Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Beginnings: The End of One Chapter, the Start of Another

stay inspired. never stop creating. (5)

New beginnings.


They carry a quiet kind of hope—soft, steady, and full of promise. Today is the last day of June, and with it comes a shift. This is the final post I will write about our journey with Opsoclonus Myoclonus Syndrome (OMS). It’s not the end of the story, but it is the closing of a long and winding chapter—one that has shaped us in more ways than I can count.

Eight years ago, our lives were forever changed when my son was diagnosed with OMS. Everything I thought I knew about parenting, about faith, about strength—was redefined in those early days of chaos and uncertainty. We were thrown into a world of specialists, treatments, therapies, and questions with no easy answers. But through it all, one thing remained constant: God’s faithfulness.

There were moments I didn’t think I could keep going. Moments of fear so deep, it took my breath away. But my son—my precious warrior—kept fighting. And because he never gave up, neither did I.

Today, he is alive. That alone is a miracle and testimony to God’s mercy and power. He still has struggles, and we don’t know what his future holds. But we rest in this truth:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a future and a hope.”
—Jeremiah 29:11

We cling to that promise. God has a plan for my son—a plan far greater than anything we could imagine. And so we move forward with hope.

I pray that as you’ve read these posts, you’ve learned something new—not just about OMS, but about compassion. If you ever see a parent struggling with a child’s behavior, please pause before judging. You never know the battles being fought behind tired eyes and brave smiles. Offer grace. Show kindness. Pray for them.

I also pray you’ve seen my heart through this journey. God’s goodness broke and rebuilt my heart. A heart that never stopped hoping—even when the world said there was none.

“Let us hold unswervingly to the hope we profess, for He who promised is faithful.”
—Hebrews 10:23

My son is more than a diagnosis. He is a living, breathing miracle. A warrior. And one day, I believe his test will become a powerful TESTimony—pointing others straight to Jesus.

This is not the end. It’s just the beginning of something new. A new chapter filled with purpose, promise, and hope.

To God be the glory. Always.

💛 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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New Mercies Every Morning

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

With Every Joy, In Every Hope

With Every Joy, In Every Hope

This journey with OMS has brought me to my knees more times than I can count. It has stretched me, refined me, broken me open—and built something stronger in its place. However, With Every Joy, In Every Hope there is Jesus.

There have been days filled with fear. With doubt. With exhaustion that sank into my bones.
But there have also been days of joy.
Joy that surprised me. Joy that snuck in quietly and wrapped itself around the hardest moments.

And that’s what I’ve learned: joy and hope can live alongside pain.
They’re not emotions reserved for the easy days.
They are gifts from God, woven right into the messy middle of the story.

With every joy—in every smile, every step forward, every laugh that returned after weeks of silence—I saw God’s fingerprints.
With every hope—in every prayer whispered through tears, in every night I chose to believe again—I saw God’s faithfulness.

This journey hasn’t been linear. Healing rarely is.
There were setbacks, victories, and there were days I felt like giving up.
And then there were days when I couldn’t help but praise—because of the progress, because of the peace, because God had carried us one more step forward.

With every joy, in every hope, God was there.
Not one moment missed, not one tear wasted, and Not one prayer unheard.

And maybe you’re in a hard season of your own—maybe your story doesn’t look like mine, but your heart still needs to know:
Joy is still possible. Hope is still alive.
Not because of the outcome, but because of Who walks with you.

💛 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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Everything is Gonna be Okay

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Doctor’s Told Me There Was No Hope

When the Doctor's Told Me There Was No Hope

I will never forget the day a doctor told us, “There’s no hope.”
Not in those exact words, maybe—but close enough. The weight of it settled like a stone in my chest. My son—my precious, brave boy—was facing Opsoclonus Myoclonus Syndrome, and suddenly, it felt like the world was holding its breath. When the Doctor’s Told Me There Was No Hope, the Lord was whispering something different.

There is something soul-shaking about hearing someone in a white coat, someone trained to fix what’s broken, tell you that your child may not get better. That this could be your forever. That this is as good as it gets.

But here’s what I’ve learned:

Hope doesn’t come from doctors. It comes from the Lord.

Doctors are human. They do their best with what they know. But their knowledge is limited. Our God is not.

When the medical community stopped speaking hope, God kept whispering it. In every quiet moment, tear-stained prayer, and in every ounce of strength I saw in my son when he should’ve had none.

The world says, “Don’t get your hopes up.”
But I say: Get them up. Lift them high. Anchor them in Jesus.

