Why CranioDad

September is Craniofacial Awareness Month.

So today seems like a good day to talk about a word that has been part of our family for fourteen years.

Craniosynostosis.

Before my daughter was born, I had already spent more than a decade working in and around healthcare.

I had never heard the word.

Not once.

Then Zoey was born.

And suddenly I needed to learn everything I possibly could about it.

Craniosynostosis occurs when one or more of the sutures between the bones of a baby's skull fuse too early.

Those sutures are supposed to remain flexible while the brain grows.

When one closes prematurely, growth becomes restricted in that area and the skull compensates elsewhere.

In the United States, craniosynostosis is estimated to affect about one out of every 2,500 babies.

One in 2,500.

Rare enough that most people will never need to know what it means.

Common enough that thousands of families do.

Zoey's diagnosis includes bicoronal craniosynostosis.

Both coronal sutures.

The sutures that run across the skull from ear to ear.

When both close prematurely, normal forward growth of the skull becomes restricted.

Her story is more complicated than those few sentences.

Much more complicated.

But those were some of the words that changed our lives.

Fourteen years ago, I did what frightened parents do.

I searched.

Everything.

Medical websites.

Studies.

Forums.

Support groups.

Anything that might tell me what was happening to my daughter and what came next.

I found incredible communities.

Pages for mothers.

Groups for parents.

Resources for children.

People sharing surgical pictures.

Recovery stories.

Advice.

Fear.

Hope.

But I kept looking for something else.

A dad.

I wanted to hear another father say what I was feeling.

What it was like to watch your daughter disappear through the doors toward an operating room.

What it was like to know that surgeons were going to open her skull.

What it was like to sit beside her afterward.

Bandages.

Swelling.

Pain.

Eyes swollen shut.

Machines everywhere.

And somehow you're Dad, so you're supposed to have some idea what to do next.

I couldn't find that voice.

So eventually...

I became it.

CranioDad.

That's where the name came from.

Long before this became a place where I wrote about leadership, school, coffee, faith, birthdays, burned grilled cheese, lake afternoons, or whatever ridiculous thing happened in our house this week.

It started with a frightened father trying to understand what was happening to his daughter.

Over the fourteen years since, I've learned more about craniosynostosis than I ever imagined I would.

Doctors taught me.

Nurses taught me.

Medical journals taught me.

Other cranio families taught me.

Some incredible people at VCU Children's have walked beside our family through more than I could ever adequately thank them for.

But nobody has taught me more than Zoey.

There's a phrase you'll hear in cranio communities.

Cranio kids are strong because they have to be.

I've always had complicated feelings about that.

I don't particularly like that they have to be.

I would gladly take every surgery.

Every recovery.

Every frightening appointment.

Every headache that makes my stomach drop.

Every moment of uncertainty.

I'd take all of it for her if I could.

I can't.

So instead, I've watched her become strong.

There are little things from those surgeries that never left us.

One of them is my beard.

After surgery, Zoey's eyes would swell shut.

She couldn't see me.

But she could reach for me.

She would put her little hand on my face.

Feel around until she found my cheek.

Then she'd rub the stubble along my jaw.

It calmed her.

She liked it when I hadn't shaved for a few days.

The roughness was familiar.

Something she could feel when she couldn't see.

Dad.

So eventually...

I stopped shaving it off.

I let it grow.

Not because I was trying to change how I looked.

Not because I suddenly decided I wanted a beard.

Because if she ever needed to reach out in the dark and find Dad...

I wanted something familiar waiting for her.

Fourteen years later, the beard is still here.

So is she.

I don't think I'll ever shave it completely off.

Some things become part of you for reasons nobody else can see.

Zoey's experience isn't everyone's experience.

That's important.

Craniosynostosis can look very different from one child to another.

Some families face a relatively limited treatment path.

Others face major cranial reconstruction and additional surgeries as their children grow.

Zoey has traveled farther down that road than some.

Others have traveled much farther than us.

There isn't one cranio story.

This is ours.

And ours has given me a front-row seat to one hell of a young woman.

She has fire.

She has an enormous heart.

She pushes herself.

Not because she needs to beat somebody else.

