Category: Opsoclonus Myoclonus Syndrome

Opsoclonus Myoclonus Syndrome

Our journey with Opsoclonus Myoclonus Syndrome—raw, real, and rooted in faith.

This category shares personal stories, resources, and medical insights from living through and advocating for OMS, a rare neurological disorder. From diagnosis to treatment to moments of miraculous healing, each post is written with honesty, hope, and the prayer that no parent walks this path feeling alone.

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Calm Breaks

Brandi C

When the Calm Breaks

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

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

Something wasn’t right.

Blink, and Everything Changes

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

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

But then I blinked again… and I saw it.

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

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

The Mama Who Doesn’t Panic

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

I told them that.

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

They didn’t.

Not even close.

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

Surrounded, But Alone

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

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

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

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

The Student Who Changed Everything

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

However, he didn’t stop there.

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

The Words That Broke Me

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

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

That conversation broke me.

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

I let it out.

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

So I did.

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

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

A Moment—and Then Joy

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

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

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

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

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

I told them that God would be glorified through this.

And the room changed.

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

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

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

 

Related Posts

Tips on Building Self-Confidence

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.

Related Posts

Nothing is Impossible: One Step at a Time

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Even When There Was No Reason for Hope

Brandi C

Even When There Was No Reason for Hope

There’s something about this verse that stops me in my tracks. Even when there was no reason for hope… Abraham kept hoping. Why? Because God had said. I was told there was no hope in my son living, however, Even When There Was No Reason for Hope.

This isn’t blind optimism. This isn’t wishful thinking. This is faith—the gritty, hold-on-tight, eyes-on-God kind of faith. The kind that says, “I believe You, Lord,” even when everything around says it’s impossible.

This verse became my anchor, my theme, when my son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS). In the face of uncertainty, fear, and countless questions, this Scripture reminded me to hold on—to keep hoping. Not because circumstances gave me a reason, but because God had spoken promises over my child’s life, and I clung to them with everything I had.

How often do we face situations that seem hopeless? A diagnosis. A broken relationship. A shattered dream. The temptation is to let go. To stop believing. To shrink our prayers.

But Abraham’s story reminds us: when God speaks a promise, we can stand on it. Even if we don’t see it. Even when time drags on. Even when our hope feels foolish. If God said it, that’s enough.

Maybe today you’re in a season where hope feels far away. Let Abraham’s faith encourage you. Keep hoping—not because circumstances make sense, but because your God is faithful.

What He says, He will do.
Even when there’s no reason for hope—keep hoping anyway.

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.

Related Posts

Integrity

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Shaking Doesn’t Stop

Brandi C

The Shaking Doesn’t Stop

The Shaking Doesn’t Stop

The Second ER – Misdiagnosis #2

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

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

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

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

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

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

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

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

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

Discharged – But Not Done

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

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

We knew then—we needed to keep pushing.

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

The Third ER – Misdiagnosis #3

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

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

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

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

Heartbeat Moment: When the Shaking Begins

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

We weren’t just walking through a medical crisis.

We were walking through holy ground.

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

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

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

Related Posts

Courage in EnCOURAGE

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Before the Shaking Began

Brandi C

before the shaking began

A Sweet Night at the Ball Field

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

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

And oh, he did.

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

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

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

The Next Day: A Shift in the Air

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

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

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

Stop shaking.

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

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

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

The Nap That Changed Everything

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

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

It was only about ten steps away.

I stood him up…

He wobbled and he stumbled.

And then… he fell.

He cried out, terrified. My heart dropped.

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

After a few minutes, I stood him up again.

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

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

The First ER Visit – Misdiagnosis #1

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

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

It scared him.
It scared me.

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

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

Friends Who Move Mountains

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

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

And that’s exactly what we did.

To be continued…

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

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

Related Posts

How to Live Life

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

When Your Child Is a Medical Zebra… or an Okapi

Brandi C

When Your Child Is a Medical Zebra… or an Okapi

When Your Child Is a Medical Zebra… or an Okapi

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

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

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

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

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

Let me explain.