Because even when the diagnosis is rare, the prognosis is grim, and the outcome is unknown—God is still the God of hope. He isn’t confined by statistics and He isn’t intimidated by symptoms. The Lord doesn’t operate by percentages.

We saw Him move. In ways medicine couldn’t explain, in tiny improvements that felt like miracles. Also, in strength returning where it had disappeared. In joy rising up in the middle of impossible days.

And no matter how long the road is, or how uncertain tomorrow looks, we keep walking with hope—not because we ignore reality, but because we know Who holds it.

So if you’ve heard those crushing words—“there’s no hope”—I want to gently, fiercely tell you:
That’s not true. There is always hope where God is.

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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Why Am I Feeling Anxious?

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Hold On to Hope

stay inspired. never stop creating. (2)

When my son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), the world shifted beneath our feet. It was one of those moments that divides life into before and after. Fear came crashing in, and the questions outnumbered the answers. The only phrase that permeated through my life was “Hold On to Hope.”

In the middle of that storm, Hebrews 10:23 became a lifeline:
“Let us hold unswervingly to the hope we profess, for He who promised is faithful.”

It didn’t say, “Hold on when it’s easy,” or “Hold on when everything makes sense.” It said, unswervingly. Without turning. Without hesitation. Without giving in to the fear or the doubt.

That kind of hope doesn’t come from our own strength—it comes from knowing the character of God. And I had to decide: do I believe He is faithful, even when I can’t see the outcome? Even when healing doesn’t look how I imagined? Even when the journey is long, hard, and uncertain?

The answer—again and again—was yes.

There were days I had to whisper it through tears. There were days when I could only breathe it. But I held on. And God held us. Through hospital stays, setbacks, victories, and the beautiful, miraculous moments in between—He was faithful.

If you’re walking through something hard right now, this is for you: Don’t let go. Don’t lose hope. The One who promised is still good. Still present. Still faithful. Hold unswervingly. You are not alone.

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

Even When There Was No Reason for Hope

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.

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Integrity

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Video from NORD

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

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

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.

 

Book Review

Take Back Your Life Part 5

Take Back Your Life Part 5

Take Back Your Life Part 5

Today is the last day! See, I told you I wouldn’t make it as long as the previous book review! So, here is Take Back Your Life Part 5. I have been on the struggle bus today. Sadly, I have not captured my thoughts, and my strongholds are in full force. I am so frustrated with so many things. Shall we move on?

Hope

“So what is hope? At its most basic level, to have hope is to believe that something good is going to happen. That help is on the way. That it’s not over yet. And that no matter how dark it seems, there’s going to be light at the end of the tunnel. Our hope is a living hope, because we have a living Lord.”

Hope. That word permeated throughout our entire (ongoing) journey with OMS. The word started as a prophecy by three people (none of whom know each other). Then, everywhere I turned, it was that word, thought, concept. Hope. Frankly, it irritated me. I didn’t see the hope at that time. My faith level was that of a mustard seed. At that time, I most definitely had blinders on my eyes.

Yet, here we are, reading and learning about hope again. Over time, I’ve learned how to love that word and accept it. I have it all over my house in some form or the other. Even a tattoo on my arm reminds me to have hope. Hope is what I survived on after the blinders were removed from my face. While they were on, however, the people I chose to surround me with held me up, and they hoped for me when I couldn’t.

“The wonderful thing about the anchor of the soul is that it, too, comes equipped with a mighty chain. Hope has a rope: The Holy Spirit. He is our great rope that cannot be frayed, the one who has lashed our hearts to heaven.”

Did You Take a Tone With Me?

My husband and children hate it when I say that phrase. It isn’t always what they say; it is the tone they use, the body language, and the facial expressions. Someone can say I love you with complete and utter hate in their eyes. You know you can’t always believe what comes from someone’s mouth. I think Jesus says our tongue is a double-edged sword.

“Experts estimate that a very small percentage of our communication occurs through the words themselves. The great majority of what we say each day involves what we do with our bodies, our facial expressions, and the tone with which we communicate.”

Levi Lusko says, “if Jesus is the Lord of your life, then he should be the Lord of your lips. Colossians 4:6 reminds us to ‘let every word you speak be drenched with grace.’ Grace is unmerited favor, by the way. Grace is not ever deserved.”

Uhm, I need to have a redo on my entire day. My words have dripped with irritation, frustration, anger, fear, and sadness. Why do I continue to do the things I do not want to do? To add insult to injury, he says, “your intentions don’t matter; your behavior does. No one can hear what you wanted to say; we hear only what you said. The impact you have on the world is what you’re accountable for. When you allow yourself to be provoked, you give up the one thing that is yours alone: control of yourself.”

