The Good, the Hard & the Beautiful: NYC Family Vacation with FSHD

October 18 , 2026

The Good:

We took a family vacation to NYC and showed the boys all it has to offer. We were blessed with beautiful fall weather, which made exploring the city even better. From the Empire State Building, Chinatown, Little Italy, and Times Square to plenty of shopping and sightseeing, there was never a dull moment. We even rode the subway. I absolutely love the subway system and the energy (Easton did too) that comes with it. Damon, on the other hand, much preferred taking cabs. Let's just say we had different opinions on the best way to get around the city!

One of the highlights was visiting the famous West 4th Street basketball courts to watch some local hoopers. While no one really impressed us on the court, Easton did get to meet TikTok legend George Papoutsis (@therealgeorgemessiah). Known as the "Basketball Messiah," he embodies the spirit of NYC streetball with decades of experience and entertaining one-on-one battles against other icons.

Let's just say there was no shortage of trash talk. George even offered to play Damon one-on-one for a $100 bet. Damon claimed he wasn't dressed for competition. As his wife, I had every confidence he could win. Unfortunately, he never gave himself the chance to collect the $100. 😂🏀💰

Unfortunately, Sunday brought rain, and our trip to the Statue of Liberty was canceled. We did, however, make it downtown to visit the 9/11 Memorial Museum and the One World Observatory. It was a meaningful opportunity to explain to Lucas the significance of that day and its impact on our country. My eyes stayed teary throughout the entire museum visit. The stories, artifacts, and memories serve as a powerful reminder of our nation's resilience and unity. #AmericaStrong

The Hard:

NYC is a big city with a lot of walking. We took more cabs than we normally would so Lucas could rest and not be pushed quite so hard. Even with our best efforts, he still had a couple of falls.

The first time, I was holding his hand and was able to keep him from going all the way to the ground, but he still scraped his knee. That was enough to make him completely shut down for a few minutes. We found a bench, cleaned up the scrape, and took a much-needed break. After a little rest, Lucas was feeling better, but he was absolutely adamant that we find Band-Aids before doing anything else. So, we adjusted our plans and continued on to dinner with a quick stop at a pharmacy along the way.

The second fall happened at the 9/11 Memorial Museum and wasn't nearly as dramatic. Lucas tried to catch up to me when his leg simply gave out. Thankfully, it wasn't a hard fall, and he got right back up like nothing had happened. This time, however, I was ready with Band-Aids!

FSHD causes leg weakness and tends to develop asymmetrically, which can lead to balance issues. Fatigue only adds to the weakness. For Lucas, his left leg is weaker than his right, and when he gets tired, every step seems a little harder.

At the same time, it's important for him to keep using those muscles. Staying active helps maintain strength and function, so finding the balance between rest and activity can be tricky. We want to protect him, but we also want him to keep doing the things he loves and experiencing life like any other kid.

Watching him stumble or struggle to keep up can be heartbreaking because, in so many ways, he's just like every other kid. He wants to run ahead, explore, and be independent. Sometimes his body has other plans.

As parents, we understand it's part of the disease, but that doesn't make it any easier to watch. It's hard seeing your baby struggle just to stay on his feet sometimes. You want to scoop him up, make it all go away, and carry the load for him. Instead, you encourage him, give him a break when he needs it, and keep moving forward together.

The truth is, Lucas handled it better than the rest of us. He kept getting back up, dusting himself off, and pushing ahead. His determination never wavered, even when his body was telling him it was tired.

But after this trip, I think we're all ready for a vacation where the hardest decision is whether to sit in the beach chair or get in the water. 🏖️ ☀️ 🌊

The Beautiful - Four Times Over:

The number 4 has always been my "lucky" number, per se.

It follows me everywhere. My last three addresses were 404, 44, and 614. My ZIP codes have always included a 4. My phone number has 4s. My driver's license has a 4. My Social Security number has two 4s. Even Lucas's birth year contains a 4. Just this week on vacation, our hotel was on 54th Street and our room was 504. We landed in NYC at Terminal 4. Our flight home was 4222, we sat in Row 4, and we arrived home at 4:28 PM. At this point, I can't make this stuff up. Four is definitely my number!

So, you can imagine how surprised I was when I learned what FSHD actually is.

FSHD affects chromosome 4. The DUX4 gene switches on and begins a process that damages and weakens muscle tissue. When I first learned that connection, I made note of it. Of course, the disease that would impact our lives had to involve my number.

But I questioned it.

Why 4?

Then God began turning my attention to Scripture over the last few weeks.

First was Psalm 139:14:

"I praise You because I am fearfully and wonderfully made."

Then came Isaiah 41:10:

"Fear not, for I am with you."

And then Exodus 14:14:

"The Lord will fight for you; you need only to be still."

At some point, I had to laugh.

Really, God? Was He using my number to heal my heart?

The Bible is filled with meaningful numbers. Most people know 3, representing divine completeness, and 7, symbolizing perfection. But I started wondering if 4 had any significance.

A little research led me to something unexpected. The number 40, which is built upon 4, repeatedly marks periods of testing, trial, preparation, and transformation throughout Scripture. Forty days of rain during Noah's flood. Forty years in the wilderness. Forty days Jesus spent fasting before beginning His ministry.

And I thought:

Let's go!!!

Because if 40 represents a season of testing, it also represents a season where God is present. He never abandons His people in the wilderness. He prepares them there.

Lately, I've felt like I'm sitting in that boat with the disciples, watching the storm rage around me. Wondering what's coming next. Wondering how strong the waves might get.

Then I hear the words of Jesus:

"Quiet! Be still!" (Mark 4:39)

The wind obeyed Him. The waves obeyed Him.

And while I know FSHD may not disappear with a spoken word (although it could with only His; after all, miracles still happen), I also know this:

If Jesus can calm that storm, He can calm the one in my mind.

The one filled with fear.

The one filled with worry.

The one asking too many "what if" questions.

Maybe the number 4 was never about luck at all.

Maybe it was a reminder that God would meet me here, in the middle of the trial.

And I assure you, if He can say, "Quiet! Be still" to a storm on the sea, He can say it to the storm in my heart...

Four times over.