Looking Back: How It All Started with a Lump
The following entry highlights what led up to Owen’s Diagnosis in February, 2024…
From the moment he arrived, everything shifted in that beautiful, overwhelming way that only a first child can bring. We remember the way he blinked at the world like he was already trying to figure it all out. Those bright blue eyes—they didn’t just look at things, they examined them, almost like he was filing away information for later. He didn’t cry much. He was calm. Alert. Present.
We were instantly smitten, and honestly, a little intimidated. How could we possibly be good enough for this tiny human who already seemed so wise?
Owen had this sandy blonde hair that caught the light just right, and the softest little features that made people stop and coo even when we were just walking around the block. His presence brought people in. And not just because he was cute—though, yes, objectively, he was incredibly cute—but because he had this vibe. Like he was someone worth knowing.
He said his first word pretty early. “Hi!” he declared one morning, as if he were a little customer at a breakfast diner. Then came “Lasagna,” which we still can’t say without smiling. It’s a reference only a very specific kind of toddler would make—his nod to his favorite Netflix show at the time, Go, Dog. Go!. (Yes, that lasagna episode.)
From day one, Owen’s curiosity was off the charts. Not just the usual baby stuff. Where other kids were mesmerized by fish swimming around in an aquarium, Owen was more likely to be found staring at the pump system or figuring out how the automatic doors opened and closed. While other toddlers pressed buttons for fun, he seemed to press them with purpose—he wanted to know why they worked. He wasn’t just playing; he was experimenting.
We joked that he was a tiny engineer in disguise, sent here to audit our home for inefficiencies. Honestly, we still kind of think that’s true.
As he grew, his personality just bloomed in every direction. Owen is gentle but firm, patient but persistent. He’s the kind of kid who, when he sets his sights on something, will not forget it. If you tell him we can go to the park after lunch, expect a very polite but relentless follow-up at exactly the end of the last bite. He keeps us honest. He keeps us organized.
He wasn’t loud (a bit louder today). He’s not flashy. But he is focused. You can practically see the gears turning when he’s working on a puzzle or stacking his beloved magnetic tiles into elaborate structures. It’s in those quiet moments that you realize how deeply he’s processing the world.
He’s also incredibly affectionate. The kind of child who will pause mid-play just to lean into your lap. Who calls us and his grandparents “my friends” with complete sincerity. Who asks for one more cuddle at bedtime, not because he’s trying to delay sleep (well, okay, maybe a little), but because that closeness genuinely fills him up. And us, too.
Owen’s love is like gravity—it pulls us toward him, grounding us in the best parts of life. Even on the hardest days, he somehow manages to reset our priorities with a single look, or a simple, “Guys, I wanna snuggled with both of you!”
His love of building things has only grown stronger with time. We’ve watched him disappear for an hour into a world of LEGO bricks, making something so intricate we’d assume it came from a box—until he tells us, quite proudly, that he just made it up. He’ll walk us through every part: “This part opens so the people can get out. This is a secret room. This button is for emergencies only.” He builds with intention, with care, with story.
And beyond all that—he’s just funny. Not in the accidental way kids sometimes are, but in a way that makes you laugh from your core. He gets humor. He knows when he’s being clever.
Parenting Owen hasn’t just been about raising a child—it’s felt like getting to know this fascinating little person who chose us. And we don’t take that for granted. Not for a second.
Of course, it hasn’t all been smooth. No parenting journey is. There have been sleepless nights, tantrums in grocery store aisles, and a fair share of moments where we’ve had to step into the hallway just to take a breath. We’ve doubted ourselves, like all parents do. We’ve Googled way too much. We’ve second-guessed every fever, every rash, every bump.
But even in those tough moments, there’s always been this unshakable truth: Owen is our greatest joy. He’s our daily reminder of what’s beautiful in the world. He slows us down in all the right ways. He invites us into wonder. And more than anything, he teaches us how to be better—more present, more patient, more loving.
