Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Beginnings: The End of One Chapter, the Start of Another

stay inspired. never stop creating. (5)

New beginnings.


They carry a quiet kind of hope—soft, steady, and full of promise. Today is the last day of June, and with it comes a shift. This is the final post I will write about our journey with Opsoclonus Myoclonus Syndrome (OMS). It’s not the end of the story, but it is the closing of a long and winding chapter—one that has shaped us in more ways than I can count.

Eight years ago, our lives were forever changed when my son was diagnosed with OMS. Everything I thought I knew about parenting, about faith, about strength—was redefined in those early days of chaos and uncertainty. We were thrown into a world of specialists, treatments, therapies, and questions with no easy answers. But through it all, one thing remained constant: God’s faithfulness.

There were moments I didn’t think I could keep going. Moments of fear so deep, it took my breath away. But my son—my precious warrior—kept fighting. And because he never gave up, neither did I.

Today, he is alive. That alone is a miracle and testimony to God’s mercy and power. He still has struggles, and we don’t know what his future holds. But we rest in this truth:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a future and a hope.”
—Jeremiah 29:11

We cling to that promise. God has a plan for my son—a plan far greater than anything we could imagine. And so we move forward with hope.

I pray that as you’ve read these posts, you’ve learned something new—not just about OMS, but about compassion. If you ever see a parent struggling with a child’s behavior, please pause before judging. You never know the battles being fought behind tired eyes and brave smiles. Offer grace. Show kindness. Pray for them.

I also pray you’ve seen my heart through this journey. God’s goodness broke and rebuilt my heart. A heart that never stopped hoping—even when the world said there was none.

“Let us hold unswervingly to the hope we profess, for He who promised is faithful.”
—Hebrews 10:23

My son is more than a diagnosis. He is a living, breathing miracle. A warrior. And one day, I believe his test will become a powerful TESTimony—pointing others straight to Jesus.

This is not the end. It’s just the beginning of something new. A new chapter filled with purpose, promise, and hope.

To God be the glory. Always.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

With Every Joy, In Every Hope

With Every Joy, In Every Hope

This journey with OMS has brought me to my knees more times than I can count. It has stretched me, refined me, broken me open—and built something stronger in its place. However, With Every Joy, In Every Hope there is Jesus.

There have been days filled with fear. With doubt. With exhaustion that sank into my bones.
But there have also been days of joy.
Joy that surprised me. Joy that snuck in quietly and wrapped itself around the hardest moments.

And that’s what I’ve learned: joy and hope can live alongside pain.
They’re not emotions reserved for the easy days.
They are gifts from God, woven right into the messy middle of the story.

With every joy—in every smile, every step forward, every laugh that returned after weeks of silence—I saw God’s fingerprints.
With every hope—in every prayer whispered through tears, in every night I chose to believe again—I saw God’s faithfulness.

This journey hasn’t been linear. Healing rarely is.
There were setbacks, victories, and there were days I felt like giving up.
And then there were days when I couldn’t help but praise—because of the progress, because of the peace, because God had carried us one more step forward.

With every joy, in every hope, God was there.
Not one moment missed, not one tear wasted, and Not one prayer unheard.

And maybe you’re in a hard season of your own—maybe your story doesn’t look like mine, but your heart still needs to know:
Joy is still possible. Hope is still alive.
Not because of the outcome, but because of Who walks with you.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Did You Even Know You Were Looking at a Miracle?

Did You Even Know You Were Looking at a Miracle?

“Did you even know that you were looking at a miracle?”

That question caught me completely off guard. It came from a gentleman sitting nearby in the waiting room of our chiropractor’s office, and it landed in my ears like a divine interruption. Amid my self-imposed chaos, his words cut straight to my heart.

I sat there stunned, mouth slightly open, tears streaming down my cheeks.

Not exactly how I had planned my Tuesday morning chiropractic visit.

But God.

Earlier that morning, I was knee-deep in what I call C.H.A.O.S.—Can’t Have Anyone Over Syndrome. I couldn’t even remember who was supposed to go to the chiropractor, so I just loaded up the whole crew. Some days are just like that. And Tuesday was definitely one of those days.

As we filtered into the office, we were immediately recognized. No introductions needed. H knows the ropes and has all the staff wrapped around his little finger. He did his usual “hello? excuse me? lady?” routine, and Whitney—who adores him—popped around the corner and scooped him up with a big smile.

Before taking him back for his “office work,” she asked if she could introduce him to the woman behind me—her mom. As always, H was syrupy sweet, charming her with his innocence and bright spirit.

Then came the man.

The office is small and shared with another doctor. Since my kids had already claimed one corner, I sat on the opposite side, next to an older couple—probably in their late 60s or early 70s. The man leaned around his wife, looked directly at me, and smiled. His eyes were kind, deep, and piercing.

He said, “Did you know that boy of yours is a walking miracle?”

I choked back tears and managed to whisper, “As a matter of fact, I do.”

He asked H’s name, and when I told him, he promised to begin praying for him right then and there.

What stunned me most was that he didn’t know a single thing about us—not H’s health, not our family story, nothing. He hadn’t even seen H walk. Whitney had carried him back before the man saw him do anything. I briefly shared a 30-second summary of H’s medical journey, and tears welled in the man’s eyes.

He looked at me and said, “Well, I thought he was a miracle before… now I know he is. God spoke to me about him. Did you know that God is still a miracle maker? He’s alive and well and surrounding us every day.”

“Yes,” I said, voice shaking, “I know that.”

And just like that, peace settled into the chaos. For a few minutes, we chatted. His words calmed the storm in my spirit. My soul exhaled.

As I stepped up to the front desk, H had spotted some food he couldn’t eat because of his gluten allergy. While I gently comforted him, I overheard the man talking to D. Without hesitation, he was sharing the Gospel. He asked D direct, honest questions about his faith, his walk with Jesus, and his relationship with God.

I didn’t interrupt. Honestly, I stood there, witnessing the Holy Spirit move through this complete stranger with power and gentleness.

I don’t know his name. I don’t know which doctor he came to see or where he’s from. But I know he was sent—for me, for us.

God knew I needed that moment to hush the noise of my worry. He knew my tired heart needed the reminder that H is a miracle. And He knew that someone would come to speak truth, light, and hope when I least expected it.

God is good. All the time. And all the time, God is good.

💛 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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Beads of Courage – A Story of Strength and Recognition

Beads of Courage – A Story of Strength and Recognition

Beads of Courage – A Story of Strength and Recognition. For two years, we’ve tried to access the Beads of Courage program—a powerful way to honor children facing life-altering health conditions. I first discovered this initiative through a fellow blogger whose child received these meaningful beads. The concept stayed with me.

At one point during a hospital stay at Norton Children’s, we inquired about participating. A Child Life worker explained the eligibility requirements, which include:

  • Cancer and blood disorders

  • Cardiac conditions

  • Burn injuries

  • Neonatal ICU families

  • Chronic illnesses

Believing we qualified under chronic illness, we completed a detailed form documenting medical procedures, treatments, and milestones. It was a humbling and emotional process to recall every difficult step. Despite submitting the paperwork, we never heard back. The reason? Our child didn’t have cancer, and thus wasn’t eligible at that facility.

We didn’t inquire again at other hospitals, assuming the answer would be the same.

Until recently.

During a visit to Vanderbilt Children’s Hospital, we saw a boy proudly walking with his Beads of Courage necklace, and that spark reignited. When we mentioned it to our Child Life specialist, Katie, she lit up. “He qualifies,” she said without hesitation.

The program had expanded over time, and our child was now eligible. Katie walked us through the process and gave us a form to fill out—documenting brave moments, medical milestones, and the number of days he’d been ill. Each bead represents a piece of his story, and he got to handpick every one.

Hospitals may be unpredictable. Nurses, routines, and outcomes change. But the Beads of Courage offer something constant and bright in a child’s journey. Each bead is a tangible reminder of strength, bravery, and resilience.

