Tag: childhood illness

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Make A Wish and Give Kids The World

Brandi C

Make A Wish and Give Kids The World

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

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

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

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

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

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

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

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

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

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

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

A Father’s Faith

Brandi C

A Father’s Faith

A Father’s Faith: Holding the Fort While My Son Fought to Walk Again

In A Father’s Faith, this is something my husband has written documenting those early days of H’s illness.

We struggled for many weeks after H got sick. Between hospital stays, doctor visits, and treatments, we didn’t know if we were coming or going. At home, we had six other kids, so my wife bore the brunt of the medical responsibilities. She was virtually alone with Hunter in the hospital for many weeks. I had to stay home with the other six and hold down the fort.

It was a heavy burden for my wife, but we did what we had to do to provide the best care for H.

When he was home, he couldn’t dress himself, feed himself, and eventually, he couldn’t walk at all. He was in a wheelchair for several months. H had to endure all kinds of medications, hospital stays, and treatments. Our family struggled for a very long time after he got sick.

Eventually, we took him to a place in St. Augustine, FL—and a miracle happened. Doctors administered an intensive three-day therapy, and shortly afterward, he walked for the first time in several months. We rejoiced at the miracle God performed!

He gradually began walking again and regained his speech. However, he still had tremors in his arms and hands, but he was 1000% better than before. He still experiences those tremors and struggles with fine motor skills, but he has learned to adapt.

Today, H lives a fairly normal life. That doesn’t mean he has fully healed or stopped struggling. But all in all, I don’t think we would change a thing. Sure, our family dynamic changed dramatically when he got sick.

But the way I see it, if H hadn’t come to live with us, I’m not sure where he’d be today. So I believe everything happened exactly as it was supposed to. We thank God that He has healed H to the state of health he’s in now. H is truly a walking miracle of God.

Even though things have turned out mostly positive, the journey has been rough.

In the beginning, I felt helpless. Helpless that I couldn’t fix what was wrong. When H was in the hospital and my wife was alone with him, I knew I should have been there too—but I couldn’t be, because we had six other children to take care of. I felt like I had abandoned them, even though I didn’t really have a choice. Realistically, it was what had to happen—but that didn’t change the feelings or the emotions.

I felt like I wasn’t holding up my end of the parenting and decision-making with H, because I couldn’t be there. And then I started to question my faith.

Why was this happening and why us?
Honestly, why were we being separated like this?
And why was this happening to an innocent little boy?

I had to dig deep and remind myself that all things work together for good and for the glory of God. But the feelings of inadequacy were still there.

So I went to the hospital when I could. I took H to some of his treatments after he was released from the hospital. I went to as many doctor appointments as I could.

Today, his condition has stabilized, and we spend far less time in hospitals or with doctors. But we always remember when we were separated—and how it made us feel.

God saw us through the bad so we could come out on the other side and see His glory.

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

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

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

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

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

“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

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.

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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.

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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.

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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!