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

And then, there’s my son.

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

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

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

Just like my boy.

The Struggle With the Unknown

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

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

And let me tell you… that’s isolating.

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

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

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

A Visual That Helps Others Understand

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

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

So What Now?

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

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

Thank you for being here. Thank you for caring.

Let’s keep learning together.

Reach Out

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

Related Posts

Show Me Your Glory Trailer Review

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Understanding Opsoclonus Myoclonus Syndrome (OMS)

Brandi C

Understanding Opsoclonus Myoclonus Syndrome (OMS)

Understanding Opsoclonus Myoclonus Syndrome (OMS):

What It Is and Why It Matters

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

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

What Is OMS?

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

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

Key Symptoms of OMS:

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

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

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

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

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

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

Diagnosis of OMS

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

  • Clinical presentation of symptoms

  • MRI scans to rule out other neurological conditions

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

  • Sometimes, spinal taps or EEGs

Treatment Options

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

  • High-dose steroids (IV or oral)

  • IVIG (Intravenous Immunoglobulin)

  • Chemotherapy agents like Rituximab or Cyclophosphamide

  • Plasmapheresis (plasma exchange)

  • Physical, occupational, and speech therapy

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

What OMS Is Not

OMS is not:

  • A result of poor parenting

  • A behavioral disorder

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

  • Well understood by most general practitioners

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

Faith in the Unseen

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

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

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

Why This Matters

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

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

Thank you for being here. Thank you for caring.

Coming Up in This Series:

  • Personal reflections on how the diagnosis reshaped our daily life

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

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

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

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

Related Posts

The Importance of Little Acts of Kindness

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.

Related Posts

The Importance of Little Acts of Kindness

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Faith Through the Fog: Our Journey with OMS, Eight Years Later

Brandi C

faith through the fog our journey with oms, eight years later

Faith Through the Fog: Our Journey with OMS, Eight Years Later

In the month of June, I’m leaning into something I’ve long put off—sharing more of our story, the unfiltered version. Eight years ago, our lives were flipped upside down when our youngest son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), a rare and often misunderstood neurological disorder.

It’s a journey that has left a permanent mark on our family, especially on me as a mother—and as a woman of faith. This summer, I’m pulling back the curtain. Not for sympathy, not for shock value, but to honor my son’s story… and to tell mine.

Honoring a Warrior: My Son’s Story

Lord willing, I hope to get my son to help me tell his side—his memories, his moments, and what he understands of it all, eight years later. He remembers some things with a sharp clarity, and others, he doesn’t recall at all. That alone is hard for my mama heart to sit with.

But I believe there’s healing in the telling. There’s something holy about giving space to the hard, and allowing our kids—especially those who’ve been through trauma—to have a voice. This month, I want to hold space for him. And for me, too.

A Mother’s Faith in the Middle of the Fire

This journey changed me. It didn’t just impact our schedule or our parenting style.  OMS changed who I am. It reshaped how I see God, how I pray, how I walk through suffering, and how I love others who are also barely hanging on.

There’s a lot I still can’t fully unpack. This diagnosis came in like a wrecking ball—but so did the rest of my life at the time. It wasn’t just my son’s illness. It was everything else swirling around it: the weight of other children to care for, my own health, marital strain, and what I believe was a full-blown nervous breakdown that I didn’t have time to name.

And yet—through it all—God never left.

What Is Opsoclonus Myoclonus Syndrome (OMS)?

If you’ve never heard of OMS, you’re not alone. It’s an ultra-rare autoimmune neurological condition that often presents suddenly and without warning. It affects motor control, speech, behavior, and sometimes cognition. Most of all, it brings chaos and confusion—not just to the child, but to every person who loves them.

This month, I’ll be sharing more about what OMS is… and what it is not. There are so many misconceptions, and I believe awareness can be a bridge toward compassion. Toward better care. Toward understanding what families like ours really go through behind the scenes.