You can help make this joy possible for other kids by supporting the Beads of Courage program. Donations—whether beads or financial—can be made through their official website. Organizations like the Nashville Predators also help fund the program at Vanderbilt, spreading hope one bead at a time.

Reach Out

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Day He Ran –Our Beach Miracle

The Day He Ran – Our Beach Miracle

I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle.

The sun was setting, the breeze was just right, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals.

H sat on a blanket, watching the waves, surrounded by siblings and snacks.

He hadn’t walked unassisted in almost a year.

We brought his wagon to the beach to help transport him around. We expected him to stay seated.

But then…

He Stood

After much sitting and playtime in the sand and the water. I quickly carried him up the beach, at dusk, and sat him on a beach towel. He was all snuggled up as the sun was setting and I was getting a few quick videos and pictures.

Then.

He stood.

And not just stood.

He ran.

Across the sand, toward the ocean. His body moving like it remembered how, even though it shouldn’t have. I stood in holy awe as my child, who had to relearn everything, ran straight into the water like he’d never been sick.

It wasn’t just steps. It was a miracle.

“Against all hope, Abraham in hope believed…”
— Romans 4:18

No One Can Tell Me Otherwise

Doctors can say what they want.
Science can shrug.
But I know what I saw.

I saw God.

That day, I saw healing in motion.

I saw the fire in his eyes, the joy in his shout, the water splash around his feet.

In that moment, I saw the moment heaven touched earth for my son.

Heartbeat Moment

We still face hard days. Flare-ups. Setbacks. Fears.

But that moment reminds me what’s possible.
God doesn’t always heal the way we ask but sometimes?
Sometimes He does.

And I’ll never stop praising Him for the day my boy ran into the ocean.

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Speaking the Language of Rare – Part 2

Speaking the Language of Rare – Part 2

Speaking the Language of Rare – Part 2

In Part 1, I walked through some of the most common medical terms we’ve come to know and use daily. In Part 2, I want to continue unpacking those big words—especially the ones that pop up often in rare disease circles and our story.


🧠 Acute Cerebellitis Ataxia

A sudden inflammation of the cerebellum, the part of the brain responsible for coordination and balance.
In H’s case: This was one of the early misdiagnoses. The symptoms were similar, but the root cause was different.


🧬 Friedreich’s Ataxia

A rare, inherited disease that causes progressive damage to the nervous system, leading to movement problems and other complications.
This was one of the scariest possibilities, but was ruled out with genetic testing.


👀 Esotropia

A condition in which one or both eyes turn inward.
In OMS: Eye movement disorders are common. H’s eyes often moved erratically—called “ocular flutter”—which was a key symptom.


🚶‍♂️ Gait Walker

A medical device used to help with walking and balance.
H used one during his recovery when he was relearning how to walk.


🪑 Telathog

Supportive seating equipment used for kids with mobility challenges. Often used during therapy.
We were introduced to a variety of tools like these to help H remain safe and supported.


💉 Dexamethasone

A powerful steroid used to reduce inflammation.
We tried many forms of steroids during H’s treatment. Some helped, some made things worse (see: ‘roid rage).


💉 LP (Lumbar Puncture)

Also known as a spinal tap, this test involves inserting a needle into the lower back to collect cerebrospinal fluid for testing.
It’s uncomfortable and scary—and something no child should have to endure repeatedly. Yet here we are.


🔄 Chemo (Yes, again)

Because yes—it’s not just for cancer.
Chemo is often used in autoimmune disorders to suppress the immune system.
In OMS treatment protocols, this is often part of the plan.


“I will give you hidden treasures, riches stored in secret places…”
— Isaiah 45:3


💛 Heartbeat Moment

Learning this language has been part of our survival. But more than that—it’s been part of our strength. These aren’t just medical terms; they represent real battles fought by tiny warriors and the families who carry them.

If you’re new to this world, don’t be afraid of the big words.
Ask the questions.
Write things down.
Take it one day—and one definition—at a time.

You’re not alone.

💛 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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Speaking the Language of Rare – Part 1

Speaking the Language of Rare – Part 1

In Speaking the Language of Rare – Part 1, when you live with a rare diagnosis, medical terms start to feel like household words. In our world, terms like IVIG, ACTH, and Plasmapheresis are as common as “shower” or “cheese” or “cat.” Even the littlest kids around here know what they mean.

But I still remember when I first heard these words.
I felt like I’d landed in a foreign country with no idea how to speak the language.

So today, I’m slowing down and translating some of the words you’ve seen throughout our story—for the mamas who are just now hearing them for the first time, and for the friends and family who want to understand.


🩸 IVIG (Intravenous Immunoglobulin)

A blood product made from donated plasma. It’s infused into the body to boost the immune system or help calm an overactive one.
In our case: Monthly IVIG is to regulate H’s immune system and try to decrease the inflammation in his brain.


💉 ACTH (Adrenocorticotropic Hormone)

This is a hormone that helps your body respond to stress and inflammation. When given as a shot, it acts like a powerful steroid.
For us: ACTH came in the form of daily injections and brought some of the hardest side effects—rage, insomnia, and OCD symptoms.


🩺 Plasmapheresis (PLEX)

This is like a “blood wash.” The blood is removed, the plasma is separated out, and then new plasma or a substitute is put back in. It’s used to remove harmful antibodies.
Why it mattered: It was one of the most intense parts of H’s treatment and helped remove autoimmune activity from his system.


💊 Chemotherapy

Often associated with cancer, but also used to suppress the immune system in autoimmune disorders.
In our case: H received a chemo drug (Rituximab) to help stop the immune system from attacking his brain.


🧲 MRI (Magnetic Resonance Imaging)

A non-invasive imaging tool that uses magnets to take detailed pictures of the inside of the body, especially the brain and spine.
We’ve had: More MRIs than I can count. It’s one of the first tools used when trying to figure out what’s going on neurologically.


🔬 MiBG Scan (Metaiodobenzylguanidine Scan)

A special type of scan used to look for neuroblastoma, a cancer often associated with OMS. It involves a radioactive dye and a scanner to detect tumors.
For H: Every time they mentioned this scan, my heart would sink. Thankfully, it was always clear.


🧠 Neuroblastoma

A rare cancer that often begins in the adrenal glands but can spread anywhere in the body. It is commonly linked to OMS.
H does not have this, but it was a huge fear in the beginning.


❓ Idiopathic

This simply means “we don’t know why it happened.”
For us: H’s OMS is idiopathic—no known trigger, no cancer, no infection. Just… one day, it showed up.


⚖️ Ataxia

A neurological sign consisting of lack of muscle control or coordination of voluntary movements, such as walking.
H’s walking was one of the first signs that something was wrong.


🧬 Ataxia Telangiectasia Like Disorder 1 (ATLD1)

A rare genetic condition involving movement issues, immune deficiency, and sometimes increased cancer risk.
At one point, this was suggested as a possible diagnosis for H. It was later ruled out.


“Therefore, encourage one another and build each other up…”
— 1 Thessalonians 5:11


💛 Heartbeat Moment

These words may sound big and scary. They once felt that way to me, too. But now, they’re part of the rhythm of our lives. My hope in sharing them is simple: to bring understanding, compassion, and a little bit of light to others walking this same unfamiliar road.

Part 2 coming soon, where we’ll break down more terms we’ve faced along the way.

💛 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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A Father’s Faith

A Father’s Faith

A Father’s Faith: Holding the Fort While My Son Fought to Walk Again

In A Father’s Faith, this is something my husband has written documenting those early days of H’s illness.

We struggled for many weeks after H got sick. Between hospital stays, doctor visits, and treatments, we didn’t know if we were coming or going. At home, we had six other kids, so my wife bore the brunt of the medical responsibilities. She was virtually alone with Hunter in the hospital for many weeks. I had to stay home with the other six and hold down the fort.

It was a heavy burden for my wife, but we did what we had to do to provide the best care for H.