She's never been particularly interested in that.

She simply knows what she wants to do.

And she refuses to let cranio decide that she can't.

I'm insanely proud of her.

I'm humbled that I get to be her dad.

And as she gets older, something about my role has become increasingly important to me.

I will always speak for her when she needs me to.

But I never want to speak over her.

This is her life.

Her story.

Her scars.

Her strength.

Her voice.

CranioDad exists because fourteen years ago she needed Dad.

As she becomes a young woman, part of Dad's job is knowing when to shut up and let Zoey speak for herself.

The fear hasn't disappeared.

I wish I could tell a new cranio parent that eventually it does.

For me, it hasn't.

Every specialist visit can still bring it back.

Every clinic.

Every unusual headache.

Every new question.

There is still a part of my brain capable of becoming that frightened dad again.

The one who didn't know what craniosynostosis meant.

The one who desperately wanted somebody to tell him what came next.

The difference is that fear doesn't own quite as much of me anymore.

Fourteen years of learning helps.

Fourteen years of doctors helps.

Fourteen years of watching her grow helps most of all.

And we are extraordinarily fortunate.

I think about that a lot.

We live when we do.

We live where we do.

We have access to specialists.

Imaging.

Modern anesthesia.

Pediatric neurosurgery.

Craniofacial surgery.

Teams capable of following children like Zoey as they grow.

Modern medicine can do extraordinary things.

Surgeons can remove portions of a child's skull.

Reshape them.

Expand them.

Reconstruct them.

Create room for a growing brain.

Then continue watching that child as they grow and intervene again when necessary.

There were generations of parents who did not have access to anything resembling the options we have today.

I don't take that for granted.

I don't take our doctors for granted.

I don't take our access to care for granted.

And I absolutely do not take another ordinary day with my daughter for granted.

Because ordinary is pretty incredible when you remember some of the days that came before it.

So during Craniofacial Awareness Month, I'm asking for something small.

Learn the word.

Craniosynostosis.

Because somewhere, another parent is hearing it for the first time.

And they're probably terrified.

If that's you...

I get it.

Really.

Over the years, dads have found CranioDad and reached out privately.

Sometimes they want information.

Sometimes they want to hear about another family's experience.

Sometimes they just need another father to say:

Yeah.

I was scared too.

Those conversations stay private.

Always.

But every one reminds me why that frightened dad fourteen years ago decided his voice might be useful.

And if you're looking for somewhere tangible to help, please take a moment to learn about Cranio Care Bears.

Our family received one of their care packages during one of Zoey's surgeries.

I remember that box.

More importantly...

I remember what that box meant.

Because there is a particular kind of loneliness in watching your child recover from cranial surgery.

Their head is bandaged.

Their face is swollen.

Their eyes may be swollen shut.

They're uncomfortable.

You're exhausted.

You're scared.

And there is only so much anyone can say that makes any of it better.

Then a box arrives.

From people who know.

It doesn't fix anything.

It doesn't make the surgery disappear.

It doesn't make your child suddenly comfortable.

It simply says:

You're not the first family to sit here.

You're not the only family sitting here.

You're not alone.

Fourteen years ago, I went looking for someone who could tell me that.

Eventually, that search gave me a name.

Then a voice.

Then this place.

But CranioDad was never really about me.

It started with her.

A little girl who couldn't open her eyes...

But knew she could reach out and find Dad.

And fourteen years later...

I'm still here.

The beard is still here.

And I'm still incredibly grateful that I get to watch her grow.

Awareness months can sometimes feel like another color on a calendar until the thing being recognized becomes part of your family. Then awareness becomes very personal. It means another parent might recognize a word sooner, find a community faster, or spend one less night believing they're the only person terrified by what comes next. I can't remove that fear for another cranio parent, and I would never pretend that our family's experience represents everyone else's. What I can do is keep talking when it might help, keep listening when someone else needs to talk, and keep pointing toward the people and organizations that reminded us we weren't alone. Fourteen years ago, I needed those voices. If CranioDad can occasionally be one of them for somebody else, then the name is still doing exactly what it was created to do.

Much love.

Stay safe.

Wash your damn hands.

And I will see you, next time.