I need to go back to bed.

Anger: Party of 1

“You might struggle with anger, but you are not an angry person. You might struggle with people, but that doesn’t make you not a people person. Your face can absolutely have an impact on those around you, for better or worse. Positive thinking is important. So is watching how you speak and minding your habits.”

We are at the end of this book. I didn’t squeeze all the goodness out of it because I was hoping you could go and buy it. Marinate on this book. Put it into practice. I pray that forgiveness is shown to me and that I can start over. In the middle of the day, have a massive do-over.

“So tie yourself to Jesus, and you’ll feel his power as you work out the life he breathed into you. Take off your grave clothes. And remember that when you are authentically your healed self and walk humbly as a follower of Jesus, you can live in confidence without fear, distraction, depression, anxiety, worry, regret, quarrels, addictions, darkness, selfishness, self-sabotage, narcissism, the held-hostage version of yourself you don’t want to be, or anything else that gets in your way and stunts your growth. Draw a line in the sand – a crimson line painted with the blood of Jesus – and decide that the cycle ends with you. Your children don’t have to inherit from you what you inherited from your parents. Fight this battle so they won’t have to.”

Powerful. Just keep swimming, friends. We, as believers, know what happens at the end of the book. We win.

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Why Am I Feeling Anxious?

 

Book Review

Take Back Your Life Part 4

Take Back Your Life Part 4

You Can’t Be a Victim and a Victor at the Same Time

“God is saying that impossible things can be done when you speak faith in the midst of the storm, though sometimes the impossible thing is you continuing to believe in him in the middle of it all, even when what you’re believing for doesn’t happen. He’s not saying you’re going to get every single thing you want if you just speak to it in an attitude of faith. Always, Jesus’ attitude is “Thy will be done, not mine.” Take Back Your Life Part 4

It is so hard to believe in the middle of it all. My faith was tiny during the most challenging part of our OMS journey. I felt defeated. The doctors were talking at me and not with me. Only one doctor in another state spoke with me and helped me understand everything I needed. Though her belief system was different than mine, she gave me hope. That hope restored and grew my faith exponentially.

“Jesus didn’t come to give us a blank check for any dream. But when hard days come, the way we speak in the midst of our crisis, in the midst of our difficulty, can cause something to happen that feels impossible. A mountain of discouragement can move and  mountain of ingrained negativity can move. A mountain of hopelessness can move. It happens when we do things like speaking words of faith in the midst of a chemotherapy treatment. Suddenly we have more to give and joy where there shouldn’t be any.”

In the midst of one of our journeys, the above statement happened. That one doctor, Kavita Thakkar from UPMC, gave us hope. In doing that, our mountain and perspective shifted in a way that occurred three years before meeting her. God speaks through any situation and any person. We have to listen. “God’s most important miracles can’t be seen with the naked eye.”

Feelings

My Lady always said, “no one can make you feel one way or the other. Your feelings are your decision to have or not have.” I miss her. Levi Lusko states that “You need to learn to feel your feelings. Lean into them. Diagnose them. And then do what is needed to move through them.” Do you know how hard that is to do when you have chosen to stuff your feelings most of your life?

He goes further to say (and I am paraphrasing here), “if you try to understand what is driving it, you can look to the Lord to fill the hole instead of ~the things~ of the world. You will discover that the ache you were going to silence with something on Disney+…was actually the voice of Jesus calling you to himself… The silencing of that discomfort by fast food or fast delivery from e-commerce brings the opposite – more punishment than reward.”

I do that, especially at night. Binge-watch things, play my bubble game, eat popcorn. Lately, I’ve been closing my eyes and listening to some praise and worship music. Listening to music creates a space where my feelings are feeling things. Honestly, I’m not sure what to think about that. It is not pleasant, but I know it is healing.

Decision-Making and Fear

“All I can tell you is that you must not let fear play a part in your decision-making. You can’t ignore fear, but you don’t have to let it control you. True bravery isn’t feeling no fear. It’s being afraid and moving forward anyway.”

Currently, I have a big decision to make. In my world, I need a step-by-step of what I need to do to get from point A to point B. In a turn of events, after ten years, I now have that step-by-step guide. Now, I’m ready to back out and not do it out of fear. What if I’m not good enough or what if I can’t pass the test? How about “What if I can’t find a job?” More questions are “What if I can’t find a supervisor or what if I screw someone up?”

