From Christmas Challenges to Birthday Joy: What Camden Taught Us

As one year closed and another began, I found myself reflecting on two very different celebrations we experienced—Christmas and Camden’s birthday. Both held such potential for joy, but they also revealed the challenges of navigating traditions with Camden’s unique needs. What started as a difficult holiday season ended with a profound reminder of what truly matters: focusing on what makes Camden happy and letting everything else fade into the background.

The Struggles of Christmas

This Christmas felt isolating. Illness kept us home, away from family gatherings, as we didn’t want to risk spreading germs to loved ones, especially those with young children. Managing illnesses with Camden is always a challenge. When he’s unwell, his seizures increase, his sleep becomes erratic, and his behaviors intensify. On top of it all, Camden is nonverbal, so understanding how he’s feeling or the severity of his symptoms can feel like an impossible guessing game.

We tried to hold onto some semblance of a traditional Christmas morning, but it quickly became clear that it wasn’t working for any of us. Camden doesn’t understand presents or the magic of Santa, and the excitement you’d typically expect from a child on Christmas morning just wasn’t there. Instead, it felt forced—us trying to fit Camden into the mold of a “normal” Christmas. It wasn’t fair to him or to us. He wanted to do anything other than sit around the tree, and we were left feeling frustrated and defeated.

Looking back, I realize the imbalance: we prioritized tradition over Camden’s enjoyment. But why? Shouldn’t creating happy memories with him be the ultimate goal? It was a hard lesson to learn, but one that would guide us as his birthday approached.

A Lesson in Adaptation

When Camden’s birthday came around just a few weeks later, we had a chance to do things differently. This time, we focused on Camden—his interests, his joy—and let go of any preconceived notions of what a birthday “should” look like.

We were invited to a bluegrass jam session hosted by family that happened to fall on Camden’s birthday. It couldn’t have been more perfect. Camden loves music, especially string instruments like guitars, banjos, and stand-up basses. We’ve spent countless hours watching folk and bluegrass performances on YouTube, but this was the first time he got to experience many of these instruments in person.

The joy on his face was unforgettable. He danced, played along with his own guitar, and smiled more than I’ve ever seen. At one point, he walked up to me to get his guitar, joining the musicians as they tuned theirs. The kindness of those musicians—letting him explore their instruments, playing alongside him, and making him feel welcome—was something I’ll never forget. I’d been nervous about how he might interact with them or how they might react to him, but they embraced Camden with such warmth and understanding.

A Birthday to Remember

Leading up to his birthday, we’d worked on practicing blowing out candles. For Camden, repetitive practice is key, whether it’s preparing for a doctor’s visit or a simple birthday tradition. Every day, we sang “Happy Birthday” and practiced blowing out a candle, so when the big moment came, he was ready. And he did it! It may seem small, but for us, it was a huge victory—a reminder that meeting Camden where he is and giving him opportunities to succeed is far more meaningful than expecting him to conform to our expectations.

The bluegrass jam turned out to be more than just a celebration of Camden’s birthday. My cousins, who hosted the event, turned it into a fundraiser for the SynGAP Research Fund (SRF) in Camden’s name. Through the generosity of family, friends, and strangers, we raised nearly $400—a truly incredible birthday gift.

A New Perspective

Reflecting on these two celebrations, I’m reminded of the lesson we learned this Christmas: it’s not about fitting Camden into traditional expectations; it’s about creating joy and meeting him where he is. His birthday showed us what’s possible when we let go of the “shoulds” and focus on what truly matters.

As we move into this new year, I’m holding onto the joy we saw on Camden’s face as he danced and played his guitar, the kindness of the musicians who embraced him, and the support of a community that came together for him. These moments are our foundation for the year ahead—a reminder to prioritize Camden’s happiness, advocate for SYNGAP1 awareness, and celebrate the small victories that mean everything.

Here’s to more moments that light up Camden’s world and, in turn, ours.

With love,

Craig, Sara and Camden