Adoption, Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Twelve Candles After Silence

Twelve Candles After Silence

Not Ready Yet: Twelve Candles After Silence

The room was supposed to be a doorway home.
Quiet, not heavy. Not sad.
Just full of the relief that comes
when five long days are finally over.

Bags packed.
Shoes by the door.
Hope sitting quietly on the edge of the bed
waiting to go home.

He was scared.
I remember that most.
Wide eyes searching my face
while I tried to sound calm enough
for both of us,
telling him every step
like calm could be borrowed.

I asked if they were qualified.
They said yes.
They said it was standard.

And then everything stopped being standard.

The line came out
and fear flooded his eyes so fast
it felt like watching a storm swallow the sun.

“Mommy help me.
Mommy save me.
I am on fire.
My heart is on fire.”

Over and over
like a prayer no one else heard.

His skin turned cold under my hands.
Pale. Fragile.
Clammy fingers.
Dark circles carving shadows beneath his eyes
like exhaustion had finally caught him.

I looked at the doctors
and they stood there, white as ghosts,
perplexed,
calling it behavior.

Behavior.

My hands knew better.

A body running out of strength
like he had already fought a thousand miles.
A child folding inward
while the room stood still.

That was the moment I knew
no one else was coming to save him.

I climbed onto the bed
because love does not wait for permission.
Held him as tight as fear would allow.
Kept explaining every second
even when my voice shook.

“Your room isn’t ready.
I’m not ready.
Please don’t leave me.
Wake up buddy.
Wake up.”

His body felt emptied out.
No strength left.
No fight left.
Just silence growing heavier in the air.

And then he went still.

Eyes rolling back.
Breath gone.
Silence louder than any machine.

I screamed his name into a room
that suddenly felt enormous and empty.
>I remember crying.
>I remember dissociating.
>I remember the sound of my own voice
echoing back at me like I was alone.

So much silence.

I pressed into his chest
hard enough to hurt
because pain was the only language left.

And he came back.

Later he told me what I could not see.

He said he was warm.
Bright.
Peaceful.

He said he saw me crying.
He said he was talking to me
telling me not to cry
but I couldn’t hear him.

I wish I had heard that.

A kind nurse.
Another doctor.
Movement finally replacing stillness.

A lung nicked.
Medicine where air should live.
Not life-threatening, they said,
but close enough to haunt every breath since.

We drove four hours toward someone who would listen.
The road long.
The night longer.
No talking.
Just silent tears
and a body driving home
while my mind stayed behind in that room.

And now—

Twelve years old.

Still fighting a body that refuses easy answers.
Still living with a diagnosis that does not care about fairness.
A nervous system writing its own rules.
A life many dismissed
like it was nothing.

But he was never nothing.

He is the child who fought to stay.
The child who heard his mother’s voice
through silence
and chose to come back.

And still
he wakes up.
Still
he fights.
Still
he breathes.

Twelve candles burning tonight
because love refused to be quiet
and a mother kept knocking
on a door
that heaven almost closed.

I do not say his name here,
but heaven knows it.
And I know it.

Twelve years after a room went silent,
he is still here.

And so am I.

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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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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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Make A Wish and Give Kids The World

Make A Wish and Give Kids The World

For children and adults navigating life-altering medical conditions, the days can feel long, uncertain, and heavy. Between appointments, therapies, and the emotional toll of managing a chronic or critical diagnosis, joy can feel like a distant memory. That’s where the Make-A-Wish Foundation steps in—not just to fulfill a dream, but to restore hope. When we went to Disney, Make A Wish and Give Kids The World were two places that gave a bit of joy to the unimaginable.

A wish granted is far more than a moment of happiness. It becomes a turning point—a reminder that even in the hardest seasons, something beautiful can still bloom. Whether it’s a trip, a chance to meet a hero, or the fulfillment of a lifelong dream, these experiences offer a sense of normalcy and celebration that families often miss in the chaos of illness.

For many wish recipients visiting Disney, the Give Kids The World Village in Central Florida becomes their home away from home. This whimsical, storybook resort partners with organizations like Make-A-Wish to give families a place of rest, joy, and magic. Every detail is designed with love—from ice cream for breakfast to nightly parties and endless smiles. It’s a space where families can simply be together, free from the burdens of medical schedules and daily worries.

What makes both Make-A-Wish and Give Kids The World so special is their understanding that emotional healing matters, too. A wish doesn’t erase the diagnosis, but it can renew strength, rebuild courage, and give individuals something to look forward to when everything else feels uncertain.

