Tag: Opsclonus Myoclonus Syndrome

Adoption, Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Twelve Candles After Silence

barefootfaithjourney

Twelve Candles After Silence

Not Ready Yet: Twelve Candles After Silence

The room was supposed to be a doorway home.
Quiet, not heavy. Not sad.
Just full of the relief that comes
when five long days are finally over.

Bags packed.
Shoes by the door.
Hope sitting quietly on the edge of the bed
waiting to go home.

He was scared.
I remember that most.
Wide eyes searching my face
while I tried to sound calm enough
for both of us,
telling him every step
like calm could be borrowed.

I asked if they were qualified.
They said yes.
They said it was standard.

And then everything stopped being standard.

The line came out
and fear flooded his eyes so fast
it felt like watching a storm swallow the sun.

“Mommy help me.
Mommy save me.
I am on fire.
My heart is on fire.”

Over and over
like a prayer no one else heard.

His skin turned cold under my hands.
Pale. Fragile.
Clammy fingers.
Dark circles carving shadows beneath his eyes
like exhaustion had finally caught him.

I looked at the doctors
and they stood there, white as ghosts,
perplexed,
calling it behavior.

Behavior.

My hands knew better.

A body running out of strength
like he had already fought a thousand miles.
A child folding inward
while the room stood still.

That was the moment I knew
no one else was coming to save him.

I climbed onto the bed
because love does not wait for permission.
Held him as tight as fear would allow.
Kept explaining every second
even when my voice shook.

“Your room isn’t ready.
I’m not ready.
Please don’t leave me.
Wake up buddy.
Wake up.”

His body felt emptied out.
No strength left.
No fight left.
Just silence growing heavier in the air.

And then he went still.

Eyes rolling back.
Breath gone.
Silence louder than any machine.

I screamed his name into a room
that suddenly felt enormous and empty.
>I remember crying.
>I remember dissociating.
>I remember the sound of my own voice
echoing back at me like I was alone.

So much silence.

I pressed into his chest
hard enough to hurt
because pain was the only language left.

And he came back.

Later he told me what I could not see.

He said he was warm.
Bright.
Peaceful.

He said he saw me crying.
He said he was talking to me
telling me not to cry
but I couldn’t hear him.

I wish I had heard that.

A kind nurse.
Another doctor.
Movement finally replacing stillness.

A lung nicked.
Medicine where air should live.
Not life-threatening, they said,
but close enough to haunt every breath since.

We drove four hours toward someone who would listen.
The road long.
The night longer.
No talking.
Just silent tears
and a body driving home
while my mind stayed behind in that room.

And now—

Twelve years old.

Still fighting a body that refuses easy answers.
Still living with a diagnosis that does not care about fairness.
A nervous system writing its own rules.
A life many dismissed
like it was nothing.

But he was never nothing.

He is the child who fought to stay.
The child who heard his mother’s voice
through silence
and chose to come back.

And still
he wakes up.
Still
he fights.
Still
he breathes.

Twelve candles burning tonight
because love refused to be quiet
and a mother kept knocking
on a door
that heaven almost closed.

I do not say his name here,
but heaven knows it.
And I know it.

Twelve years after a room went silent,
he is still here.

And so am I.

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Beads of Courage – A Story of Strength and Recognition

Brandi C

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

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.

 

Adoption, Guest Blogger

Guest Blogger Big Daddy on Adoption

Brandi C

Guest Blogger Big Daddy on Adoption

Guest Blogger Big Daddy on Adoption

This post was originally written in 2017.

Guest Blogger Big Daddy on Adoption and his thoughts. After having three biological children, we decided to enter the realm of adoption. We believed our quiver wasn’t complete, so the decision was easy. What we didn’t realize is that adoption is HARD. It doesn’t matter what kind of adoption it is. Whether through foster care, international adoption, or one of your relatives, adoption is not for the faint of heart.

Adoption is Rewarding

 

However, adoption is very rewarding. Knowing that you have taken life into your home that otherwise was not wanted or was being mistreated, abused, or neglected is an amazing miracle. God intended for children to be raised by their parents, but circumstances sometimes do not allow that to happen. That’s why we took the plunge to care for the orphans.

Our Wild Ride to Adoption

 

As for our journey, it has been a wild ride. We have had a lot of good days and plenty of bad ones. But so far, we have stayed the course. We have tried to instill Godly values in our children while teaching them honesty, integrity, responsibility, and character. Sometimes we think that we are not making much progress, but honestly, we believe if we are consistent with the kids, they will turn out fine. Each child is different. We have learned how to parent each child with different behaviors and personalities.

