When you first meet our 14-year-old son Koah, he’s overjoyed to talk about laundry, Delta airplanes, and the Kansas City Chiefs—all with an infectious smile. By the end of the conversation, he’ll know your washer and dryer brand, your favorite sports team, and proudly tell you he has two brothers, Harlow and Saylor. He notices everything and reacts with pure, unfiltered joy—like how he can’t stop laughing every single time someone sneezes, no matter where we are. It’s impossible not to laugh along with him.

Koah is a joy to everyone he meets. He makes friends wherever he goes, and people can’t help but love him. He’s genuinely happy, funny, and full of life—but like any teenage boy, his emotions are amplified. The laughter, the tears, the stubbornness, the excitement—they’re all part of the passion and heart that make him Koah. He’s full of light, but he’s also real, and it’s all together what makes him extraordinary.

Koah’s story didn’t start the way we expected. As new parents, you picture milestones—rolling over, sitting up, crawling, walking—but it quickly became clear he wasn’t hitting the typical marks. At 16 months, we learned he had a genetic deletion with no label, no syndrome—just an abnormality. I asked what that meant, and the answer was, “It’s like a library full of books, but one is missing.” That was it. No guide, no instructions—just learning who Koah was and what he needed.

At 4, he was diagnosed with Autism, which finally explained some of the behaviors and quirks we’d been trying to understand for years. His pre-teen years brought more curveballs, testing, and research. Thanks to our team at Salt Health, Autism genomic testing gave us tools to help his body function better. Then, at 11, we learned he had PANS/PANDAS—a breakthrough after years of behavioral unknowns. With a treatment plan in place, he finally had support to find some balance.

Every step of Koah’s life has been a lesson in loving through uncertainty. From walking at 18 months, potty training at 8, to riding a bike at 13, it’s been unpredictable and exhausting. We’ve learned to ebb and flow, adjusting constantly, trying to give him the independence he needs to thrive. Every small victory—big or tiny—feels monumental because of how far he’s come.

There have been dark times, but they’ve been worth it. God has given us strength to care for this child we prayed for. Having a child with special needs shows you the world through a different lens—it humbles you, stretches you, and can be lonely if you don’t have others walking the same path. Knowing we weren’t alone has been a lifeline when we’ve felt worn down.

There are so many moments I could share—good and bad—that are part of raising Koah. Like the phase before PANS/PANDAS, when he broke things constantly. At one point, ten pots with plants were shattered in a single week because of how his body was feeling. Jef and I would feel our anger, only to follow it by asking forgiveness—to him and each other—for losing patience in moments of stress and chaos. As exhausted, worn-down parents, we were just trying to survive while helping Koah navigate a world that often felt overwhelming.

Life with Koah and his brothers hasn’t been easy, and it’s far from perfect. There have been moments of patience, love, and teamwork—but also fights, harsh words, and times when everyone gets it wrong. Koah isn’t exempt from conflict, and his brothers, like any kids, struggle to respond perfectly. It’s messy, loud, and exhausting—but real. They’re learning what it means to love someone whose world doesn’t look like theirs, to navigate conflict, and to see people differently—a lesson that will stick with them for life.

Koah, whether happy or sad, is passionate and unfiltered, learning to navigate that in everyday life. He fills our hearts with laughter through unexpected, witty moments. Even in the hardest times, his joy shines bright. I’ll never forget this past summer at a friend’s wedding—during a quiet moment of prayer, Koah began praying aloud in front of about 75 people. His words were thoughtful, eloquent, and full of heart, blessing our friends in a way that left me speechless. After all we’ve been through, the beauty God created in him radiated so brightly.

God prepared us for this. While Koah is intelligent and wants to do his best, he often battles a body and brain that don’t always cooperate, pushing him into fight-or-flight responses beyond his control. These reactions have become part of everyday life in our home.

For those without children with special needs, I ask: when you see a child in public who isn’t behaving as you expect, pause before judging. A little patience and understanding can make a huge difference for a family carrying a heavy weight most people will never truly understand.

For parents who have just received a diagnosis—take a deep breath. You’re going to be okay. Feeling overwhelmed is normal. This will be one of the hardest challenges of your life, but also one of the most meaningful. Your story will stretch you, and it will also reveal a love and strength you didn’t know you had.

Parenting is full of highs and lows—joy, exhaustion, laughter, and tears. Adding a diagnosis doesn’t take away that joy; it layers in new challenges alongside the sweetness. There will be moments that feel unbearably heavy, but there will also be small victories that remind you why you keep showing up.

That’s the duality of this journey—it is demanding and deeply rewarding, often at the same time. Some days will break you, others will surprise you, and some will make you laugh so hard you forget, even for a moment, why it’s been hard at all.

Originally published in 2025

Updated from October 2026:

A year after his mom, Erykah Groff, first shared his story with Peekaboo, Koah is now 15 and navigating a whole new chapter: high school! He's in ninth grade, and according to Erykah, so far, it's been a great experience. He's continuing to grow, learn and discover new levels of independence in this new setting. And some things haven't changed one bit, including his love for washers, dryers and airplanes!

We're excited to share Erykah's original story again, a heartfelt and honest look at life with Koah, the challenges and victories along the way, and the beautiful lessons her family continues to learn together.