The Abandonment
My child relapsed. The doctors stepped back. I didn’t. | Part Two of Jonas’ Story
Jonas had been receiving IVIG—an expensive, high-risk treatment made from the pooled blood plasma of thousands of screened donors. It’s used to regulate the immune system when it attacks the brain. It had taken months to get it approved, and even longer to see results. But when the light came back in him, we knew: it was working.
We called it graduation.
Ten weeks of intensive therapy—four days a week, across state lines, juggling school libraries, hotel rooms, car snacks, and exhaustion. Jonas had completed the program. Not cured, not fixed, but stronger. Braver. He had tools now.
We were told it was time to stop IVIG.
Time to focus on anxiety.
Time to get him back to school.
It felt like the right call and we felt hopeful. Eager.
We were warned that inpatient care might be needed. That an IOP or PHP should be our next move. Every option we looked into had barriers—waitlists, state restrictions, or programs that simply didn’t fit his needs.
Still, we tried.
We found one of the only remaining options. We applied, we waited, we passed interviews. Library staff near the state line gave us free space. The city clinic worked with us. We cobbled it all together.
And then, we tried school again.
He made it as far as the parking lot.
Jonas curled up in the front seat, crying, shaking, covering his head. There was no way I could make him walk through those doors.
Everyone says: You have to make them go.
“You’re the mother,” they chide.
I am. So despite what the world thinks, I knew what would happen. I knew my kid.
I know what kids are like when they don’t understand others. I know the cruelty.
He knew it too.
After that, he never returned to public school again.
Despite the safety, his depression deepened. He felt like a failure.
Like everything he had worked so hard for—IVIG, therapy, hours in waiting rooms and blood draws—meant nothing.
We didn’t see it coming.
He got a cold. Skin picking came back. Anxiety spiked.
I thought it was the stress of school and setbacks.
I should have known.
He was flaring again.
We decided to restart IVIG. Our local doctor wasn’t comfortable doing it alone, so we reached out to the other team—the team that had been so dedicated, so instrumental.
The appointment was tense from the beginning.
We were asked why we hadn’t followed up.
I reminded them:
You said you would.
You told us to focus on anxiety.
You didn’t give us referrals—just a vague, “There are good programs near you.”
They reviewed his symptoms. Then they turned to Jonas.
"What do you want to do?"
Without missing a beat, he said: "I want to try IVIG again."
They asked for a few minutes to discuss privately.
When they returned, they told us they had ideas. They needed time to review.
They’d get back to us.
We were disappointed—but we understood.
Until I read the after-visit summary.
That’s when everything changed.
To be continued in Part Three: Hope Is a Beautiful Thing.
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