As we reflect on this, we realize that Owen never really crawled in the typical way. Instead, he had this unique little method of scooting on his back, using his shoulders and head to push himself across the floor. We thought it was quirky, charming even—just one of those personality things babies do to stand out.
He was a bit slow to walk, too. He pulled to stand around 11 months, but didn’t fully walk on his own until 16 months. We chalked it up to him being careful, observant, taking his time like he always did with new things. At the playground, he never ran headlong into the chaos like some kids. He avoided the chain ladders and those wobbly, sagging rope bridges, the kinds that send most parents into a mild panic—only with Owen, we never had to worry. He was cautious. Careful. And honestly? That felt like a gift sometimes.
When he started going to Shannon’s Daycare at a year and half old, we specifically asked that she encourage him to play more physically, to climb and explore. It was Shannon who first gently suggested he might benefit from seeing a therapist. We agreed and even submitted a request. But when nothing came of it, we didn’t follow up—not out of neglect, but because we really believed he was just moving at his own speed. He was making progress, after all. It never felt like something was wrong. Just… Owen being Owen.
All these signs we later learned were red flags to something lurking since Owen’s birth…
As we headed into late 2023, we were doing what a lot of parents do—we were finally starting to feel like we had our footing. We were settling into routines, savoring the sweet spot of toddlerhood where imagination meets independence. Owen, now 3 years old, was thriving. He was talking more, building more, hugging tighter, and still be cautious with where he stepped.
Owen was getting ear infections and colds a lot, but what kid doesn’t become a greenhouse of bacteria when going to daycare.
But then, just before Thanksgiving, we noticed something.
A small bulge on the right side of Owen’s neck—barely noticeable, unless you were really looking for it. We were, admittedly, still a bit wired from years of new-parent hypervigilance, so we brought him in to see his pediatrician. The doctor gave it a look, felt around gently, and reassured us: probably just swollen lymph nodes, a common response to lingering infections. Just something to watch.
A few days later, with no change—and maybe just a little bit of growing unease—we brought him to the ER. Again, we were told it was likely nothing serious. “Probably an infection,” they said. “These things usually resolve on their own.” We wanted to believe that. We really, really did.
Still, something didn’t sit right. So we made an appointment with an ENT specialist. He, too, leaned toward infection. “Let’s give it six weeks and then reevaluate,” he said. We tried to exhale again. Maybe everyone was right. Maybe we were just seeing shadows where there were none.
And then Owen screamed.
It came out of nowhere—one minute he was playing on the floor, the next he was curled up, sobbing, clutching his leg. He couldn’t bear weight. It was the kind of pain that takes over a child’s entire body, and all we could do was hold him, panic climbing up our throats as we rushed him back in.
This time, we were told it might be a toddler fracture. A common enough injury. He was put in a cast, and we tried to settle into another kind of limbo—hoping the cast would bring relief and that we were, once again, just dealing with normal, explainable things.
Three weeks passed. The cast came off. But while Owen could walk on it, the pain seemed to linger. Not as bad as the initial incident, but enough where Owen’s steps were slower. He fatiqued easier. He requested to be carried more.
Perplexing, his X-rays showed no fracture at all. Nothing to explain why he clung to us like he was trying to get away from his own legs.
At the same time, we were back at the ENT’s office. The lump on his neck hadn’t gone away. If anything, it had become more prominent. And there were more tiny ones on the back of his head, and on his neck. We sat in that sterile room, trying to make sense of the timeline that was now starting to look less like coincidence and more like a pattern.
Thankfully, the ENT didn’t hesitate. “We need to refer you to a specialist at OHSU,” he said. And that was the first moment it really hit us—that whatever this was, it might be bigger than anything we were prepared for.
We drove home with silent questions bouncing around in the car. Something inside us had already started to shift. Parents talk about gut feelings all the time, and it’s hard to describe if you haven’t felt it—but in that moment, we both felt it. That sense of something pressing in around the edges of your life, waiting to break in.
And then the results came.
They changed everything.
But what we didn’t know yet was that this wasn’t even the worst news we were going to get.
