Landon’s Story

As told by his Mom, Julie

Landon entered our world on May 9, 2017, and completely transformed our lives from the start. Before he was born, I already knew motherhood. In fact, I was already a medical mama, used to navigating appointments and advocating for my child. But when Landon arrived, he opened my eyes to a world I truly knew very little about.

At just four months old, Landon was diagnosed with epilepsy. Soon after came a diagnosis of infantile spasms, followed later by Lennox-Gastaut syndrome. Epilepsy became an entirely new, complex landscape for our family to navigate. Learning how to manage relentless seizures, specialized therapies, developmental delays, and disability threw us into unfamiliar waters. It was a steep learning curve filled with medical terminology, constant vigilance, and sleepless nights. Yet through every single challenge, Landon brought an undeniable light. He taught us lessons about patience, strength, and presence that no textbook or prior experience ever could.

Landon’s passing at just five years old was sudden, unexpected, and utterly devastating to our family. There are no words that can truly capture the depth of that loss. We live with heartache every single day. The grief does not go away, but right alongside it, we also live with joy. Landon’s love never left us. It remains steady, warm, and persistent, pushing us forward even on our hardest days.

During his life, and in every step we have taken since, something remarkable happened: community found us. We met other parents walking similar roads, therapists who poured their hearts into our boy, medical professionals who became allies, and compassionate strangers who showed up for our family. Those connections have become a lifeline. Even now, through Landon’s Legacy Foundation, that circle continues to grow. We keep meeting incredible people and sometimes forming lifelong friendships.

That deep sense of shared connection is why our collaboration with Same Wave feels so natural and meaningful. It is what inspired us to design this special edition bracelet. 

Sometimes, in the quiet moments between advocacy and daily life, the weight of his physical absence catches up with me. I wrote these words when thinking about our unbreakable bond:

Sometimes I look through my rearview mirror,

hoping that I’ll catch a glimpse of you.

Your little feet kicking the back of my seat,

squeals and sounds to let me know that you are there.

I wish I could have somehow known

that our earthly time together would be short.

I’m thankful for the extra time that we did have, just you and me.

Growing in my belly.

Keeping each other warm and safe.

Did you really choose me to be your mama?

I could not predict all the joy and heartache that was yet to come.

The future couldn’t have been explained in words anyway.

It had to be felt 

and experienced.

You taught me that.

So what do I do now 

with this love for you,

when I can’t hold your hand, 

or kiss your cheek. 

or listen to you breathe?

I bite my lip, 

and close my eyes,

and imagine what you might want me to do.

And that is Landon’s Legacy.