 

At first, I was resistant to adoption, but after I met the little girl my sister-in-law and her husband adopted from the Philipines, my heart melted. I saw the love shown and given to her and believed I could do the same. So we decided to do it.

Our First Experience

 

Our first experience with fostering to adoption started pretty good other than the fact that these children were brought to us, and we knew nothing about them. It was hard, especially with Shay, because she was non-verbal at two years old. She never did warm up to me very much. Tay, on the other hand, was very happy and always smiling. Also, they were very sick, and we could not get them well.

 

Then the day that nearly broke us into the world of fostering/adoption happened. The kids were suddenly taken away from us by the Cabinet. We had no idea….one minute, we are raising these kids, and the next minute they are gone. We were told the reason but truly believed the social worker lied about us in a court hearing that we were not present at. I was furious, and it crushed my wife. To this day, she still has the scars of them being taken from us. We had to believe that the Lord had different plans for those sweet children and us.

Never Again?

 

At that time, we told ourselves we would not go through a horrible experience like we just had but decided to give it another go around. We started fostering D and G in the spring of 2007. At first, it was really good, but we learned quickly how many of these children in the child services system could be damaged. To find out the kids you just took into your home were previously abused is a tough pill to swallow.

 

Having to raise children during an investigation of abuse and ensuing court proceedings is not the way it should be. But the kids were safe, and we did our best to cope with the behaviors stemming from their past. We finally adopted them about two and a half years later. Since then, we’ve run the gamut of ups and downs with them. Some days are good, and some days are bad, but in the end, they are loved, and hopefully, they will be able to overcome the terrible start they had in life.

International Adoption

 

Our subsequent adoption was a foray into international adoption. My wife had always dreamed of adopting from the county of Ethiopia. After I met my new nephew from Ethiopia, my sister-in-law’s second adopted child. I was ready to go to Africa. The process was a lot of paperwork and a lot of money. (Not sure why it costs so much to adopt a child who has no home or no one else wants). Within a few months, we had a referral and got a picture of our son. It was amazing how we could love someone so much whom we had never met.

 

The anticipation was unbearable. But soon after that, we could travel to Africa and meet our son. It was an experience like none other. We met our son and spent three or four days with him. We went to court and were granted the adoption. The hardest part was leaving him there. But we were told that it should only be about eight weeks before we could return and bring him home. Little did we know then that eight weeks would turn into 14 months.

Huge Mistake Made by Home Study Agency

 

Our home study agency made a huge mistake, and the US government told us we did not make enough money to bring him home. How ridiculous is that? It’s a shame that money, or the lack thereof, keeps so many people from adopting children that need good homes. When we found this out, we desperately tried everything we could to get clearance from USCIS but were flat-out denied two months later. My wife was crushed beyond all belief. From December 2010 to about November 2011, she was just a shell of a person.

 

Yes, she lived and breathed, but that was about it. She was vacant. And there was nothing I could do about it. I believed that there was no way God would allow us to travel 7000 miles to meet a boy and tell him he would be our son, then him not ever come home. Not necessarily for our sake but for his. He was an innocent child growing up in an orphanage with 50 or 60 other children like him. But God made way for us to get our clearance to bring him home, and in December 2011, we brought J to his forever home. We were made whole.

Here We Go Again

 

After we brought J home, we thought our quiver was full. But God had other plans for our family. In November of 2015, we had an opportunity to take in our great-nephew, H. His mother, our niece, had been in trouble with the law and could not take care of him. H had been living with a man who believed he was the father. He had troubles of his own and agreed for us to keep H for a while. We decided to file for emergency custody of H mainly for his safety at the time. The man he was living with turned out not to be the biological father, and we were granted temporary custody of H.

His Biological Mom

 

His mother got into even more trouble later and was facing a lot of time in prison. She made a tough yet mature decision to terminate her rights and allow us to adopt H. I can’t imagine how hard that was for her. I am very proud of her for sacrificing for her son. H invigorated our family with joy. He has so much energy and is very sweet and funny. However, in June, he was diagnosed with an extremely rare neurological disorder called Opsoclonus Myoclonus Syndrome. He has been through a lot, which has been tough on him and us. But we take it one day at a time and trust in God for healing and comfort.

Adoption is Tough

 

So those reading this and considering adopting do not have preconceived notions of lollipops and rainbows. Adoption is challenging and not for the faint of heart. But the rewards are unending. Giving a child a home and stability is a beautiful thing. Whether they know it or not, children crave structure, discipline, and a sense of worth.

 

That’s the beauty of adoption.

 

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.