Katie's Story: Part 1

There’s a quiet kind of grief that no one really talks about.

Not the kind that comes with casseroles or sympathy cards. Not the kind marked by loss, exactly—but a grief that settles into your chest when life looks different than you thought it would.

Before Katie was born, we were told we were having a healthy baby girl. We pictured sweet baby snuggles, late-night feedings (the cute kind), first words, messy birthday parties, and playdates full of laughter and pretend games. We imagined her future like most parents do—easily, without question.

But when she arrived, everything changed.

Katie was born with a complete bilateral cleft palate, Pierre Robin sequence, micrognathia, and a congenital heart defect (ASD). We were suddenly thrust into the world of NICUs and specialists—nine, to be exact. She was placed on an NG tube, and our first lessons in parenting her weren’t about swaddling or burping. They were about gravity feeds, careful positioning, and making sure her tiny body could take in what it needed to grow.

We learned how to feed her all over again—slowly, carefully, praying every ounce stayed down. We learned to carry medical terminology like a second language. And we learned that this little girl’s story would unfold in her own time, in her own way.

And through all of it—through every sleepless night, every surgery, every tear-filled appointment—Katie has taught us more than we ever could have imagined.

She is brave. 

She is hilarious.

She is sharp and stubborn and full of light. 

She is not “less than.”

She is just uniquely made.

She teaches us daily how to brush off the commentary, the stares, the judgment—often with more grace than the adults in her life can muster.

We’ve learned how to communicate differently with her, to lean into her rhythms, and to hold both grace and expectations at the same time.

Because yes—she is still held to the same standards as the rest of our children. But there is also room for understanding.

The thing that people don’t always see is what happens inside our home. They don’t see that, five years in, she and I are still up multiple times a night due to obstructive sleep apnea. They don’t see how that lack of rest affects her mood, her behavior, her ability to cope with a loud experience—a family gathering, a church classroom, a holiday parade.

When Katie’s tired, her feelings get bigger. Her excitement or frustration can jump out of her in a way that catches people off guard. She’s just overtired, overstimulated, and still figuring it all out.

They see the outburst, but not the why. They hear the behavior, but not the exhaustion underneath it.

And sometimes, I feel that weight. 

Not because I’m ashamed—but because we live a kind of reality that often goes unseen.

It can be lonely. It can feel like we’re being judged for things people don’t understand. It can feel like we’re parenting in an invisible world.

But what grounds me—what keeps me going—is Katie herself. The way she lights up when she’s proud of something. The way she keeps going, even when things are hard. The way she has redefined for us what strength, communication, and connection look like.

There was grief, and sometimes there still is. But there is also deep, aching love. Fierce pride. So much laughter.

This is not a sad story. It’s a story still unfolding.

A story about a girl who is strong and smart and funny—and who just happens to have to work a little harder at some things.

And it’s about the parents learning, every day, how to love her well in a world that doesn’t always understand.