Tag: opscolonus myoclonus syndrome

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Dear Special Needs Mama

Brandi C

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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Day He Ran –Our Beach Miracle

Brandi C

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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Speaking the Language of Rare – Part 2

Brandi C

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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Speaking the Language of Rare – Part 1

Brandi C

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

What You Don’t See – Life Today with OMS

Brandi C

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

Brandi C

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

Trudging Through the Muck of Life

Brandi C

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

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

Brandi C

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 Prophecy and The Call

Brandi C

The Prophecy and The Call

The Prophecy and The Call

In December, we found ourselves at church, preparing for worship. After several months of church hunting, we had settled on one that we had initially been hesitant to visit. We knew the pastor and his wife, along with a few families, but we hadn’t been attending for long. It felt different from the churches we were used to. What we weren’t prepared for were the The Prophecy and The Call.

People Watching

Before the service began, the pastor called up a man to give a “word” to some members of the congregation. We had learned that this practice was somewhat common, but it was still unusual for our family. We sat, watching this man pace in front of the congregation.

I’m naturally a people-watcher, and one thing that caught my attention was that the man never opened his eyes as he paced and spoke. He kept touching the inside of his hands, and it was clear that he felt uncomfortable but was determined to be obedient. He shared that he had received a word from the Lord and wanted to make sure it wasn’t just his own thoughts. Through sleepless nights, he confirmed it was from God, and he knew he had to obey.

The Word

The man said that he had a word for someone in the congregation. As he continued pacing, I felt a strange shift in the atmosphere. When he stopped directly in front of Big Daddy, I felt like the air was sucked out of the room. He asked Big Daddy to stand up, and I looked to the altar. Our pastor smiled at me and gave a reassuring nod, signaling that everything was okay.

The Man

The man, whom we had never met before, told Big Daddy to hold onto his hand. Big Daddy is not a small man—his hands are enormous, so when he stood, he commanded attention. The man then said, “Hold on. Hold on tight to the rope and do not let go. Trust and hold on tight.” I felt a wave of energy flow through me, and tears streamed down my face. I don’t often cry, but in that moment, I knew we were about to embark on something challenging.

The Beginning of 2017

As the year started, life seemed to spiral. My father had quadruple bypass surgery. Then, my niece was sentenced to prison, and my nephew was close behind her. My daughter went to military school due to behavioral issues, and we faced a devastating family situation involving another baby. Add onto that, my oldest daughter called off her engagement, lost her job, and we were fighting insurance companies over my son’s surgery. On top of all that, my Lady got sick. The weight of it all felt unbearable, but the reminder to “hold on” stayed with us.

Even More Challenges

Big Daddy and I worked hard to navigate a difficult family situation. We did everything we could, but ultimately, it was out of our hands. I confided in a friend, and she told me to “hold onto hope.” She also shared that the Hebrew meaning of “hope” is “rope,” so we should hold onto the rope. I paused, texted her back, and asked who had told her that. She said it was a word from the Lord for me. I asked if she knew the man from church who had said the same thing, and she didn’t. That was the second time we had heard the message to “hold on.”

The Call

Then, on Tuesday morning, June 6, 2017, my sister called me. She rarely calls on a Tuesday, so I knew something was up. When I asked if everything was okay, she told me she had received an odd text from a former neighbor—a woman she used to walk with. This woman said that the Lord had placed my name on her heart and that she was praying for me. I had never met this woman, nor had I ever spoken to her, and I found it unsettling. My sister urged me to take it as a blessing, but I couldn’t shake the feeling that something was about to happen. It was about 4:30 pm, that afternoon, that we knew something was wrong.

Daddy’s Love

After my child became sick, I spent almost two weeks in the hospital with him. I was exhausted, overwhelmed, and emotionally drained. The doctors had told me a thousand things, none of which were good. One day, my sister—H’s “Mamaw”—came to give me a break. She handed me a gift from my father—a flat pillow, my grandmother’s quilt, and a message from my dad. That gift, along with the constant reminders to “hold on,” has stayed with me. It reminds me that both my heavenly Father and my earthly father love me and that everything will be okay.

💛 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.

Related Posts

A Diagnosis Does Not Define You

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Let Us Marinate

Brandi C

Let Us Marinate

Let Us Marinate

 

Let Us Marinate on the picture. Open it up, enlarge it and just look. This canvas is a 16×20, and there is NO room left to put ANY type of bead. Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Bead of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads. We kept them, for the longest time, on strings. The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes that were overflowing. So, one day, I thought…let’s see what I can come up with. What I ignored was the WEIGHT of this thing. There is no way a nail can hold this thing up. We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc. that the child has done. I will say, H did not earn any beads for the first 3 years of his disease. This was because BOC was a program for terminally ill children or children with cancer. I believe there was also, at his hospital, a cardiac program. When we moved hospitals, the requirements changed. Now, BOC includes those children/young adults with life-altering conditions. So, these are the beads he has earned in the last 2 years. Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osteotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement.

Tortoise (too many to count)

Procedures include Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injections, aspirations, and others.

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visits (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection. These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment-related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other.

Fish (60)

Transfer units or facilities, long-distance travel for care, “upstream battle.”

Transplant Glass Selection (24)

Transplant

Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017, had WAY more procedures, pokes, traveling, transplants, and all than he has had in the last 2 years. This canvas is only the last 2 years of the 5 he has had since he has gotten sick.

Resiliency.

He is fantastic, brilliant, strong, capable, and able, and now he is HEALED. I never thought I would say that word concerning H, but here we are saying it loud and proud for all to hear. God is good. I didn’t think He was good. Honestly, I wondered if He even existed sometimes. Yet, I had warriors all around us that held up my arms and faithfully prayed for my son. They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed…Yet he did not waver through unbelief regarding the promise of God but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had the power to do what he had promised.

Take that OMS!