Kristin Seward | Lens of Hope

“It may be true that people say, ‘I didn’t ask to be born.’ But I think we did- and that’s why we’re here. ~ Toni Morrison

A close up of Ava's hands sitting on her lab

She swished her way down the stairs in her cream sequin dress that she picked out especially for that day, and stopped me in front of a table in her living room. On it sat a picture of a girl in the same sequin dress from nearly a year ago — her sparkly brown eyes and captivating smile were unmistakable, even though they were framed by a smooth, shiny head.  

“This is my favuhwit picture of me,” she told me. I instantly noted the pride in her voice, as if she was showing me something other than the painful truth of why I was there in the first place.

A photo of Ava wearing a glittery dress
Ava looking at a photo of herself taken when she started her cancer treatment

Ava loves all the things you would expect from the girliest of girls. She plays with dolls, is obsessed with Wednesday Addams, and knows the words to any Harry Styles song. Her charisma is woven into every fiber of her being, each phrase and facial expression her own trademark (her duck face is a personal favorite). She’s a tiny force, with a side of silly and sweet. 

In many ways, she’s just like any other five year old. And then again, she’s not. Not by a long shot.

Ava wearing a glittery dress sitting with her mom on her bed

Last September, she was a guest on the Anderson Cooper show with her mom, the words “Brain Cancer Warrior” displayed across the bottom of the screen. Kassi had reached out directly to Anderson about the harsh realities of childhood cancer — specifically the lack of funding and research for children, most of whom are still receiving drugs that were designed for adults and have been around for decades.  For cancers like Ava’s — medulloblastoma — funding is particularly scarce.

Collage of photos of Ava during her cancer treatment

But it’s more than the title of “hero” or “warrior” that sets her apart, rather a piece of her story I learned that — in my opinion — only serves to underscore her magnetic spirit: 

It’s how much Ava wanted to be here. 

I’m not simply talking about her fight with an invasive brain tumor, but what was set in motion about seven years ago at this time.  

As she bounced happily on her trampoline, Kassi and Brian talked about how long they waited for her — how desperately they had hoped and tried, the miscarriages, the heartache.

Ava standing in a trampoline while her mom is standing outside of the trampoline

And that was where — to her complete shock and joy — she heard her unborn daughter’s heartbeat for the very first time, a blurry shape of the liveliest little girl people would later refer to as an “old soul,” perhaps, because Ava Leigh waited for her time and overcame all the odds just to get here. She may have arrived three weeks early, but she was still perfectly on time.

Ava's mom holder Ava after she was born

When you meet Ava, it’s easy to recognize there is something special about her, and it’s only natural to attribute it to her magnetic personality, or her big brown eyes and the way she can light up an entire room with her smile.

But I think we’re ultimately drawn to her because her very essence is one of hope, the purest example of love and life finding a way

— as it has always done, and will continue to. 

Ava before her cancer diagnosis
Ava folds her hands under her chin
Photo Kristin Seward | Lens of Hope

Ava turning her head looking over her shoulder