It’s been a while since I’ve been able to sit down and write an update. Life has been incredibly busy lately, and keeping up with the website has taken a bit of a backseat to just… living. Since Mom’s passing, everything has felt a little heavier and a lot more full, and we’ve been doing our best to navigate it all one day at a time.
I do want to take a moment to say thank you—truly, deeply thank you—to everyone who has supported us. There really aren’t words big enough to express our gratitude. Whether you’ve brought a meal, helped in a big way, or simply sent a quick text to check in on us… it all matters. The love that has been poured into our family has been overwhelming in the best possible way. “Thank you” doesn’t feel like enough, but right now, it’s what we have—and we mean it with everything in us.
Even in the middle of everything, we are still making space for joy and fun with James. Recently, we took him to an Easter train ride near my aunt’s house, and it was such a wonderful, special day. Seeing his excitement never gets old.
Before I forget—James’s preschool at Philadelphia Presbyterian Church is hosting a lemonade stand fundraiser for him! It was something the director and Mom started before she passed away. All proceeds will go directly toward research for CLN2 to help find a cure. We are beyond grateful for this incredible preschool and the love they continue to show James. If you’re local, we would absolutely love for you to stop by and support! I apologize for the very last minute notice, but, again, life has been super busy.
Here are the dates and times:
Wednesday (4/22)
8:45 - 9:30 am
Thursday (4/23)
8:45 - 9:30 am and 12:45 - 1:15 pm
Friday (4/24)
8:45 - 9:30 am
Sunday (4/26)
11:30 am (after church)
Next week, we’ll be at UNC for James’s six-month Batten clinic and infusion. It’s always a long week, but we’re hopeful and grateful for the care he receives there. Afterward, we’re really hoping to sneak away to the beach. James has been asking to go since January, and between appointments and work, we just haven’t been able to make it happen yet. Fingers crossed we can make it happen this time.
And just in case you were wondering—yes, we are still keeping a close eye out for garbage trucks. And yes, we still excitedly yell, “It’s a Peterbilt!” every single time we see one. Some things never change—and honestly, we wouldn’t have it any other way.
James is doing well. We received the unfortunate news that his vision is starting to regress again, so taking him places and letting him watch garbage trucks, see a train, play outside, matters even more than ever. And I know mom is watching over him with every fiber she can.
Much love from us!