Summertime Fun

This summer has been one for the books—and definitely one for the blog. While we were sitting at the airport in Texas, waiting on our flight home, Cory and I were talking about what we could do next that would be fun for James – specifically what train ride he would enjoy. We found ourselves researching the Great Smoky Mountain Railroad and, after reading about the Nantahala Gorge steam train route, decided that was the one we wanted. As we were about to book the tickets when we noticed something interesting—you can rent out the entire caboose. Usually reserved for family reunions or corporate groups, we looked at each other and decided, “We’re renting that caboose for James.” So we did.

We picked a random weekend in June, invited our family, and just went for it. It was about as spur-of-the-moment as you can get, and honestly, it turned out to be such a special memory for all of us. (We’ll probably do it again in the near future.)

We’ve also made it back to James’s favorite place on Earth—the beach. He’s been asking to go pretty much non-stop, and I get it. The beach and beach house is his happy place. The house is small enough that he can run around and play freely without us hovering over him every second, which is a gift in itself. A couple of years ago, my parents cemented the space under the house, and it’s been the best thing ever for James. He can play with his toys, run around, and just be a kid.

Also—small PSA for all the beach goers—we tried those wide plastic-wheeled beach carts and they got stuck in soft sand. So we bought a beach cart with those pneumatic tires (Amazon, for the win) and it’s a total game-changer. I can actually pull all of our gear AND James across the soft sand without feeling like I need a rescue crew halfway through. And trust me, we bring a lot of stuff. We also bought with James in mind – knowing the end result is loss of mobility, this cart has a weight capacity of approximately 350lbs, if I remember correctly. Meaning, James and his mobility chair (when we get there) will be able to fit in this cart.

Amidst all these sweet moments, we’re still continuing James’s bi-monthly infusions and monthly ocular injections. But at our last eye appointment, we were told we need to start being thoughtful about the injections moving forward. In other words: there’s a chance his vision is still declining regardless of the injections, and we, as parents, need to be mindful of quality of life vs. injections. We’ll know more next week after they review the latest OCT images, but our amazing ophthalmologist gently prepared us for that possibility—and I really appreciate her honesty, even when it hurts.

And yes, it did hurt – facing the reality of Batten disease all over again, knowing we can't stop it. But we are still going to continue the injections for James. It is still worth it.

We’re plan to take James on so many more trips—maybe even some we’ve already done a hundred times. Because he loves them. And if James loves something, that’s reason enough to do it again and again and again.

Thank you for continuing to follow along with us. Your prayers, messages, and love mean more than we can ever put into words. And believe me, we can feel them all. Much love!

P.S. I promise to update the pictures and I’ll probably post another blog post letting you all know that pictures have been updated.