I have never been someone who felt medically savvy. I didn’t know the language, the systems, or how to advocate inside a world of specialists and insurance battles. So when God gave me a son who seemed determined to defy the medical field—especially when it comes to “rare” diagnoses—I was thrown into a life I never imagined for myself.

There have been many moments this year when I asked God why. Why this path? Why this diagnosis? Why my child? And while I haven’t been given clear answers, I have been given something else—His presence. A quiet steadiness in the middle of chaos that reminds me I am not walking this road alone.

People often tell me they don’t know how I do it. The truth is, I don’t feel like I am doing it—at least not successfully. While others see a happy, thriving child who has exceeded expectations, I see the gaps. I see what I didn’t do, what I could have done better.

If only I had called that doctor sooner. If only I had fought insurance harder. Maybe we would have caught it earlier.

Those thoughts flood my mind more often than I’d like to admit. I bring them to God, sometimes in prayer, sometimes in tears. And while I still wrestle with the weight of what ifs, I’m learning to trust that God’s grace covers even the places where I feel I fell short.

The medical journey has been a constant cycle. Doctors contradict one another. One points out a concern and sends us to a specialist, only for that specialist to say, “Oh, that’s not an issue—but we’re worried about this instead.” And just like that, we’re sent somewhere else. More appointments. More tests. Sometimes answers. Sometimes nothing.

Round and round we go.

Somewhere along the way, I learned to be Oliver’s voice—because someone has to be. And his dad learned to be the voice of reason, grounding us when emotions and exhaustion threaten to take over. I believe God gave Oliver the perfect team together.

It’s funny how life works. I never thought I’d be so conflicted about being right—especially about something I desperately didn’t want to be right about. If I’ve learned anything this year, it’s this: doctors may be medical experts, but they are not the experts on Oliver. God entrusted him to us, and that calling carries weight and responsibility I don’t take lightly.

We are a family living with a complex, terminal diagnosis. And this year forced me to reflect in ways I wasn’t prepared for. I don’t know if I will ever fully come to terms with my son’s prognosis. But I do know that God has met us in it. He has strengthened our marriage, deepened our faith, and taught us how to rely on Him daily—sometimes hour by hour.

This year felt like a year of testing for all of us.

Oliver has made incredible progress. He’s growing, communicating his needs, eating more, and following directions. I see God’s hand in each small victory. But progress doesn’t come without trial. As he gets older, he also gets stronger—and more determined. That strength can make things like medications, blood draws, and sometimes everyday life incredibly hard.

Through it all, God has been teaching me something I didn’t expect: caring for myself is not selfish—it’s stewardship. It doesn’t matter how much of myself I pour out for Oliver if I’m not here to love him well. Making sure I sleep and eat is just as important as making sure he does. God cares about our whole family, not just our circumstances.

I still don’t have all the answers. My faith hasn’t removed the fear or the grief. But it has given me hope that doesn’t depend on outcomes. This year didn’t make me an expert in medicine, and it didn’t make the diagnosis easier—but it taught me how to surrender, how to trust, and how to believe that even in this, God is near.

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