I’m allowing fear to overtake logic and a calling. I know I’m called to do a sure thing. I’ve taken some vast steps to get to this point. Yet, I hit a brick wall when I got involved with someone who did not have my best interest in mind. Levi Lusko states, “not only is failure not a bad thing, but it is a necessary thing. The only way to get to victory is to be willing to make mistakes on the way there.” Choosing this Lady and believing her lies was a HUGE mistake. Then, OMS hit, and I had no choice but to care for my son. Most obstacles (except a supervisor and a job) are out of the way. I’m terrified.

Fear is affecting this decision. Completely. “God isn’t scared of what you’re scared of. But you don’t have to pretend like you’re not frightened. Naming your fear is part of getting through it. It’s also important to remember that Immanuel means “God with us.” Jesus is with you. You are never alone.” God states in Psalm 91:5, “You shall not be afraid of the terror by night.”

Stronghold

“A stronghold is an area in which you have become entrenched in believing something that isn’t true or in doing something you shouldn’t be doing. As a result, the Enemy has a heavily fortified position in your life. Simply put: it’s a constant pull in the wrong direction. These strongholds put a chokehold on the joy, growth, freedom, and strength you are meant to experience. They neutralize your effectiveness and lock you in a state of darkness and arrested development.”

I have many strongholds. Anger is fear and/or sadness. Tonight, there was an issue. I am beyond exhausted, and I have two choices. One choice was to sit here and dissociate. The second choice was to intervene. I don’t have enough energy to intervene. Logically, I can tell you what outcome will come if I just let my husband handle it (not allowing my stronghold to rule me), or I can intervene (and have my stronghold rear its ugly head). Tonight, I choose to dissociate.

How to demolish them:

  • Spot them.
  • Renounce the thinking or behavior and se3t your soul against it.
  • Paint the target so heaven can blast it with God’s supernatural power.
  • Let your squad in on what has been going on.
  • Vigilantly and diligently build something in place of the sin so it can never be rebuilt.

“Rise up and do exactly what the devil doesn’t want you to do. Refuse to go gently into the night. Don’t be taken without a fight…”

Tomorrow will be my last day of posting on this book. Powerful book.

 

Book Review

Take Back Your Life Part 3

Take Back Your Life Part 3

Take Back Your Life Part 3

Part of me wants to rush through this book, so I don’t bore people. The other part of me wants to stop and absorb everything that stands out. Frankly, it is pretty therapeutic for me. We shall see how far I get. At the end of each section, there are very thought-provoking questions. You can thank me now for not posting/answering! Take Back Your Life Part 3

You Always Have a Choice

Levi Lusko states that “Satan can’t make you do anything. You always have a choice. In that way, you are more dangerous to yourself than the devil is. He has to check with God before he can wreak havoc in your life, but you can do great damage to your calling without getting approval from anyone.”

I would have never thought that. In my mind, God either allows or ordains the things that happen in your life. He can change it instantly because He is God, and He can do that. Yet, free will comes to play, and though He can override free will, He chooses not to. If He did that, we wouldn’t cry out to Him or need a God to come to our rescue. Maybe I’m wrong.

“Remember, God doesn’t cause bad things to happen, but he is sovereign and nothing happens outside his permission. The devil is the one ultimately responsible for evil.”

I know God is the only omnipotent, omnipresent, omniscient God. He can be at all places at all times, at the same time. Satan can’t do that. He can only be at one place at any given time, but he does have an army that he can send out that seeks to kill, steal, and destroy you.

Finding Beauty from Ashes

One thing that I told my clients, often, was that there was a purpose in their pain. Whether it was allowed or ordained, God would use whatever situation they are currently going through to help another person find beauty from their ashes.

Levi Lusko agrees to say, “But be of good cheer. There is a connection between the strength of our pain and the volume of our voices. The more we hurt, the louder we become. The things God deposits in your spirit amid suffering are the same things that someday others will desperately need. I dare you to look at the hardships you’re facing and believe that, through them, there are people you are meant to reach.”

I wholeheartedly agree with that statement. Amid pain, suffering, uncertainty, and trials, we can’t see the forest for the trees. Yet, God has a helicopter view. He sees the beginning to the end. In those moments, He knows that there will be someone, somewhere, that will walk through the same thing you are walking through.

Who better to minister with someone than someone with a child who has instantly been stricken with a rare disease? Especially when that someone is five years on the other side. Is there someone better to minister to a wife who finds out her husband has an addiction that he has been hiding for most of her marriage? What about the mom who has a prodigal child? When you have a wayward child, you have lived it and can not only sympathize but empathize with them.

