Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Beads of Courage – A Story of Strength and Recognition

Beads of Courage – A Story of Strength and Recognition

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

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

  • Cancer and blood disorders

  • Cardiac conditions

  • Burn injuries

  • Neonatal ICU families

  • Chronic illnesses

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

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

Until recently.

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

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

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

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

Reach Out

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

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

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

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

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Calm Breaks

When the Calm Breaks

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

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

Something wasn’t right.


Blink, and Everything Changes

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

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

But then I blinked again… and I saw it.

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

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


The Mama Who Doesn’t Panic

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

I told them that.

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

They didn’t.

Not even close.

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


Surrounded, But Alone

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

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

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

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


The Student Who Changed Everything

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

However, he didn’t stop there.

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


The Words That Broke Me

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

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

That conversation broke me.

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

I let it out.

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

So I did.

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

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


A Moment—and Then Joy

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

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

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

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

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

I told them that God would be glorified through this.

And the room changed.

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

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

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

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

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

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

 

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