Back in May, we made a weekend trip to Nashville, TN, to visit one of Harrison’s first, and still at this point, one of his longest-tenured therapists, who moved towards the end of last year, before his last major surgery: Taylor.

It was an incredibly fulfilling and enjoyable weekend, but it wasn’t until we were halfway home from the visit that I realized why it had felt so…effortless.

I don’t mean easy.

Traveling with a five-year-old is never easy. Despite how well-travelled Harrison is at this point. (34 trips and counting to Greenville alone will do that to ya.)

Traveling with a five-year-old who has Arthrogryposis, Nemaline Myopathy, clubfeet, scoliosis, braces, splints, a wheelchair, and more definitely isn’t easy.

But the weekend as a whole felt lighter.

It wasn’t until we were nearing the Tennessee border back into Kentucky that I finally asked myself why.

The answer surprised me.

For one weekend, Jenna and I got to experience something we rarely get to with Harrison. A level of calm we almost never have outside our own home. And it came down to one simple thing: We got to spend time with someone who simply knows Harrison. 

Not his diagnosis.

Not his therapy plan.

Not his surgeries.

Not his limitations.

I mean, Taylor, of course, has knowledge of all of that, but at the end of the day, she simply knows Harrison.

At first, that might not sound all that remarkable.

But for us, it was.

Most people who meet Harrison immediately begin processing.

They’re trying to figure him out.

They’re trying to do the “right thing.”

They’re trying not to say the “wrong thing.” (While some still do not care.)

They’re trying to decide whether they should help.

Whether they shouldn’t help.

Whether they should talk to him differently.

Whether they should slow down.

Whether they should be extra careful.

How to grab him or pick him up. How to navigate his not entirely typical body.

None of those reactions come from a bad place.

Most of them come from a sense of kindness.

Some come from uncertainty or from fear of making a mistake.

I understand all of it.

I probably would’ve acted similarly before Harrison came into our lives.

But there’s almost always a layer of anxiety when people are around our son. 

People react to Harrison before they respond to Harrison.

It’s subtle, but it’s an important distinction.

Most don’t even realize they’re doing it, but after five years, you notice.

And I think Harrison notices too.

The older he gets, the more convinced I become that he understands exactly how people see him.

Or maybe more accurately, how they don’t.

It’s easy to look at Harrison and see the wheelchair.

The braces.

The splints.

The scars.

The way he walks.

The way his arms and hands appear, and the fact he doesn’t use them.

The fact that he can’t speak.

It’s easy to focus on everything that makes him different.

What’s harder is seeing the little boy standing in front of you.

Because that’s still who he is.

He’s stubborn.

He’s funny.

He has a mischievous streak a mile wide.

He’ll absolutely hold a grudge if he thinks you’ve wronged him.

He loves being outside. He loves looking at and being under trees and in nature.

He loves swimming more than just about anything.

He has a laugh that can lighten any mood, and is impossible not to smile at.

He has a face of pride when he accomplishes something that will completely and utterly melt you, without even knowing what the accomplishment was.

He’s becoming increasingly independent.

He’s becoming increasingly opinionated.

He’s becoming increasingly prideful.

And he’s becoming increasingly aware of how the world reacts to him.

I worry about that. Not because I think people are intentionally cruel.

Most aren’t.

But I do think people unintentionally underestimate him.

They talk to him differently.

They expect less from him.

They become overly cautious.

They worry he’s going to break.

Meanwhile, Harrison is usually trying to prove he can do the things everyone assumes he can’t.

He has parents, therapists, and teachers who expect more from him. Who push him.

I don’t think he likes being underestimated or doubted.

If anything, being doubted seems to make him want to do it even more. If for no other reason than to spite them.

I don’t think he likes people talking around him.

And I definitely don’t think he likes people treating him like he’s younger than he is.

He’s five.

He’s a little boy.

He just happens to navigate the world differently, because the world isn’t made with him in mind.

That’s why spending the weekend with Taylor affected me the way it did.

She wasn’t calculating every interaction or second-guessing herself.

She wasn’t trying to figure Harrison out.

Of course, that comfort came from years of being around him. She already knew him. 

She knew when to help. She knew when not to.

She knew when he wanted independence or needed encouragement.

