Do I know whether anything we’re noticing is from the stem cells, seven hours a day of ABA, regular development, or some combination of all three? Absolutely not. But I’m going to write it all down anyway—partly so I remember and partly so you can gather your own insight into the very strange world of stem cells.

First, Decker is louder than ever.

Not louder in a he suddenly has so much to say way. Louder in a happy, excited, screeching-through-the-house way.

Like, bro. Chill. Why are you making that sound? It’s incredibly annoying.

But if letting that voice fly is how we eventually get something more out of it, have at it, buddy. Scream away.

We’ve also noticed better eye contact, little moments of imitation and more understanding

.

We’ve been doing Ring Around the Rosie, and Decker started saying “baa baa,” so naturally I turned that into “Baa Baa Black Sheep, have you any wool?”

I think I sang it 16 times on the way to school this morning.

Sixteen.

And every single time he was cracking up.

Is that anything? I have no idea. But hearing him make the sound, turning it into a song, and then watching him wait for me to do it again and absolutely lose it laughing felt like one of those little moments I don’t want to forget.

And then there’s sleep.

As everyone knows, Decker loves a middle-of-the-night wake-up sesh. That has not completely stopped. The night after I posted my “fuck him” post, he woke up five times. I was lying in his bed looking at him thinking, Fuck youuuu, Decker. For the love of God, please go back to sleep.

When he wakes up, one of us goes into his room and lies with him until he falls back asleep. Danny and I take turns depending on who is less dead at the time.

But since Panama, he has slept through the night approximately nine times.

NINE.

That may not sound groundbreaking, but for Decker—and for us—it absolutely is.

Then this Monday, exactly one month after stem cells, he suddenly seemed exhausted. He came home from ABA and could barely keep his eyes open. He fell asleep anywhere he could, as early as 5:45, and slept through the night

.

This is a child who does not nap at ABA. He is there for seven hours, working one-on-one all day, so maybe he is simply exhausted. Maybe he is growing. Maybe this is just regular development. Maybe it’s the stem cells. Maybe it’s all of it.

I genuinely don’t know what’s responsible. I just know I’m noticing things.

We were told that any changes from the stem cells could happen gradually over four to nine months, so I’m trying not to analyze every sound, every night of sleep or every tiny new thing he does.

Clearly, I am failing at that.

One month down.

No idea what any of it means yet.

But seven full nights of sleep, more eye contact, a little more understanding and an absolutely obnoxious amount of happy screeching?

I’ll take it.

Full-time, center-based ABA.

This was NOT the plan.

We had planned for Decker to do one more year of Pre-K at Dommerich. We love Dommerich, we’ve had great teachers and assistants, and I liked the idea of him and Lenny getting one more year there together.

I was never particularly blown away by the VPK program, but it was fine. It was close. It was a plan. And in my head, we were going back.

Then the ABA center had an opening.

Of course they did.

For those of you following along, ABA is Applied Behavior Analysis. Basically, it’s therapy focused on helping Decker build skills like communication, independence, following directions and all those little things that are actually VERY BIG things in our world.

Decker also has the Florida Unique Abilities Scholarship, which can help cover approved therapies and educational services.

The catch?

He can’t be enrolled in public school and use the scholarship at the same time.

So I had a pretty quick decision to make.

Another year of Pre-K...

or seven hours a day, five days a week, of one-on-one therapy.

I spent approximately 900 hours thinking about this decision in the 48 hours I had to make it.

Ultimately, the one-on-one won.

And then, because apparently I needed the universe to get involved in my decision-making, I happened to be standing in the lobby of the ABA center when I ran into someone from Dommerich.

She had made the same decision with her son.

She told me how much progress he had made at the center and that, as wonderful as the teachers and assistants at Dommerich are, she really felt this was more impactful for him right now.

Okay.

I’ll take it.

Message received.

So here we are.

Decker is now doing seven hours a day, five days a week, of one-on-one ABA.

And then came his first day.

I sent Danny a video of Decker walking/running into his new school, and he said:

“The amount of videos we have of Decker starting at new schools…...”

And I laughed.

YEAH. I KNOW.

I’m the one doing it. I’m researching schools and therapies, making phone calls, filling out paperwork and making the decisions that keep me up at night wondering if I just made the right one.

When I’m not already awake because our tiny terror has decided sleeping alone is just not for him.

So yeah.

We have a lot of videos of Decker starting new schools.

Because I’m over here trying to figure out what the hell we’re supposed to do next.

And honestly, we’ve done a lot in his five little years.

But for now, this feels right.

They’re already working with PECS and visual cues to help him communicate. They’re working on following directions, independence, eye coordination, keeping his shoes on, potty training and approximately 47 other things.

Would I love for Decker to talk? Obviously.

But communication doesn’t have to start with words. I just want him to have more ways to tell us what he needs—yes, no, hungry, outside, all done, leave me alone.

Honestly, that last one would be a pretty impressive milestone.

And then there is my favorite part:

MY HOUSE IS EMPTY.

After in-home ABA, I didn’t realize how much having therapists in and out of my house affected me, too. Someone was always coming, going, working in the kitchen or living room, and I was constantly trying to work around it all.

Now?

I drop Decker off.

I come home.

And it’s quiet.

I can work. Run errands. Take a phone call. Eat lunch.

Nobody is in my house.

It’s fucking fantastic.

And yes, obviously, this decision was about Decker.

But am I also allowed to be thrilled that the thing that’s really good for him is also really good for me?

Yes.

Yes, I am.

I don’t know what we’re doing next year.

I don’t know how long we’ll do full-time ABA.

I’ve stopped pretending I know what we’re going to be doing six months from now.

Apparently we’re just going to make the best decision we can and figure out the next one when we get there.

And that’s okay.

Because this week, we got a little win.

Decker LOVES gummies.

He will go into the pantry, grab the package and, without opening it, shove the entire thing into his mouth.

If you don’t catch him, he will just keep chewing until he can eventually taste the gummies through the packaging.

This week, I said:

“Decker, give me the gummies and I’ll open them for you.”

And TWO TIMES—maybe three—he brought the package to me and waited for me to open it.

BIG. DEAL.

Is it ABA? The stem cells? Or did he just decide Mom might know what she’s doing?

Who knows.

We’re taking the win.

One little step at a time.

And if those little steps eventually lead to more communication, more independence and a kid out of diapers...

I’ll take it.

I mean. He is just so handsome.

They order the supplies early. Their children’s clothes already fit. They know exactly where to find red composition books.

We are not those people.

It was Monday night before school started, and I had somehow reached the absolute last possible minute before realizing we needed an entire fifth-grade school supply list, back-to-school snacks, and clothes because—after cleaning out everyone’s drawers—it became clear that none of my children had anything that fit.

What had they been wearing all summer?

No idea.

Our evening already included dropping Brecken at swim at 4:30 and Lenny at football at 4:50, followed by a neighborhood kickball game with pizza. But I had about 45 minutes before I needed to start picking everyone back up.

And when you have 45 minutes to kill between children’s sporting events, what else are you supposed to do?

Obviously, you go to Target.

I put Decker in the cart and started feeding him things while attempting to complete an entire summer’s worth of back-to-school preparation in one trip.

First, raspberries.

Then Pirate’s Booty.

I handed him a book, which was optimistic of me, and started hustling.

School supplies. Clothes. Snacks. More school supplies. More snacks.

The cart was overflowing. I threw in pillows we almost definitely did not need. I found no red composition books, and I’m not sure I found any cute clothes.

By the time we reached checkout, there was Pirate’s Booty crushed across the bottom of the cart and a package of frosted oatmeal granola bars being opened because Decker was starving.

I was unloading the cart, trying to pay, and mentally calculating how quickly I could pick up the other boys and get everyone to kickball.

A line was forming behind us.

And that was when Decker started chucking the $7 raspberries I had just paid for out of the cart.

They hit the floor directly in front of everyone waiting behind us and were immediately smashed.

Cool, bro.

The cashier handed me paper towels. I was trying to contain Decker, clean up the raspberries, and get our entire overflowing operation out of everyone’s way.

She may have noticed that Decker was autistic. Or maybe she could just tell he was overwhelmed and I was about two seconds behind him.

Either way, she was so warm and kind.

She looked at Decker and said, “He’s really doing a good job.”

I looked this sweet woman directly in the face and said:

“Fuck him.”

WHAT?

Why did that come out of my mouth?

Kolleen. You are crazy.

Thankfully, she could tell I was stressed, and we both started laughing.

She gets me.

For the record, I love Decker. Obviously. I just apparently had no filter left.

Mother of the year.

We eventually made it to kickball. The parents played for a little while before letting the kids take over, and then the game ended early because of lightning—because of course it did.

#Florida

But the kids loved every minute they had. They ate pizza, rode their bikes and scooters around the quad, and squeezed in the last little bit of summer before school started again.

I am sure I forgot a million things at Target.

That’s fine.

It’s really just an excuse to go back.

