I'm back on a walk. Naples, Florida. My parents' gated community, which means the biggest danger out here is a golf cart and my own thoughts.
I'm nearly 40 years old. My kids are asleep. I told my parents I'd be back by 9:25, and it's currently 9:12.
So I've got 13 minutes to tell you everything.
Whew. Okay. Let's go.
I said last time that this one would be about the diagnosis.
And it will be.
But here's the thing — the diagnosis and the preparation to discover it are so deeply connected that I can't get to one without going through the other first.
Stay with me.
We're following a flow.
After Ernie was born — after his differences revealed themselves one by one, after Dr. Shin was there for me, guided me, supported me — everyone around me kept saying:
Something else is going on.
It would be very, very, very rare, they said, for all of these things to be happening without a syndrome. Something deeper in his blueprint. Something with a name.
And I did not have the capacity for that.
I did not have the capacity to think about a system or a syndrome or anything other than attachment.
We had done the initial genetic testing while he was still in the womb. At least I think I did. Dr. Blumenfeld told me I did, and you know where Dr. Blumenfeld is now, so take that for what you will.
But immediately after Ernie was born, we did the big genetic testing.
I couldn't tell you all the letters. I still can't. But essentially, it was testing for Down syndrome or anything else as significant as Down syndrome — the kind of result that changes the entire trajectory of a life.
And they all came back negative.
And the moment they came back negative, I said:
I don't want to know anything more.
I had been rocked.
I mean that in a way that doesn't take away from the immense love I have for my child.
But I'm telling you, I was rocked.
And I didn't need more information.
Because in that moment, my only job was to love my son. To give all my love to my son, to my daughter at home, to my husband.
All I wanted to do was hold onto hope.
There's a small story I forgot to tell you — from just before all of it.
When we got the call that things were complicated, that we needed to go to Dartmouth for an emergency induction, Jonny and I were driving from the Christmas house.
We'd been staying in Londonderry, Vermont. Technically maybe South Londonderry. Vermont is like that. Town lines aren't always clear — especially in places with fewer than a thousand people.
On the way from Londonderry to Lebanon, New Hampshire, where Dartmouth is, you pass the flagship Vermont Country Store.
One of my best friends growing up — her mom had worked there. I have a lot of really good memories from that place. Later, she married the owner. The founder. His name was Lyman.
He had a son named Gardner.
And the only two people in my entire life I've ever known by the names Lyman or Gardner are my stepdad and my stepbrother.
That's Vermont for you.
We say the family tree is less like a tree and more like a wreath.
Anyway.
We're driving to the hospital, and I said: Jonny. Let's stop. We need to buy something.
My anxiety has always wanted to shop.
So we went in — and Jonny and I bought matching flannel nightgowns. Old school. The kind that go halfway down your calf. Blackwatch plaid — navy and green — the pattern my dad grew up wearing.
After Ernie was born, we changed into those nightgowns.
There was a pull-out sofa in the delivery room, and Jonny and I laid down together — dressed like we were from another era — and held onto each other with everything we had.
It wasn't casual.
We were facing each other. My face tucked into his chest, into the curve of his shoulder.
It was the deepest, simplest exchange of:
I'm here for you.
They had taken Ernie away to run more tests.
We must have fallen asleep like that. I don't know for how long.
At some point, a nurse came in and woke us up.
And she asked what my plans were for contraception.
I said, "I'm sorry… what?"
Still half asleep.
She repeated it. "Will you be starting birth control?"
And I just looked at her.
Total disbelief.
"I'm never going to have sex again after what I've experienced in the last 24 hours. You don't need to worry about that. Can I go back to sleep now?"
She left.
Jonny and I looked at each other and immediately started laughing.
The tightness of our hold — maybe the matching gowns — must have made it look like we were already on our way to making another baby.
How far from the truth that was.
Our intimacy didn't disappear.
We couldn't keep our hands off each other — always kissing, always close.
But sex…
Sex felt like an invitation for trauma.
And I'm still waiting for the day when it feels like something else again.
My ADD. Welcome to it. It's not a lie.
Where was I?
Right.
The hospital. The negative results.
And for several months after Ernie was born, I just believed — maybe this is just how he is.
Maybe my kid had a cleft lip, a cleft palate, twelve toes, ten and a half fingers, a big head.
Maybe that's just how Jonny and I made a male version of ourselves.
I'll never forget meeting with the neurosurgeon and the genetics team for the first time.
The head of genetics at Dartmouth put a tape measure around my head and said:
Does everyone in your family have macrocephaly?
I said: I'm sorry — what does that mean?
She said:
Big head. Do you all have big heads?
And I laughed.
I consider myself very self-aware — to a point that is, honestly, destabilizing.
I can tell you I've had extra tummy fat my entire life. I can tell you that on a dance floor, when everyone was moving right, I'd be moving left. They'd take two steps, I'd take three.
At the ripe age of 26, in a warehouse in East London, Jonny finally taught my feet to move to the music my ears could hear.
So I kept thinking: Ernie's differences were just Ernie.
We're all kind of different.
Maybe his constellation of differences didn't mean anything more than that's just how he showed up.
And then.
The day he was born.
The delivery room at Dartmouth was so clinically white. It pains me to even think about how white and bright that room was.
And the reason it was so bright, the reason there were twelve people in it — that's a whole other story I'm saving for another time.