When he was home, he couldn’t dress himself, feed himself, and eventually, he couldn’t walk at all. He was in a wheelchair for several months. H had to endure all kinds of medications, hospital stays, and treatments. Our family struggled for a very long time after he got sick.

Eventually, we took him to a place in St. Augustine, FL—and a miracle happened. Doctors administered an intensive three-day therapy, and shortly afterward, he walked for the first time in several months. We rejoiced at the miracle God performed!

He gradually began walking again and regained his speech. However, he still had tremors in his arms and hands, but he was 1000% better than before. He still experiences those tremors and struggles with fine motor skills, but he has learned to adapt.

Today, H lives a fairly normal life. That doesn’t mean he has fully healed or stopped struggling. But all in all, I don’t think we would change a thing. Sure, our family dynamic changed dramatically when he got sick.

But the way I see it, if H hadn’t come to live with us, I’m not sure where he’d be today. So I believe everything happened exactly as it was supposed to. We thank God that He has healed H to the state of health he’s in now. H is truly a walking miracle of God.

Even though things have turned out mostly positive, the journey has been rough.

In the beginning, I felt helpless. Helpless that I couldn’t fix what was wrong. When H was in the hospital and my wife was alone with him, I knew I should have been there too—but I couldn’t be, because we had six other children to take care of. I felt like I had abandoned them, even though I didn’t really have a choice. Realistically, it was what had to happen—but that didn’t change the feelings or the emotions.

I felt like I wasn’t holding up my end of the parenting and decision-making with H, because I couldn’t be there. And then I started to question my faith.

Why was this happening and why us?
Honestly, why were we being separated like this?
And why was this happening to an innocent little boy?

I had to dig deep and remind myself that all things work together for good and for the glory of God. But the feelings of inadequacy were still there.

So I went to the hospital when I could. I took H to some of his treatments after he was released from the hospital. I went to as many doctor appointments as I could.

Today, his condition has stabilized, and we spend far less time in hospitals or with doctors. But we always remember when we were separated—and how it made us feel.

God saw us through the bad so we could come out on the other side and see His glory.

💛 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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What You Don’t See – Life Today with OMS

What You Don’t See – Life Today with OMS

These days, life looks different than it did during the thick of H’s treatments. We’re no longer spending weeks on end in the hospital, juggling chemo, IVIG, ACTH, and emergency room visits. But just because we’re out of that season doesn’t mean the journey is over.

Life today is still challenging.
It’s just a different kind of hard.


👀 What You Don’t See

From the outside looking in, especially when he’s asleep, H looks like a typical 11-year-old boy.
He’s tall for his age. Handsome. Bright-eyed. A full head of hair. If you didn’t know him, you might never guess what he’s been through. He loves to ride his bike, play legos, listen to music, and look through books.

But then you see him around his peers—and it becomes clear that things are different.


🧠 Behind and Brilliant

H is significantly behind both academically and behaviorally. He struggles to connect with kids his age because… well, he’s never really had the chance to be “just a kid.” If you think about it, he spent a good chunk of his early life in hospitals and in isolation due to COVID-19.

He relates beautifully with younger children and older adults. It makes sense—he was raised around adults. His closest sibling in age is 8 years older and his oldest sibling is 18 years older. His world has always been full of people far ahead of him in life.

It’s no wonder he doesn’t fit into the traditional mold.


🍽️ What You Might Notice

Watch him try to eat a meal and you’ll see:

  • He might hold his fork differently.

  • Sometimes, he switches to a spoon when his tremors are worse.

  • He brings his mouth closer to his plate to avoid spills.

These aren’t bad habits. These are adaptations—skills he’s taught himself to compensate for what his body can’t always do.

He has had to relearn everything:
Sitting. Standing. Walking. Running. Jumping. Talking. Feeding himself.
Even sleeping.

That kind of restart at three years old?
That’s massive.


💪 He’s Worked So Hard

He’s had years of physical therapy, occupational therapy, and speech therapy.
And every ounce of progress has been fought for.

But even now, tremors in his hands affect his fine motor skills. Writing, buttoning, tying shoes—these are not simple tasks for him.


🏊‍♂️ And Then There’s Vitiligo

When you see H swimming, you might notice patches of skin that look lighter than others. That’s called vitiligo—a condition where the body stops producing pigment in certain areas of the skin. It’s harmless, but it makes him look a little different.

And for a kid who already feels different, every stare can feel loud.


🧨 Big Emotions, Big Triggers

H also lives with behavioral challenges linked to medical trauma, neurological inflammation, and life experiences no child should have to endure.

  • His coping skills are still developing.

  • His emotions sometimes erupt unexpectedly.

  • And between OMS moments, puberty, and trauma, things can get spicy around here.

We’re working on it. Therapy. Daily conversations. Emotional tools. So much prayer.


🤧 When Sick Isn’t Just Sick

One of the hardest ongoing realities of OMS is that when H gets sick—it’s not just a cold.

A mild virus can send him backward.
He might lose his speech for a time.
Or he loses his ability to walk.
And often, he’ll need steroids to get back to his baseline.

Once, he had the flu and couldn’t walk. Another time, a cold took his speech away.
These are not exaggerations—they are real, terrifying parts of our life.

This is why we are so careful. So protective. So hypervigilant.

We avoid crowded places during flu season.
>We sanitize. We plan.
>We protect him—not out of fear, but out of wisdom born from experience.


🙌 A Hidden Mercy

Oddly enough, H doesn’t get sick very often.

Is it the protocol we followed?
Is it because we’ve been so cautious all these years?

I don’t know.
But I do know this: I’m thankful.
Every healthy day is a mercy I don’t take for granted.


“The Lord is my strength and my shield; my heart trusts in Him, and He helps me.”
— Psalm 28:7


💛 Heartbeat Moment

He’s made it through things most adults will never face.
He’s braver than he knows, and stronger than most people realize.

So the next time you see a kid struggling to eat, or a boy who’s acting “young for his age,” or a mama who looks tired and guarded—pause.

What you’re seeing is just a glimpse.

The full story is deeper. Sacred. Hard. Holy.

H’s life may look different—but it is beautiful.
And he is doing amazing.

💛 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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Trudging Through the Muck of Life

Trudging Through the Muck of Life

Let’s be real…parenting is hard. Here I am, Trudging Through the Muck of Life.

Parenting a child with a rare disorder like Opsoclonus Myoclonus Syndrome (OMS)? That’s a whole different level of hard. Some cases of OMS are tied to a type of childhood cancer called neuroblastoma. Others, like ours, are idiopathic—which is a fancy way of saying, “We don’t know why this happened.”

One day, our son was a typically developing, healthy child.
The next day, it was as if someone hit the reset button on his entire body.

He could no longer walk, sit, speak clearly, or feed himself. His hands and legs shook uncontrollably, much like the tremors seen in Parkinson’s disease. It was like having a newborn in a toddler’s body—except with rage, fear, and confusion layered on top.


Support, and Still Alone

We are incredibly grateful to have a loving support system. Family, friends, our church, and his team of therapists and doctors have come alongside us. There have been meals, prayers, encouragement, and plenty of tissues passed our way.

But only those of us who live in the trenches with him—every single day—really see it. The raw. The relentless. The moments we never expected to still be living.

What people don’t realize is that medical trauma leaves a mark.
Even as we’ve moved past the life-or-death stage and into what some might call “maintenance,” the emotional and behavioral toll lingers.

And that’s what we’re trudging through now.


When the Outside Doesn’t Match the Inside

Our son looks like a typical 11-year-old. But developmentally? He’s closer to 6. And when a child “looks” typical, people expect them to act typical.

They don’t see the hard wiring that’s been altered by trauma, medications, and daily battles just to stay regulated. They don’t understand that what seems like defiance or stubbornness may actually be overstimulation or fear. That his arguing isn’t about winning—it’s his way of grasping for control in a world that feels chaotic inside.