But next time, we’re probably choosing a time when Decker doesn’t have to come. 😂

I really wish I had taken a picture, but unfortunately I was too busy living through the disaster to document it.

So I guess it’s time to officially wrap up Panama. And considering the entire reason we flew our family of five to another country was to inject our five-year-old with millions of stem cells, I did not necessarily expect my final review to be: 11/10 vacation. Cannot wait to go back.

But here we are.

We knew going into this that we were going to treat it like a vacation. Decker’s treatments were only a small part of each day and I was not flying all five of us to Panama to sit in a hotel room for the other 23 hours. We wanted to see the country, eat the food, explore, make the most of it. And honestly? We crushed it.

Boat day was obviously my favorite. We had the boat for four hours, which was our biggest mistake because I could have stayed on that thing for eight. I sat in the front feeling like an absolute queen while someone delivered me champagne, simultaneously burning the ever-loving hell out of my butt and acquiring some VERY aggressive tan lines. The boys jumped off the top of the boat, swam, explored, cruised around and got to go through the Panama Canal—which exceeded my expectations by about 1000%. That is just something they will always be able to say they did. How cool is that?

Danny may have a different favorite day. He got to cliff jump with his boys at Los Cangilones de Gualaca, this absolutely beautiful canyon carved into the rock by the Río Estí, and surf with them in the Pacific Ocean at Playa Río Mar, a black-sand beach at Casamar

Like…these are things my kids have done now. That is so cool.

And THE FOOD. My favorite thing I ate the entire trip was not at one of the fancy restaurants. It was $2.75 ceviche from Cevichera La Bendición on our way to Casco Viejo. They handed it to me in what I can only describe as a walk-around cup and I could have eaten seven more. Danny and I were drinking $1.35 Panama Light beers with it. Fine dining at its finest.

Switching hotels halfway through was also 100% the move. I loved getting to experience different parts of Panama and I would absolutely do it again. The kids had pools, food, ping pong tournaments, all-inclusive life and endless shit to do, while Danny and I still had lobby bars, spas, multiple restaurants and places where we could sit and have a drink and feel like actual adults.

But probably the biggest surprise of the trip had nothing to do with Panama.

I realized that when I have more time with my kids…I actually enjoy them more.

Who knew???

At home we are constantly moving. Work, school, therapy, sports, practices, friends, appointments, errands. Someone needs to be somewhere approximately every seven minutes. In Panama, we obviously knew we were going to be together for seven straight days, but I don’t think I realized how much I would love just being with them.

I love taking my kids to fancy restaurants. I love watching them get excited about new things. I love watching Danny entertain them endlessly. I loved watching all five of us explore a new country, new cities, new ecosystems, new hotels, new food. We had actual, uninterrupted family time.

And it was so special.

Oh yeah. And we did stem cells.

The entire reason we were there.

There were IVs, intranasal treatments, one slipped vein that I unfortunately watched happen, and moments where I hated watching Decker have to go through the actual procedure. But there was never a moment where I regretted the decision.

If anything, Panama confirmed for me that I made the right choice for my child.

Does that mean they’re going to work? I have no idea.

But I will never have to sit here wondering what if?

And now comes the part that anyone who knows me knows I am particularly terrible at:

We wait.

If we are going to see changes, we expect to see them somewhere in the 4–9 month range. And those changes can look like a million different things—speech, improved sleep, better behavior, more eye contact, more understanding, communication, progress with potty training.

Please, for the love of God, get this child out of diapers.

But when I really think about what I’m hoping for, it isn’t necessarily some gigantic moment where Decker suddenly starts speaking in full sentences.

I want him to lead me somewhere.

Grab my hand and take me to the refrigerator because he wants something. Use his picture cards to explain himself. Find another way to show us what he wants, what he needs, what he’s thinking.

Things that sound so incredibly small until you have a child who can’t do them.

For us, they would be huge.

And because apparently flying internationally for stem cells is just part of our lives now, we were still IN Panama and I was already asking the boys where we should go next. Tokyo is on their travel list. We’ve talked about Switzerland. I’ve watched two families go to Serbia. Now I’m researching MUSE cells in Mexico.

So no, Panama will not be our last stem-cell treatment.

Treatment number three.

By now, stem cells had become almost... routine.

Another 10 million cells. Another intranasal treatment. Still incredibly cool. Still wondering if anyone would notice if they accidentally gave Decker 100 million instead.

The best part?

It was uneventful.

One of the things I appreciated most about staying at the Hilton was just how easy they made treatment. We’d head down to the lobby, walk over to another bank of elevators, ride up to the 63rd floor, spend about 30 minutes at the clinic, and then head right back downstairs to continue our day.

For something that felt so overwhelming before we arrived, treatment had quietly become part of our normal routine.

As amazing as the Hilton was—and honestly, it couldn’t have been more convenient—I knew I wanted more out of this trip.

Some of the families we met treated Panama as exactly what it was—a medical trip.

Hotel.

Clinic.

Hotel.

Repeat.

And I completely understood why.

When you’ve invested this much money, hope, and emotion into your child, it’s easy to let everything else fade into the background.

But that wasn’t what I wanted for us.

If we were flying our family of five to Panama, I wanted Decker to get every stem cell they were willing to give him.

But I also wanted all three boys to remember Panama as more than clinics, elevators, and IVs.

So after Thursday’s treatment, we packed up, loaded the bags, and headed to the Westin Playa Bonita for the rest of the week.

Best. Decision. Ever.

Don’t get me wrong. We LOVED the Hilton. The boys were curious why we would even leave but the whole pace of the trip changed the minute we pulled in.

Palm trees. Ocean views. The sound of waves instead of traffic. The kind of place that makes you instinctively take a deep breath.

The pools were huge. The beach was beautiful. There was a playground for Decker.

And then there were the tides.

Nobody warned me that Panama’s Pacific coast is this dramatic.

One minute the ocean was practically at our feet.

A few hours later it had retreated so far that it completely transformed the beach, uncovering giant rocks, tide pools, shells, tiny crabs, and all kinds of things that had been hiding underwater just hours before.

And then there was the all-inclusive.

Listen...

If Danny’s paying for unlimited food and drinks, the Hogans are getting our money’s worth.

Buffet?

Absolutely.

Steakhouse?

We’ll take a reservation.

Asian restaurant?

Twist my arm.

Unlimited gourmet ice cream in the lobby?

Say less.

Espresso martinis from Michael at the lobby bar?

Elite.

Spicy skinny margaritas from Aaron at the pool?

Also elite.

I still can’t believe Danny never ordered a frozen banana daiquiri the entire trip. If there was ever a place to do it, this was it.

We skipped reservations that first night and crushed the buffet instead because sometimes that’s exactly what vacation calls for.

The first night at the buffet, I was doing my usual Decker food negotiations. Sometimes the only way I can get him to try something new is to... lovingly insist. 😂

Usually, I have to get it past the “nope” stage, and then suddenly he realizes, “Wait... this is actually good.”

So while I was busy trying to convince him to try something new, he reached over, grabbed the edge of the placemat, and gave it one good yank.

Margarita.

Straight into my lap.

The boys gasped.

I looked down, realized I was already a couple margaritas deep, and burst out laughing.

Before I could even process what had happened, our sweet server appeared with towels, a huge smile, and—most importantly—a fresh margarita.

She didn’t make me feel embarrassed for a second.

An absolute angel.

Can I put her in my pocket and take her everywhere with me?

The stem cells were the reason we came to Panama.

But somewhere between clinic visits, changing hotels, exchanging stories, tide pools, ping pong challenges and some margaritas...

Panama became something more.

It became a week where our family slowed down.

Where the boys made memories they’ll talk about long after they’ve forgotten which hotel we stayed in.

Where Decker smiled more than I expected.

And where I realized that some of the most meaningful parts of a healing journey happen between the appointments.

We came to Panama hoping to help Decker.

The stem cells were always the reason.

But I don’t regret for one second making room for boat days, beach days, tide pools, ice cream, and a few spicy margaritas along the way.

If you’re going to fly your family across the world chasing hope...

You might as well make some memories while you’re there.

I didn’t realize how many people were following along until I started getting messages asking where the next update was. 😂

I’ve been a little busy... you know... actually living the trip, flying home, unpacking, drowning in laundry, catching up on real life, and remembering I typically need a recovery day after a return instead of jumping right back in.

So, here we go.

At 6:45 a.m. last Wednesday, while checking on the boys in their room, Lenny pops his head up and proudly announced, “IT’S BOAT DAY!”

It sure was.

We had planned a day on the water to break up the routine of treatments and pool days at the hotel. But first... breakfast and another trip to the clinic.

Today’s treatment was another 12 million stem cells through IV. By the end of the week, Decker will have received a total of 60 million stem cells. It’s kind of wild to say that out loud.