If you’ve never supported these organizations, consider doing so. Your gift, time, or advocacy could help write a chapter of joy in someone’s hard journey.

And always—choose grace. Smile. Show compassion. You never know the impact one act of kindness can make.

💛 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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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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Dear Special Needs Mama

Dear Special Needs Mama

Dear Special Needs Mama – A Letter from the Fire

Dear Special Needs Mama,

I don’t know your name, but I know your heart.
When I look at you, I see the bags under your eyes and the fear behind your smile.
I hear the weight in your silence when someone asks, “How are you?”

I’ve been there.

Maybe you’re still in the ER. Still waiting for someone to say something—anything—that makes sense.
Honestly, maybe you’re deep into the battle and just need someone to tell you you’re not crazy.
Maybe you’re watching your child suffer and wondering if you have what it takes to keep going.

You do.


You’re Not Failing

Remember, you’re navigating a world most people can’t even imagine.
You’re balancing meds, therapy, paperwork, appointments, insurance, and everyone else’s expectations.

You’re not weak.
My friend, you’re a warrior.


It’s Okay to Cry

You don’t have to hold it together all the time.
And you don’t have to explain everything to everyone.
You’re allowed to feel overwhelmed.

But don’t forget—you’re also allowed to feel joy.
Even here. Even now.


“God is within her, she will not fall; God will help her at break of day.”
— Psalm 46:5


From Me to You

If no one has told you lately:

I’m proud of you.
You are not invisible.
And you are not alone.

You are doing holy work.
And even on the days that break you…
You are still enough.

With love,
A mama in the trenches
Who believes in miracles
And still cries in her car while drinking coke lots sometimes

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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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When the Siblings Are Watching

speaking the language of rare – part 1 (4)

When your child is sick, your entire family gets pulled into the storm. What some people may forget is that there are other siblings in the home. This is about When the Siblings Are Watching – The Ripple Effect of Chronic Illness.

In our home, the impact of Opsoclonus Myoclonus Syndrome didn’t stop with one diagnosis. It hit every room, every relationship, every rhythm. And while H was the one in the hospital bed, the ones in the waiting to hear the news of his improvements or tests were his siblings—watching, holding, adapting.


The Invisible Load They Carry

They missed birthdays. There were some missed holidays.
They learned to whisper when he was home and sleeping.  My kids learned how do his exercises with him and adapt to his new way of living.

They saw fear in my eyes when I tried to be brave.
There were (still are) big emotions as they watched their baby brother shake, scream, regress—and come back again.
They learned the names of medicines most adults have never heard of.

In the end, they prayed, they played, and they waited.

And they kept loving.


How It Shaped Them

I won’t say it was easy.
It wasn’t.

But it shaped them.

They are more empathetic. More patient and more aware of invisible struggles.
They know what it means to serve without being asked, to show up without being noticed.
And I believe they are better humans because they lived through this with us.


How We Support Them

We’re not perfect, but we try.

  • Open conversations about what’s happening and why

  • Time alone with us, just them, even if it’s brief

  • Therapy, when needed

  • Acknowledgment—because their sacrifices matter

  • And lots and lots of grace


“Carry each other’s burdens, and in this way you will fulfill the law of Christ.”
— Galatians 6:2


💛 Heartbeat Moment

If you’re a parent walking this road—don’t forget the ones standing beside the bed. The siblings who are hurting and healing, too.

Let’s not just fight for the one who’s sick.
Let’s fight for the whole family.

💛 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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When the Doctor’s Told Me There Was No Hope

When the Doctor's Told Me There Was No Hope

I will never forget the day a doctor told us, “There’s no hope.”
Not in those exact words, maybe—but close enough. The weight of it settled like a stone in my chest. My son—my precious, brave boy—was facing Opsoclonus Myoclonus Syndrome, and suddenly, it felt like the world was holding its breath. When the Doctor’s Told Me There Was No Hope, the Lord was whispering something different.

There is something soul-shaking about hearing someone in a white coat, someone trained to fix what’s broken, tell you that your child may not get better. That this could be your forever. That this is as good as it gets.

But here’s what I’ve learned:

Hope doesn’t come from doctors. It comes from the Lord.

Doctors are human. They do their best with what they know. But their knowledge is limited. Our God is not.

When the medical community stopped speaking hope, God kept whispering it. In every quiet moment, tear-stained prayer, and in every ounce of strength I saw in my son when he should’ve had none.

The world says, “Don’t get your hopes up.”
But I say: Get them up. Lift them high. Anchor them in Jesus.

