You could arguably say this was five years in the making.
We finally met Misha.
Misha was one of the first people we came across after learning Harrison had AMC. I’m pretty sure Jenna may have already been following her before we ever brought him home from the hospital.
So, we’ve known of Misha for essentially as long as we’ve known this part of Harrison’s world.
Over the years, there have been a couple of times when our paths almost crossed. Schedules didn’t line up. We weren’t in the area when she was going to be. One year Harrison got sick around the time we were supposed to meet, and the last thing we wanted to do was risk passing something along to her, or any of the other AMC kids and families she would be seeing.
It just never happened.
Until this summer.
For those unfamiliar with Misha, she is a huge figure in the AMC, Arthrogryposis Multiplex Congenita, awareness community.
Every June, during AMC Awareness Month, she takes off on what can only be described as an incredibly ambitious road trip around the country. She travels thousands of miles, meeting AMCers and AMC families along the way, with the trip eventually ending wherever that year’s AMC Support Conference is being held.
This year, the conference was in Columbus, Ohio.
Misha, Mike, and Marty were making their way north from Florida, and it just so happened that their route was bringing them through Savannah, Georgia, where they were meeting up with another AMCer.
At the same time, we were spending the week at Hilton Head, South Carolina.
Savannah is only about an hour away.
After years of almost meeting, the stars had finally aligned.
So we took an afternoon, drove over to Savannah, and finally got to meet Misha.
And Mike. Misha’s husband. Photographer, organizer, just an all-around amazing guy, and arguably the ultimate advocate.
And Marty, another AMCer traveling with them. Marty owns Alora Grove, a company in Dearborn, Michigan, focused on holistic health and wellness through natural pain relief products and Pranic Healing services.
The three of them playfully referred to themselves as “the tripod.”
I’ll admit, I was a little nervous.
There wasn’t one particular reason for it. There were just a lot of variables.
We haven’t had many opportunities over the past five years to spend time with other people with AMC. I didn’t know exactly what to expect. I didn’t know how Harrison would handle everything. We were initially meeting at a coffee shop, and I had no idea how interested our five-year-old was going to be in sitting around while a bunch of adults talked.
Without any real baseline for what the afternoon was going to look like, the nerves crept in.
Apparently, Misha didn’t entirely know what to expect either.
One of the first things she told us was that meeting Harrison felt a little like meeting a celebrity because she had been following him since he was tiny.
That was a strange thing to hear.
Because from our side of things, she was Misha.
Her story and her face had been part of this AMC world that we entered when Harrison was born.
We had followed her travels.
We had watched her advocacy.
We had seen her interact with AMC families around the country.
For five years, Misha had been one of those people we knew through this world we suddenly found ourselves in.
And now we were all just sitting around a table in a coffee shop in Savannah.
Once we sat down, those initial nerves disappeared pretty quickly.
The energy and interaction were immediately friendly and natural.
Nothing felt forced.
Harrison, meanwhile, wasn’t terribly cooperative at first.
He had just woken up from napping while we traveled. He wanted a snack. He wanted to get up. He wanted to go do things rather than sit around listening to adults talk.
He’s five, so who could blame him?
The thing was, there was this underlying comfort that made his normal five-year-old restless energy feel far less uncomfortable than it sometimes does as a parent.
Normally, there can be a certain tension that comes with those moments.
As a parent, you feel your attention split.
One eye on your child.
One eye on everyone else.
Is he bothering someone?
Are people staring?
Do I need to explain something?
Should I apologize?
Is someone misunderstanding what he is doing, or why he is doing it?
Sometimes you start preparing yourself before anything has even happened.
That afternoon, though, it just wasn’t there.
Eventually, we moved across the road to Chippewa Square, the same square used as the backdrop for the Forrest Gump bench scenes.
The actual bench isn’t there, but the square and the background seen throughout those scenes are.
More importantly for Harrison, there was room to move.
There, he could just do Harrison things.
He ran around.
I pulled his soccer ball out.
He played with Marty.
At one point, he decided hanging out in the bushes, looking up at the trees, was apparently the thing to do. (And quickly thereafter, Misha agreed.)
We talked.
We took pictures.
The conversations with Misha, Mike, and Marty were completely fluid. Nothing felt forced or out of place. It felt like a group of people we could walk away from, see again six months later, and easily pick right back up where we left off.
Though I will fully admit, I walked away a little jealous that I can’t quite pull off the effortlessly cool vibe that Mike has.
Eventually, Harrison got to do something else we had been looking forward to.
He added his handprint to the Old Lady, aka The AMC Car.
If you’ve followed Misha’s travels, you know that car becomes a moving collection of the people they meet along the way.
Now Harrison is part of it.
There is something incredibly cool about that.
After years of following Misha, after previous attempts that didn’t work out, after watching these annual trips from a distance, Harrison’s handprint was finally there alongside so many other AMCers.
That alone made the afternoon special.
But somewhere during that hour and a half, something else happened that I didn’t completely recognize until afterward.
For the entire time we were together, everything just felt incredibly easy.
It was only after we got back into the car, caught our breath, and Jenna and I started talking about the afternoon that the real weight of that registered with me.