Why Now?

Why share this now, after eight years? Honestly, I don’t think I could have done this sooner. Even now, parts of this feel too fresh to touch. Some memories still sting like they happened yesterday. But I’m learning that healing doesn’t mean forgetting—it means finally making peace with what has been, and giving God permission to use it.

This month is about remembrance. It’s about grief. It’s about gratitude. And it’s about faith—real, raw, wrestling-in-the-dark kind of faith.

What to Expect This Month

  • Personal stories from the early days of our OMS journey

  • Reflections on how it shaped (and tested) my faith

  • Insights from my son, as he remembers his own story

  • Education and awareness about OMS for those who want to learn more

If you’ve ever felt like life hit you out of nowhere… if your faith has ever been shaken by a diagnosis, a trauma, or a season of survival—you’re not alone.

Walking Together

My hope is that this corner of the internet becomes a place where people feel seen. Where messy faith is still welcome. Where God’s presence is real, even when the path feels anything but clear.

Thank you for being here. For reading. For walking this with us. I pray that as I share this story, God uses it to minister to your heart in some way—even if your road looks completely different.

He is faithful. Even when it’s foggy, even when we’re broken, and even when we can’t see the way forward. He is still God.

Here’s to healing. And to the God who walks with us through the fire, not just on the other side of it.

I’d love to hear from you:

If you have questions about OMS, drop them in the comments or message me privately. If you’ve walked through a similar season of suffering or medical trauma, I see you. Let’s hold space for each other.

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

Related Posts

Not All Storms Disrupt

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Resources for Special Needs Kids

Brandi C

Resources for Special Needs Kids

Resources for Special Needs Kids
Photo by Alexander Grey on Pexels.com

 

Free Items for Children with Special Needs

Here are some Resources for Special Needs Kids. There are many more listed on Meriah Nichols Website. If you have participated or know of any other resources, please drop me a comment below so I can add it!

Ones We Have Participated In

Songs of Love Foundation this one was AMAZING, and they are so wonderful! 

Weighted Blankets, Lap Pads, and Fidgets go above and beyond to accommodate you. We did give them a small donation because they made four blankets, six-lap pads, and several fidgets. Again, above and beyond.

Make a Wish, and if you go through MAW, you can also receive a scrapbook from Crops of Luv. Wow. MAW provided something I never thought I would be able to do. Not only did they take my HUGE family, but they added in H’s biological brother and sister. Also, my sister and brother-in-law raise those kids. In total, 13 people were going without a blink of an eye! Crops of Luv, words cannot express my son’s joy at seeing your creativity with his Disney scrapbook.

Rare Bear Program. Such a cool thing. They ask what your child likes and try to create a bear with that fabric. It is very well made and very well-loved.

Free Cake from Icing Smiles. We have just applied to this, so I will keep you posted.

National Park Pass includes anyone in the vehicle with your child. The child HAS to be in the car. We have used this quite a bit, and it is a lifesaver.

Ones We have Not Yet Applied For

Bikes: here’s a comprehensive list from the Friendship Circle’s blog of places to turn to for an adaptive cycle. (note: scroll down – the formatting of their post is a little different, and it threw me off for a minute).

Bikes, Wheelchairs, Adaptive Equipment, and more: Variety’s “Freedom Program” funds a lot. Apply for help here.

Angel Flight: free air transportation for any legitimate, charitable, medically related need.

 

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Video from NORD

Brandi C

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.

 

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Little Lies Along the Way = Fear Amongst Children

Brandi C

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children

I have deep respect for nurses, nurse’s aides, child life specialists, and all the other “worker bees” in the hospital. They are fantastic and often under-appreciated.

Over the past several months, I have learned a lot from our experience with hospital visits and treatments. I understand the heart behind many common statements made by hospital staff to ease children’s fears. However, for children who spend a lot of time in the hospital, these statements don’t always help.

