Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

A Father’s Faith

A Father’s Faith

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Before the Shaking Began

before the shaking began

A Sweet Night at the Ball Field

On this day in 2017, Before the Shaking Began, I had been with my Lady, and I knew her family was coming into town. I wanted to give them time together, so I took all my kids to one of my son’s baseball games. It was a warm evening, the kind where summer storms tease the horizon but never quite make it to the field. The game was something everyone could enjoy, and I looked forward to the joy of watching my kids just be kids.

H hadn’t been to a baseball game since the previous summer. Now that he was a little older—he had turned three that February—I knew he’d enjoy it even more.

And oh, he did.

He absolutely charmed everyone around us. Then, he shamelessly ate their popcorn and nachos with zero hesitation. He cheered loudly, with unfiltered excitement. He was the comic relief for everyone near us, and he loved every single minute of it.

“A cheerful heart is good medicine…”
Proverbs 17:22a (NIV)

For that moment, everything was sweet and simple. That evening is forever etched in my memory as one of the last “normal” moments we had for a long time.


The Next Day: A Shift in the Air

The conversation from earlier that day—the kind you tuck away in the back of your mind—didn’t resurface until June 7. That was the day the world stopped turning for our family.

H was highly emotional that morning. He was doing things he shouldn’t have been doing, getting in trouble more than usual. His older brothers—sweet and patient—took him into their room to play Legos while I caught up on paperwork and phone calls.

I could hear H yelling at the boys, and I could also hear them giving in. Over and over again. I heard my oldest say, “Stop shaking. You’re not in trouble. Here, take the Lego… stop shaking.”

Stop shaking.

When H got excited or upset, he would sometimes shake his arms and legs. I assumed this was more of the same. I figured his brothers were tired of managing him and needed a break, so I called him back into the dining room.

He screamed the whole walk down the hallway. Honestly, he wanted to stay with the big boys. He cried, shook, and screamed some more. I put him in time out on the step. He continued crying—louder now—and shaking from head to toe.

I told him he needed to stop and that once he did, he could get up. Eventually, he stopped. He got up and went to play with his toys.


The Nap That Changed Everything

Lunchtime came and went. H went down for his usual nap. He had been napping since he moved in with us at 21 months old. That day was no different—he slept until about 4 p.m. My oldest son went to get him up, as he often did. He usually carried H downstairs and set him in my lap.

That moment was no different, either. H snuggled into me, and we talked about his dreams—he had dreamed about his pillow. I hugged him tight and said, “Okay, time to potty, buddy. Can you hand me your underwear?”

It was only about ten steps away.

I stood him up…

He wobbled and he stumbled.

And then… he fell.

He cried out, terrified. My heart dropped.

One of the boys quietly mentioned that the same thing had happened the day before—after a nap—but it quickly resolved, and no one thought to tell me. I brushed off the panic and told myself maybe his legs were just asleep. I snuggled him and rubbed his legs.

After a few minutes, I stood him up again.

He fell over. There was no moment where he could stand up. He couldn’t balance or walk.

“When I am afraid, I put my trust in You.”
Psalm 56:3 (ESV)


The First ER Visit – Misdiagnosis #1

I gathered our things and called Big Daddy: “You need to meet us at the ER. Something’s wrong. H can’t walk.” I also called my oldest sister—H’s grandmother—and asked her to meet us there.

On the 30-minute drive, H kept repeating: “My legs won’t stop shaking.”

It scared him.
It scared me.

At the hospital, they did a CT scan. It came back normal. They drew blood—without gloves, mind you—and began tossing around terrifying words like Muscular Dystrophy and Cerebral Palsy. Then they pivoted, decided maybe it was Strep, even though he tested negative. They gave us Amoxicillin and sent us home.

We left that hospital with a terrifying truth:
Our baby couldn’t walk.


Friends Who Move Mountains

On the drive home, I started making calls. I called a friend whose daughter had a rare illness and ended up paralyzed when she was little. She is a pit bull—and I love that about her. She pulled strings and got us in touch with a brilliant neurologist. I also called another friend who works in the neurology world. They both said the same thing:

“Get that baby to Vandy. Don’t wait. Don’t let the grass grow under your feet.”

And that’s exactly what we did.


To be continued…

“The Lord Himself goes before you and will be with you; He will never leave you nor forsake you.”
Deuteronomy 31:8 (NIV)

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

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

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

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

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