No intranasal cells today, which gave me the perfect opportunity to ask more questions about them. I learned that the intranasal treatment isn’t actually the stem cells themselves—it’s smaller therapeutic cells associated with the treatment that are able to bypass the blood-brain barrier through the nasal cavity. Science is pretty incredible, and naturally my first thought was... Should we have done more of those? 😂

By now, the clinic was starting to feel familiar. We’d gotten to know some of the other families and patients, and I had made it my personal mission to practice my daily Spanish with the receptionist. Lucky her.

Treatment done.

Boat time.

On the way to the marina, our driver spotted a sloth and immediately pulled over so the boys could see it. It was such a simple gesture, but it perfectly summed up the kindness we’ve experienced everywhere we’ve gone in Panama.

The rest of the day was exactly what we all needed.

Swimming. Snorkeling. Sunshine. Salt air.

We didn’t actually go through the Panama Canal, but we cruised right over it while our captain taught us how the locks work and pointed out the massive cargo ships waiting their turn. Brecken even got to hop behind the wheel and grab the radio, which may or may not have been the highlight of his entire trip.

One thing I had no idea about? Dozens of cargo ships sit anchored offshore, waiting to transit the canal or have maintenance done. Looking out across the bay, it almost felt like a giant floating parking lot filled with ships from all over the world.

Lunch on the boat was unforgettable—whole fried fish, shrimp ceviche, octopus in garlic and lemon, plantains, yuca... and, because Panama apparently understands Americans, hamburgers and fries for the boys.

We stopped at Taboga Island, known as the “Island of Flowers,” and immediately agreed we’ll be back. Next time, though, we’re making it all the way out to the Pearl Islands... maybe even for an overnight adventure.

The stem cells are why we came to Panama, but the ocean was where Decker really came alive.

Fresh fruit. Salty air. Sunshine. And me throwing him into the ocean over...

and over again.

Every time he’d pop back up with the biggest smile, ready for one more toss.

Those laughs were the best sound I’d heard all week.

By dinner, we were all running on fumes. The boys wanted me to finally experience the restaurant they’d been raving about the night before, and I wasn’t about to turn down an espresso martini and a five-star meal.

One thing we are noticing is that Decker seems a little more tired after treatment. Even after a boat nap, he was ready to fall asleep at the table.

So we called it a night.

Before coming to Panama, I pictured this trip being all about stem cells. What I didn’t expect was how much of it would be about the moments in between.

Today’s takeaway: We came for the stem cells. We left the boat with something we needed just as much—a really good day together. ❤️

Okay, so now I’m two days late posting this. Shocking, I know. Our days are a little busy here!

Tuesday I wrote my Day 2 stem cell recap and, honestly, it bored me so I never posted it.

Not because it wasn’t important. Trust me, injecting your five-year-old with 16 million stem cells while you and your husband pin him down pretending everything is totally fine... that’s a pretty significant part of the day.

Also...

Can we all just acknowledge for a second how absolutely insane that sentence is?

“We’re going to Panama so strangers can inject our son with stem cells.”

If you had told me five years ago this would be our life, I probably would’ve called someone.

And yet...

Here we are.

Completely convinced this is the right thing for Decker.

The stem cell treatment is why we’re here. It’s the reason we packed passports, three kids, bathing suits, and enough snacks to survive any sort of meltdown and flew to Panama City... the country of Panama. (Apparently that still needs clarification.)

But here’s the thing...

The stem cell appointment lasts about an hour.

What about the other 23?

Because life doesn’t stop just because you’re here for medical treatment.

Sunday

We landed in the middle of an absolute downpour.

Within an hour I was already texting people, “This place is beautiful.”

Huge skyline.

Beautiful hotel.

The nicest staff.

It didn’t feel clinical.

It felt... hopeful.

We fully committed to vacation mode.

Pool bar drinks.

Lobby burgers.

Happy kids.

Exhausted parents.

Travel days hit differently when you’re carrying the emotional weight of why you’re actually traveling.

Monday

Danny’s birthday.

One he definitely won’t forget.

Decker and I headed upstairs for stem cells while Danny got rare, uninterrupted time with the big boys.

Honestly?

They all deserved it.

By afternoon we reunited at the pool before heading to Casco Viejo.

Colorful streets.

Little cafés.

Rooftop restaurants overlooking the bay.

Brecken, meanwhile, couldn’t have cared less about the views because he had his ship tracker open, identifying every vessel making its way through the Panama Canal.

We squeezed in a couples massage while the boys hung out, and the spa staff surprised Danny with birthday cake.

Then...

Night swimming.

Hot tub.

Our favorite parenting strategy:

Exhaust the children.

Mission accomplished.

Once everyone was asleep...

We snuck downstairs to the casino.

A friend told us to put money on Decker’s birthday at roulette.

It hit.

Then somehow...

A few very conservative blackjack hands later...

We walked out ahead.

Tuesday

Our least scheduled day.

Breakfast.

Stem Cells. Another day, another adventure. Needed a couple of extra pricks today, and the intranasal infusion was a real doozy!

Workout.

Pool.

World Cup in the lobby.

Decker crashed after all of that.

Cold sweats.

Completely wiped out.

His little body basically saying,

“Guys... I just need a minute.”

Danny took the big boys to the fancy Italian restaurant while I stayed back in a dark hotel room holding a sleeping little boy who hadn’t eaten in forever.

No complaints here.

Wednesday is BOAT DAY! We are very much looking forward to an easy infusion and then off to the water.

Some moms were dressed head to toe in diamonds and Rolexes. Others looked like they’d rolled straight off an overnight flight. Didn’t matter. Every single one of us had ended up on the 63rd floor of a building in Panama because we’d all asked ourselves the same question:

What if this helps?

I know how much money families spend to get here. I know how much research happens before anyone books a flight. I know nobody wakes up one day and casually decides, “Let’s go to Panama for stem cells.”

You end up here because you’ve run through every possibility and you still can’t shake the feeling that maybe… just maybe… this could be one more thing worth trying.

The waiting room was almost funny.

Nobody was talking.

Every parent was pretending to scroll their phone while secretly checking out everyone else’s kid.

I’m sitting there thinking…

Seriously? Nobody’s going to break the ice?

Is it going to be me?

Obviously.

“So… where are you guys from?”

Louisiana.

New Jersey.

Well… originally Ireland, now New Jersey.

Orlando.

Just like that, the room changed.

A little girl, five years old, sat quietly with her baby bottle. Another little guy kept answering every time the receptionist called his name, convinced they were talking to him. We all laughed. The kind of laugh that sneaks up on you after carrying around so much stress.

Within minutes we were talking about therapies, flights, diagnoses, siblings, and life.

Not because we needed advice.

Because we already understood each other.

No long explanations.

No awkward looks.

No one wondering why a five-year-old isn’t talking yet.

Just parents trying everything they can for their kids.

Not a bad view for a blood draw!

The doctor came in with his standard speech.

The risks.

The expectations.

The reminder that there are no guarantees.

Meanwhile, I’m thinking…

I love you, but I’ve done my homework.

I didn’t fly internationally because of an Instagram reel.

I’ve read the studies. I’ve read the success stories. I’ve read the stories where nothing changed. I’ve spent months trying to decide if this was the right choice.

The questions I wanted answered weren’t on his checklist.

What have you actually seen?

Have you watched kids come back year after year and make incredible progress?

Have you witnessed moments that still surprise you?

Or has this simply become another day at work?

Maybe there isn’t a perfect answer.

Maybe there can’t be.

All I know is this…

Nobody promised us a miracle.

We came because if there’s even a chance this helps Decker, we need to know we tried.

Decker blew two veins during his blood draw.

I held him down.

He cried.

Ten minutes later?

He was back to being Decker.

Like nothing had happened.

While I was upstairs, Danny had the big boys downstairs doing exactly what needed to happen—breakfast, a workout, and the hotel pool.

Tomorrow we’ll switch.

He’ll take Decker upstairs.

I’ll take Brecken and Lennox downstairs.

It’s how we’ve learned to survive this life.

Divide and conquer.

Later this afternoon, we ran into the Orlando family again in the Hilton elevator. Their child could not wait for his moment in the hotel pool. Why would his parents make him change into a bathing suit??

Funny how people who were complete strangers this morning already felt familiar.

Tonight we celebrated Danny’s birthday.

Not exactly the birthday we would’ve planned.

But maybe one we’ll never forget.

Tomorrow is the infusion.

Tonight, we’re just another family in Panama… hoping.

.

We’re packing up a family of five and heading to Panama.

Yes, it’s for stem cell treatment for Decker. And yes, we’re making a vacation out of it too. We’ll hit the beach, go fishing, and if all goes according to plan, consume approximately a frozen dozen drinks and a few spicy skinny margs.

Over the last few weeks, everyone keeps asking me the same question when Panama comes up.

“What are your expectations?”

It’s a fair question.

And honestly?

I don’t really have any.

That probably sounds strange after all the research, the planning, the money, and literally flying to another country.

But the truth is, we’re not going because someone promised us a miracle.

We’re going because...what if?

What if it helps him talk a little more?

What if therapy starts clicking a little faster?