He can be fiery, impulsive, and loud.
Also, he struggles with sitting still, following instructions, managing big feelings.
He also has a heart the size of Texas, a smile that lights up rooms, and a brain that’s constantly working harder than most people will ever know.


Mourning and Readjusting

There are moments when I forget.
When I think, “We’re caught up. We’re good.”
Until he’s with peers… and the difference is painfully obvious.

And I mourn.
I mourn the “normal” I once knew and have to readjust to the beautiful, challenging, very real version of normal that we live now.

We keep trying new things. Gluten-free diets. Weekly therapy. Natural calming supplements. Educational supports. Consistency. Grace. Repetition. So much repetition.

And still—some weeks are just plain exhausting.


Naming Emotions, Naming Grace

One of the ways we’re helping him process the trauma and learn emotional regulation is through emotion cards. We’ve taped them to the fridge, his bedroom wall, and even put them in his backpack. We role-play, talk through scenarios, and practice statements like:

“I feel sad because kids at school won’t play with me.”
“I feel angry because I don’t like to be told no.”

Sometimes, we sit on the floor for nearly an hour, just naming what hurts.
Sometimes, when he’s done, he simply says, “Let’s move on.”
And we do.


What I Need You to Know

I’m tired. I’m honest enough to say that.
But I’m not giving up. Not even close.

I would choose this child—this life—a million times over, even on the hardest days.
He is mine. He is meant for me. And I will keep fighting for understanding, connection, and healing every day we’re given.

But I also need you to know this:

If you see a mama struggling with a child who “looks fine” but is melting down,
please don’t judge. Don’t offer unsolicited advice. Don’t scowl or whisper.

Offer a smile. A silent prayer. A moment of grace.

Because what you see is a fraction of what life looks like for families like ours.
Most diseases are invisible. Most battles are internal. And most of us are doing the best we can with what we have.


“The Lord gives strength to His people; the Lord blesses His people with peace.”
— Psalm 29:11


💛 Heartbeat Moment

Grace doesn’t cost you anything to give—but for someone else, it may be the only thing keeping them going.

Love more. Judge less.

And if all else fails… just be kind.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Scrolling Through the Storm

Scrolling Through the Storm

Scrolling Through the Storm – Facebook Memories from the Fight

Every now and then, I open up my Facebook memories and come face-to-face with the version of me who was holding it together with prayers, sarcasm, and sheer willpower.

These aren’t polished updates or carefully worded reflections. These were typed in hospital rooms, from car seats, late at night, or early in the morning—usually with swollen eyes and a half-drunk Coke beside me.

These are the words I posted when my baby couldn’t walk, when I was being told the worst, when the answers kept changing, and when God kept showing up anyway.

I’m sharing just a few of those moments here.

Because sometimes, when you look back at where you’ve been, you remember just how far you’ve come.


📆 June 7, 2017

“Guys…needing prayers. Yesterday afternoon, H (3) began shaking and was unable to walk. We went to our local and they gave him antibiotics for zero reasons and sent us home. Luckily, I have friends that are very wise. We were told to take him to the ER in another state. We finally got here around 1:30 and at about 5:30 we got a room. Please pray that we can find the reason he cannot walk and why he shakes uncontrollably…”

I can still feel how torn I was. My baby was sick, my Lady was having a procedure, and I felt pulled in a thousand directions. I didn’t know how much more I could stretch. But we kept going.


📆 June 14–17, 2017

“We are home BUT leaving again in the morning. One of his tests came back with inflammation in his brain… back to another hospital in another state for a sucky 5 days of heavy steroids. Still no dx. Sigh… holding onto the Rope.”

“Waiting on dr #572 to come in this morning. Getting ready for round 3 of heavy steroids. Good times had by all.”

“Steroids suck on a kid but good on the infection. Baby is… wowzer… emotional. No walking alone today. His speech is beginning to be impaired… so there is that.

But… my baby took 10 unassisted steps tonight.

This was the rollercoaster: one minute we were breaking, the next we were standing on holy ground watching a miracle.


📆 Fall 2017–Winter 2018

“Please pray for my baby… extremely symptomatic and throwing up after IVIG.”

“My boy is in a lot of pain… prayers for an easy night would be welcomed.”

“Heard the words ‘H is medically fragile’ today by our pediatric neuro nurse… made me vomit in my mouth a little.”

“Sometimes reality sucks… but then… there is Jesus.”

Those late-night cries, the moments I hated the words, the way OMS became this unwanted shadow in our home. But even in all of that… there was still Jesus.


📆 January–February 2018

“Tomorrow is IVIG day and Tuesday is chemo. We will also be retested to check to see if he has any cancer markers…”

“He. Has. Been. Up. Since. 4 am. God gives us both strength.”

“Guess who was granted a wish from Make a Wish??????? So excited. Something fun for a change. Thank you Jesus :)”

“Friends, Neighbors, Countrymen… lend me your eyes. I’m here to announce H DOES NOT have Friedrich’s Ataxia… and as of now, he DOES NOT have Neuroblastoma. Thank you, Jesus!”

The fear we lived with daily was so heavy. But God gave us little glimmers of joy—even a wish, even a diagnosis ruled out—to hold onto.


📆 Random Snapshots from the Storm

“Swaddled H to pull out his stitches. He was so brave.”

“’Roid rage… alive and well today. Does anyone want an almost 4 yr old for a while? He’ll be sitting by the mailbox waiting for pickup.”

“Brother called to talk about bathroom tile. I sobbed so hard he couldn’t understand me. He led me back to Jesus instead of letting me wallow.”

“Well… that was like jumping naked into a nest of iridescent baby ticks.”

Y’all, I survived this season with Jesus and jokes. Some of these posts still make me laugh-snort through the tears. Because even when I was breaking, I didn’t break all the way.

“Though I walk in the midst of trouble, You preserve my life…”
— Psalm 138:7a


💛 Heartbeat Moment

Reading these again… it still hurts. But it also humbles me. Because I remember the depth of the valley—and the One who walked with us through it.

I remember how the prayers poured in. I remember the kids who made dinner. The texts. The hugs. The late-night worship songs. The Coke bottles passed around like communion.

Most of all, I remember the unwavering truth that carried me through every hospital, diagnosis, needle, and dark night:

God. Is. Bigger.

He was then. He is now.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Long Road to a Name

The Long Road to a Name

There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers—and more misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name.

But even more than the name…

This is about what we know for sure.


June 6, 2017 — Life Changed While He Slept

Hospital 1

  • Bloodwork and urine tests

  • Diagnosis 1: Strep

  • Sent home with antibiotics and the promise he’d be better in 10 days


June 7, 2017

Hospital 2

  • MRI, bloodwork, urine

  • Diagnosis 2: Acute Cerebellitis Ataxia

  • Viral, temporary, “he’ll be fine in two weeks”


June 8, 2017

Hospital 3

  • MRI, X-rays, ultrasounds, lumbar puncture, EEG, more labs

  • No diagnosis

  • Vague mention of a degenerative neurological disorder

  • No plan. No idea what to do next


June 14, 2017

Diagnosis 3: Opsoclonus Myoclonus Syndrome (OMS)

  • Began high-dose steroids and first dose of IVIG

  • One week later: chemo

  • Two weeks after that: more chemo

  • Monthly IVIG through April 2018

  • ACTH injections (Dec 28, 2017–Feb 27, 2018)


April 2018

Hospital 4

  • Confirming OMS diagnosis, fearful of degenerative neurological process

  • Repeated nearly all tests: MRI, X-rays, LP, ultrasound

Final Dx from Hospital 4: OMS


May 2018

Back to Hospital 3

  • New idea: Maybe not OMS, but Spinocerebellar Ataxia (SCA)

  • Degenerative. Genetic. No cure. No treatment.

  • He still wasn’t walking


June 2018 — A New Day

  • Unconventional treatment

  • Five days later:
    He. Was. Walking.
    On the beach.