But there was a woman in the back of the room. An Indian woman.
And after Ernie was placed on my chest, she came running toward me.
Oh my gosh, she said. Did you know? Did you know he was going to have twelve toes? In Indian culture, extra toes are good luck.
I looked at her.
With my dry sense of humor. My directness that ninety percent of the time comes from love — and ten percent of the time lands… less well.
And I said:
I'm not Indian.
Still makes me laugh.
Because in the way I was raised, extra toes didn't make you lucky.
Twelve toes made you fucking scared.
So I kept going.
I refused to accept that anything was wrong with Ernie beyond his physical differences.
And that was that.
And then — five months in —
Because of his cleft lip and palate, I couldn't breastfeed him.
I had to squirt milk into his mouth with what was basically a hamster-feeding bottle and tube.
I'm not exaggerating.
If I showed you how I fed him for the first five months of his life, you would not question why I'm choosing to share all of this now.
Because holy shit, no one prepares you for this stuff.
A nurse from the VNA — the Visiting Nurses Association and Hospice of the Southwest Region of Vermont — came to my house once a week.
Just to weigh him.
Just to see if he was getting enough nutrients to live.
I wish they weighed me once a week.
The amount I was carrying — on the scale, but more importantly in my head.
I wish someone had checked on me, too.
To see if I was getting enough nutrients to live.
There were weeks he gained a pound. Weeks he lost two. Weeks he gained four.
I finally got his weight to where it needed to be.
I finally felt like we were in sync.
And despite everything, I felt like I was doing my job.
I was giving him what he needed.
He was growing.
It's funny how all of these milestones felt directed at me.
The mother.
It was me who was grappling with it all.
Me who had to decide when I was ready — and what I was ready for.
It was my phone number that all of the specialists had on file.
Craniofacial.
Plastics.
Speech.
Neuro.
ENT.
Ophthalmology.
Dermatology.
Genetics.
Pediatrics.
My phone was ringing off the hook for two years.
I couldn't escape it — not even for a day.
There was always someone looking for me.
And what no one knew was that I was looking for myself at the same time.
The weight of it all — emotional, administrative, constant — felt impossible to separate.
Because that's the role.
The one no one formally assigns, but every mother steps into.
We hold everything.
The information.
The decisions.
The timelines.
The questions no one else is asking yet.
The answers everyone expects us to have.
We become the center of it all.
Not because we chose it.
Because it comes with the job.
And then I was on Instagram one day.
Fucking Instagram.
There was a woman whose baby had been born around the same time as Ernie.
And I saw her baby doing tummy time. Lifting his head.
Actually lifting his head.
And I thought:
Oh shit.
Ernie wasn't doing that.
And once I let myself see it — once I accepted that I was watching other kids his age do things he wasn't doing — something shifted.
I said:
Okay. Enough Mama Bear. Enough hope, hope, hope.
You have to face the facts.
I went back to Dr. Dinulos — the head of genetics at Dartmouth.
She specialized in diagnosing and managing children with genetic diseases. Birth defects. Developmental differences. Chromosomal abnormalities.
The kinds of things you don't casually look into unless something is really there.
She had been spending time on Ernie's case since the day he was born.
Which, if I'm honest, told me everything I needed to know.
A doctor like that doesn't stay that close unless she's tracking something.
Something bigger was going on.
I just wasn't ready to unpack it.
I didn't think my own mental health could handle it.
And if I'm honest, I was already doing the work to try and get there.
I spent a year with a life coach. Meeting once a week. Sometimes two.
Tiahna Skye.
Her work is rooted in one simple idea: awareness creates choice.
She helped me see myself more clearly — not just as a mother in crisis, but as a whole person.
She helped me find the whole me.
So that, slowly, I could move from a life of fear… into a life where possibility felt available again.
And then, finally, I said to Dr. Dinulos:
Okay. I'm ready to talk.
It took a year.
A year of conversations before I finally said: I'm ready.
And the only reason I got there was Dr. Dinulos.
God bless her.
She looked at me and said:
There is nothing you did to cause this.
It was sporadic. It's not genetic.
You had one Aperol Spritz. You took a small dose of medication you've been taking for twenty-five years.
Your body did create Ernie. But nothing you did alone created what you received.
She said:
All we have to do is know the truth.
And once we know the truth, we can solve for it.
Don't be scared of what we find. Be excited.
Because once we know what we're working with, this entire hospital system is going to give your little boy the best care we can possibly give him.
Whew.
She got me.
My backbone went soft, and I said:
Let's go.
I signed papers. Blood tests. Jonny did blood tests. Ernie's were already in the system.
And then — a few weeks later —
Dr. Dinulos called.
I have something really exciting to share with you, she said.
We know.
We know what caused all of this.
I'm not trying to keep you from the punchline.
But it is 9:31 p.m., and I promised my parents I would be home by 9:25.
They are probably standing at the window of their home in Naples, Florida, wondering how their nearly-40-year-old daughter managed to get lost on a street with no exits, and hoping I didn't get kidnapped on a runaway golf cart.
Tune in next time.
I'll tell you what they found.
What I had spent a year trying not to know.
Peace be in you.
— AB
P.S. The Diagnosis…still arrives March 26, 2026
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I've shared mine.
Now I pass it to you.
peace is in you