“None of your tears have fallen to the ground unseen.” God states in His Word, “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalm 56:8

Power in the Pain

In Take Back Your Life, Levi Lusko states, “I always want you to believe in Jesus’ name that there will come a day when the devil will regret ever asking God’s permission to give you your trials because you will end up twice as blessed as you started out. God’s up to something! He’s turning your mess into a message and He’s turning your pain into a platform. Remember, He’s turning your trial into a testimony and He’s turning the trash that has come into your life into triumph!”

Beauty from ashes! You can declare war and you can have that freedom that only God can give you. Also, you don’t have to succumb to depression, anxiety, or fear. Admit where you struggle, become a student of the problem, and be your expert. When you do that, that can eliminate fear. Stand up for yourself and for what is right. You don’t have to lay down and take it, but you must release it to the One who can fight your battles! You are not your darkness, and it cannot overtake you as a child of the King.

Begin in Your Mind

That is where you can shut off the darkness. “My friend Kevin Gerald likes to say, ‘Thoughts are like trains: they take you somewhere.’ When a train of thought shows up, don’t just get on! Slow down before you board it to make sure it’s heading in the right direction. Ask each one:  Where are you taking me? Are we headed to Lovelyville, Virtuetown, Good Report Station? Boomsauce! Wait, this train is going to Jealousy, USA? Rage City? Gossip Central? I’m sorry, I’m just not comfortable going where you are headed.”  

That is a fantastic analogy. I can catch myself when fixing to go off the rails into a tangent. There are times when I can physically hear a voice that says STOP. SHUT UP. STOP SPEAKING. WALK AWAY. 98% of the time, I ignore it, and then crap comes flying out my mouth. You can’t take back what you say because the damage has already been done.

Levi Lusko goes on to outline a few more places that may be harder to spot the trains that are coming:

  • Being suspicious of people’s motives
  • Wondering what went wrong
  • Feeling guilty
  • Doubting and questioning God
  • Worrying
  • Obsessing about why you weren’t invited
  • Fearing someone you love being harmed
  • Secretly being happy when something wrong happens to someone you don’t like *ouch*
  • Stressing about your future
  • Stewing over something that was done to you *double ouch*

You Have a Choice

“You can take it captive. Detain it. Don’t let it into your mind for a minute. Show it no mercy. Give it no quarter. Send that thought to the pit of despair so the six-fingered man and the albino can torture it. Don’t be kind. Remember, this is war.”

Replace the thought with Scripture and what God says about you! You don’t have to choose to live like this. You can overcome. Choose life and speak life into yourself instead of the death sentence that Satan brings to the table.

“It’s time to stop letting life happen to you and start happening to your life. When you decide to stare the things in the face that are holding you back, strength will bubble up inside your chest.” So many gems in this book. There are so many powerful statements like this that make you stop and ponder. I will be 50 this year. I have let life happen to me for almost 50 years. Time is soon changing, and I will start “happening” in my life!

A Bad Mood Exists Only in Your Mind

It is never too late to change your attitude, mindset, or course of action for your life. You don’t have to wait until tomorrow. You can make the change halfway through the day. If it is evening, change your perspective. New mercies can happen at any time of the day. Give yourself grace. Go to the Word, put on praise and worship music, dance in your underwear, say you are sorry, or go for a walk. Be the change you want to see made! Remember, “your words and actions both begin as thoughts.” Take your thoughts captive! “You can change how you feel by changing how you think.”

Cliff and Ms. Jan

One of the first things they EVER said to me (amid a chaotic moment with my children at church) was quoting 1 Thessalonians 5:16-18. It says, “Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.” Levi Lusko is quick to point out some facts relating to this verse. “He didn’t say to be thankful FOR everything. You aren’t supposed to be thankful for death or divorce, or unemployment. Those things aren’t good. You can, however, be thankful IN those things – or in any other thing hell can throw at you – because God has a plan to produce good from what you are facing.”

Ponder that. Tomorrow we talk about miracles!

 

Book Review

Take Back Your Life by Levi Lusko Part 2

Take Back Your Life by Levi Lusko Part 2

Take Back Your Life by Levi Lusko Part 2

We are camping out in the next part of this book, Take Back Your Life. I promise this little series won’t be as long as my last one. Taking apart certain aspects of a book helps me gain a perspective I might not have. So, these book reviews are my online journal to continue my faith journey. Take Back Your Life by Levi Lusko Part 2.

Here’s Some Truth For You

Levi Lusko provides these truths.