“Now faith is confidence in what we hope for and assurance about what we do not see.”
— Hebrews 11:1


July 2018

Diagnosis 4:


February 2019 — Hospital 5 (UPMC Pittsburgh)

  • ATLD1 diagnosis debunked

  • Returned to third diagnosis: Opsoclonus Myoclonus Syndrome

  • Restarted treatment


And then… blah blah blah.

Because honestly? It’s been years of back and forth. Years of new guesses, new scans, new terms, new fears. So many months, so many procedures, so much medicine, and so much exhaustion—for him, for us.


What I Know for Sure

  1. He does not have Friedrich’s Ataxia.

  2. He does not have a mutation on MRE11A (ATLD1).

  3. I finally got a straight answer from Dr. Thakkar in Pittsburgh.

  4. We have good days and bad days.

  5. I am an expert on my son, and I will not waver just to satisfy a doctor’s pride.

  6. He is cute.

  7. Best. Smile. Ever.

  8. He is also a turd.

  9. I will not compromise my faith.

  10. God. Is. Bigger.

“He is before all things, and in Him all things hold together.”
— Colossians 1:17


I’m tired of man telling me what this is or isn’t when they don’t even know. These doctors—most of them—have never even seen this. They are learning on him. And we’re the ones who carry the cost of that learning.

But I am not bitter.

I am anchored.

“But the Lord stood with me and gave me strength…”
— 2 Timothy 4:17a

Because we don’t walk alone. We never have.


💛 Heartbeat Moment

This isn’t just about a diagnosis. It’s about a child whose life changed in a moment, and a family who refused to let go of faith. Standing on the truth, even when no one else sees it yet. It’s about choosing joy—again and again—and declaring that our God is still good.

H is more than a list of symptoms.

He’s more than a diagnosis.

He is living proof that God. Is. Bigger.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Calm Breaks

When the Calm Breaks

We got to the Children’s Hospital ER, and I remember it clearly: that moment when the calm I’d carried suddenly started to fray. This is When the Calm Breaks.

There’s a shift that happens when the staff’s pace picks up, and the attendings—not the interns—start circling. My mama gut was screaming. My outer shell, however, was still trying to convince my insides that maybe they were just being overly attentive. But somewhere deep inside, I knew.

Something wasn’t right.


Blink, and Everything Changes

Without much time to breathe, I suddenly found myself surrounded: the ER attending, the neuro attending, the peds attending… and another one whose name I couldn’t even hold on to. They got H in a gown. I blinked, and they were placing an IV, drawing vial after vial of blood, and running tests. Everything moved fast. Too fast.

I explained to them that we had just been to Vanderbilt and shared what we had been told. I admitted that maybe I was being overly cautious, but I also told them—I just needed confirmation. Two doctors, two different hospitals, two different states. If they said the same thing, I’d be good. The last thing I wanted was to stay.

But then I blinked again… and I saw it.

H’s eyes were moving all over the place. They were dancing in a way that no eyes should move. It reminded me of one of those reptiles with a third eyelid. My calm shattered.

I quietly stepped out and flagged the attending. I kept my face out of sight from H—I didn’t want him to see the panic blooming across my features. That was the moment things sped up even more.


The Mama Who Doesn’t Panic

I’m not the kind of mama who rushes to the doctor for every bump or cough. I don’t run to the ER for every snot rocket or stubbed toe. I’m the one who waits, watches, and gives space for calm to do its work.

I told them that.

I even apologized for possibly wasting their time—because I truly believed everyone would agree it was nothing serious.

They didn’t.

Not even close.

“You will keep in perfect peace those whose minds are steadfast, because they trust in you.”
— Isaiah 26:3


Surrounded, But Alone

My previously healthy three-year-old was suddenly being poked, prodded, sedated, and infused. I was alone—Big Daddy stayed home with our other kids. I was surrounded by doctors, residents, students, and nurses, but there wasn’t a single straight answer in the room.

Finally, I cornered one of the doctors. I told her I was kind, patient, and forthright. I didn’t need sugar-coating. What I did need was honesty.

I understood they didn’t have all the results. Honestly, I wasn’t asking for the final answer—I just needed transparency. What tests were being run? What were they ruling out? Why were we moving this quickly?

I wasn’t going to faint or fall apart. In the end, I was there to learn and there to fight for H.


The Student Who Changed Everything

One young student doctor stood out. He looked barely older than a teenager, but he saw us. In that moment, he got down on H’s level. He played with him, connected with him, and genuinely cared about him—and about me.

However, he didn’t stop there.

This sweet soul took time to make a handwritten list of every test being run, what the tests were for, which had results, and what had been ruled out. It became gold to me. Every nurse that came in checked the list. That list made me feel human again. Informed. Empowered.


The Words That Broke Me

One hospitalist—direct, but not unkind—sat with me and spoke truth I wasn’t ready to hear.

She told me H wasn’t going to get better quickly. That it was likely autoimmune. That every day, he was getting worse. That this might not go away. That our lives were changing, and we needed to make changes to match. Therapy. Equipment. Adjustments.

That conversation broke me.

For the first time, I truly came undone. Not in front of the white coats, but alone. I got H settled watching a movie, stepped into the bathroom, and called my sister.

I let it out.

From the other side of the door, I heard H’s sweet voice saying, “Mama, don’t cry. Come out of the bathroom and don’t cry.”

So I did.

I washed my face. I came out. And we watched Cars for the thousandth time.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.”
— Psalm 34:18


A Moment—and Then Joy

I decided in that moment—this diagnosis would not define us. Therapy? Fine. Adjustments? Fine. We could do hard things. We had to.

When the team came in for rounds again, there were a dozen of them. They avoided my eyes, timid in the wake of the day before. But I was no longer falling apart.

I stood in faith and told them: Even in times like this, I choose joy.

According to God, this would not defeat us. This diagnosis—whatever it ended up being—was just part of our story. Not the end of it.

I told them that one day, they would see another child like H. They would remember his face, remember the tests, remember the signs. Maybe they’d even remember the mama who didn’t break—but instead stood in faith.

I told them that God would be glorified through this.

And the room changed.

Doctors told us they were praying. Nurses shared encouragement. And yes—some even began to believe that maybe, just maybe, God still does miracles.

“You intended to harm me, but God intended it for good to accomplish what is now being done…”
— Genesis 50:20

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

“Being Brave” — H’s Story in His Own Words

before the shaking began (3)

Some stories are best told in the words of the one who lived them. Here is “Being Brave” — H’s Story in His Own Words.

It’s been almost eight years since the day H’s world changed—and ours along with it. So much of that journey has been shared through my perspective as his mom, advocate, and witness to both pain and miracles. But today, H is ready to share a little piece of his own story. In his words. As he remembers it.

He’s still just a kid. He’s still healing. But he’s brave enough to look back—and kind enough to want others to understand.

So, with his permission, here is H’s story… told from his own heart.


Q: What’s your very first memory of when your body felt different or something felt “off”?

H: I woke up from my nap and when I did, I was shaking and I couldn’t walk.


Q: Do you remember how you felt when you couldn’t walk or when your legs were shaking?

H: I don’t remember. Now, I feel sad when my legs are shaking and my hands are shaking. I am sad because everyone at school asks me why I am shaking.


Q: What do you remember about being in the hospital? Was there a moment that scared you? One that made you feel brave?

H: I remember that it was a big room and there were doctors in there and I was in a bed. The moment that scared me was when I got the tube in my neck. That scared me because, at the end, when they took it out, I puked everywhere. Then I was crying. I remember being in the air watching me and mom, I was laying in mom’s arms and she was telling me to wake up. I felt brave when I came back to my mom that day. I was also brave in all of my appointments.

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
— Joshua 1:9


Q: What was the hardest part of being sick?

H: The hardest part was when I was shaking a lot, I couldn’t even feed myself and I had to be in a wheelchair and I did not like it because I could not walk.


Q: Can you think of someone who helped you feel safe back then? What did they do or say?

