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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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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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Prophecy and The Call

The Prophecy and The Call

The Prophecy and The Call

In December, we found ourselves at church, preparing for worship. After several months of church hunting, we had settled on one that we had initially been hesitant to visit. We knew the pastor and his wife, along with a few families, but we hadn’t been attending for long. It felt different from the churches we were used to. What we weren’t prepared for were the The Prophecy and The Call.

People Watching

Before the service began, the pastor called up a man to give a “word” to some members of the congregation. We had learned that this practice was somewhat common, but it was still unusual for our family. We sat, watching this man pace in front of the congregation.

I’m naturally a people-watcher, and one thing that caught my attention was that the man never opened his eyes as he paced and spoke. He kept touching the inside of his hands, and it was clear that he felt uncomfortable but was determined to be obedient. He shared that he had received a word from the Lord and wanted to make sure it wasn’t just his own thoughts. Through sleepless nights, he confirmed it was from God, and he knew he had to obey.

The Word

The man said that he had a word for someone in the congregation. As he continued pacing, I felt a strange shift in the atmosphere. When he stopped directly in front of Big Daddy, I felt like the air was sucked out of the room. He asked Big Daddy to stand up, and I looked to the altar. Our pastor smiled at me and gave a reassuring nod, signaling that everything was okay.

The Man

The man, whom we had never met before, told Big Daddy to hold onto his hand. Big Daddy is not a small man—his hands are enormous, so when he stood, he commanded attention. The man then said, “Hold on. Hold on tight to the rope and do not let go. Trust and hold on tight.” I felt a wave of energy flow through me, and tears streamed down my face. I don’t often cry, but in that moment, I knew we were about to embark on something challenging.

The Beginning of 2017

As the year started, life seemed to spiral. My father had quadruple bypass surgery. Then, my niece was sentenced to prison, and my nephew was close behind her. My daughter went to military school due to behavioral issues, and we faced a devastating family situation involving another baby. Add onto that, my oldest daughter called off her engagement, lost her job, and we were fighting insurance companies over my son’s surgery. On top of all that, my Lady got sick. The weight of it all felt unbearable, but the reminder to “hold on” stayed with us.

Even More Challenges

Big Daddy and I worked hard to navigate a difficult family situation. We did everything we could, but ultimately, it was out of our hands. I confided in a friend, and she told me to “hold onto hope.” She also shared that the Hebrew meaning of “hope” is “rope,” so we should hold onto the rope. I paused, texted her back, and asked who had told her that. She said it was a word from the Lord for me. I asked if she knew the man from church who had said the same thing, and she didn’t. That was the second time we had heard the message to “hold on.”

The Call

Then, on Tuesday morning, June 6, 2017, my sister called me. She rarely calls on a Tuesday, so I knew something was up. When I asked if everything was okay, she told me she had received an odd text from a former neighbor—a woman she used to walk with. This woman said that the Lord had placed my name on her heart and that she was praying for me. I had never met this woman, nor had I ever spoken to her, and I found it unsettling. My sister urged me to take it as a blessing, but I couldn’t shake the feeling that something was about to happen. It was about 4:30 pm, that afternoon, that we knew something was wrong.

Daddy’s Love

After my child became sick, I spent almost two weeks in the hospital with him. I was exhausted, overwhelmed, and emotionally drained. The doctors had told me a thousand things, none of which were good. One day, my sister—H’s “Mamaw”—came to give me a break. She handed me a gift from my father—a flat pillow, my grandmother’s quilt, and a message from my dad. That gift, along with the constant reminders to “hold on,” has stayed with me. It reminds me that both my heavenly Father and my earthly father love me and that everything will be okay.

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

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

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

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

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Facing Fear God is Bigger

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Facing Fear: Remember, God Is Bigger

What is your biggest fear right now? Maybe it’s the fear of failure, rejection, the unknown, or something deeply personal that keeps you awake at night. Fear has a way of creeping in, whispering lies that you are not strong enough, not capable enough, not enough. But here’s the truth: God is bigger than your fear.

Fear thrives in isolation. It grows louder when we try to face it alone. But you weren’t meant to carry it by yourself. Seek help. Talk to someone you trust—a friend, a pastor, a therapist. There is strength in admitting that you need support, and there is no shame in reaching out.

One of the best ways to overcome fear is to confront it with truth. What does God say about you? He says you are loved (Romans 8:38-39). You are chosen (1 Peter 2:9). You are not alone (Deuteronomy 31:6). When fear tells you that you can’t, remind yourself that God can.

