SG. After a brief moment of relief, when Jax finally found rest, reality hit hard once again. He woke with a fever — a painful reminder that this journey is far from over.

For a fleeting moment, it felt like we could finally exhale. Jax had settled into sleep, his tiny body relaxed in a way we hadn’t seen in days. In that quiet space, hope crept back in — the kind of hope parents cling to when exhaustion and fear have worn them thin. We allowed ourselves to believe that maybe, just maybe, the hardest part was behind us.

But morning arrived with a cruel reminder that this journey does not follow our wishes. Jax woke with a fever, his small body once again signaling that it was still fighting battles unseen. The relief we had felt only hours earlier vanished, replaced by the familiar knot of worry that has become part of our daily lives. It was a reminder we’ve come to know too well: progress is rarely a straight line.

Since that day, new challenges have continued to emerge. One diagnosis led to another, each adding weight to a path already heavy with uncertainty. Torticollis became part of Jax’s story — a condition that affects the muscles in his neck, limiting movement and adding discomfort to his already fragile days. What might sound minor on paper has meant countless therapy sessions, careful positioning, and endless patience as Jax works to do things other babies manage without thought.

Therapy has become a regular rhythm in our lives. Appointments fill our calendar, each one bringing a mix of hope and heartbreak. Hope, because every stretch, every guided movement, is a step toward progress. Heartbreak, because watching your child struggle through something they don’t understand is a pain no parent is ever prepared for. There are days Jax pushes through with quiet determination, and days when frustration and fatigue take over. We celebrate the smallest victories — a turn of the head, a moment of balance — because we’ve learned that progress is built from inches, not miles.

And now, another chapter has been added: the need for a helmet. When we first heard the words, our hearts sank. Not because the helmet itself is frightening, but because it represents yet another reminder that Jax’s road looks different from what we once imagined. It means more appointments, more adjustments, more explanations to strangers. It means accepting that healing often comes wrapped in things that are hard to see at first glance.

Yet through every new obstacle, Jax continues to amaze us. His strength does not shout — it whispers. It’s in the way he keeps trying even when his body resists. It’s in the calm determination in his eyes, the way he meets each day without fear or bitterness. He doesn’t know the words “setback” or “diagnosis.” He only knows that he is loved, held, and encouraged to keep going.

As his parents, we have learned that showing up is an act of courage. We show up on the days when hope feels strong and on the days when it feels dangerously fragile. We show up to appointments, to therapy mats, to sleepless nights filled with monitoring temperatures and listening to every breath. We show up even when our own strength feels thin, because Jax needs us to.

There is no roadmap for this kind of journey. We learn as we go, guided by instinct, medical advice, and the quiet resilience our son shows us daily. We’ve learned to take things one day at a time — sometimes one hour at a time. We’ve learned that it’s okay to grieve the ease we expected, while still fiercely celebrating the child we have.

This journey has reshaped our understanding of strength and patience. It has taught us that hope doesn’t always look like big milestones or dramatic turnarounds. Sometimes hope looks like steady persistence, like putting one foot in front of the other even when the path is unclear. Sometimes it looks like trusting that every effort, no matter how small, matters.

Jax’s story is still being written. There are chapters ahead we can’t yet see, challenges we haven’t yet named, and victories we haven’t yet imagined. What we do know is this: we will continue to fight right alongside him. We will continue to advocate, encourage, and believe in him — even on the hardest days.

Because while this journey is far from over, so is Jax’s strength. And so is our hope.