KYLIE’S STORY

Patience Salgado | Lens of Hope

She greeted me with a tiny wave through the screen door as I walked down the hill to their house, like she had been waiting for an old friend, no stranger in sight.

Their home was neat and tidy with pockets of kid goodness in various places, crayons and mermaid pictures on the counter, kid art on the walls and a doll with a bald head lined up with others on the floor ready for the dancing show. I was promptly offered a wooden painted cookie and returned a pretend chomping sound along with a  “Mmmmm!” of delight. Giggles and bright smiles filled the entire room.

This is the land of childhood, you could feel their inner security and safety within the ability to just be almost untouched.

It was hard to imagine anything so scary had ever happened. 

Three year old Kylie had a stomach ache and distended belly that hung around all weekend, even after the doctor’s visit and a little miralax. She rallied so the camping trip went on but on the way home it was decided something just wasn’t right. Still in camping clothes and gear, the family found themselves in the pediatric ER with a diagnosis of cancer just before midnight.

An entire life turned upside down in one conversation.

It would take another agonizing two weeks to get an exact diagnosis, Burkitt Lymphoma, an extremely rare and aggressive cancer. 

There would be no talk of cancer, Lauren and Carson knew this instinctively and almost instantly, because they knew their girl.

You see, Kylie does not contain a joy that is just palpable, it is more a force that spills out onto everything and everyone around her. It is a solid strength and determination that grounds and guides her every move, simply by her breathing. A powerful spirit that requires a protection, not only for its purity, but also a deeper knowing just how much it is needed and should exist in the world.

The cancer became known as the “little purple cells”, not only for Kylie’s spirit, but also for her siblings, six year old Layla and Jack, who was a newborn at the time.

This great wall of love went up, fiercely and tenderly held by two determined parents with the same strength of heart that created and birthed such a girl.

There was the constant work of holding each moment, carrying the emotional burden, living in reality and projecting confidence that made space for Kylie to continue being Kylie, a remarkable feat in the middle of a nightmare.

And Kylie she was, well, “Queen Kylie” to be exact, named by the nurses and doctors. Nurses who made a space for her to work at their station, complete with her own swivel chair and sign, or rather, throne. A little girl who didn’t appear to be enduring chemo, but rather running resilience laps around the floor.

When she was confined to her room with covid, she paced the doorway, greeting and talking to everyone who walked by in her tiny mask, a proper six feet away, not an inch to spare. One who found her way through, somehow holding her innocence and magic, thanks to that intentional care mixed with her own power of being.

Two parents sit at a kitchen table with a look of tired on their faces that only protectors of this sort know, leaning into a deep gratitude of answered prayers, yet still guarding until the coast is truly clear. I watch as they continue to hold a space in that living room, because the show is starting, and there is plastic pizza being handed out.

An entire life of strength and joy to be shared, all growing from the safety of their love.

One that was worth everything they gave, one that they receive back with every breath from their determined joyful little girl.