Because even when the diagnosis is rare, the prognosis is grim, and the outcome is unknown—God is still the God of hope. He isn’t confined by statistics and He isn’t intimidated by symptoms. The Lord doesn’t operate by percentages.

We saw Him move. In ways medicine couldn’t explain, in tiny improvements that felt like miracles. Also, in strength returning where it had disappeared. In joy rising up in the middle of impossible days.

And no matter how long the road is, or how uncertain tomorrow looks, we keep walking with hope—not because we ignore reality, but because we know Who holds it.

So if you’ve heard those crushing words—“there’s no hope”—I want to gently, fiercely tell you:
That’s not true. There is always hope where God is.

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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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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Protocol Doesn’t Work

When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World

When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World. In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like my son, H.

He devoted his life to researching OMS and founded the National Pediatric Myoclonus Center, where he developed what is now referred to as the Pranzatelli Protocol—a standard in OMS treatment. His contributions shaped how physicians approach this rare and life-altering disorder.

“When you hear hoofbeats, think horses, not zebras.”
But what if… your child is not a zebra either? What if they’re something even rarer—something doctors haven’t seen before?


👨‍⚕️ Dr. Pranzatelli’s Legacy in the OMS World

Dr. Pranzatelli’s approach was both groundbreaking and aggressive—because OMS is a disease that demands swift, bold treatment. His typical protocol included:

  • High-dose corticosteroids (IV methylprednisolone or oral dexamethasone)

  • ACTH (Adrenocorticotropic Hormone) shots

  • IVIG (Intravenous Immunoglobulin) infusions

  • Rituximab, a chemotherapy drug used to suppress the immune response

You can read more about his contributions and legacy on the Child Neurology Society’s memoriam.

A more detailed explanation of OMS treatment protocols is also available in this Rare Disease Network guide.


📊 OMS and the Numbers

While OMS is often linked with neuroblastoma (a rare form of childhood cancer), not every case fits that mold.

H falls into that second group—idiopathic. No tumor, no infection, and no clear trigger. And that made things complicated from the very beginning.


💊 When the Protocol Doesn’t Work

Dr. Pranzatelli’s protocol works well for many children. But not for every child.
And definitely not for my child.

H’s case has always been atypical. He has OMS, but he never followed the textbook pattern. We tried everything:

  • Steroids

  • ACTH shots

  • Monthly IVIG

  • Rituximab

  • Natural supports

  • Nutrition changes

  • Even Plasmapheresis (PLEX)

And still, many of the symptoms persisted—or even worsened.

We weren’t just battling tremors or regressions—we were dealing with rage, insomnia, emotional dysregulation, and a child whose nervous system was constantly on edge.
When standard protocols didn’t work, we were left with a terrifying question:
What now?


🔥 Living in Flare Mode

One of the hardest parts of life with OMS is how easily symptoms can return.
We call them flare-ups, and they are no joke.

A simple cold, a stomach bug, a sleepless night, or even being too hot outside can send H into a full-on neurological flare.

  • Tremors return.

  • He can’t balance.

  • Speech slurs.

  • His behavior shifts.

  • His eyes dart uncontrollably.

  • He can’t process or regulate.

  • He goes from stable to spiraling in a blink.

We live in constant vigilance. We avoid large crowds, prep obsessively for weather changes, and treat every sniffle like it could lead to a storm.

There is no “just a virus” in our house.


🧠 H Is Not the Protocol

I used to believe if we just followed the treatment plan hard enough, long enough, it would all go away.
But H is not a protocol.
He’s a person.
A living, breathing, beautiful mystery.

He may not respond the way “typical” OMS kids do, but he’s still here. Still fighting. Still rewriting what healing can look like.

He’s not a horse.
>He’s not even a zebra.
>He’s an okapi. Rare. Remarkable. Unmistakably his own kind of miracle.


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


💛 Heartbeat Moment

For the families just starting this journey: If the meds don’t work, if your child doesn’t fit the mold, you are not alone.

H’s story is not one-size-fits-all—and neither is yours.

There is no shame in being the exception.
>There is no weakness in needing to try something different.
>There is only strength in staying in the fight.

And as for me?

I will keep fighting for the okapi.

💛 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

Hold On to Hope

stay inspired. never stop creating. (2)

When my son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), the world shifted beneath our feet. It was one of those moments that divides life into before and after. Fear came crashing in, and the questions outnumbered the answers. The only phrase that permeated through my life was “Hold On to Hope.”