Things We Heard:

  • “Let’s give your arm a hug” (preparing to take blood pressure)

  • “Let’s clean off your germies” (preparing for an IV)

  • “It isn’t going to hurt. We are just going to put a straw in your hand/arm” (placing the IV)

  • “We are going to go downstairs, and they are going to give you a special medicine to help you take a nap” (putting under for sedation)

  • “Let’s tickle your armpit” (taking temperature)

  • “Is there a bunny rabbit in your ear?” (checking ear)

  • “Let’s see if you have a heart” (checking heartbeat)

  • “This is going to squeeze your arm just a little bit” (tourniquet for IV)

  • “This is going to sound like a rocket ship” (the numbing thing that causes anxiety)

  • “Let’s give your arm a drink” (flushing the IV)

  • “Let’s take some happy juice” (something to calm them before sedation)

  • “We are going to go downstairs, and you can take a nap while we take pictures in a giant donut” (MRI)

At first, these phrases made sense and helped to alleviate some fear. However, when a child begins associating these terms with hospital experiences, it can lead to deeper anxieties. Over time, the child began resisting simple things like hugs, straws, and even certain foods, which became tied to fear and hospital experiences.

While using these terms is helpful for minor procedures, it doesn’t work for children who regularly experience hospital visits. As a result, a shift in approach became necessary.

A Change in Approach:

During a recent hospital visit, I decided to take a different approach to prepare the child. Instead of using playful terms, we used accurate terminology to help normalize the situation. For instance, before an MRI and spinal tap, we used a doll to demonstrate the procedures. I explained the process thoroughly, from drawing veins to flushing the IV, so the child understood what was happening.

Surprisingly, the hospital staff was astonished at how well the child responded, how much they understood, and how calmly they handled the procedure. This approach helped take away the fear of the unknown and allowed the child to feel more in control of their own body.

This experience led to a scream-free hospital stay. The child was compliant, confident, and even polite. The choice to make the situation more transparent, rather than sugar-coating it, proved to be the most effective. It was a reminder that normalizing the experience and teaching about the process can help children face challenges with confidence.

 

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!

 

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Free Items for Children with Special Needs

Brandi C

Free Items for Children with Special NeedsFree Items for Children with Special Needs

Here is a list of Free Items for Children with Special Needs. Some of these are found on Meriah Nichols Website. There are more things listed there, as well.

Ones We Have Participated In

Songs of Love Foundation this one was AMAZING, and they are so wonderful! We just applied for another piece for another one of our children.

Weighted Blankets, Lap Pads, and Fidgets go above and beyond to accommodate you. We did give them a small donation because they made four blankets, six-lap pads, and several fidgets. Again, above and beyond.

Make a Wish, and if you go through MAW, you can also receive a scrapbook from Crops of Luv. Wow. MAW provided something I never thought I would be able to do. Not only did they take my HUGE family, but they added in H’sH’s biological brother and sister. Also, my sister and brother-in-law raise those kids. In total, 13 people were going without a blink of an eye! Crops of Luv, words cannot express my son’s joy at seeing your creativity with his Disney scrapbook.

Rare Bear Program. Such a cool thing. They ask what your child likes and try to create a bear with that fabric. It is very well made and very well-loved.

Free Cake from Icing Smiles. We have just applied to this, so I will keep you posted.

National Park Pass includes anyone in the vehicle with your child. The child HAS to be in the car. We have used this quite a bit, and it is a lifesaver.

Ones We have Not Yet Applied For

Bikes: here’s a comprehensive list from the Friendship Circle’s blog of places to turn to for an adaptive cycle. (note: scroll down – the formatting of their post is a little different, and it threw me off for a minute).

Bikes, Wheelchairs, Adaptive Equipment, and more: Variety’sVariety’s “Freedom Program” funds a lot. Check out the program here. Apply for help here.

iPads: Danny’s Wish awards iPads to kids with Autism. Applications are open from Sept-December 31st every year; iPads gave out in April.

Angel Flight: free air transportation for any legitimate, charitable, medically related need.