“I wasn’t crazy. Which was kind of a relief in one way. But on the other hand — I wish I would have been crazy.” — Sarah Harter

Some episodes stay with you long after they’re over.

This is one of them. Not because of the laws it covers or the violations it names — but because of the person at the center of it. Sarah Harter is not a cautionary tale. She is a testament to what happens when a mother trusts her gut, refuses to be talked out of it, and just keeps showing up for her kid.

Her daughter Mia is twelve years old now. She is on a dance team. And the doctors’ testing said she should not be able to do that. Here is how they got here.

Two Years of Trusting Her Gut

Mia was born five weeks and three days early. From the beginning, Sarah knew something was not quite right — but she was a new mom and a medical professional, which meant she got dismissed twice over. “You’re probably just concerned because it’s your first child.” She heard that a lot.

Mia walked late. She did not go into Birth to Three services despite her mother asking. Her eyes had issues. Then, at two years old, Mia began falling. She could not take two or three steps without going down. Sarah called everyone she knew.

She pushed for an MRI. She switched a 12-hour work shift to make it happen on a Wednesday. Two and a half hours into the scan, no one had come to find her. She tracked down an anesthesiologist she knew. He said, “No one’s found you yet?” And she knew in that moment. She already knew.

The neurologist came in on his day off. Two choices: Madison or Mayo. Mia needed emergency surgery. The tumor had likely been there since birth. They had missed it for two and a half years. And the whole time, Sarah had been right.

The Surgery — and the Child Who Came Out

Mia’s tumor — a pilocytic astrocytoma — was sitting in her brain stem, her pons, and deep in her cerebellum. The brain stem controls heart rate and breathing. There is no such thing as a benign brain tumor. The surgery lasted seventeen hours. The surgical team removed about 85 percent of it, with the rest too deeply embedded in her cranial nerves to safely reach.

After surgery Mia could not walk. She had slight paralysis on her left side. She had no facial sensation on that side. She lost hearing in one ear. She was blind in one eye for a time. She had severe foot drop. The tumor had sat in the bed of cranial nerves — what Sarah describes as the computer circuit board of the brain. Removing it meant working through all of that.

She was two years old. And five months later, she started school.

Then the School System Had to Be Pushed Too

The public school put Mia on all the services from the start, and things went well for a while. Mia was doing fine academically — her cognition had been spared, which was one of the things the family held onto through all of it.

But when she was approaching 4K, the school told them they wanted to move her to a classroom for students with disabilities only. Not because of where she was academically. Not because of where she was cognitively. Because of what was easier for the building.

Karen’s response was exactly what you would expect: “Oh, that sounds like a great plan. It’s easier for us.”

Easier for the school is not the legal standard. The standard is the Least Restrictive Environment — the setting where a student can receive FAPE alongside their peers to the maximum extent appropriate. A child who is cognitively intact and doing fine academically does not belong in a self-contained classroom simply because she needs physical support. Every student on the continuum has the right to be around their peers. That does not disappear because someone has a para.

“Voluntold” — One Option Dressed Up as a Choice

If you have ever sat in an IEP meeting and felt like a decision had already been made before you walked in — you understand this. A school presenting one option and calling it a recommendation is not the same as offering a real choice. Parents have the right to ask about the full continuum of placements. They have the right to disagree. And a school threatening to pull services if a family chooses a different path is not operating the way the law intended. If this has happened to you, document it, and reach out to an advocate.

The Thing That Changed Everything: Intensive Therapy

One of the most important things Sarah shares in this conversation is something most families of medically complex children never hear explained clearly. There is a fundamental difference between what schools and hospitals typically provide — and what it actually takes to help some children reach new levels of function.

Sarah drove Mia four hours a week to Madison until she was six. Then every six months, they spent an entire month doing intensive therapy — four hours a day, every single day. This is how Mia learned to walk again. This is how she built the neural connections to do what her testing said she should not be able to do.

Mia dances. She is on a dance team. And the testing said it should not be possible. It is possible because her mother believed it was — and then did the hard, relentless, beautiful work of making it so.

What They Tried — and What Helped

Sarah is the first to say that not everything worked. But she also believes that if something will not harm her daughter and has the possibility of helping — it is worth trying. Here are the approaches that made a real difference for Mia.

Vision Therapy

Mia had no fusion of her eyes after surgery. She spent three years in vision therapy — three days in clinic, three days at home, every week. She regained eye fusion. She recently began again, this time working on visual motor processing. It is high intensity, it takes time, and it works. Vision therapy is also an available related service for students through their school district — something Sarah says she was never told when Mia was in public school.

MNRI — Masgutova Neurosensorimotor Reflex Integration

NUCCA Chiropractic

NUCCA is a highly specific upper cervical chiropractic approach. Since Mia began seeing a NUCCA doctor, her tumor has not grown. Sarah says it simply and clearly: she does not fully understand it, but the result is real. When something is not going to harm your child and the data says it may be helping — you keep going.

When Your Community Gets Smaller — and Richer

One of the quietest truths in this conversation is one that every parent of a child with a significant diagnosis knows but rarely says out loud. Your community shrinks. Not because people are unkind — but because people do not know how to enter something they have not walked themselves, and silence feels safer than saying the wrong thing.

As Mia has gotten older, she has also experienced the particular ache of social exclusion — not being included not because of anything she did, but because having her there felt like it might be complicated. Kids with visible differences often experience this kind of quiet, invisible exclusion. And it matters. They want to go to the birthday party. They want to be on the team. They want to be a kid sometimes, not just a patient.

And if you are wondering what to say to a family walking through something hard — Sarah and Karen both have a simple answer: you do not have to fix it. You do not have to relate. Just show up. Just say hi. Just have a normal conversation. That is enough. That is everything.

Resources Worth Knowing

These are the resources Karen and Sarah talk about in this episode. A few of them are ones most families never find out about. We are changing that right now.

Questions We Hear From Families