What if he’s a little less frustrated because he can finally tell us what he wants?

And if none of that happens?

We’ll come home, unpack six suitcases, do approximately 47 loads of laundry, and keep showing up for him like we always have.

Because that’s what parents do.

One thing I’ve realized since starting this Substack is that it forces me to actually stop and think about what we’re doing.

Most days, we’re just living. Another work day. Another therapy appointment. Another lacrosse game. Another Amazon package Danny swears we didn’t need.

Life moves so fast that I don’t always stop to ask myself why we’re doing all of this.

Writing makes me.

It forces me to sit with the hard questions instead of just checking another thing off the list.

And when I really thought about it, I realized something.

Of course I want him to talk.

Of course I hope this helps.

But while sitting in my car in front of 7-11 running in for the necessary White Monsters on this Saturday morning I realized underneath all of that...

I just want his life to be easier.

Because I think that’s what every parent wants for their own children, isn’t it?

Whether your child has special needs or not, we all just want our kids to have a good life. We want life to be a little easier than it was for us. We want them to be happy.

The hardest part of this journey isn’t therapy.

It isn’t the appointments.

It isn’t even the travel.

It’s the not knowing.

Not knowing what his future looks like.

Will he talk?

Will he have close friends?

Will he be independent?

Those are the questions that creep in when the house is quiet.

But then I started thinking about Decker.

He isn’t sitting around worrying about college.

Or careers.

Or whether he’ll ever drive a car.

He’s worried about finding the biggest wave at the pool, stealing snacks, climbing on furniture, and convincing someone to turn on Ms. Rachel for the umpteenth time.

He’s already living his life.

Maybe I’m the one getting ahead of myself.

So no.

We don’t really have expectations.

We have hope.

The quiet kind.

The kind that says, “Let’s give him every opportunity we can.”

We’ll cross oceans.

We’ll spend the money.

We’ll try the things.

Not because we’re chasing perfection.

Because we’re his parents.

And if there’s even the smallest chance something could make his life a little easier, we’ll take it.

Tomorrow we’re boarding a plane with three boys, six suitcases, enough snacks to feed a small country, and a whole lot of hope.

I’ll be sharing everything while we’re there—the treatment, the family chaos, the wins, the disappointments, the beach days, and probably more pictures of spicy skinny margs than anyone asked for.

Here’s to hope, good memories, and giving our little guy every chance we can

.

Not because I think everything was better back then.

I mean, we didn’t have tablets in the car, so let’s not pretend it was all magical. We suffered. We stared out the window. We asked how much longer until our parents questioned every life choice that led them to that exact highway.

But the summers I remember most were simple.

We drove to Maryland and stayed with family.

That was it.

No packed itinerary.

No apps.

No downloaded movies.

No one screaming that their charger was at 2%.

Just cousins, outside games, late nights, and the kind of boredom that eventually turned into something fun because there was no other option.

And for me, the memory that always comes back is Ghost in the Graveyard.

My cousins were older than me, but they always let me play.

They jumped in.

They entertained me for hours.

They took me hiking and, when I inevitably could not hang, carried me the rest of the way.

And knowing myself, I’m sure I was more than annoying.

Actually, I’m positive.

But they loved me anyway.

They made room for me.

They made me feel like I belonged.

And that feeling sticks with you.

This summer, in the middle of all our chaos, we visited my mom’s sister.

And yes, I know you’re reading this.

I learned so much from her.

I love her with everything I have.

She is, hands down, one of my favorite people.

I always wanted to be a mother and a caretaker like her.

Does she serve oysters and champagne at 4:00 p.m. while prepping Thanksgiving?

You betcha.

Does she use placemats at every meal?

One hundred percent.

Has she raised incredible children who are now incredible adults?

Yep.

And those incredible children were the ones who played Ghost in the Graveyard with me.

The ones who made room for me.

The ones who carried me when I couldn’t keep up.

And now their kids are doing the same thing for mine.

That is the part that keeps getting me.

Because this summer has been a lot.

Since Memorial Day, we have basically been in a constant cycle of packing, traveling, unpacking, doing laundry, repacking, and leaving again before anyone can ask where their toothbrush is.

New Smyrna.

ChampionsGate.

Pompano.

Savannah.

Myrtle Beach.

Washington, D.C.

Great Wolf Lodge.

Sleepaway camp.

Heading to the beach now.

And then back next week to prepare for Panama.

Here’s the evidence that we have, in fact, been living out of suitcases since Memorial Day.

_{Music has an aggressive beat but I didn’t feel like editing again. Deal with it. Listen for the laughs on the water slide.}

I don’t know if we live in our house anymore or if we just use it as a very expensive laundry room between trips.

And the laundry is where I really start to spiral. I need to unpack immediately. I don’t understand you people that hold it in your suitcase for days/ even weeks. I may be major type b and have an “interesting” way of packing but that is truly unhinged.

Because do you ever unpack a suitcase and realize half the clothes were never even worn, but they were touching the dirty clothes, so now they all have to be washed?

And then you’re standing there thinking, what the hell were you people wearing the entire trip?

I know it was a choice to put the bigs in charge of their own packing and suitcases this year, but at some point they do need to figure it out.

My current standard is very reasonable:

Please pack two shirts with collars and two nice pairs of shorts.

That’s it.

That’s the bar.

And somehow my kids still wear the same Nike shorts for four straight days.

We had one road trip that was supposed to be eight hours and turned into ten because of weather and traffic.

By hour nine, everyone was feral.

Then we stopped at Buc-ee’s.

And honestly, Buc-ee’s might be who I am deep down.

A wild, chaotic ride full of good stuff, questionable choices, snacks no one needs, and ample space and time to judge other people’s road trip outfits.

Because some of these outfits?

PEOPLE.

You are in PUBLIC.

We walked in stressed and rushed because it was the WORST traffic and the heavens were about to open up on us, and twenty minutes later I was like, you know what? Get whatever you want.

Beaver nuggets?

Fine.

Giant drink?

Fine.

Random sweatshirt?

Sure.

A snack no one has ever heard of?

Add it to the cart.

Buc-ee’s makes you forget who you are.

My only regret is not buying the giant Buc-ee’s bucket, because in hindsight it would have been perfect for dunking my kids’ heads in ice water before 8:00 a.m. lacrosse games.

Not in a concerning way.

Just in a “wake up, champions, it is already 94 degrees and your mother did not drive ten hours for you to jog lightly” kind of way.

And yet, somewhere in the middle of all of that — the tournaments, hotels, traffic, public waterparks, laundry, and what-the-fuck-are-we-doing moments — I kept noticing these little glimpses of the summer I had.

Not the exact same one.

Because let’s be clear, my children absolutely had tablets in the car.

This is not 1994 and I am not a hero.

But the feeling was there.

The cousin feeling.

The “you belong here” feeling.

The “someone older than you still thinks you’re worth playing with” feeling.

My cousin’s kids jumped right in with my kids.

Basketball.

The park.

The zoo.

Offering to meet us at the National Mall.

Helping with Decker.

Including him without making it a whole thing.

Because when you have a child who sometimes needs people to make a little extra room, and then someone just naturally does it, you don’t forget it.

You don’t forget the people who don’t make it weird.

You don’t forget the kids who hold his hand, help him keep up, or simply let him be part of the group in whatever way he can.

And I realized that maybe this is what I’ve been chasing.

Not the same childhood I had.

Not the same summers.

Not the same version of simple.

But the same feeling.

Being loved by people who make room.

Being included even when you’re younger, louder, slower, needier, or more annoying.

Being carried when you can’t make it the whole way.

Literally or otherwise.

And my kids have been so good this summer.

Not perfect.

Please. Let’s not ruin the credibility of this post.

But good.

Resilient.

Helpful.

Kind.

Mostly decent in restaurants.

Willing to be dragged from car to hotel to field to restaurant to car to field to hotel again.

At Great Wolf Lodge, I was forced to be actual fun.

I went in with the mentality. “I’m a fun mom!”

Real fun.

Slides.

Pool.

Wet hair.

Public indoor waterpark water touching my body.

Fucking gross.

But Decker was squealing.

Lenny made a new friend.

Brecken was fearless on the slides.

And I had one of those irritating mom realizations where the thing I was dreading was probably the thing they were going to remember forever.

So yes, I am tired.

Yes, I have washed clean clothes because they were suitcase-adjacent to dirty socks.

Yes, I have spent too much money on hotels, snacks, gas, and Buc-ee’s nonsense.

But I’m also really grateful.

Because maybe this is their version of Ghost in the Graveyard.

Maybe it doesn’t look like mine.

Maybe it has tablets and lacrosse bags and hotel elevators and Buc-ee’s receipts and missing socks.

But it also has cousins.

And road trips.

And water slides.

And beach sand.

And people making room.

And three kids who keep surprising me with how well they can roll with the chaos.

This is the kind of summer I need to make a book out of.

Not a perfect book.

A messy one.