  • You were made in the image of God.

“That’s right, made. You are not smart mud or a monkey wearing pants. God made you. Fearfully, wonderfully, he knit you together inside your mother. You’re no accident.” I am NO ACCIDENT. I was not an “oops.” It was not a mistake. I was meant to be on this earth and given to the people, my parents, who created me. It might have been a surprise, not a well-received one, but I’m not mistaken. God wanted me from before He created the earth. He knew about me. He made me in the image of His Son.

  • You have autonomy.

“Like God, you have a personality. A sense of humor. You can laugh and sing, make love and create, dream and destroy. You have feelings and can be hurt. When things don’t go your way, you get sad and can be grieved, just like God. This might surprise you, but God doesn’t always get what he wants and neither do we.” Be bigger. Be loud. Do not shrink down and become invisible! You are not less than. You are the child of the King. Straighten that crown!

  • You are immortal.

“The question is not whether you will live forever but where. Four hundred years from now, and four thousand years after that, you will still exist. You will still be alive, and you will still be you.” Wow. Just wow.

  • You were expensive.

“Think about what God was willing to spend to redeem you and give you hope when sin and death had their suffocating stranglehold on your life. You weren’t purchased with any common currency, like gold or silver, but with the precious blood of Jesus. His veins were opened, and then hanging on two pieces of wood on top of a hill shaped like a skull, the Son of God died to pay the price for every wrong thing you have done. Sin is a capital crime, so he died to set you free.” Humbling. This concept is almost incomprehensible. I can’t say I would kill my son for anyone ever.

  • You have power.

“As a child of God, you have been entrusted with the Holy Spirit. The same Holy Spirit that raised Jesus from the dead now lives in your heart and is ready and waiting to be activated.”

  • You are gifted.

“You have specific connections and opportunities that I haven’t been given. You’re a genius. There are people you get to talk to every day whom it would take a miracle for a preacher to get in front of. But for you it’s effortless as sitting in second period or clocking in for an afternoon shift at your job.”

I can say that I wholeheartedly agree with this, but not everyone does. I learned to blend. Do not stand out, do not attract those that look different from me, don’t go to bars (which I don’t, but that is for another reason), watch who you talk to because you just might be seen by a church person, and that could mean disaster for you. Never have I ever agreed with that statement. I did, for years, but not anymore. I’m a girl with pink and purple hair. As small as I want to be, I am loud and look different. Those people march to the beat of their drums. Well, those are my people. I don’t care what anyone else thinks. There are people that I can reach that might seem “less than” to other “Christians.”

  • You have an epic mission.

“The orders from your commanding officer are pretty clear: go into all the world and preach the gospel to every creature.

Be Bigger, Unapologetic, Unique.

“I hope you are starting to get a sense of how incredibly, wildly unordinary you are. You, my friend, were put on this earth to make waves, disrupt the status quo, and kick over some stinking applecarts. you have everything you need to move forward and live an extraordinary life.”

Preach it, Levi!

From Mundane to Purposeful

“It’s always going to be harder to do the right thing than it is to do the wrong thing. That’s why checking your email a thousand times will always be easier than actually working on something. Also, that’s why scanning your Instagram feed is always going to be easier than actually doing something meaningful. That’s why starting a project, with the blank screen staring back at you, is so hard. But here’s the thing. The harder you work, the better you get at getting over that hump and starting, and the harder it is to surrender.”

From mundane to purposeful is the commitment we need to have for Christ. Delete your social media apps off your phone. You will find that it very well might empower you. Carry a book around, place a small Bible in your car for wait times, and have a playlist of praise and worship music on your phone. Listen to a podcast that uplift and teach you. Fill your mind with the things above, and you will find that your perspective will change for the better.

How You Speak

“How you speak determines how you feel. It’s time to stop listening to your fear! Instead, put some faith in the air. Your speech can create, tear down, build, heal, or hurt. You will feel how you speak and find what you ask. Your words can unlock a life you love or one you loathe.”

I can say; lately, I have been speaking negatively about everything. A thousand and five things in my house need to be accomplished. I clean, and 5 minutes later, it is a disaster. My relationships are not great right now. When a friend calls, my first statement is running down the list of things that are all wrong. I don’t want to lie, but I also don’t want to focus on the negative, and that is what I do. I have got to work on that. It is destroying the people I love around me and me.

Mask of Shame

In Taking Back Your Life, Levi Lusko says, “Is the you you’re showing people really you? Or does your image feel a little disquised? A little distorted? A little masklike? God tells us who we really are but it can be hard to absorb, especially when fears hit. So we slap on a mask as a defense to hide the fears that we aren’t enough.”

