Tag: Parenting through medical crisis

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

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

8 Years Ago: The Beginning of Change

Brandi C

opsoclonus myoclonus syndrome header 300x97

8 Years Ago: The Beginning of Change

A Journey of Faith, Fear, and Finding God in the Chaos

8 Years Ago Our Lives Changed, our world shifted in a way we never saw coming. Our youngest son had just turned three, and life felt beautifully ordinary—summer evenings at the ballfield, laughter echoing through the house, and a rhythm that felt familiar. But this date became a line in the sand—the moment everything changed.

What followed was a journey of medical mystery, emotional endurance, and soul-deep transformation. It’s a story marked by suffering, but more than that, it’s a story of survival, surrender, and the relentless faithfulness of God.

Some of these moments still feel too tender to fully unpack. Some wounds remain unhealed. But after eight years, I’m ready to begin telling our story—piece by piece—and allow the Lord to begin mending what was shattered.

Life Before OMS: When Normal Was Enough

Before 2017, I had found a manageable rhythm. My anxiety and depression, diagnosed at 19, were ever-present but contained. I had learned how to live around them—how to build a life that worked within my limits.

I could go to Walmart without disassociating. I could sit in a restaurant and actually order a meal. I was active in church, involved in our homeschooling community, and genuinely enjoyed opening our home to others. It wasn’t a perfect life—but it was peaceful.

But in a single moment, peace gave way to panic.

Thrown Into the Unknown: A Mother’s Relentless Pursuit

When our son became sick, everything changed. My husband had to stay behind with our six other children. That left me—terrified, inexperienced, and already emotionally fragile—to carry the weight of a life-or-death journey.

I had to become the advocate, the nurse, the social worker, the travel coordinator, the warrior. I made the calls, booked the appointments, and crisscrossed states like Kentucky, Ohio, Pennsylvania, Florida, and Tennessee searching for answers.

There was no time to pray about decisions. There was no margin to grieve. I had to bury my fear and keep marching forward, making decisions most parents should never have to face—alone.

Life After OMS: From Warrior to Wounded

Our intense medical travels lasted from 2017 through 2021. After our son’s final plasmapheresis treatment, I stopped traveling long distances altogether. Then, slowly, I stopped leaving the house unless absolutely necessary.

Even things like going out for dinner became mountains I couldn’t climb. Anxiety stole parts of me I didn’t even know could be taken.

I can still work—that’s a space I can manage. I can still attend church—that’s my place of peace. But beyond that? Life feels small now. Controlled. Contained. Safe.

One night, my parents wanted Culver’s. My mom was recovering from surgery, and my dad rarely goes out. I offered to pick it up—but had to type the order into my phone so I wouldn’t forget. I had a panic attack in the car, sobbing as I called my husband. He stayed on the phone the entire time, talking me through a fast-food drive-thru.

That’s where I’m at. And it’s okay to name it.

The Weight of Trauma: Why I’m Still Healing

Years of emergency decisions have left deep emotional bruises. I lived in survival mode so long that I forgot how to live any other way.

“Do you consent to high-dose steroids and IVIG?”

“We need to prepare for the worst.”

“Sign here. And here. And here.”

“Your son needs chemo.”

“You need therapy too. Good luck finding time.”

Every one of those decisions was made in real time, without room to breathe or process. I pushed my own needs aside to save my child’s life. And now? I’m trying to find the pieces of me I left behind in hospital rooms.

A Complex Kid, A Faithful God

Our son is still medically fragile. Stress wreaks havoc on his little body. But he’s here. He’s mischievous, wildly imaginative, and brave in a way I can’t fully describe. Every year on his birthday, I send updated photos to the neurologists who doubted his survival. Their stunned responses always fill me with awe—and gratitude.

I am so thankful for the people who stood by us—those who called, prayed, donated, or simply saw us. My husband and children carried me when I couldn’t carry myself. But in those hospital rooms, it was mostly just me and my son… and God.

And let me be clear: God never left.

Even in the confusion. Even when healing didn’t look the way we wanted it to. Even in the silence. He was there.

Walking Into Healing: One Step at a Time

This story doesn’t have a clean ending yet. There are still panic attacks, still days I cancel plans, still fears I can’t always fight off. But I’m learning to hand my fear back to God—to trust that He’s still writing this story.

I’m ready to start healing. To breathe again. To trust again. Not just in doctors, or therapy, or time—but in the God who never once turned His face away from me.

If you’re walking through something hard, I hope our story reminds you: you are not alone. There is no valley too deep for God’s presence. No diagnosis, no fear, no trauma that disqualifies you from His love or your purpose.

Let’s Keep the Conversation Going

This month, I’ll continue sharing parts of our journey with Opsoclonus Myoclonus Syndrome (OMS)—the diagnosis that changed everything. If you have questions, I welcome them. If you feel led to comment, please do so with kindness.

Thank you for being here—for witnessing our story and holding space for it.

There is beauty on the other side of brokenness. And I believe God is still making all things new—even here.

💛 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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