re carrying the load alone, pause and ask your partner what part they can own—not what they can assist with. Invite them into this space not as a backup, but as an equal.

Why I Do This

Isabelle is 18 now. She’s sharp, creative, and fully aware of how hard she’s worked to live her life on her terms. One day, she said, “Dad, you never make me feel like I’m broken.”

That’s what this is all about.

Not fixing our kids. Not rescuing them. But walking beside them—fighting like hell to make sure they’re seen, heard, and valued.

So to every dad out there wondering if you’ve got what it takes—you do.

To every mom trying to carry it all—you don’t have to.

To every family feeling isolated—there are connections waiting for you, even at 2 a.m.

About the Author

Rob Harris is a certified IEP Facilitator, technology expert, and national advocate for blind and visually impaired youth. A father of three and full-time caregiver to his daughter Isabelle, Rob brings lived experience and systems-level expertise to every table he joins. He serves as a Parent Advisor for APH FamilyConnect, an Ambassador with Parent to Parent Colorado, and a tireless champion for family-centered special education, accessibility, and Medicaid navigation. Rob and his wife Susan, a registered nurse, live in Colorado where they raise their family and push for the change they want to see.