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Posted: 11:10 a.m. Monday, Nov. 26, 2012

Prematurely born girl gets to be a diva on her day

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Prematurely born girl gets to be a diva on her day photo
Celeste Elizabeth Simon, or Chella, enjoyed the party for her third birthday. CONTRIBUTED

By Daryn Kagan

When you get an invitation to party with a superstar, you grab it. That much I know.

And by “superstar” I don’t mean some overhyped celebrity more impressed with their fame than what it truly means to be great. Been there; done that. Spent enough time with those types.

Rather, I’m thinking of a little lady who could open a school for greatness and teach quite a few lessons on magnificence and overcoming obstacles.

Celeste Elizabeth Simon, also known as “Chella,” is living one incredible life.

When her mom, Heather, was only 25 weeks pregnant, doctors told her parents it was time for their daughter to come on out. It was a combination of Heather’s screamingly high blood pressure and things going south inside her womb.

“They told us her best and only chance at that point was out, not in,” Heather told me two weeks ago.

Twenty-five weeks? In holiday turkey cooking parlance, that is a little over half-baked, which is exactly what most people might think of the chances of such a premie surviving, let alone thriving. She weighed a whopping 1 pound, 3 ounces. She was only 12 inches long.

“My family said Chella looked like baby sparrow you could see through,” dad Keith remembered.

“Her tiny fingers were still webbed,” Heather said. “There were only tiny holes where her ears were supposed to be.”

It’s hardly the way you want to send your kid on her way. Indeed, since her birth there have been huge challenges including nine months in neonatal intensive care, open-heart surgery and almost three years of keeping Chella inside, away from scary germs that could’ve killed her.

“She’s been a baby in a bubble,” Keith said.

And yet, this is the kid who refuses to give up. Despite what her mom says is “just a touch of cerebral l palsy, she’s learned to walk and talk, doing it as she does all things — on her timetable, not some chart in the pediatrician’s office.

When you look in her hazel green eyes you see an old soul with 1,000 years of wisdom looking back.

This birthday, her third, was the first that Chella was able to have a birthday party.

Like any diva, she knew exactly what she wanted: a Popcorn Princess Party.

We happen know Chella because my husband and her dad play together in what we women refer to as The Old Man’s Baseball League.

With the coveted invitation to the Popcorn Princess Party in hand, we packed up our kids and drove an hour to their small town. This is who I want my kids to see. This is what not giving up and fighting for your life looks like.

There was the little lady of honor sporting a red ruffley party dress and a red feather in her hair. She showed off her newly pierced ears, ears that grew as she did inside that incubator.

Those formerly-webbed fingers are now long and busy as she entertained family and friends banging on a piano keyboard and singing made-up songs.

How far will she go? What will her limitation ultimately be? Who’s really to say?

“I just know she’s here for something special,” Keith told me over the birthday cake shaped like a giant bowl of popcorn. “She’s already touched and inspired so many people in her short life. I’m just so excited to be along for her incredible ride.”

I know two things. I’d never bet against this kid. And any time I’m lucky enough to get an invitation to one of her birthday parties, I’ll be there.

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