Let’s be real…parenting is hard. Here I am, Trudging Through the Muck of Life.
Parenting a child with a rare disorder like Opsoclonus Myoclonus Syndrome (OMS)? That’s a whole different level of hard. Some cases of OMS are tied to a type of childhood cancer called neuroblastoma. Others, like ours, are idiopathic—which is a fancy way of saying, “We don’t know why this happened.”
One day, our son was a typically developing, healthy child.
The next day, it was as if someone hit the reset button on his entire body.
He could no longer walk, sit, speak clearly, or feed himself. His hands and legs shook uncontrollably, much like the tremors seen in Parkinson’s disease. It was like having a newborn in a toddler’s body—except with rage, fear, and confusion layered on top.
Support, and Still Alone
We are incredibly grateful to have a loving support system. Family, friends, our church, and his team of therapists and doctors have come alongside us. There have been meals, prayers, encouragement, and plenty of tissues passed our way.
But only those of us who live in the trenches with him—every single day—really see it. The raw. The relentless. The moments we never expected to still be living.
What people don’t realize is that medical trauma leaves a mark.
Even as we’ve moved past the life-or-death stage and into what some might call “maintenance,” the emotional and behavioral toll lingers.
And that’s what we’re trudging through now.
When the Outside Doesn’t Match the Inside
Our son looks like a typical 11-year-old. But developmentally? He’s closer to 6. And when a child “looks” typical, people expect them to act typical.
They don’t see the hard wiring that’s been altered by trauma, medications, and daily battles just to stay regulated. They don’t understand that what seems like defiance or stubbornness may actually be overstimulation or fear. That his arguing isn’t about winning—it’s his way of grasping for control in a world that feels chaotic inside.
He can be fiery, impulsive, and loud.
Also, he struggles with sitting still, following instructions, managing big feelings.
He also has a heart the size of Texas, a smile that lights up rooms, and a brain that’s constantly working harder than most people will ever know.
Mourning and Readjusting
There are moments when I forget.
When I think, “We’re caught up. We’re good.”
Until he’s with peers… and the difference is painfully obvious.
And I mourn.
I mourn the “normal” I once knew and have to readjust to the beautiful, challenging, very real version of normal that we live now.
We keep trying new things. Gluten-free diets. Weekly therapy. Natural calming supplements. Educational supports. Consistency. Grace. Repetition. So much repetition.
And still—some weeks are just plain exhausting.
Naming Emotions, Naming Grace
One of the ways we’re helping him process the trauma and learn emotional regulation is through emotion cards. We’ve taped them to the fridge, his bedroom wall, and even put them in his backpack. We role-play, talk through scenarios, and practice statements like:
“I feel sad because kids at school won’t play with me.”
“I feel angry because I don’t like to be told no.”
Sometimes, we sit on the floor for nearly an hour, just naming what hurts.
Sometimes, when he’s done, he simply says, “Let’s move on.”
And we do.
What I Need You to Know
I’m tired. I’m honest enough to say that.
But I’m not giving up. Not even close.
I would choose this child—this life—a million times over, even on the hardest days.
He is mine. He is meant for me. And I will keep fighting for understanding, connection, and healing every day we’re given.
But I also need you to know this:
If you see a mama struggling with a child who “looks fine” but is melting down,
please don’t judge. Don’t offer unsolicited advice. Don’t scowl or whisper.
Offer a smile. A silent prayer. A moment of grace.
Because what you see is a fraction of what life looks like for families like ours.
Most diseases are invisible. Most battles are internal. And most of us are doing the best we can with what we have.
“The Lord gives strength to His people; the Lord blesses His people with peace.”
— Psalm 29:11
💛 Heartbeat Moment
Grace doesn’t cost you anything to give—but for someone else, it may be the only thing keeping them going.
Love more. Judge less.
And if all else fails… just be kind.
💛 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.
Related Posts
Keep Moving Forward
Like this:
Like Loading...
You must be logged in to post a comment.