The mask of shame speaks to me on every level. I am famous for wearing the appropriate mask for the proper time. I do this out of fear that my true self is too much for some people. Honestly, it is a realized fear because people tell me I’m not good enough. I have too many tattoos, and my hair needs to be a standard color; why do I not wear shoes often? I parent differently than other people parent. I’m not submissive enough, not smart enough, etc. The bad stuff is more accessible to believe than the good stuff. How sad is that?

The Different Types of Masks

I won’t go into detail about what Levi Lusko says. You will get the idea as you read these.

  • The superiority mask.
  • The smiley-face mask.
  • The “Fifty Shades of Grey” mask.
  • The funny guy/gal mask.
  • The “I’m so holy” mask.
  • The clone wars mask.
  • The zombie mask.
  • The gold-plated, diamond-encrusted mask

“It’s ironic, we put on masks in hopes of finding love and acceptance, but people cat love someone they don’t know. What they’re falling in love with isn’t you; it’s your maks, a superficial version of you, a costume you’ve carefully curated. What you wear to obtain, you must wear to retain.”

He further says that we need to learn our true identity in Christ. He encourages you to take your masks off, remember who God says you are, accept who God says you are, and live in complete freedom.

What Does Freedom Look Like

What does this word “freedom” look like when you drop the facade and become the you that God created you to be? I wish I could say I was living that, but I’m not. Honestly, I’m a constant work in progress.

“Freedom looks like vulnerability.” Vulnerability is being capable of being physically or emotionally wounded – open attack or damage. Being vulnerable takes an incredible amount of strength. I encourage you to see the TED Talk by Brene Brown on this subject. Levi Lusko states, “the only way to victory is by going through vulnerability.”

Life Lesson Number 101

I read this book a couple of months ago. I’m rereading as I process through each chapter and rereading what I have highlighted. I aim to apply things to my life and get stuff on notecards to carry around. Silly sounding, I know. Yet, it works for me.

Currently, my husband and I are at a crossroads. Hurts have been expressed. Saying things out of frustration leads to hurt feelings and pain. The desire to give up is at an all-time high. As I’m going through this book, this is what I previously highlighted: “In marriage, being “naked and unashamed” lets down all the walls, telling your fears, telling your desires, telling your dreams, telling how you feel when you don’t measure up. People can say, ‘what you said hurt my feelings. I’m not going to lash out in anger and write an angry email to make you feel small because you made me feel small. Honestly, I’m going to tell you it hurt me. I’m going to try to get on with it.’ “

I need to pause and go and talk to my husband. Marriage is hard; even after almost 30 years, it is hard.

I will leave this parting quote that was written on my whiteboard. “If God didn’t give it, you don’t have to keep it. This is your permission slip to let that go.” Part 3 is coming soon.

Book Review

Take Back Your Life by Levi Lusko Part 1

Take Back Your Life by Levi Lusko Part 1

Take Back Your Life by Levi Lusko – Part 1

Trigger Warning:

This book frequently references the heartbreaking loss of Levi Lusko’s young daughter, Lenya. While it doesn’t go into graphic detail, the topic is mentioned often.

How I Read Books

Take Back Your Life is designed as a 40-day interactive journey to help you think right so you can live right. However, if I tried to read just one chapter a day, I’d never finish! Instead, I prefer to read the entire book quickly, usually in a day or so. Then, I go back and highlight the parts that stand out to me. That way, when I revisit the book, I can focus on those key takeaways rather than rereading everything.

For those who want to know my reading process—it’s a bit unconventional. I start with the introduction, then jump straight to the last chapter. From there, I read the ending notes and acknowledgments before finally circling back to chapter one. I realize this might seem odd, but it’s how I’ve always read books. Of course, you should read in whatever way works best for you!

Ants vs. Mosquitoes: An Analogy That Sticks

Levi Lusko opens the book with an unusual analogy. When I reread my highlighted passages, his words hit me hard:

“Ants… public enemy number one… Ants do not carry yellow fever or malaria… Mosquitoes do… Mosquitoes love water. Mosquitoes were laying their larva and thriving. The ant moats—the very things people thought were keeping them safe—were actually costing them their lives. I’ve made the mistake of doing the right thing the wrong way. I fought the ants but fostered the mosquitoes. By following my feelings, I became trapped in moods that should not have had a hold on me. By failing to take my thoughts captive, I allowed anxiety to have a seat at the table reserved only for God and paid for with the blood of His Son. Leave the ants alone. It’s time to swat some mosquitoes.”

