A Season of Magic, Light, and Reality

Wow. What an incredible journey this little one has been on lately.

We kicked off some holiday magic by riding the Polar Express in Spencer, NC—and for those of you wondering, yes, it really was pretty fantastic. Funny enough, neither James nor I have ever seen the movie or read the book, but we didn’t need to. The experience stood amazing on its own, and they read the story aloud on the train anyway. It was cozy, joyful, and full of that Christmas spirit.

We were also able to see in the Charlotte Symphony Orchestra’s Holiday Pops. I know—on paper it sounds like something kids might tolerate rather than enjoy, but James and his cousin actually loved it… I think 😉 Either way, it was a special experience we were grateful to share.

Somewhere in between all of that, James was able to visit the Mint Hill Fire Department and even rode in the Mint Hill Christmas Parade. He was so excited—beaming as he waved and took in all the people. Moments like that are pure gold to us.

Please excuse me as all of this is wildly out of chronological order—because life lately has been extremely busy.

Back in November, before Thanksgiving, while James was at one of his infusions, Cory and I decided to completely decorate and light up my mom and dad’s property. And when I say decorate, I mean decorate. For those of you who know where they live, you’ve probably seen the ridiculous amount of lights spread across the yard and into the woods.

That was us.

James absolutely loves it. It gives him another reason to get outside—though truthfully, he never really needs one. Being outdoors is one of his happiest places.

But then… reality reared its ugly head.

On December 18th, James had two back-to-back focal seizures. During both, he stopped breathing briefly.

We called 911 twice that day and we are so grateful for the off duty EMT that showed up both times, Mint Hill Fire Department, Mecklenburg EMS, and the Charlotte-Mecklenburg Police Department for showing up and making sure James was okay. I understand that’s your job, but you all took extra care of him and we are forever grateful and indebted to every one of you. Thank you so much.

After the second seizure, we spoke with James’s neurologist—who is truly a God-send—and she recommended taking him to the ER for an EEG to make sure his brain was settling back down.

Unfortunately, the ER didn’t have any EEGs available, so we came back home around 2:00 AM Friday morning.

We had to use his emergency medication both times, which meant calling in more. What followed was a frustrating mess of prescriptions being sent to the wrong pharmacy and for the wrong amount—but once again, our rockstar neurologist stepped in and got everything squared away. And honestly… how many people have their neurologist on speed dial these days? I remember listening to endless menu options when calling Novant just to reach the nurse on duty. Now, I almost feel spoiled having this level of access, care and support.

James is still recovering. One seizure alone can make your body feel like it ran a marathon—so two back-to-back is a lot. But he’s a trooper. He’s slowly but surely feeling better.

Right now, Cory and I are carefully monitoring his fatigue levels. For about a week after seizures, we intentionally limit his activities because his “stimulation bucket” is still too full. It’s a delicate balance—protecting his body while still letting him be a kid and soak up the joy around him.

This season has been full of magic, lights, music, and smiles—but also fear, exhaustion, and reality checks we never asked for. Still, James keeps showing us what strength looks like, even when his body needs time to rest.

And we’ll keep choosing joy where we can—lights blazing, trains rolling, and hope glowing brightly through it all.