A sweaty, sandy, overpacked, tablet-charged, cousin-filled, what-the-fuck-are-we-doing kind of book.

The kind we can flip through one day and say:

Remember that summer?

The one where we never stopped moving?

The one where everyone was tired, but everyone was together?

The one that somehow felt a little bit like the old Ghost in the Graveyard days?

That one.

That was a good one.

And now we pack for Panama.

So obviously…

Who’s ready for that update?

And before I go any further, ABA stands for Applied Behavior Analysis.

Because once you become a special needs parent, you start throwing around acronyms like a lunatic and forget that most normal people have absolutely no idea what you’re talking about.

ABA. IEP. OT. PT. SLP. AAC. BCBA.

Just a casual Tuesday alphabet soup.

So, ABA is basically a therapy approach that works on things like communication, behavior, daily living skills, social skills, and helping kids learn new skills in a structured way.

That is my very unofficial mom explanation. Please do not cite me in a medical journal.

A few months ago, I was trying to decide what kind of ABA therapy Decker should do.

In-home?

Center-based?

A combination?

I asked parents. I asked therapists. I asked Facebook groups. I asked doctors.

And, as expected, every single person gave me a different answer.

I was originally planning on center-based ABA. Then someone told me in-home was better because the therapist could work on real-life skills in his actual environment.

Makes sense.

Then our developmental pediatrician said center-based would probably be better for Decker because it would give him more opportunities for peer interaction and structured learning.

Also makes sense.

By that point, though, I had already scheduled in-home because honestly?

It seemed easier.

And when you have a child with extra needs, sometimes “easier” wins.

So here we are.

We’ve officially started ABA.

And by the end of the first week, I still had no idea if ABA was the magic answer.

But I did know this:

I was officially trapped in my own house.

Some days, therapy started at 8:00 a.m. and didn’t end until 6:00 p.m.

There were therapists coming in and out, dogs here because we were dog sitting, and people I had never met before asking me to explain Decker all over again.

His likes.

His dislikes.

What works.

What doesn’t.

What he is trying to communicate.

Why he is suddenly opening the door to my office while I’m on a work call, climbing into my lap, and refusing to leave until I take him exactly where he wants to go.

Which, to be clear, is not ideal when you are trying to sound professional on a call.

The therapy happens everywhere.

Kitchen.

Living room.

Playroom.

Random corners of the house I thought were private but apparently are now part of Decker’s treatment plan.

On one hand, it’s helpful.

I’m actually sitting behind my computer getting work done while someone works on pointing, communication, turn-taking, and all the things we’re supposed to be working on.

I answer emails.

I make dinner.

I clean out the refrigerator.

Once or twice I’ve even snuck in a shower and hoped nobody judged me.

So, if I’m looking for the light, I guess that’s it.

On the other hand…

I don’t know that I love having people in my house all day.

There is this weird pressure to be “on.”

Do I make small talk?

Do they want to talk?

Do I disappear?

Do I look like a disaster?

Am I supposed to be participating?

Observing?

Learning?

Hosting?

Offering a snack?

Pretending my house is always this clean?

Honestly, I have no idea.

And by 4:00 or 5:00 p.m., I have started to wonder:

Is it inappropriate to pour a glass of wine while ABA therapy is happening in my house?

Or tequila?

Honestly, don’t answer that.

Some therapists are lovely.

Some are great with Decker.

Some I can’t wait for them to leave.

And I know that probably sounds terrible, but I also know it has to be awkward for them too.

They are walking into someone else’s home, trying to connect with a child they’re still learning, while the mom is half-working, half-listening, half-pretending she is not hiding in her office.

That’s three halves, but you get it.

And then there is the bigger question.

How am I supposed to know if this is working?

Because every therapy we’ve ever done comes with the same disclaimer:

“Give it time.”

But sometimes I watch what they’re doing and think…

I’ve been doing this for years.

We’ve been modeling language.

We’ve been encouraging pointing.

We’ve been narrating activities.

We’ve been prompting communication.

We’ve been trying to get him to show us what he wants without him assaulting Alexa, the pantry, or the refrigerator.

I don’t spend my days ignoring my child.

I’ve been trying.

Really hard.

For a really long time.

So when someone tells me for the 4,000th time to encourage him to point at something he wants, a tiny part of me wants to say:

You mean the thing I’ve been doing since 2021?

Cool cool cool.

Of course, I can also see that the therapists care.

I can see that they’re trying.

I can see that they genuinely like kids and want to help.

And maybe that’s why I’m struggling.

Because I don’t think my skepticism is really about them.

I think it’s about the fact that every decision in this world feels so important.

If I choose the wrong therapy, am I setting him back?

If I choose the wrong schedule, am I missing something?

If I stick with this too long, am I wasting time?

If I quit too early, am I giving up on something that could help?

And yet, there were wins this week.

Small ones, but real ones.

The fork was a big one.

Before this week, holding a fork was hard for Decker. His hand wasn’t strong around it, and it would kind of flop. You had to wrap his hand around the fork and guide it.

But after a few days, he started reaching for the fork and pulling it toward his mouth.

That may not sound huge to everyone, but if you know, you know.

That’s huge.

Alexa has also survived a little better this week.

Usually Decker treats Alexa like an ADD DJ, switching songs every half a second until everyone in the house is slowly losing their will to live.

But this week, the swiping wasn’t quite as bad.

Progress? Maybe.

A miracle? Not yet.

But I’ll take it.

And then there was the therapy nap.

One day, Decker had already had two other therapists before his afternoon session. He was working with a dinosaur book, practicing finger pointing, and apparently decided he had simply had enough.

He put his head right down and was OUT.

Completely asleep.

Honestly, same.

The therapist gave him a little 15-minute nap and then he was back up and ready to go like a tiny overworked executive who just needed to rest between meetings.

So, where do I land today?

Honestly?

Jury’s still out.

I don’t know if ABA is the answer.

I don’t know if in-home is better than center-based.

I don’t know if the summer group program makes more sense.

I don’t know if we’ll do ABA or school or both or neither or some chaotic combination that requires a color-coded calendar and a mild emotional breakdown.

But I do love seeing Decker reach for a fork.

I do love seeing even a tiny bit less Alexa chaos.

I do love knowing people are trying to help him.

And I do love that even in the middle of the exhaustion, there are these little moments where I think:

Okay.

Maybe something is happening here.

Not fireworks.

Not a miracle.

Not some dramatic overnight transformation.

Just a fork.

A dinosaur book.

A 15-minute nap.

And a little boy who keeps showing us that progress usually shows up quietly.

So yes, the jury is still out.

But I’m listening.

And I’m trying.

Just like every other parent navigating this world.

I’m making the best decision I can with the information I have today.

And if there’s one thing special needs parenting has taught me, it’s that sometimes that’s all you can do.

Make the next best decision.

Then make another one.

And hope somewhere along the way you’re getting it more right than wrong.

If you’ve done ABA, I’d love to know:

How long did it take before you knew whether it was helping?

And did you ever get used to having people in your house all day, or are we all just pretending that’s normal?

Today was a
“ok I’m just gonna move around and see what happens”
day.

Believe me—I tried.

I opened tabs.
Moved things around.
Clicked. Reclicked.
Looked at my calendar like it was going to inspire me.
Opened my email. Closed my email. Reopened it like something new might magically appear.

Nothing.

Like the lights were on but absolutely no one was home.

So I was like…
ok. we need to move.

Because clearly sitting here pretending to work is not going to get the juices flowing.

Dog to the vet.
Nail fixed. Priorites.
Lunch with my dad. Because I’m nice.

Then I ended up in Marshalls because it was RIGHT THERE and I’m weak. Just a quick little walk through- no harm here.

Somewhere in the middle of all this I was leaving for drop off, glanced at my front porch… and got annoyed.

Like instantly.

And I was like
ok.
ChatGPT can help here because clearly I’m not solving this on my own.

Also—Christy 👀
you have not circled back and I KNOW you read this.
We’re not going to pretend.

Anyway.

Within 30 seconds the diagnosis was:
it’s the hose.

And then… it wasn’t just the hose.

It was the plants.
The lack of planters.
The lighting.
The fact that it probably needs a full pressure wash.
Should the bushes go??
Do I need a palm tree??
A water feature??
A sitting area???

Whoa whoa whoa—
ChatGPT… relax.

Give me a cost-efficient, quick fix.
You should know me better than this.

The hose is ruining everything.
Just out there. Exposed.
Absolutely disrespecting the entire porch.

So I went to Lowe’s and bought a hose holder.

Did I also look at expensive planters?

Yes.
Did I buy them?

No.

Not because they weren’t in my cart—
they absolutely were.

But the second those babies got scanned I was like…
weeeellllll, let me check Amazon first.

I can always come back.

Sir—
please remove the planters from the situation.

Thaankkkss.

Growth.

BUT WAIT.

Because this day had absolutely no business escalating the way it did—

The credit card I didn’t even know I lost on Saturday?

Recovered.