In the middle of that storm, Hebrews 10:23 became a lifeline:
“Let us hold unswervingly to the hope we profess, for He who promised is faithful.”

It didn’t say, “Hold on when it’s easy,” or “Hold on when everything makes sense.” It said, unswervingly. Without turning. Without hesitation. Without giving in to the fear or the doubt.

That kind of hope doesn’t come from our own strength—it comes from knowing the character of God. And I had to decide: do I believe He is faithful, even when I can’t see the outcome? Even when healing doesn’t look how I imagined? Even when the journey is long, hard, and uncertain?

The answer—again and again—was yes.

There were days I had to whisper it through tears. There were days when I could only breathe it. But I held on. And God held us. Through hospital stays, setbacks, victories, and the beautiful, miraculous moments in between—He was faithful.

If you’re walking through something hard right now, this is for you: Don’t let go. Don’t lose hope. The One who promised is still good. Still present. Still faithful. Hold unswervingly. You are not alone.

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

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

Praising God in the Cold and the Storm

before the shaking began (8)

There’s this image I used to carry—me, my family, sitting around a cozy campfire, singing Kumbaya. Everything is warm, glowing, peaceful. That’s how life feels when everything’s running smoothly. When you’ve got that rhythm. That flow. Here I am, Praising God in the Cold and the Storm.

But what happens when the fire starts to die?


When the Fire Goes Out

You feel it—things shifting. The air gets colder. Your fire starts to fizzle. You frantically grab whatever you can find—scraps of paper, bits of old wood, anything to keep it alive.

Then, out of nowhere, a bird flies overhead and pees on your ember.
Gone. Just like that.

No flame, no light, and no heat.
You sit there… cold.
You think it can’t get worse.
But it can.

You realize you’ve eaten your last s’more.
>No heat. No light. No food.
It’s doable. It sucks. But it’s doable.

And then?

The monsoon hits.

Suddenly, you’re drowning in it. The weight. The grief. The fight. The diagnosis. The not-knowing. The knowing-too-much. The never-ending appointments. The medicine. The meltdowns. The rage. The silence. The fire feels like it will never come back.


This Past Year

That’s what this last year has felt like.

Once we received the official clinical diagnosis, everything changed.
And yet… nothing was fully certain.

There is no single test for Opsoclonus Myoclonus Syndrome (OMS). It’s not black and white. No MRI, LP, blood panel, EEG, or X-ray can definitively say: “This is what your child has.” It’s a combination of symptoms, observations, and the experience of doctors willing to say what others can’t.

It’s living in limbo with a name that doesn’t always behave like it’s supposed to.


Protocol After Protocol

We started the “standard” protocol.

  • High-dose steroids while hospitalized

  • Monthly IVIG

  • Four rounds of Rituximab (a type of chemo)

  • When that didn’t help, we added ACTH (daily high-dose steroid shots)

ACTH brought an unholy level of rage, insomnia, and OCD.
I watched my sweet boy disappear into something wild and constantly panicked.

He lived in fight or flight.
And so did I.


Second Opinions & the Blessing of Brutal Honesty

I got a second opinion—without permission. Because when you’re a mama in the storm, you do what you must.

This doctor was honest. Blunt. And honestly, I needed it.

She didn’t immediately see signs of OMS and she believed the progression was more aggressive. In the end, she suggested starting over—repeating all the tests.

We did.

And wouldn’t you know? While in the hospital, his ocular flutter returned.

She circled back and agreed: it most likely is OMS.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life…”
— James 1:12


Zebra vs. Okapi

In the medical world, doctors are taught:
“When you hear hoofbeats, think horses—not zebras.”

A zebra means something rare. Something unlikely.
We were sure H was a zebra.

But we were wrong.

He’s not a zebra.
He’s an okapi.

Strange. Rare. Beautiful. Mysterious. And completely misunderstood.

And in some holy, divine humor—the okapi just so happens to be my all-time favorite animal.

Go figure.


💛 Heartbeat Moment

Praising God in the storm doesn’t always look like singing around a fire.
Sometimes it looks like sitting in the cold, soaked to the bone, whispering,
“God, I trust You,” even when your teeth are chattering and your heart is tired.

Sometimes praise is a whisper.
And sometimes it’s tears.
Sometimes it’s survival.

But it’s still praise.

Because even in the rain… even in the dark… even when the fire is out…

God is still God.

And the fire? It always comes back.

“When you pass through the waters, I will be with you…”
— Isaiah 43:2

💛 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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