As January draws to a close, I’m not even sure where to begin — which, honestly, feels pretty on-brand these days. Life is chaotic, I’m perpetually overwhelmed, and while I always knew having a baby would turn our world upside down, I couldn’t have imagined just how true that would be.
2024 was the hardest year of my life. It was our second year of marriage and my first experience navigating a deployment. My husband was gone for most of the year. A week after he left, I found out I was pregnant with our first child. 9 weeks later, during our first ultrasound, the doctor said the words no parent ever wants to hear: “I’m sorry, but…”
From that moment on, pregnancy became a rhythm of bracing for bad news and praying for a heartbeat at every appointment.
In many ways, we were lucky. My husband came home early and was there for the birth of our daughter. We also had some time to prepare emotionally — we knew she would be born with a genetic disorder, Cornelia de Lange Syndrome (CdLS), and we expected a NICU stay (though nothing prepares you for six weeks in one). We did what so many parents do: we Googled. We researched. And we tried to make sense of a diagnosis that lives on a wide and unpredictable spectrum.
That information helped us prepare, but it also left me terrified. The internet often paints only the worst-case scenarios. I worried about whether we would lose her after all we had already walked through. I wondered if I had what it takes to parent a child with complex needs. And in my most vulnerable moments, I asked myself if my faith could hold under the weight of it all.
In July, our sweet Baby Dot was born. Those first weeks in the NICU were grueling. I learned more about medicine than I ever thought I’d need to know. I picked up a new language — diagnoses, procedures, treatments. I also quickly realized this would become my full-time job. So I resigned from a position I loved to become a stay-at-home mom. (To working parents of medically complex or special needs kids: you have my deepest respect. I can’t fathom doing both.)
At 8 weeks old, we packed up and made a cross-country move back to the West Coast so my husband could check into a new command. I immediately began the exhausting process of establishing care with a new pediatrician and a whole team of specialists.
In 2024 alone, we met with five specialists, began early intervention therapies, and Dot underwent four surgeries. In just the first month of 2025, we’ve added two more specialists and three in-home therapists. Her fifth surgery is already on the calendar, with two more potential ones looming depending on how things go.
Right now, we’re regularly juggling eight different doctors, along with a vision teacher, occupational therapist, and special education teacher. And what I’m realizing as we settle into 2025 is this: the hard season didn’t end on December 31st. There was no magical reset. My house is still a mess. I’m still running on fumes. And my tiny, strong-willed daughter still won’t let me set her down long enough to do the dishes.
And yet — God is still so good. So kind. So present. In the middle of the appointments, the sleep deprivation, the chaos and the questions, He’s here.
The point of this ramble? There’s a lot happening in my world. It’s intense. It’s relentless. And somehow, it’s still filled with joy. I may be tearing the house apart trying to figure out where all the binkies went while my child loudly expresses her displeasure — but even then, there is joy. I wouldn’t trade this life for anything else.
Maybe you’re walking a similar road. Maybe you just want to keep up with our family. Either way — welcome. I’m so glad you’re here. This is Faith in the Frenzy, and it’s a wild ride.