By a literal stranger… who found me through my Substack.

I’m sorry—what??

Like I just casually went and picked it up from her house??

Misty.
If you’re here—
I appreciate you. Truly.

THANK YOU.

Also—because this feels important—
I FOUND MY DEBIT CARD.

Well, technically yesterday.

In the front pocket of Decker’s backpack…
that he’s been using… for over a month.

Because where else would it be, honestly.

The one I lost the first week of March.

It’s May.

So just to recap—

• Losing cards left and right ✔️

• Making zero effort to solve it ✔️

• Casually running errands ✔️

• Everything resolving itself anyway ✔️

I guess I am crushing it.

Just not in a way I could confidently recommend to others.

And honestly?

That feels right.

Somewhere in all of this—
I did, in fact, talk to clients, coworkers, and candidates.

Just… significantly less exciting than everything else.

it’s fine.
i’m fine.
everything’s fine.

I have to admit—she’s definitely cuter.
Now… can I execute? Eventually.

WE ARE DOING IT.
WE ARE BOOKED.
WE ARE GOING—AS A FAMILY.

Like… hallelujah.
Kolleen made a decision and actually executed.

Huge for me.
Because I’m usually more of an “ideas” girl than a “follow-through” girl.

So yes—yesterday I went full deep-dive mode.
Research, testimonials, accommodations, FAQs… all of it. I want to make sure this is the right decision for us, for Decker.

I even connected with another mom who has researched stem cells all over the world— like… India/Serbia level committed.

Turns out I never responded to her (put it on my to-do list for today!)

And this right here?
This is what people don’t always see.

The hours of research.
The conversations.
The comparing clinics across countries.
The second guessing.
The “are we making the right call?” loop on repeat.

There are parents out there doing this all over the world—
sharing what worked, what didn’t, what they wish they knew.

We are a village.
And I am so, so grateful for it.

Because I promise you—
no one is making these decisions lightly.

And somehow…
Panama just kept coming back as the right choice for us.

So I emailed Brittany at SCI—
put the deposit down,
and here we are.

They make it really easy too—everything’s connected, transportation handled…
basically just need to make sure our passports aren’t expiring
(something I should probably check 🙃).

We’re going to see the Panama Canal,
do a family boat day through semi-untouched islands,
ride through the rainforest looking for sloths and monkeys…

and spend way too many hours in the pool.

(I will be a cool mom and get my hair wet…
and try not to document every second of it.)

I’m also on the waitlist for a September 8th intensive in Boston—
which is 7 weeks after stem cells so like…

that’s basically perfect timing, right?

Right.

Maybe this is exactly what we need.

A break from life.
From schedules, work, lacrosse… all of it.

Because I know this:

Danny and I will never forget this trip.

And I’m pretty damn sure my kids won’t either.

I should book hair appointments more often.

Because sometimes I don’t have the bandwidth to
read it, rewrite it, edit it, pick a picture, figure out what the algorithm gods want from me…

…it’s a whole thing.

But today, sitting in the hairdresser’s chair, I went back and started rereading some of them.

And this one?
It hit.

Like… cue silent tears while someone’s foiling my hair and pretending not to notice.

___________________________________________________________________

7:57am.
The paper bag project is technically… done.

There may be lowercase i’s.
There are definitely missing periods.

But it’s done.
And it’s in the backpack.

And honestly?
That feels like a win.

Probably because last night—8:40pm—
after one sweet child of mine was out roaming the neighborhood, ding dong ditching like it’s 1997 (honestly, proud of that)—

he walks in starving.

While I’m making him pork tacos with a side of grilled ahi tuna- I look at him and go:

“LENNOX… your paper bag project is due TOMORROW.”

The same project I’ve been trying to get ahead of for two weeks.
The same one we were definitely going to finish over the weekend.

But… life.

(Stay tuned, the Stanley Steamer-level chaos post is coming.)

And rereading this thing I wrote a month ago?
Yeah. It all clicked.

There’s something I didn’t say out loud before.
Because it feels… unfair to say.

But it’s real.

⸻

While we’re over here making massive, life-altering decisions for one child—
therapies, travel, stem cells, all of it—

there’s another one of mine who is… not okay.

And not in the obvious way.

It’s not diagnosable.
It’s not something people rally around.

It’s just…
anger. attitude. meltdowns over things that feel so stupid in the moment.

⸻

Like today.

He’s mad. At everything.
School isn’t going great.
He’s snapping. Pushing. Testing.

He shattered his brother’s Legos.
Just… destroyed them.

Took off on his bike like the world owed him something.

And I’m standing there like—
what the fuck, bro?

I am barely keeping this entire operation afloat.
Why are you making this harder?
Why can’t you just… help me?

⸻

And then almost immediately—
that flip. That gut punch.

Because I know exactly what this is.

⸻

He’s not trying to make my life harder.
He’s trying to tell me something—

with absolutely zero emotional regulation
and no idea how to say it out loud.

⸻

Because here’s the truth no one really prepares you for:

When one child needs more,
the others feel it.
Even when they’re like, “I’m fine.”
(hmm wonder where they learned that little trick…)

Even if you’re doing everything you can to balance it.
Even if you’re a really good mom.

They feel the shift.

⸻

And what does that look like?

Not sadness.
Not “Mom, I miss you.”

No.

It looks like:
• breaking things
• pushing boundaries
• being “disrespectful”
• caring deeply about something like… a stupid electric scooter

Because it’s not about the scooter.

It’s about control.
Attention.
Being seen.

⸻

And I see him.

That’s the hardest part.

I see him so clearly because…
I am him.

That fiery, emotional, “too much” energy.
The one who feels everything big and doesn’t know where to put it.

⸻

But here’s where it gets really hard to admit:

Even though I see him—
I don’t always have the capacity to show him grace.

Because I’m tired.
Because I’m stretched thin.
Because I’m already carrying so much for his brother.
Because I need him to just… be easy right now.

And he’s not.

⸻

So instead, we clash.

He pushes. I snap.
He escalates. I shut down or go sharp.

And somewhere in there is a kid
who just wants his mom
and doesn’t know how to ask for her in a way that works.

⸻

And the guilt?

Immediate.

Because while I’m advocating so hard for one child—
I’m watching another one quietly unravel in a completely different way.

And there’s no therapist calling me back for this.
No clear plan.
No roadmap.

Just…
“figure it out.”

⸻

And I don’t always know how.

I don’t know how to split myself evenly.
I don’t know how to meet wildly different needs at the same time.
I don’t know how to not feel like I’m failing someone in every direction.

⸻

But I do know this:

He’s not the “easy one.”
He’s not the “fine one.”
He’s not the one who needs less.

He just needs differently.

⸻

And this is the part that wrecks me—

The same kid
who shattered Legos, slammed doors, and made me question everything…

is the same one
who sits next to his brother, helps him, kisses him, and loves him
in a way that makes my chest physically hurt.

⸻

Because he’s still just a boy.

My boy.

And even in the chaos—
he’s asking, in the only way he knows how:

Do you still see me too?

⸻

Yeah, buddy.

I do.

I just wish I had more of me to give.

But I’m not missing it anymore.
I’ll try harder.
And I’ll carve out time for just us… even if everything else has to wait.

I really thought Decker’s first day at Dommerich was going to be a whole thing. Like balloons. A plan. A moment. I even stopped at Dollar General and bought Dommerich-colored balloons and those doorway streamer things like I was about to absolutely crush this first-day moment.

In full transparency—I’m an ideas girl. Not an execution girl. IYKYK.

Fast forward to 9:45 p.m. … Did I blow up the balloons? No. Because by that point I was tired, overstimulated, and honestly… I just didn’t feel like it. And deep down I knew—it was going to be fine.

Morning? Chaos. “HAIR AND TEETH” “WE GOTTA GO!” “GET YOUR HOMEWORK.” “LLEENNOOXXXX!” “LETS GO! THE RAMEYS ARE PROBABLY ALREADY THERE.” The usual. HOWEVER, we did have matching Dommerich T-shirts—shoutout to Blair for making that happen, and Paige who absolutely had every intention of making that happen. This, to me, is a WIN! I mean look at those cuties!

We pulled up—Danny with Decker, the boys on bikes, me in the golf cart pretending we’ve got it all together (we don’t). And it felt… right. Which I wasn’t expecting.

Friends showed up. Walked in with us. Took pictures with all the kids. Cheered him on. And I had this quick moment of—oh. This is it. Not the balloons. Not the setup. This.

We walked him in. Met his teachers. One recognized him from UCP. Seven kids. Three teachers. How have we been missing out on this for the entire year? Its ok. Cant go back!

I hustled back to the golf cart after catching up with a few other friends who were hopping on buses for a field trip.

Mind you—I have an 8:45am meeting every single day.

So I jumped on, raced home, got back behind my computer just in time to present.

We did it.
Success.

