Built by a mother who kept asking.

Five days later, we learned he had X-linked adrenoleukodystrophy — a rare metabolic disorder. In the months that followed, we did what you do: we researched, we connected with specialists, we learned to pronounce things we'd never heard of, and we tried to understand what this meant for a child who hadn't even smiled at us yet.

What we didn't know then was that ALD was only one of the threads. There were others — and it would take years to find them.

Odin is a delight. There is an energy about him that draws people in — joyful, endearing, present in a way that's hard to describe. Which made it very hard for anyone outside our home to understand what we were experiencing inside it.

We enrolled him in a bilingual Spanish preschool where his older brother had thrived — a place Odin had been since he was three months old. It became clear that it wasn't working anymore. He wasn't engaging. He was mustering through each day. We unenrolled him and kept him home.

We had been navigating the Minnesota Help Me Grow birth-to-three program since he was six months old — recommended by our pediatrician for mild hypotonia and developmental differences, and also because of ALD. We went through the motions. Looking back, I understand now that it was more parent coaching than direct support for Odin at that age. At the time, it just started to feel like a chore.

Around age three, he had his first neuropsychological evaluation — part of the standard ALD medical protocol. We asked about autism. We asked about ADHD. He was too young, they said, to be certain. Come back next year. We walked away a little discouraged. They had heard our story. They understood there were deficits. And they said: come back next year.

We got Odin into his school district's pre-K program at four. He qualified because of his ALD diagnosis and the developmental delays already documented through the birth-to-three program — the years of appointments that had sometimes felt like a chore had quietly been building a record that mattered when we needed it most.

That year was one of the most healing of my life as his mother. He had a special education teacher who understood him. He had a team — school-based and outpatient OT and speech, in the same building, without us having to make a separate drive for each one. He rode the bus. I was terrified of that — this kid who could barely sit in a car for five minutes without trying to unbuckle himself, walking into a school building independently. And he did it. He thrived.

That year taught us how Odin moves through a school environment. What he needs. What lights him up. What doesn't work. It was evidence, accumulated slowly, that we carried into every meeting after that.

Before we sent Odin to kindergarten, I advocated to his geneticist — a specialist we only had because of his ALD — for a broader genetic panel. I'd been turning over a theory: mosaic Down syndrome. But what came back was a whole exome sequencing result we hadn't anticipated.

White Sutton syndrome. A rare condition associated with high rates of autism, intellectual disability, and several other presentations depending on the case. I look back now and wonder: if Odin hadn't had ALD, would I have had that geneticist? Would I have known to push for that panel? Would I have gotten there at all?

The diagnosis didn't change Odin. He was the same child he was the day before. But it changed what I knew to ask. It connected pieces that had been floating separately. It gave language to things I had been describing for years and watching people nod politely at without quite understanding.

What it also did: it made me angry — in a quiet, clarifying way — at how long it had taken. At how many appointments had come and gone. At how much I had needed to already know in order to ask the right questions.

I was in a therapy session — and I'll say it plainly: everyone should go to therapy, and especially parents navigating complex systems with children who have different needs. My therapist also happens to be a special needs mom. We learn from each other.

I remember telling her that what I needed was a quarterback. Someone who could see all the pieces — the ALD, the White Sutton, the developmental assessments, the school evaluations, the OT notes — and tell me what plays to call. Someone who could hold the whole picture and help me understand what it meant.

She looked at me and said: nobody can do that except for you. You know your kid best. You see all the pieces. It's really hard that the quarterback is you — but it is.

She was right. And also: she shouldn't have had to be.

I started researching — which I had always done, but now with more purpose. I started building tools for myself. Frameworks for reading documents. Lists of questions to bring to meetings. Ways of understanding what I was looking at so I could decide what to push on.

Then Odin's first reevaluation arrived — a document listing the tests they planned to run. And I read it and thought: what does any of this mean? How would I ever know if these were the right tests for this child?

I kept researching. And out of that process, Verdandi was born.