Faith Through the Fog: Our Journey with OMS, Eight Years Later
In the month of June, I’m leaning into something I’ve long put off—sharing more of our story, the unfiltered version. Eight years ago, our lives were flipped upside down when our youngest son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), a rare and often misunderstood neurological disorder.
It’s a journey that has left a permanent mark on our family, especially on me as a mother—and as a woman of faith. This summer, I’m pulling back the curtain. Not for sympathy, not for shock value, but to honor my son’s story… and to tell mine.
Honoring a Warrior: My Son’s Story
Lord willing, I hope to get my son to help me tell his side—his memories, his moments, and what he understands of it all, eight years later. He remembers some things with a sharp clarity, and others, he doesn’t recall at all. That alone is hard for my mama heart to sit with.
But I believe there’s healing in the telling. There’s something holy about giving space to the hard, and allowing our kids—especially those who’ve been through trauma—to have a voice. This month, I want to hold space for him. And for me, too.
A Mother’s Faith in the Middle of the Fire
This journey changed me. It didn’t just impact our schedule or our parenting style. OMS changed who I am. It reshaped how I see God, how I pray, how I walk through suffering, and how I love others who are also barely hanging on.
There’s a lot I still can’t fully unpack. This diagnosis came in like a wrecking ball—but so did the rest of my life at the time. It wasn’t just my son’s illness. It was everything else swirling around it: the weight of other children to care for, my own health, marital strain, and what I believe was a full-blown nervous breakdown that I didn’t have time to name.
And yet—through it all—God never left.
What Is Opsoclonus Myoclonus Syndrome (OMS)?
If you’ve never heard of OMS, you’re not alone. It’s an ultra-rare autoimmune neurological condition that often presents suddenly and without warning. It affects motor control, speech, behavior, and sometimes cognition. Most of all, it brings chaos and confusion—not just to the child, but to every person who loves them.
This month, I’ll be sharing more about what OMS is… and what it is not. There are so many misconceptions, and I believe awareness can be a bridge toward compassion. Toward better care. Toward understanding what families like ours really go through behind the scenes.
Why Now?
Why share this now, after eight years? Honestly, I don’t think I could have done this sooner. Even now, parts of this feel too fresh to touch. Some memories still sting like they happened yesterday. But I’m learning that healing doesn’t mean forgetting—it means finally making peace with what has been, and giving God permission to use it.
This month is about remembrance. It’s about grief. It’s about gratitude. And it’s about faith—real, raw, wrestling-in-the-dark kind of faith.
What to Expect This Month
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Personal stories from the early days of our OMS journey
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Reflections on how it shaped (and tested) my faith
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Insights from my son, as he remembers his own story
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Education and awareness about OMS for those who want to learn more
If you’ve ever felt like life hit you out of nowhere… if your faith has ever been shaken by a diagnosis, a trauma, or a season of survival—you’re not alone.
Walking Together
My hope is that this corner of the internet becomes a place where people feel seen. Where messy faith is still welcome. Where God’s presence is real, even when the path feels anything but clear.
Thank you for being here. For reading. For walking this with us. I pray that as I share this story, God uses it to minister to your heart in some way—even if your road looks completely different.
He is faithful. Even when it’s foggy, even when we’re broken, and even when we can’t see the way forward. He is still God.
Here’s to healing. And to the God who walks with us through the fire, not just on the other side of it.
I’d love to hear from you:
If you have questions about OMS, drop them in the comments or message me privately. If you’ve walked through a similar season of suffering or medical trauma, I see you. Let’s hold space for each other.
💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.
We offer trauma-informed, faith-filled therapy for individuals, couples, and families.
📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.
You don’t have to walk this journey alone. Hope starts here.
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