I think because it all happened so fast, I didn’t even process it. It wasn’t until later—people texting, saying “Decker’s at Dommerich? That’s amazing.” “You must be so happy.” “The boys must be so excited.” And I was like—oh. Yeah. I guess I am. And just like that—he had his first day. Snacks. Circle time. Nap. Music. Happy.

Later I checked in on the boys to see if they had seen Decker throughout the day. Lennox said, “I saw Decker at recess. He was climbing up the slide and chasing bubbles.” And I smiled. Like awww… that makes me so happy. And then Danny goes, “That’s a powerful statement.” And he’s right. The boys aren’t just noticing him anymore. They’re truly excited to have him on their campus.

Day 2. I Wanna Dance with Somebody blasting. Wind hitting our faces on the golf cart. Just me and Decker. And for one single morning… I was like—well this isn’t terrible.

Let me be clear—I still don’t love it. Would very much prefer the bigs just walk him in and make my life easier. But nooooo. Why would we do that. So yes—generally inconvenient. But that one morning? Felt good.

And then. We hit our first roadblock. Decker now gets picked up two hours earlier than I am used to. Two. Hours. Which feels… aggressive. And I had plans. And by “had plans” I mean— I had fully planned in my head that Danny was going to have to pick him up. Did I communicate that clearly? Debatable. Could I had made a couple changes or pivoted? Maybe. But also… Danny—you knew. You knew deep down all day it was probably going to happen.

So Danny grabbed him. And honestly? That’s fine. We’re adjusting. My days are going to be cut short every day moving forward. He can take one for the team on a Friday afternoon.

Day 3? I forgot to pick him up on time. Its MONDAY so very on brand for me. He was fine. I was only 10 minutes late.

So no. No balloons. Even though I bought them. No big moment. Just chaos, a couple really good days, one very humbling one… and somehow—it’s still really good.

And tomorrow—Day 4—is his BIRTHDAY.

This cute, sweet, overly affectionate, clingy child will be five.

He’s never met a stranger.
Loves to run free.
Lives with absolutely no bounds.

I am so happy, proud, thankful… all the things.

Blah blah blah.

I’m going to bed.

Not a cute tear.
Not a “pull yourself together before drop-off” moment.

I cried because this time… it felt final.

When I walked into St. Mary Magdalene Catholic School for Decker’s last day, I was met with smiles—but the kind that come with sad eyes. Hugs that linger just a little too long. Quiet “we love you guys” as I passed in the halls.

And I just kept my head down.

Because if I made eye contact with one more person, I was done for.

I just wanted to get through drop-off.
To take it all in without completely falling apart.

These are teachers I’ve known for four years.
People who helped him grow.
Who helped us grow.

And the hardest part?

I knew he would have been okay staying.

He was loved there. Deeply loved.
And when your child is loved like that… it’s really hard to leave.

But this time felt different.

Because this time, there’s no going back.

You do the things you’re supposed to do.

You smile.
You say thank you.
You hug everyone.
You bring cards. Flowers.

You hope they know how much they meant to you.
That they each hold a piece of your heart.

And then you walk out.

And just like that… it’s over.

Thankfully, I follow one of his teachers on Instagram, and even though I didn’t get to hug her in person, she sent me this—with photos of her and Decker.

Another teacher—his main teacher—sent me a video of Decker from ages 1–4 at St. Mary Mag and how much she loved him.

And another printed a photo collage of her and Decker and sent it with gifts.

This is real love.

But how did we even get here?

Because honestly—this all escalated quickly.

On Monday, we had what I thought was an IEP re-evaluation meeting at our home school.
The one I fought to get into.

Fought for the meeting.
Fought for the people in that room.
Fought for answers.

So when I walked in and they said,
“Oh—this isn’t a re-evaluation,”

I was like… cool cool cool.
Then why is everyone here??

I was ready for battle.

I had my notes.
My questions.
My internal “don’t cry, don’t cry, don’t cry” pep talk.

Full fight-or-flight mode.

And then… something unexpected happened.

Instead of resistance, I was met with a table full of women who actually cared.

Not just nodded.
Not just listened.

They did something.

They made calls while I was sitting there.
Sent emails in real time.
Talked through options.

They were solution-oriented.
They were advocates.

For him.

And then came the twist I wasn’t ready for:

There has been a full-day autism program at our home school… this whole time.

…

I mean.

Gut punch.

Let’s be real.

But also—would I have changed anything?

I don’t think so.

Because St. Mary Mag gave us something we needed in that season.

And now… we’re being pointed somewhere new.

Tuesday, another meeting.
Another incredible woman.
Another “let’s figure this out” energy.

And by Wednesday?

We made the call.

We pulled him.

For the last time.

Monday night, we asked the boys:

“Would you want Decker at your school?”

The answer?

Immediate.

“YES.”
“Oh my gosh, that would be amazing.”

And just like that… everything shifted.

So here we are.

Starting over.

At our home school.
Right down the street.

Where kids of all ages will walk past his classroom every day.
Where he’ll be part of something bigger.

And somehow…

All three of my boys will be at the same school.

Probably the only time in their entire lives.

It’s just two months.

But honestly?

I don’t even care.

Because right now—it feels really, really right.

And yeah… Wednesday morning I cried.

Because something ended.

But maybe…

Something even better is just getting started.

If you’ve ever had to leave a place that loved your child… you know

.

In Panama.

They have availability on April 20th.

Like… in 3.5 weeks.
Which feels like a completely reasonable amount of time to make an international medical decision. No notes.

And then—because I don’t know how to just let one decision sit—

I’m like
okay wait
we should probably do an intensive after

because that’s a thing
people do that
right?

So now I’m like cool cool cool let’s just line that up.

Panama → home → Boston → 3-week intensive

Easy.

Except.

We are not in the intensive.

Not even close.

Because apparently you were supposed to know you needed this… last year.

HOWEVER… it looks like there might have been a cancellation in Boston for April 27.

And THEN I read—

“you should do an intensive 2–6 weeks after stem cells”

…

okay.

So now I’m just sitting here doing math I don’t fully trust.

Like—is April 27th too soon?
Is waiting too long?
Is this something you just… wing???

Also quick side note—

Hi Bumbys 👋

If by some miracle we get into Boston…
can I come live with you for 3 weeks?

No pressure. Just me, Decker, and a mild scheduling crisis.

Meanwhile—real life??

Still very much happening.

I have a job.
Three kids.
Sports.
School.
Afterschool everything.

Danny is in full lacrosse season.

Like… what am I actually trying to pull off right now.

And yet.

Here I am.

Opening tabs.
Checking availability.
Refreshing like something is going to magically change.

I fully understand that planning something for the summer would make way more sense…
but then I look at the availability.

And tell me why the only openings are in Australia.

Over our summer.

I mean…
is this an open door??

Panama → Australia.

Anyone else into it or is this where I’ve officially lost it.

So now I’m sitting here like—

Do we:
go to Panama and figure it out after
wait until everything lines up perfectly (lol)
AKA look for other intensives
push back stem cells until I can line something up
or try to force something that may or may not make sense

I don’t know.

I just know I’m not the “plan this a year in advance” person.

But when an option opens—

I go.

So this might be slightly chaotic
possibly not fully thought through

but also…

it might be exactly what he needs

if anyone has cracked the code on timing stem cells + intensives
or has a secret opening somewhere

please share

because I am currently operating on
vibes
google
and a lot of open tabs

Anyway.

Bumbys… let me know 😂

That’s Decker.
A street over. Already gone before we even knew.

This is how fast it happens.

Yesterday, I shared a post on my Facebook.

A 13-year-old boy.
Autistic. Nonverbal.
Missing.

And like every parent who lives in this world—we all did the same thing. We shared it. We prayed. We held our breath.

And somewhere in the back of our minds, whether we wanted to admit it or not…
we thought: this could be my child.

Today, they found him.

In a lake.

And I cannot stop thinking about it.

What gets me isn’t just the tragedy—it’s how fast it happens.

Because if you know, you know.

These kids don’t “wander” like people think. They move. They run with purpose. They chase something—water, light, freedom, a feeling we don’t fully understand.

And once they go, you are already behind.

Nearly half of children with autism will wander or elope from a safe environment.

Half.

And when they go missing, 1 in 4 are gone long enough to be in real danger.

The biggest danger is water.

Children with autism are 160 times more likely to die from drowning. In wandering-related deaths, up to 70–90% are caused by drowning. Not random accidents. Not bad luck. Water.

I think about the time we lost Decker on the cruise ship. How quickly “he was right there” turns into he’s gone. How your body goes cold before your brain can even catch up.

And even as I’m writing this… this isn’t hypothetical for us. This has already happened.

Last week, my neighbor Rachel called me and asked, “Are you with Decker?”

My stomach dropped.

No. The last time I had seen him, he was in his room reading a book. I hadn’t heard a thing—no footsteps, no door, nothing. He slipped past me, past Brecken, silent as a ghost, and out the garage door that had been accidentally left open.

He was already down the road. A street over.

And I still don’t know how long he had been gone before we realized.

