These days, life looks different than it did during the thick of H’s treatments. We’re no longer spending weeks on end in the hospital, juggling chemo, IVIG, ACTH, and emergency room visits. But just because we’re out of that season doesn’t mean the journey is over.
Life today is still challenging.
It’s just a different kind of hard.
👀 What You Don’t See
From the outside looking in, especially when he’s asleep, H looks like a typical 11-year-old boy.
He’s tall for his age. Handsome. Bright-eyed. A full head of hair. If you didn’t know him, you might never guess what he’s been through. He loves to ride his bike, play legos, listen to music, and look through books.
But then you see him around his peers—and it becomes clear that things are different.
🧠 Behind and Brilliant
H is significantly behind both academically and behaviorally. He struggles to connect with kids his age because… well, he’s never really had the chance to be “just a kid.” If you think about it, he spent a good chunk of his early life in hospitals and in isolation due to COVID-19.
He relates beautifully with younger children and older adults. It makes sense—he was raised around adults. His closest sibling in age is 8 years older and his oldest sibling is 18 years older. His world has always been full of people far ahead of him in life.
It’s no wonder he doesn’t fit into the traditional mold.
🍽️ What You Might Notice
Watch him try to eat a meal and you’ll see:
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He might hold his fork differently.
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Sometimes, he switches to a spoon when his tremors are worse.
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He brings his mouth closer to his plate to avoid spills.
These aren’t bad habits. These are adaptations—skills he’s taught himself to compensate for what his body can’t always do.
He has had to relearn everything:
Sitting. Standing. Walking. Running. Jumping. Talking. Feeding himself.
Even sleeping.
That kind of restart at three years old?
That’s massive.
💪 He’s Worked So Hard
He’s had years of physical therapy, occupational therapy, and speech therapy.
And every ounce of progress has been fought for.
But even now, tremors in his hands affect his fine motor skills. Writing, buttoning, tying shoes—these are not simple tasks for him.
🏊♂️ And Then There’s Vitiligo
When you see H swimming, you might notice patches of skin that look lighter than others. That’s called vitiligo—a condition where the body stops producing pigment in certain areas of the skin. It’s harmless, but it makes him look a little different.
And for a kid who already feels different, every stare can feel loud.
🧨 Big Emotions, Big Triggers
H also lives with behavioral challenges linked to medical trauma, neurological inflammation, and life experiences no child should have to endure.
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His coping skills are still developing.
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His emotions sometimes erupt unexpectedly.
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And between OMS moments, puberty, and trauma, things can get spicy around here.
We’re working on it. Therapy. Daily conversations. Emotional tools. So much prayer.
🤧 When Sick Isn’t Just Sick
One of the hardest ongoing realities of OMS is that when H gets sick—it’s not just a cold.
A mild virus can send him backward.
He might lose his speech for a time.
Or he loses his ability to walk.
And often, he’ll need steroids to get back to his baseline.
Once, he had the flu and couldn’t walk. Another time, a cold took his speech away.
These are not exaggerations—they are real, terrifying parts of our life.
This is why we are so careful. So protective. So hypervigilant.
We avoid crowded places during flu season.
>We sanitize. We plan.
>We protect him—not out of fear, but out of wisdom born from experience.
🙌 A Hidden Mercy
Oddly enough, H doesn’t get sick very often.
Is it the protocol we followed?
Is it because we’ve been so cautious all these years?
I don’t know.
But I do know this: I’m thankful.
Every healthy day is a mercy I don’t take for granted.
“The Lord is my strength and my shield; my heart trusts in Him, and He helps me.”
— Psalm 28:7
💛 Heartbeat Moment
He’s made it through things most adults will never face.
He’s braver than he knows, and stronger than most people realize.
So the next time you see a kid struggling to eat, or a boy who’s acting “young for his age,” or a mama who looks tired and guarded—pause.
What you’re seeing is just a glimpse.
The full story is deeper. Sacred. Hard. Holy.
H’s life may look different—but it is beautiful.
And he is doing amazing.
💛 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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