For the first time in a long time, we hadn’t been on defense.
That’s probably the best way I know to describe it.
For most of the past five years, some part of me has always been prepared to defend Harrison.
Sometimes literally.
Sometimes by explaining him.
Sometimes by explaining AMC.
Sometimes by making sure someone understands why he is, or isn’t, doing something they expect a five-year-old to do.
Sometimes it’s dealing with the looks.
Sometimes it’s anticipating the looks before they ever happen.
Sometimes it’s nothing more than that little part of your brain that never completely shuts off because you are constantly aware of how the world around your child is responding to him.
I didn’t realize how much of that I was carrying until, for an hour and a half, I wasn’t.
Nobody needed an explanation.
Nobody needed an apology.
Nobody needed Harrison to perform some version of himself that made more sense to them.
Misha, Mike, and Marty simply saw Harrison.
And there was something incredibly freeing about that.
The timing made that realization hit even harder.
Just days before we met Misha, I had experienced one of the heavier moments I’ve had as Harrison’s dad.
I’ve written about that already.
That was the day on the beach when we overheard people nearby who had been watching Harrison and making assumptions about him based only on what they could see.
Then just a few days later, we were sitting with people where the exact opposite was true.
They didn’t need us to explain Harrison.
They didn’t need background information before they could understand him.
They just welcomed him into the space exactly as he was.
That contrast isn’t lost on me.
It also isn’t the first time this summer that we’ve experienced something like it.
Our trip to Nashville and spending time with Taylor gave us another window into that world.
There was no therapy. No explaining. No expectation.
A month later, sitting in Savannah with Misha, Mike, and Marty, we found ourselves in that same kind of space again.
Maybe that is part of why meeting them carried so much more weight than I originally expected.
I knew meeting Misha was going to be a milestone for us.
I knew there would be emotion attached to finally meeting someone who had been part of our awareness of AMC for essentially Harrison’s entire life.
What I didn’t expect was how comfortable it would feel.
How natural it would feel.
How quickly that sense of familiarity would replace the nerves I had going into the afternoon.
Misha and Marty have lived experiences I will never pretend to completely understand.
Those aren’t my shoes to walk in.
They have an understanding of AMC, and of parts of Harrison’s world, that even as his father I never completely can.
That’s an unusual thing to admit.
It’s also an incredibly comforting one.
They understood Harrison before they ever met him.
There was no briefing required.
No explanation.
No disclaimer.
They already understood.
I hesitate to use the word inspirational, because I’ve never particularly liked when people casually use that word to describe Harrison.
But motivational?
Absolutely.
Misha and Marty are incredibly motivational to me.
Not because of some simplified story about overcoming obstacles, or because I want to reduce either of their experiences to something designed to make the rest of us feel good.
It is because they have lived lives and built communities that show me possibilities.
They have spent years connecting people.
They have created spaces where families like ours can walk in and immediately feel a little less alone.
And Mike is right there as part of that world too, helping make these trips happen, traveling thousands of miles, meeting families, and somehow making all of it look considerably cooler than I ever could.
For five years, there have been days when I’ve wondered what Harrison’s world is going to look like.
Five years from now.
Ten.
Twenty.
There are days when that weight feels enormous.
I don’t write about every one of those days.
I’ve always tried to be careful about what parts of Harrison’s life I share because his story belongs to him. I can write about what it feels like to be his dad. I can write about what I see, what I fear, what I hope for, and what I learn.
There are parts of his story that should always remain his to tell.
But from my side of the story, I can say there are days when this is hard.
That doesn’t diminish how much I love my son.
That love is the center of everything.
Both things can exist at the same time.
I can absolutely adore the kid sitting beside me while still worrying about the world waiting outside the door for him.
Which is part of why meeting people like Misha, Mike, and Marty matters so much.
They didn’t need us to give them instructions for how to interact with Harrison.
They didn’t need him to fit into some expectation.
By simply being who they are, and by understanding the world that brought all of us together in the first place, they created a space where that weight disappeared for a little while.
As his father, feeling that level of unspoken understanding is something I wish I could bottle up and share with the world.
No words could ever truly do it justice.
People who see him.
People who understand him.
People who remind me that the world waiting for my son isn’t entirely the world I’ve sometimes feared it might be.
That is what this afternoon became for me.
But before all of that, and underneath all of that, there is still the simple fact that after five years, we finally got to meet Misha.
We finally got to sit down and talk.
We finally got to introduce her to the kid she had been following since he was tiny.
We got to meet Mike and Marty.
We got to spend an afternoon in Savannah together.
Harrison got to kick a soccer ball around, hang out in bushes, and leave his handprint behind on a car that has traveled thousands of miles connecting people within this community.
What could have simply been a quick meet-up became an hour and a half that none of us were really in a hurry to end.
Five years after first learning Misha’s name, we finally got to meet her.
Her, Mike, and Marty.
I’m incredibly grateful that we did.
And I’m looking forward to the next time our paths cross.
Because I have a feeling there won’t be any nerves next time.
We’ll just pick up where we left off.
Be sure to follow Misha and The Dream Walker Project on Facebook or Instagram, as Misha and Mike are now over in Europe for an AMC Awareness Eurotrip!