That’s the part that sticks with me. Not just that he got out—but how long it could have taken us to know.

So yes—this fear lives in our house.

And it’s changed how I think about everything.

Because if I’m being honest… I’ve been putting off swim lessons. A part of me didn’t believe he could actually learn.

But the truth is, I might be the one holding him back.

And when I look at the reality—the statistics, the stories, the risk—I don’t think I get to hesitate anymore.

Safety has to come first. Over comfort. Over assumptions. Over what I think he can or can’t do.

So… we’re going to try.

So what is the answer?

I ask myself this constantly.

Do we put AirTags on them at all times—sewn into every pair of shorts, every shirt, every shoe?

What about when they take everything off?

Because Decker’s current favorite hobby is being fully naked and absolutely unbothered.

Do we put something on their wrist? What happens when they rip it off?

And strangers don’t know.

They don’t know that a child running full speed past them isn’t being “independent”—they’re in danger.

They don’t know that if that child doesn’t respond when you call out, it’s not defiance. It’s not attitude. It’s not bad parenting.

It’s autism.

They don’t know that many of these kids can’t tell you their name, their address, or ask for help.

So they just… keep going.

And then come the comments.

“Where were the parents?”
“That’s neglect.”
“They should be charged.”

And I just… can’t.

Because unless you have lived this, you do not understand the math we are doing every second of the day.

You can be watching them. You can be right there. You can be doing everything “right.”

And they can still be gone in seconds.

This boy was with his brother. Not alone. Not abandoned. Just life happening—fast, unforgiving, real life.

And then my brain goes where it always goes:

Why isn’t there a better system?

Why don’t we have something standardized—something immediate?

A way to register our kids with local police departments so if they are found, there’s instant access to who they are, where they belong, how to help them.

A bracelet that has an alarm. A chip. A scannable code.

Something that says:
This child cannot speak.
This child may run.
This child needs help.

Because right now… there is no alarm system.

No siren that goes off above their heads. Nothing that tells the world: this is not just a kid being a kid.

This isn’t rare.

On average, about seven children with autism die every month after wandering.

Seven families. Every month.

I don’t have the answer.

But I know this:

We need to start talking about this differently.
We need more awareness.
More compassion.
More urgency.

Because this isn’t about “better parenting.”

It’s about building a world that understands these kids before it’s too late.

Tonight, I’m holding my boys a little tighter.

And I’m thinking about that family—whose entire world changed in a matter of moments.

And I’m asking the same question I always do:

What more can we do?

And maybe the first step is this—
if you ever see a child alone, running, not responding…

don’t assume they’re okay.

I’ve been walking past her office every morning and every afternoon for weeks, quietly hoping she wouldn’t call me in. Not because she’s unkind — she’s wonderful. She loves him. But I knew the conversation was coming.

They’re only licensed to have children until five.

She told me, “We would keep him forever if we could.”

And I believe her.

But we can’t.

So we need a plan.

Yesterday, as I was leaving after pickup, I casually told her I’d come in after drop-off and we’d “chat it out.” Chat it out — as if I haven’t been spiraling privately for months.

She doesn’t know I’ve been researching other schools at night. She doesn’t know I’ve been touring campuses and calculating tuition that costs more than college. She doesn’t know I’ve been asking ChatGPT how to request a reevaluation for his IEP so maybe we could afford one of these insanely expensive places. She doesn’t know I wake up at 3 a.m. wondering what’s next, what’s best, what if I choose wrong.

I walked into her office knowing: today is the day.

And here’s the part no one says out loud — I never feel like I have a brave enough face on for these meetings. I don’t want to cry in front of people. I don’t want to see that soft, sympathetic look. I want to be strong. I want to have answers. I want to confidently say, “This is our plan.”

Guess what? That day never feels like it’s here.

After the meeting, I started making calls. If his IEP reflected who he is now — not who he was at three — maybe funding would change. Maybe options would open.

Fuck — that reminds me I need to reapply for his scholarship. Add it to the list.

Two departments later, I’m told to call someone else. “I just spoke to them.” “Oh no, we don’t do reevaluations.” They said there’s nothing they can do until he’s in kindergarten.

Kindergarten.

Ma’am, my son is in the twos classroom. He is not walking into kindergarten in August like the rest of the world. Watching other kids tour kindergarten last week — backpacks, class lists, excitement — and being told to wait for a milestone he isn’t anywhere near… that was a gut punch.

They said they can’t do anything until he’s in kindergarten.

So what happens to the year in between?

Where is the in-between? Where is the space for the kids who don’t fit neatly into preschool anymore but aren’t walking into kindergarten ready either?

Where do they go?

He was three when we did his initial evaluation. He wasn’t wildly behind then. Now he’s turning five and functioning more like a one- to two-year-old, and I’m being told the state doesn’t do reevaluations.

I’m sorry — what?

And here come the tears. The ugly kind.

I hang up the phone, wipe my face, and jump right back into work — fielding calls, putting out fires, answering emails, cleaning the kitchen like today was just another normal Thursday.

Because technically… it is.

There’s no pause button for IEP stress. No leave for “the system is confusing and my kid deserves better.” The world keeps moving. And so do I.

But sometimes I wonder how long I can carry it like this. How other parents do this quietly and still show up polished and productive.

Back to the director — she printed out two more schools for me to call. I called. Left messages. No response yet. So here we are. In between options. In between tears. In between systems that don’t talk to each other.

And I keep circling back to the same realization: no one is coming to save me.

There isn’t a department that swoops in and says, “We’ve got it from here.” It’s research at night. It’s uncomfortable meetings. It’s phone calls that end in dead ends. It’s crying in the car and walking back into the house like nothing happened.

I don’t actually want to “shut the fuck up and figure it out.”

But I will.

Not because I’m brave. Not because I have all the answers.

But because he’s mine.

And tomorrow, I’ll make another call.

Because while I sit here writing this, eating lunch, I’m getting pictures from school of that cute little boy.

Happy.
Content.
Completely unaware of licensing limits and reevaluations and phone trees.

If this is too much for your inbox, you can unsubscribe. You’re essentially reading my diary — the version most people don’t say out loud.

Like—

“Should I share this?
Or is this as cringey as I think it is?”

The response?

Immediate.

“Yes. POST IT! It’s not cringey!”
“Absolutely.”
“You have to.”

Okay.
Okay.
Cool.
Fine.

And thennnnn—

“You can’t just put it on Substack.
You have to post it on your own profiles too.”

Ahhhhh.

Like… excuse me?
You mean my actual Instagram?
Facebook?
The place where random people from 2006 can just… see it?

Eeekk.

Substack felt safe.
Cozy.
Like, if you’re here, you signed up for feelings.

Posting it on my own feed?
That felt different.

Not because I’m insecure.
Not because I care if everyone “gets it.”
I truly don’t expect everyone to understand. Or even care.

It was more like… mmmmm.

This is ours.
These are the quiet moments.
The sacred in-between ones that don’t feel like “content.”

They just feel like life.

And once it’s out there, it’s out there.

That was the ahhh-I-don’t-wanna moment.

But I posted it anyway.

And then—

My phone blew up.

In the best way.

Messages from parents.
Messages from people who said they’ve never commented on anything before.

“This hit.”
“This is us.”
“Thank you.”

And I’ll be honest with you…

I love that it hit.
I love that it brought tears to your eyes.

Is that bad?

Not because I want anyone sad.
Not because I’m chasing emotion.

But because it means you saw him.
You saw us.
You saw yourself.

And that matters.

And maybe—just maybe—

Next time you’re in the grocery store
and you see a parent dragging a kid along
looking absolutely fried…

Or you’re in the airport
and there’s a child who looks way too big for the stroller…

Instead of the quick judgment.
Instead of the side eye.

Maybe we give grace.

Maybe we look with an objective eye and think,
I don’t know their story.

Maybe that stroller isn’t about laziness.
Maybe it’s about safety.
Maybe it’s about survival.

Maybe if that kid isn’t strapped in,
they are RUNNING.

Not glancing back.
Not waiting.
Just gone.

And maybe that parent isn’t exhausted because they’re disorganized.

Maybe they’re exhausted
because they are constantly calculating risk.
Constantly scanning exits.
Constantly choosing the least chaotic option.

You don’t see the therapies.
The meds that didn’t work.
The appointments.
The quiet victories.

You see five minutes in Publix.

I’m proud of my boy.

In the quiet way.
In the everyday way.
In the this-is-hard-and-beautiful-and-not-typical way.

I don’t need applause.
I don’t need to be called brave.

Although…
I’m not above a compliment.
Keep it coming.

But if it makes one parent feel seen?
If it makes someone pause before they judge?
If it makes someone exhale a little?

That’s enough.

And yeah—
next time I hit post on something that feels a little too personal,

There will probably still be an eeekk.
And an ahhhh, is this too much???

And I’ll probably do it anyway.

Because apparently
Substack Koko
does hard things now.

And next time you see a “too big” kid in a stroller?

Lead with grace.