She knew when to let him struggle for a second or when to step in and help.

Not because she’s a therapist, but because, while pushing him, helping him, and watching him grow, she’d also spent years getting to know Harrison.

There was no awkwardness.

No hesitation.

No explanation.

Jenna and I didn’t have to narrate our son. We didn’t have to apologize for him, or explain why he was doing something or reacting a certain way.

We didn’t have to reassure her that he was ok, or that she was fine with what she was or wasn’t doing.

We didn’t have to ask for an extra hand when we needed it. She was already there, naturally reacting.

Everything just flowed. It was like she was an extension of us. Completely in sync. Knowing and understanding.

I don’t think I realized how mentally exhausting that constant need to translate, explain, or reassure had become until, for one weekend, we didn’t have to do it.

It wasn’t having another set of hands or simply having another adult around.

You could’ve dropped almost anyone into that weekend, and it wouldn’t have been the same.

It was Taylor.

Because Taylor doesn’t see a collection of diagnoses.

She sees Harrison.

That’s it.

To know Harrison is to know he has AMC.

To know Harrison is to know he has Nemaline Myopathy.

To know Harrison is to know about the surgeries, the scars, the braces, the splints, the wheelchair, the therapies, and everything else.

But to know Harrison is to know those things aren’t who he is. They’re simply part of his story.

Taylor has always understood that.

She doesn’t ignore the realities of Harrison’s life. She just never lets them be the first thing she sees. She sees the little boy before she sees the medical chart. She sees the personality before the diagnosis. She sees past the scars and braces.

She sees the child before the disability.

And because she does that, Harrison gets to simply be Harrison.

More than anything else, watching him cross that rope bridge at the zoo drove that home for me.

Yes, I was proud; of course I was. It was exciting to see. It was seeing a boy do what any five-year-old boy would want to do: walk across the rope bridge.

But there was another feeling I couldn’t quite place at that time.

I was happy that Taylor was there, but not simply because someone else witnessed it.

Most of Harrison’s milestones have happened with just Jenna and me.

We get to tell stories and show videos or photos later.

People, of course, celebrate the milestone when we share it.

But they’re hearing about the moment.

Taylor experienced this one.

She knew what it had taken to get there.

She’d seen the early days. She’d spent hours helping build the strength and confidence that eventually led to a little boy walking across a rope bridge at the Nashville Zoo. 

She understood the cost of that moment. The tears. Harrison’s frustrations. The surgeries. She’d seen him go from standing for just a second, to getting a gait trainer and essentially refusing to use it properly, to eventually taking those first steps. 

She understood just how much work he has put in to get to this moment.

It was something she witnessed herself. Her own memory. Not a video we showed her later or a story we told her, but a moment she got to experience for herself, with a full understanding of just what it meant. 

That’s what made it different.

I’ve sat on writing this for weeks.

Partly because I knew putting these thoughts into words might unintentionally hurt feelings.

There are family members who love Harrison deeply. Friends who love him.

Doctors.

Therapists.

Teachers.

People who would do absolutely anything for him.

This isn’t about ranking people. It isn’t about saying one person cares more or better than another.

It’s simply acknowledging something I realized on the drive home.

People like Taylor are incredibly rare.

Not because they’re kinder or more compassionate.

Because they’ve reached a place where disability is no longer the first thing they see.

They just see Harrison.

And if I’m being honest, I hope that’s how more people come to know him.

Not as the little boy with Arthrogryposis.

Not as the little boy who communicates with an AAC device or has to use his mouth for tasks that others would just use their hands.

Not as the little boy with the legs that almost look patchworked because of the scars. Not as the little boy who has to wear AFOs, TLSO, or use a wheelchair.

Just Harrison.

No footnotes.

No asterisks.

No qualifiers.

Just Harrison.

Taylor,

I don’t know if you’ll ever read this.

I hope you do.

You’ve always known how important you’ve been in Harrison’s life. I hope we’ve done a good enough job telling you that over the years.

What I don’t think I ever realized until that drive home was how important you’ve become in ours.

Thank you for everything you’ve poured into our son.

Thank you for helping him become the little boy we get to watch today.

Thank you for showing me what it looks like when someone simply sees Harrison.

Just Harrison.