Wow. That needs to go on a notecard: Ants vs. Mosquitoes.

This analogy might seem like a strange way to start Take Back Your Life, but it’s unforgettable. It forces us to reflect on whether we’re fighting the wrong battles while allowing the real threats to thrive.

Lusko also discusses idols, explaining that they aren’t necessarily bad things. Instead, he says:

“They are good things that are treated as ultimate things.”

That statement makes me pause. What are my “ultimate” things? What am I prioritizing in a way that might be unhealthy? I need to sit with that thought.

Feelings vs. Faith

Romans 7:15 says:

“I don’t really understand myself, for I want to do what is right, but I don’t do it. Instead, I do what I hate.”

Feelings are fleeting. We can’t base our lives on emotions that shift from moment to moment. Lusko compares this to vision, explaining:

“Looks can be deceiving. We can look at something but not see what’s there. That means we cannot trust what we see with the naked eye. You can’t trust what you see or the decisions you make based on that. You need more.”

We’re quick to judge, decide, and react based on what we see. But what if what we see isn’t the full story?

Take a child who has experienced trauma and neglect. Imagine a parent walks in to find them hiding in the kitchen, stuffing food into their shirt—even though they just ate a huge meal.

To a parent without experience in trauma, this looks like stealing, lying, and disobedience. Their reaction?

“Go to your room. No movie. No dessert. Why did you lie? Why didn’t you just ask?”

But through the lens of trauma-informed parenting, the picture shifts. This child isn’t stealing out of greed—they’re acting out of fear and survival instincts. Their brain remembers the hunger and neglect they once endured.

As parents, our feelings in these moments might be anger or frustration. But Lusko reminds us to see what’s unseen. We need a “night-vision telescope called faith.”

“You’re going to see potential. You’re going to see they’re destined for impact. They were made in the image of God. There is amazing potential packed inside of them.”

That’s an incredibly hard concept to grasp in the heat of frustration. When we’re dealing with the same issue for the hundredth time, our first thought isn’t always God is working this for our good. But faith calls us to look beyond what’s visible.

Your Story Now Is Not the End of Your Story

Lusko writes:

“Through faith, eternity becomes visible. When you operate in faith, you know that what you see is not the end of the story. You may not be happy with your story right now. You may be disappointed or grieving or bored, or maybe you’ve forgotten you’re living a story at all. But you are. Uncover what has been hidden in plain sight. When you see the invisible, you can do the impossible.”

Right now, many parents see brokenness—the things that still need fixing, the progress yet to be made. It’s hard to appreciate what has improved when there’s still so much to do. But when we look through the lens of faith, we see beyond the immediate struggles.

The Battlefield of the Mind

Lusko says:

“Before we can do the great things we’re called to do out there, we must get things squared away on the inside. I’m talking about the war within.”

This hits home. The battlefield of the mind is real. Joyce Meyer even wrote an entire book and Bible study on this topic.

As someone passionate about ending the stigma around mental illness, I believe we need to have more compassion, love, and encouragement for those struggling.

People often tell me to “capture my thoughts”, but sometimes my thoughts are already speeding 200 mph down the track before I even have a chance to catch them.

My self-image is a constant battle. When I look in the mirror, I see flaws—wrinkles, weight, moles, personality quirks, behaviors. I instinctively make myself small, hoping to avoid attention. It’s exhausting.

But Lusko reminds us:

“Jesus said, the message of the gospel isn’t try; it’s trust. You don’t have to carry the weight of what you can do for me; just stand on the strength of what I have done for you. Once you’re under that umbrella called grace, how God views you—your identity—doesn’t change day to day with your behavior or with your activity.”

And this:

“What God says about you? You are loved. You are chosen. You are called. You are equipped.”

No matter how I feel—on my best day or my worst—those truths remain.

Honestly, those words—Loved. Called. Chosen. Equipped.—might just find a permanent place on my body. I already have “perseverance, survivor, warrior” tattooed in Amharic. This feels like the next step.

Because I need those reminders. Every. Single. Day.


Final Thoughts

Take Back Your Life is an incredibly powerful read. Whether you’re struggling with fear, doubt, mental battles, or past trauma, Lusko challenges you to shift your perspective—to stop swatting at ants and start taking down mosquitoes.

I’d love to hear your thoughts! Have you read this book? What parts stood out to you? Let’s discuss.

Related Posts

Why Am I Feeling Anxious?

 

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Let Us Marinate

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!