H: Mom made me feel safe. She said that she would stay by my side.


Q: What was your favorite thing someone brought you or did for you when you were hurting?

H: My favorite thing that people brought me were toys and people just being nice to me.


Q: How did it feel to not be able to walk when you wanted to?

H: It felt really mad because I just wanted to walk anywhere and I didn’t have the power to do that anymore because my legs didn’t work.


Q: Were you ever mad or confused? What do you wish people had understood about how you felt?

H: Yes, because I didn’t know why I was shaking and I was mad because I couldn’t walk. I wish people understood what it was like being in the doctors all the time and the feeling of not being able to walk.


Q: What does the word “healing” mean to you?

H: It means that Jesus gave me the strength to walk again.

“He heals the brokenhearted and binds up their wounds.”
— Psalm 147:3


Q: If your body could talk back then, what would it have said?

H: It would have said, “I don’t feel good.”


Q: Do you think people understand how hard it was—or do they forget?

H: I think people have forgotten how bad I felt. When some people go through a lot of things, sometimes they don’t remember.


Q: If someone else was going through something hard like you did, what would you want to tell them?

H: I would tell them to be brave because one day, it will all be over.


Q: If your story were in a book, what would the title be?

H: “Being Brave”


Q: What’s one thing about your journey you want to never forget?

H: One thing I don’t ever want to forget is how you stuck by me the entire time.


“Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me…”
— Psalm 23:4


Q: When you think about your future, what makes you excited?

H: It makes me excited that I don’t have to go through any of this anymore. It is all over and I don’t have to do it anymore.


Q: What are some things you can do now that make you proud?

H: I can walk, talk, and feed myself.


Q: Do you think your story could help someone else someday?

H: Yes because if they were going through hard and difficult things, I can help them understand because I went through the same thing.


Q: What kind of person do you want to grow up to be?

H: I want to be a helper.


Q: How do you think God helped you through the hardest parts?

H: He helped me, just like you, He was there the whole entire time. I also learned that God always stays in the same spot, He never moves.

“Jesus Christ is the same yesterday, today, and forever.”
— Hebrews 13:8


Q: If your story were a superhero movie, what would your superpower be?

H: It would be helping.


Q: Can you describe what your legs used to feel like—and then what they feel like now?

H: They used to feel terrible and they hurt a lot. Now, they are much better but they still hurt a little when I stay on them for a long time. I have learned to not stay on them for long.


Q: What color would you give your feelings back then? What about now?

H: Back then, they would be pink (loved) because you were by my side and black (angry) because I hurt all the time and I shook. Now, they are yellow (happy) and pink (loved).


Q: What do you think helped you the most when you were hurting or scared?

H: You being by my side.


Extras from H

  • Favorite songs from that time:Sit at Your Feet” **This is what he said, the name of the song is
    The More I Seek You** and “Shackles

  • Favorite food during recovery: Caesar salad

  • What he wants people to know: “I want people to know what I’ve been through so they will understand why my hands shake and my legs hurt.”

  • Final thought: “I’m glad that He was always there for me… and so were you.”


💛 The Heartbeat Moment

This is H’s story. His truth. His hope. And his faith in a God who never moved.

He may still have shaking hands and aching legs… but he also has a voice, a testimony, and a calling to help others through their hard things, because he’s lived through his own.

“Let the redeemed of the Lord tell their story…”
— Psalm 107:2a

Thank you for listening to him. For seeing him. For remembering with us.

Because being brave doesn’t mean not being scared—it means standing tall even when your legs don’t work.
And H? He’s been brave since the beginning.

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Shaking Doesn’t Stop

The Shaking Doesn’t Stop

The Shaking Doesn’t Stop

The Second ER – Misdiagnosis #2

We made arrangements for the kids, packed bags, and headed 2.5 hours to Nashville. We arrived at Vanderbilt Children’s Hospital in the middle of the night. In the end, The Shaking Doesn’t Stop.

They admitted us briefly but said no MRI could be done until morning.

They ran bloodwork and later completed an MRI. I asked for a spinal tap or spinal MRI—they declined. “Not necessary,” they said.

While we waited, new symptoms began to show up. H stiffened his legs like a toy soldier. He shook all over. He couldn’t sit up without help.

The MRI showed nothing. We were told it was Acute Cerebellitis Ataxia, likely caused by a virus—even though he had never been sick.

“Is anyone among you sick? Let them call the elders of the church to pray over them…”
James 5:14a (NIV)

We were told we must have just not noticed when he was sick. I was stunned.

He is three.
A blind, deaf, mute would know when a three-year-old is sick.

We were told to return if he had a grand mal seizure or if we feared for his life.


Discharged – But Not Done

What I’ll never forget is how flippantly the doctors treated us—how dismissive they were. But what I will remember even more clearly is the nurse who looked me in the eyes and said:

“You don’t have to leave. I can’t believe they’re discharging you, given the state he’s in.”

We knew then—we needed to keep pushing.

“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.”
Galatians 6:9 (ESV)


The Third ER – Misdiagnosis #3

Still unsettled, I packed up again and drove 3.5 hours to Louisville. I wanted one thing: confirmation.

If two doctors gave me the same diagnosis, I’d accept it and wait.

Big Daddy stayed home with the others. I was hopeful that this time, we’d get real answers.

But even when the world throws labels and shrugs its shoulders, a mother’s gut—and the Holy Spirit—won’t be quieted.


Heartbeat Moment: When the Shaking Begins

That June evening, I had watched H giggle and shout with joy at a ball game. One day later, I watched him crumble under the weight of something we couldn’t name. But in between the popcorn and the panic, I felt something deeper growing—a fire, a knowing.

We weren’t just walking through a medical crisis.

We were walking through holy ground.

And even when we didn’t know the name of what we were fighting,
God did.

“Before they call I will answer; while they are still speaking I will hear.”
Isaiah 65:24 (NIV)

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Before the Shaking Began

before the shaking began

A Sweet Night at the Ball Field

On this day in 2017, Before the Shaking Began, I had been with my Lady, and I knew her family was coming into town. I wanted to give them time together, so I took all my kids to one of my son’s baseball games. It was a warm evening, the kind where summer storms tease the horizon but never quite make it to the field. The game was something everyone could enjoy, and I looked forward to the joy of watching my kids just be kids.

H hadn’t been to a baseball game since the previous summer. Now that he was a little older—he had turned three that February—I knew he’d enjoy it even more.

And oh, he did.

He absolutely charmed everyone around us. Then, he shamelessly ate their popcorn and nachos with zero hesitation. He cheered loudly, with unfiltered excitement. He was the comic relief for everyone near us, and he loved every single minute of it.

“A cheerful heart is good medicine…”
Proverbs 17:22a (NIV)

For that moment, everything was sweet and simple. That evening is forever etched in my memory as one of the last “normal” moments we had for a long time.


The Next Day: A Shift in the Air

The conversation from earlier that day—the kind you tuck away in the back of your mind—didn’t resurface until June 7. That was the day the world stopped turning for our family.

H was highly emotional that morning. He was doing things he shouldn’t have been doing, getting in trouble more than usual. His older brothers—sweet and patient—took him into their room to play Legos while I caught up on paperwork and phone calls.

I could hear H yelling at the boys, and I could also hear them giving in. Over and over again. I heard my oldest say, “Stop shaking. You’re not in trouble. Here, take the Lego… stop shaking.”

Stop shaking.

When H got excited or upset, he would sometimes shake his arms and legs. I assumed this was more of the same. I figured his brothers were tired of managing him and needed a break, so I called him back into the dining room.

He screamed the whole walk down the hallway. Honestly, he wanted to stay with the big boys. He cried, shook, and screamed some more. I put him in time out on the step. He continued crying—louder now—and shaking from head to toe.

I told him he needed to stop and that once he did, he could get up. Eventually, he stopped. He got up and went to play with his toys.