Pray. Surrender your fear to Him, even if you have to do it over and over again. Fear loses its grip when we trust God’s plan more than our own anxieties.

Take action, even when you’re scared. Fear will always try to keep you stuck, but faith moves forward. One step at a time, you will find that what once felt impossible becomes manageable.

Whatever you are facing, God is bigger. You don’t have to have all the answers, and you don’t have to be fearless—you just have to trust the One who holds it all in His hands.

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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Circle of Hope Counseling Services, Faith Journey

Inspiration of the Day Mark 5:36

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Faith Over Fear: Learning to Trust in God

The inspiration of the day is found in Mark 5:36, which says, “But Jesus overheard them and said to Jairus, ‘Don’t be afraid. Just have faith.'” Faith, according to Webster’s Dictionary, is defined as “belief and trust in and loyalty to God,” “firm belief in something for which there is no proof,” and “complete trust.”

Trust is something I’ve always struggled with—it’s no secret to those who know me well. There are reasons for that, but I am a constant work in progress, learning not only how to trust but who to trust. One thing I know for certain is that God is someone I can lean into fully, without hesitation or fear.

Do I always do that?

Nope. I sure don’t—not all the time. But I am learning. When challenges arise, I remind myself, The Lord is putting this in front of me, not to hurt me, but to give me an opportunity to trust in Him because He has my back. I will, quite literally, repeat this to myself until the issue is resolved or until I find peace. And you know what? It helps. It really does.

My hope and prayer for those reading this is that you can learn to release fear, have faith, and trust God completely. As His children, we are sealed and held securely in the right hand of Jesus. I imagine myself sitting in His palm, His hands clasped around me, and then His hand resting in the palm of God. Nothing can take me away from Him. We are safe. He has us, and He already has the perfect provision in mind for whatever we are facing.

So today, let’s choose faith over fear. Let’s trust the One who holds the universe—and us—in His hands.

💛 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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What Does Impossible Really Mean

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What Does Impossible Really Mean

I stumbled on this quote by the great actress Audrey Hepburn and it reminded me of Luke 1:37 that says “For nothing will be impossible with God.” As the word IMPOSSIBLE is broken down, she says it really say I’m Possible. However, we can do nothing without the salvation that only Jesus has provided for us.

Friends, He loves you so much that He sent His Son to die on a cross for YOUR sins. If you were the only person, on Earth, God still would have sent His Son for YOU. He loves you so much that He wants you to answer that knock on your heart door, open it up, admit you are a sinner and that you need forgiveness and for Jesus to reign in your life.

Then, my friends, NOTHING is impossible. He makes it all possible. The sky is the limit and His gifts are freely given to you, as well as, His forgiveness for when we screw up. Even with Jesus in your heart, you will have bad days. You will struggle with mental health, you will be angry, you will sin and do stupid things. Here is the good news, all you have to do is repent and turn to Him and ask Him to forgive you and help you.

Grace. Mercy. Love. Forgiveness. This is what God freely gives us and asks that we give to others, though it can be super hard. Stay in the Word, find a church of like minded believers, pray so you can form that relationship with Him. It is so worth it. God is good all the time and all the time He is good. He will never leave you…not even for a minute.

💛 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

Believe in Yourself

Believe in Yourself

Believe in Yourself

Believe in Yourself. I am the ultimate optimist when it comes to the lives of others. I can look into the brokenness of others and I can see the beauty of their future. However, I am the ultimate pessimist when it comes to me and my life. I am constantly waiting for the other shoe to drop. It isn’t a great trait and it is one that I’m working on because of the Truths that the Lord has spoken over me. Jeremiah 29:11 states “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

I’ve always been someone who can see potential in others, but when it comes to myself, I struggle with believing in my own worth. It’s a difficult place to be, especially when you’re waiting for something to go wrong or anticipating failure, but I know I am not alone in this feeling. A lot of us have this tendency to focus on the negative, to dwell on the things we don’t do right or the mistakes we’ve made. But the truth is, we are not defined by our failures. We are defined by the promises of God.

Jeremiah 29:11 reminds me that God has good plans for me. He has a future for me that is full of hope. And this isn’t just a truth for others—it’s a truth for me, too. I can take comfort in knowing that He has a purpose for my life and that His plans are always for my good, even when I can’t see the whole picture.

💛 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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The Power of Small Breaks

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!

