The Shaking Doesn’t Stop
The Second ER – Misdiagnosis #2
We made arrangements for the kids, packed bags, and headed 2.5 hours to Nashville. We arrived at Vanderbilt Children’s Hospital in the middle of the night. By then, the shaking had not stopped.
They admitted us briefly but said no MRI could be done until morning.
They ran bloodwork and later completed an MRI. I asked for a spinal tap or spinal MRI. They declined. “Not necessary,” they said.
While we waited, new symptoms began to show up. H stiffened his legs like a toy soldier. He shook all over. He couldn’t sit up without help.
The MRI showed nothing. We were told it was Acute Cerebellitis Ataxia, likely caused by a virus even though he had never been sick.
“Is anyone among you sick? Let them call the elders of the church to pray over them…”
James 5:14a (NIV)
We were told we must have just not noticed when he was sick. I was stunned.
He is three.
Anyone who had spent time with him would have known something was wrong.
We were told to return if he had a grand mal seizure or if we feared for his life.
Discharged, But Not Done
What I’ll never forget is how flippantly the doctors treated us and how dismissive they were. But what I will remember even more clearly is the nurse who looked me in the eyes and said:
“You don’t have to leave. I can’t believe they’re discharging you, given the state he’s in.”
We knew then that we needed to keep pushing.
“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.”
Galatians 6:9 (ESV)
The Third ER: Misdiagnosis #3
Still unsettled, I packed up again and drove 3.5 hours to Louisville. I wanted one thing: confirmation.
If two doctors gave me the same diagnosis, I’d accept it and wait.
Big Daddy stayed home with the others. I was hopeful that this time, we’d get real answers.
But even when the world throws labels and shrugs its shoulders, a mother’s gut and the Holy Spirit won’t be quieted.
Heartbeat Moment: When the Shaking Begins
That June evening, I had watched H giggle and shout with joy at a ball game. One day later, I watched him crumble under the weight of something we couldn’t name. But in between the popcorn and the panic, I felt something deeper growing like a fire, a knowing.
We weren’t just walking through a medical crisis.
We were walking through holy ground.
And even when we didn’t know the name of what we were fighting,
God did.
“Before they call I will answer; while they are still speaking I will hear.”
Isaiah 65:24 (NIV)
You can read more from our Opsoclonus Myoclonus Syndrome journey here.
Helpful Resource:
If you are walking through medical parenting, rare disease, grief, faith, or hard seasons, I keep a list of books and resources I have personally found meaningful here: Helpful Resources I Love.
Disclosure: This page may contain Amazon affiliate links. As an Amazon Associate, I earn from qualifying purchases at no additional cost to you.