The Nap That Changed Everything

Lunchtime came and went. H went down for his usual nap. He had been napping since he moved in with us at 21 months old. That day was no different—he slept until about 4 p.m. My oldest son went to get him up, as he often did. He usually carried H downstairs and set him in my lap.

That moment was no different, either. H snuggled into me, and we talked about his dreams—he had dreamed about his pillow. I hugged him tight and said, “Okay, time to potty, buddy. Can you hand me your underwear?”

It was only about ten steps away.

I stood him up…

He wobbled and he stumbled.

And then… he fell.

He cried out, terrified. My heart dropped.

One of the boys quietly mentioned that the same thing had happened the day before—after a nap—but it quickly resolved, and no one thought to tell me. I brushed off the panic and told myself maybe his legs were just asleep. I snuggled him and rubbed his legs.

After a few minutes, I stood him up again.

He fell over. There was no moment where he could stand up. He couldn’t balance or walk.

“When I am afraid, I put my trust in You.”
Psalm 56:3 (ESV)


The First ER Visit – Misdiagnosis #1

I gathered our things and called Big Daddy: “You need to meet us at the ER. Something’s wrong. H can’t walk.” I also called my oldest sister—H’s grandmother—and asked her to meet us there.

On the 30-minute drive, H kept repeating: “My legs won’t stop shaking.”

It scared him.
It scared me.

At the hospital, they did a CT scan. It came back normal. They drew blood—without gloves, mind you—and began tossing around terrifying words like Muscular Dystrophy and Cerebral Palsy. Then they pivoted, decided maybe it was Strep, even though he tested negative. They gave us Amoxicillin and sent us home.

We left that hospital with a terrifying truth:
Our baby couldn’t walk.


Friends Who Move Mountains

On the drive home, I started making calls. I called a friend whose daughter had a rare illness and ended up paralyzed when she was little. She is a pit bull—and I love that about her. She pulled strings and got us in touch with a brilliant neurologist. I also called another friend who works in the neurology world. They both said the same thing:

“Get that baby to Vandy. Don’t wait. Don’t let the grass grow under your feet.”

And that’s exactly what we did.


To be continued…

“The Lord Himself goes before you and will be with you; He will never leave you nor forsake you.”
Deuteronomy 31:8 (NIV)

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When Your Child Is a Medical Zebra… or an Okapi

When Your Child Is a Medical Zebra… or an Okapi

When Your Child Is a Medical Zebra… or an Okapi

As I continue sharing our journey with Opsoclonus Myoclonus Syndrome (OMS), I wanted to highlight a valuable resource that may help bring clarity to those who have never heard of this rare condition—or can’t quite grasp how it manifests. Especially When Your Child Is a Medical Zebra… or an Okapi.

There is an excellent video from NORD (National Organization of Rare Disorders) that explains the symptoms of OMS in a simple, visual way. You can watch it here:
👉 NORD OMS Video

For those of you walking this road alongside a loved one, or just wanting to understand better, this is a great place to start. The visual presentation of opsoclonus (uncontrolled, rapid eye movements) and myoclonus (jerky muscle movements) can be difficult to explain—but this video does an incredible job.

But Here’s the Thing… My Son’s Case Wasn’t That Clear.

I wish our experience had looked as “textbook” as this video. But the truth is, my son is what the medical world affectionately calls a zebra—and, if I’m being honest, maybe even something rarer than that.

Let me explain.

In medicine, there’s a saying: “When you hear hoofbeats, think horses, not zebras.” It means doctors are taught to consider the most common explanation for symptoms before jumping to something rare or exotic. But for some patients—like my son—the common answer never fits. That’s when doctors begin to consider the “zebras”: rare diagnoses that don’t follow the usual rules.

And then, there’s my son.

He doesn’t just check the zebra box. Honestly, he confuses even the most seasoned specialists. He doesn’t follow the standard presentation or response patterns. His symptoms come and go unpredictably. His labs are often conflicting. Treatments sometimes work, sometimes don’t, and sometimes cause reactions no one can explain.

So, we’ve taken to calling him our medical okapi.

If you don’t know what an okapi is, that’s kind of the point. They’re one of the most unique, rare, and mysterious animals on the planet. Most people think they’re made up—until they see one. They look like a cross between a zebra and a giraffe, with their own unique quirks. They’re rare. They’re beautiful. And they don’t fit into any neat little category.

Just like my boy.

The Struggle With the Unknown

For families dealing with a rare condition like OMS, there’s already so much uncertainty. But when your child doesn’t even fit into the rare diagnosis they’ve been given, the confusion is multiplied.

Doctors are unsure. Therapies are trial and error. Even the support groups—so full of comfort and community—sometimes can’t offer guidance because your child’s experience is just so different.

And let me tell you… that’s isolating.

But it’s also where I’ve seen God show up the most.

In the absence of clarity, He gave peace.
>In the absence of answers, He gave direction.
>In the absence of a roadmap, He gave presence.

I’ve learned that not everything needs to be understood to be held by the Lord. We don’t need certainty to be carried.

A Visual That Helps Others Understand

That’s why resources like the NORD video matter. They open a door to understanding. They help make the invisible more visible—for family, friends, teachers, and even medical professionals. Even if our story doesn’t align exactly with what’s shown, it’s still a helpful tool to begin conversations.

Because awareness leads to empathy.
Empathy leads to support.
And support makes all the difference when you’re navigating the impossible.

So What Now?

As we continue sharing more about our journey this month, I’ll be diving deeper into how OMS reshaped not just our son’s life, but our whole family’s. I’m hoping to share from his perspective as well—what he remembers, what he felt, and how he sees things now. There are hard questions we’re starting to ask—and bravely beginning to answer.

This series is for awareness, yes—but it’s also for the ones who feel alone in this. The ones parenting their own little zebra… or okapi. The ones trusting God for each next breath, even when the path ahead feels dark and unfamiliar.

Thank you for being here. Thank you for caring.

Let’s keep learning together.

Reach Out

💛 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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Understanding Opsoclonus Myoclonus Syndrome (OMS)

Understanding Opsoclonus Myoclonus Syndrome (OMS)

Understanding Opsoclonus Myoclonus Syndrome (OMS):

What It Is and Why It Matters

As part of this series on navigating life after a rare diagnosis, I wanted to take time to share more about what Opsoclonus Myoclonus Syndrome (OMS) actually is. It’s a disorder many have never heard of, yet for the families affected by it, it becomes the center of their world overnight.

Whether you’re here because you’re walking through this with your own child, supporting someone who is, or simply trying to understand more—thank you for leaning in.

What Is OMS?

Opsoclonus Myoclonus Syndrome (OMS) is a rare neurological disorder that most often affects young children, typically between 6 months and 3 years old. It is believed to be an autoimmune condition, where the immune system mistakenly attacks healthy cells in the nervous system, particularly in the brain.

OMS is often associated with either a recent viral illness or a neuroblastoma (a type of cancer found in the nerve tissue), although in rare cases, no clear cause is ever found.

Key Symptoms of OMS:

  • Opsoclonus: Rapid, uncontrolled eye movements in all directions (sometimes described as “dancing eyes”)

  • Myoclonus: Sudden, jerky muscle movements or spasms (also referred to as “dancing feet”)

  • Ataxia: Loss of balance and coordination, which can make walking or even sitting upright difficult

  • Irritability or behavioral changes: Mood swings, aggression, and sleep disturbances

  • Speech regression or delays: Children may lose words they previously had or stop speaking altogether

Symptoms often appear very suddenly and worsen quickly, leading to a medical emergency that requires urgent attention.

