What a whirlwind these past few months have been. We keep saying we need to slow down and write more often, but honestly, life with Owen has been moving at lightning speed, and not always in ways we expected.

Five Years Old!

Owen turned five (thanks to his Drs. at OHSU through the grace of God), and we wanted to make sure it was special. We found this amazing party venue with a play structure that goes way up high, and here's the thing that made us both tear up a little: Owen could climb all the way to the top, even with everything his little body is dealing with.

Watching him navigate that structure with his preschool friends and cousins Calvin and Logan, seeing him just be a regular five-year-old having the time of his life opening presents... those are the moments that remind us why we fight so hard for normal.

And we have to mention that Owen's quite the little ladies man. The majority of kids who showed up were his "girlfriends," including a set of twins who adore him. He was in his element.

Speaking of normal moments, Owen made Melissa the most beautiful Mother's Day card. We're talking construction paper, handprints, the works. It's one for a frame, for sure.

New Routines

With Owen's Duchenne infusions happening every Tuesday now, returning to preschool would mean he'd have to come back right at nap time and immediately lay down for an hour. That didn't seem fair to a kiddo already dealing with an infusion that day.

But you know what? Sometimes life gives you unexpected gifts. Owen's been spending quality time with Calvin and Logan on those Tuesday afternoons after his home nurse finishes the 30-minute drip through his port.

It's become this sweet routine where we can head back to work knowing he's having fun with his cousins instead of just recovering from another medical procedure.

Fore! For Four – Again

We got incredible news: Owen was selected again as one of four recipients for the Fore! For Four golf tournament. Last year felt like lightning in a bottle, and honestly, we figured that was our one shot.

But they chose him again, even with his second diagnosis now in the mix. We're humbled doesn't even begin to cover it.

They asked if Owen would be willing to be in an advertisement with UO football star Bryce Boettcher to help raise awareness. Um, yeah, our five-year-old was pretty excited about that.

Then Devin was asked to produce a documentary for the tournament, something to give the golfers insight into each recipient's story.

It was incredibly well received and definitely a tear jerker.

The best part? It featured Owen having an absolute blast in his brand new blow-up pool. Pure joy, right there on camera.

The finished short documentary is at the bottom of this journal for you to watch.

Warning. Make sure you have tissues.

Idaho Adventure

We decided to take on the drive to visit Devin's parents in Idaho. Twenty-one hours of driving and over a thousand miles round trip. Are we crazy? Probably. Was it worth it? Absolutely.

Owen got to spend quality time with Grandma and Grandpa, finally understanding where his dad gets those legendary grilling skills from.

Grandma made sure he got to set off some fireworks, and boy, was he proud of himself. The week flew by way too fast, but we made memories that'll last forever.

Medical Reality Check

On our drive home, we timed it perfectly to stop in Portland for one of Owen's sedation and infusion appointments. Four hours at OHSU, which has become routine, but never feels routine.

They sedate him to inject treatment directly into his spinal fluid because leukemia loves to hide there when we're trying to eradicate it elsewhere. They also test to see if any's detectable.

Good news: like all these appointments over the past year, no detectable signs of leukemia.

But here's the thing people don't realize: technology can only detect 0.001% of present leukemia cells. It's like trying to sift sand through a cheese grater. Only the big stuff shows up, but those microscopic cells can still build up if we're not vigilant.

Fourth of July Disappointment & Recovery

We drove out to Harrisburg for their big firework show, ready for a perfect family night with Owen's and Devin's cousins. They caught the field on fire.

Twenty minutes of waiting to see if they'd continue, three disappointed kids, and we finally called it and headed home.

Of course, they resumed the show just as we were leaving town. Murphy's Law when trying to give your kids a fun time, right?

But the next day, we set up chairs on the sidewalk and made our own celebration with over-the-counter fireworks. Sometimes the backup plan turns out better than the original.

Tournament Day

The Fore! For Four event itself was incredible. Owen walked the golf course, meeting people, being his charming self.

Devin's documentary was well-received; it even brought Melissa to tears, and she'd seen four different versions during editing.

She and her mom volunteered during the event, and Owen got some quality nana cuddles at the end of the day. Perfect ending to a meaningful day.

Preschool Graduation

Owen's preschool graduation was everything you'd want it to be: tiny yellow graduation gowns, miniaturized ceremonies in the daycare's backyard, bouncy houses that Owen normally can't do but managed this time.

Super cute, and Owen had the biggest smile.

The New Reality

Then came Monday. Owen got his new wheelchair, not just any wheelchair, but a motorized one he can control himself, driving around the house like he owns the place.

With Duchenne, walking and activity tire him more easily. The best way we can explain it: imagine going to the gym and working your muscles until complete exhaustion. That residual pain from torn muscle fibers? Your body repairs those. For Owen, those fibers don't repair. Every minute, every day, his muscles get weaker.

This wheelchair lets him stay mobile without burning through the strength he needs for meaningful activities.

Full disclosure – it costs $33,000. We could never afford something like this without insurance, which wouldn't be possible without taxpayers.

We're grateful beyond words that Owen has this tool to help preserve his strength.

Looking Ahead

We're facing some big financial realities. Owen will need accessibility modifications as his wheelchair becomes his primary way of getting around.

Typically, boys with Duchenne lose the ability to walk by age twelve, maybe sooner for Owen because his leukemia medications can increase muscle wasting.

We're talking ramps to the front door and backyard, wider doorways, bathroom remodeling, and eventually a vehicle that accommodates his chair.

None of this is covered by insurance. We've increased our donation goal to $100,000 to cover projected costs. It feels overwhelming to put a number that big out there, but that's our reality.

And just for transparency sake, we manually add every donation we've ever gotten outside of GoFundMe to our total raised so you (and honestly us) know what the total amount is for all the generious families, friends, and followers out there. If you've already donated, please consider sharing our story. Every little bit helps and adds up.

Through all of this (the medical appointments, the equipment, the planning ahead) Owen keeps being Owen. He's always curious about how everything works, taking things apart to figure them out, living his life with the engineer's mind that makes us so proud. That's what keeps us going, even when the path ahead feels uncertain.

Thank you for being part of this journey with us.

Watch the short documentary:

Beyond the medical battles, the profound challenges these families face: financial strain from medical bills and lost income, the difficulty of parenting through illness, and the emotional toll of sudden life changes.

Produced by D.L. Watson (Owen's father) of A Video Maker LLC