Excuse You: A Rare and Wonderful New Year’s Milestone

Excuse me. Or rather, excuse him. My son is burping. Yes, you read that right. After 8 long years, my son is doing something so ordinary that it feels extraordinary - he’s burping. I hadn’t ever even really realized he WASN’T burping. And with that, the vomiting has stopped.
For 8 years, vomiting was as constant as the air we breathe. Projectile vomit, 3 to 20 times a day. It was a part of our daily soundtrack and dictated every corner of our lives and our outfits. My minivan and his side tables still have stacks of puke towels that I am too afraid to discard or lessen. I can still smell every formula ever made, and I can’t think of the flavor of orange chicken without feeling my stomach tighten. Even now, months into this rad change, I’m still bracing myself for the next eruption. Hyper vigilance (trauma) is a hard habit to break.
Hospital stays - My son’s is very skinny and has always struggled to gain weight-obvi, the amount of times a social worker was sent in to “assess the situation.” Because when your kid is skinny the world assumes you’re doing something wrong. No one saw the hours (or tears) it took to get the calories in him.
The little dude is burping. He’s burping! This simple, magical function has become a silent celebration in our home. My husband and I haven’t even spoken it out loud. There’s a knowing between us, and perhaps neither of us wants to jinx it. I can’t help but wonder - what changed? Is it his brain? Muscle tone? Something else? The answer isn’t clear, but the impact is life changing. For the first time in his life, it feels like my son’s body is working with him and not against him.
It’s funny how a bodily function most people suppress can feel like fireworks. Each burp feels like a celebration, a milestone we didn’t know to hope for. It’s also a reminder of how trauma lingers. Even with this massive shift, I still worry about calories, about his weight, about the long-term effects of those eight years. I see it in myself and in my husband - how we hover, how we can’t stop watching the plate of our typically developing daughter, who refuses to eat (unless it’s a treat or a snack). Old habits don’t fade as quickly as old symptoms.
To the rare disease parents reading this - I see you. I know how exhausting it is to navigate the maze of symptoms, treatments, and uncertainty...to get so used to the grind. And I also know how hard it is to hope for something better when survival sometimes seems to take all of your energy.
So here’s my takeaway I suppose - celebrate the burps. Find joy in the seemingly insignificant moments that aren’t insignificant at all. Speak the milestones, even the small ones, out loud. They matter. They heal. They remind us that, while our journey is complicated, progress is possible.
I’m trying to teach my son to say, “excuse me” after he burps but instead he bursts into belly laughs.
And you know what? I’ll take it. I’ll gladly celebrate him being a gross 8-year-old boy because, until now, that wasn’t part of our story either.