 

Faith Journey

What I am and Why God Version

What I am and Why God Version

What I am and Why God Version

It is easy to accept and own a person’s free-will version of themselves. The bad stuff is always easier to believe. What is difficult for most people is the Truth, as believers, as to what the Lord says about us in His Word. So, after yesterday, here is the Truth about What I am and Why God Version.

I believe I am going to do these verses in the Message. That is not my favorite version, but it does say things in plain English, and you certainly don’t question the meaning. Other versions can be harder to understand (for me). Ben Malcolmson compiled this list.

Beloved

“met God out looking for them!” God told them, “I’ve never quit loving you and never will. Expect love, love, and more love!” Jeremiah 31:3

A Child of God

“What marvelous love the Father has extended to us! Just look at it – we’re called children of God! That’s who we really are. But that’s also why the world doesn’t recognize us or take us seriously, because it has no idea who he is or what he’s up to.” 1 John 3:1

Delighted In

“Your God is present among you, a strong Warrior there to save you. Happy to have you back, he’ll calm you with his love and delight you with his songs.” Zephaniah 3:17

Forgiven

“He used his servant body to carry our sins to the Cross so we could be rid of sin, free to live the right way. His wounds became your healing.” 1 Peter 2:24

Washed Clean

“Come. Sit down. Let’s argue this out.” This is God’s Message: “If your sins are blood-red, they’ll be snow-white. If they’re red like crimson, they’ll be like wool.” Isaiah 1:18

Free

“Christ has set us free to live a free life. So take your stand! Never again let anyone put a harness of slavery on you.” Galatians 5:1

A Temple of the Holy Spirit

“Or didn’t you realize that your body is a sacred place, the place of the Holy Spirit? Don’t you see that you can’t live however you please, squandering what God paid such a high price for? The physical part of you is not some piece of property belonging to the spiritual part of you.” 1 Corinthians 6:19

Adopted into God’s Family

“This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike “What’s next, Papa?” Romans 8:15

Co-Heir with Christ

“And we know we are going to get what’s coming to us – an unbelievable inheritance! We go through exactly what Christ goes through. If we go through the hard times with him, then we’re certainly going to go through the good times with him!” Romans 8:17

Righteous

“How? you say. In Christ. God put the wrong on him who never did anything wrong, so we could be put right with God.” 2 Corinthians 5:21

New

“Now we look inside, and what we see is that anyone united with the Messiah gets a fresh start, is created new. The old life is gone; a new life burgeons! Look at it!” 2 Corinthians 5:17

A Saint

” A number of you know from experience what I’m talking about, for not so long ago, you were on that list. Since then, you’ve been cleaned up and given a fresh start by Jesus, our Master, our Messiah, and our God present in us, the Spirit. 1 Corinthians 6:11

Set Apart

“But you are the ones chosen by God, chosen for the high calling of priestly work, chosen to be a holy people, God’s instruments to do his work and speak out for him, to tell others of the night-and-day difference he made for you -” 1 Peter 2:9

An Ambassador of Christ

“We’re Christ’s representatives. God uses us to persuade men and women to drop their differences and enter into God’s work of making things right between them. We’re speaking for Christ himself now: Become friends with God; he’s already a friend with you.” 2 Corinthians 5:20

A Co-Laborer

“What makes them worth doing is the God we are serving. You happen to be God’s field in which we are working.” 1 Corinthians 3:9

A Sweet Aroma

“Because of Christ, we give off a sweet scent rising to God, which is recognized by those on the way of salvation – an aroma redolent with life.” 2 Corinthians 2:15

Never Alone

“God is striding ahead of you. He’s right there with you. He won’t let you down; he won’t leave you. Don’t let intimidation hold you back. Don’t worry.” Deuteronomy 31:8

A Masterpiece

“No, we neither make nor save ourselves. God does both the making and saving. He creates each of us by Christ Jesus to join him in the work he does, the good work he has gotten ready for us to do, work we had better be doing.” Ephesians 2:10

Wonderfully Made

“thank you, High God – you’re breathtaking! I marvel at how wonderfully God made both my body and soul. I worship in adoration – what a creation!” Psalm 139:14

Bold

“With that kind of hope to excite us, nothing holds us back.” 2 Corinthians 3:12

Having Guaranteed Victory

“You protect me with salvation-armor; you hold me up with a firm hand, caress me with your gentle ways.” Psalm 18:35

Holding a Secure Future

“I know what I’m doing. I have it all planned out – plans to take care of you, not abandon you, plans to give you the future you hope for.” Jeremiah 29:11

Whole in Christ

“When you come to him, that fullness comes together for you, too. His power extends over everything.” Colossians 2:10