Diagnosis of OMS

Because OMS is so rare—affecting roughly 1 in 5 to 10 million children—it’s often misdiagnosed or misunderstood. There’s no single test to confirm OMS. Diagnosis is typically based on a combination of:

  • Clinical presentation of symptoms

  • MRI scans to rule out other neurological conditions

  • Urine and blood tests for tumor markers (especially if a neuroblastoma is suspected)

  • Sometimes, spinal taps or EEGs

Treatment Options

There is no cure for OMS, but early and aggressive treatment can dramatically improve outcomes. Common treatments include:

  • High-dose steroids (IV or oral)

  • IVIG (Intravenous Immunoglobulin)

  • Chemotherapy agents like Rituximab or Cyclophosphamide

  • Plasmapheresis (plasma exchange)

  • Physical, occupational, and speech therapy

Treatment typically requires a team of specialists, and relapses can happen—often triggered by illness, stress, or tapering medication. Long-term care is often needed.

What OMS Is Not

OMS is not:

  • A result of poor parenting

  • A behavioral disorder

  • A temporary condition that children just “grow out of”

  • Well understood by most general practitioners

Raising awareness is key because early diagnosis and treatment can prevent long-term neurological damage.

Faith in the Unseen

For families walking this road, the diagnosis of OMS can feel like being dropped into the middle of a storm with no map. The fear, the unknown, the way life changes in a single day—it’s all overwhelming.

But even here, in this space of confusion and questions, God is not absent. He is present in the waiting rooms, in the hospital corridors, in the shaky prayers whispered late at night. He is faithful through every test result, every unanswered question, every slow and painful recovery.

OMS may have changed the story—but it doesn’t get to define the ending.

Why This Matters

There is power in sharing knowledge. There is purpose in raising awareness. And there is hope in knowing that even in the most complex, heart-wrenching diagnoses—God still writes beautiful, redemptive stories.

This post is here so others don’t feel as alone as we once did. It’s for the parent Googling symptoms at 3 a.m., the friend wanting to, the family member unsure how to help. It’s for the ones standing in the gap and believing for healing.

Thank you for being here. Thank you for caring.

Coming Up in This Series:

  • Personal reflections on how the diagnosis reshaped our daily life

  • A post (hopefully!) in my son’s own words, sharing what he remembers

  • How faith carried us—and continues to carry us—through the unknown


Have questions about OMS or want to share your own story? Feel free to reach out or comment. This is a space of grace, education, and encouragement. You are not alone.

💛 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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FDA Warning for Ethiopians

FDA Warning for Ethiopians

FDA Warning for Ethiopians
Photo by Kelly on Pexels.com

This is an updated post on the FDA Warning for Ethiopians. Understand, I am not a doctor and I am not advising you to do anything medically related. Please consult with your physician regarding this information. Also, please have them do their research before blindly administering these medications to your loved one.

The reason I say that is because when we were faced with a surgery, for our child, we would have never known this information. The reason we knew it is because my sister had also adopted from Ethiopia and she was made aware. I believe she was made aware through her adoption agency and support group.

A Little Bit About Our Story

There is not much I will share regarding the surgery that we needed for our child. However, I will share that when we went in, we informed the doctors and the anesthesiologist, they told us they had never heard of that before. We stood our ground and the surgery did not proceed until they thoroughly researched this topic.

Upon review (after quite a bit of time), they did come back and apologize to us. It is now flagged at this hospital (and other hospitals that we have attended). It isn’t just flagged for our child, it is flagged for people that are from Ethiopia. Granted, nothing may have happened but I wasn’t going to let my child be the guinea pig.

Warning

Here is the brief snippet from the article that is listed below:

“Some individuals may be ultra-rapid metabolizers because of a specific CYP2D6 genotype (gene duplications denoted as
1/1xN or 1/2xN). The prevalence of this CYP2D6 phenotype varies widely and has been estimated at 0.5 to 1% in
Chinese and Japanese, 0.5 to 1% in Hispanics, 1 to 10% in Caucasians, 3% in African Americans, and 16 to 28% in North
Africans, Ethiopians, and Arabs. Data are not available for other ethnic groups. These individuals convert codeine into its
active metabolite, morphine, more rapidly and completely than other people. This rapid conversion results in higher than
expected serum morphine levels. Even at labeled dosage regimens, individuals who are ultra-rapid metabolizers may have
life-threatening or fatal respiratory depression or experience signs of overdose (such as extreme sleepiness, confusion, or
shallow breathing).”

The website through the FDA can also be reviewed with your health care professionals. You can always go to All Africa to read more.

Related Topics:

Resources for Special Needs Kids

 

Circle of Hope Counseling Services, Faith Journey

Making Your Marriage a Priority

 Making Your Marriage a Priority

Making Your Marriage a Priority

Making Your Marriage a Priority

Marriage isn’t always a fairy tale. In fact, I remember in our early years, a friend told me that one day, I would write a book. When I asked what I’d write about, she said: “How to hate your husband but stay married.” Ouch. That hit me square between the eyes.

Apparently, we weren’t fooling anyone. My dad once told me I was “too aggressive” and that our marriage wouldn’t last because my husband didn’t fight back—he was “too passive,” a “doormat,” even. Hurtful words, but somehow, they stuck with me. Even my father-in-law used to joke, year after year, “Well, I’ll be damned, you’re still married!” Clearly, belief in our lasting love was not exactly widespread.

And yet… here we are. Together. Stronger. Wiser. Happier. These years have taught me so much, and I want to share some of those lessons with you.


Lesson #1: Don’t Vent to Others

When you’re mad at your spouse, don’t pick up the phone and call someone to rant. The moment of frustration will likely pass, but what you say about your spouse in the heat of the moment can leave a lasting impression on someone else. That bitterness lingers, and it plants seeds of division. Protect your marriage, even when you’re mad.


Lesson #2: Keep Your Parents Out of It

Your parents are your parents—not your best friends or marriage counselors. Sharing marital frustrations with them can complicate your relationship with both your spouse and your family. If you need to talk, consider Jesus, a trusted pastor, or a marriage counselor.


Lesson #3: Don’t Involve Your Kids

Your kids are not your sounding board or your support system. They’re kids. Let them see that marriage isn’t always perfect, but protect them from the weight of grown-up conflict. Teach them to pray for their parents, and model grace, forgiveness, and love—even on the hard days.


Lesson #4: Date Your Spouse

Dating doesn’t require money or babysitters. In our early years, we had neither! So we improvised. The kids got simple dinners and early bedtimes, while we made a pizza and watched a movie together. That became our rhythm, and even now—30 years in—we still do it (though the routine has shifted slightly). These days, we go out twice a month, and it’s been a sweet way to reconnect and remember the why behind our yes.


Lesson #5: Grow Together in Faith

Find a church home where you both can grow. For us, this took time. B didn’t come to know Jesus until seven years into our marriage, so those early years were rough. Now, though we don’t do Bible studies together or sit and pray hand-in-hand, B prays over me every night. That means the world. Loving Jesus together looks different for every couple—and that’s okay.


Lesson #6: Stop Trying to Change Your Spouse

Your spouse’s quirks? They’re likely not going anywhere. It’s not your job to mold your spouse into who you think they should be. That job belongs to God. You focus on your own walk, your own growth, and let the Lord handle the rest. Real transformation doesn’t come through nagging—it comes through grace.


Lesson #7: Dance in the Kitchen

Or under the stars. Or while brushing your teeth. It sounds silly, but it’s one of those little things that make a marriage feel alive. Don’t take yourselves too seriously. Find joy in the ordinary.


Lesson #8: Embrace Intimacy

Intimacy isn’t just about sex (though regular sex is important in marriage, if you’re able). Sometimes that’s not possible for health or other reasons. But intimacy can also look like holding hands, snuggling, forehead kisses, or lingering hugs at night. Communicate. Touch. Connect—physically, emotionally, and spiritually.


Marriage is hard work, but it’s also sacred work. Make it a priority. Protect it. Nurture it. Fight for it. Laugh, cry, grow, and dance together.

This is a tip from my Lady.

Lesson #9

Pro tip from my husband: Communicate.

Lesson #10

Another pro tip from my husband: Don’t cheat.

He is a man of few words but his words, when spoken, are wise.

If you have anything to add, leave me a comment and I will tack them on!

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