A year ago this summer, two young Lincoln parents faced the death of their baby girl, who had a rare and terminal genetic disorder. Devastated, they stared at a future without her, their firstborn. But then, just a few days after the baby's funeral story ran in the Lincoln Journal Star, they received some shocking news.
Chubby Bubby.
Chubby Bubby Bumblesmorf.
Chubby Bubby Bumblesmorf of Bubbytown.
Her proud dad, an ex-Marine, nicknamed her that. He bought her a pink baseball cap that said "Girls Rule." She had chubby legs and red hair. Her dark blue eyes, like her mom's, seemed to understand everything.
But Morgan Jane Sitzman was born with a body that was as floppy as a noodle. Her parents didn't know at the time that they each carry a recessive gene for spinal muscular atrophy, Type 1. If both parents carry this gene, their babies have a 25 percent chance of having SMA.
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Most babies with it don't live past their first year.
Chubby Bubby lived six months.
Her parents, Eric and Katie Sitzman, buried her last summer, in a beautiful dress with her pink horse and green pacifier by her side.
Then, just a few days after the funeral, they took a vacation to Colorado. Some friends had loaned them their place so they could get away and relax.
They parked their car near the top of a high mountain.
"I tell you what," Eric said recently at their home in south Lincoln, recalling that day, "I've never seen a sky as beautiful and blue. We just thought of Morgan. We sat up there maybe an hour, just talking to her.
"We sang all of her songs we used to sing to her."
But while on that vacation, Katie's body started to feel strange, like it did before.
She took a pregnancy test and saw a blue line. But it was very faint. She wasn't sure what that meant. And she'd been breast-feeding Morgan, so how could she be?
"I was so scared I was pregnant,'" Katie said. "I was like, ‘Oh, my gosh! Oh, my gosh!'"
First thing back home, she took another test. She walked out to Eric.
Here, she told him. Look at this.
The line was dark blue.
For a moment, they forgot all about spinal muscular atrophy and the hell they'd just been through and were as happy as any parents could be.
Then the fear hit again.
What if this baby had SMA?
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Wyatt Morgan Sitzman was born March 31. Two easy pushes and he came out.
He was a little bear, weighing 10 pounds, 2 ounces. His feet were so big they didn't fit that little card they put his footprint on.
And he was kicking his chubby legs.
"There he goes!" Eric says, smiling down at their second-born. "There's a big smile for Dad!"
Wyatt is strapped in his sister's old bouncy chair, kicking his legs. He wears a shirt that reads: Hello, I'm now here.
Last year, after finding out they were pregnant again, Eric and Katie spent weeks with a cloud of dread over their heads until the day the phone rang and the genetic counselor told them their baby wouldn't have SMA.
That he's not even a carrier.
But until they actually saw him kick his legs at birth, a part of them still worried.
He's hungry.
Eric brings him over to Katie, who slips him under her shirt.
She sits on a sofa. Down the hallway is Wyatt's nursery. She chose a cowboy theme. The room used to be Morgan's. Lambs and hot pink.
Eric had a hard time last winter when it was time to pack Morgan's things away and decorate it for a boy. It was easier for Katie. The pregnancy made it more real. She'd felt Wyatt growing and moving inside.
They're packing up the whole house now. They have it for sale. Eric got a promotion, and they're moving to Indianapolis.
As much as they love Lincoln, they say, this will be a new chapter for them, a new start in a new city.
"It's hard to leave," Eric says, "with everything that's happened. But I think it's going to be good."
He laughs.
In 18 years, he says, he expects Husker football coach Bo Pelini to be knocking on their door.
nnn
Telling Chubby Bubby's story last year helped them, they say. They got to raise awareness of SMA and they got to meet other parents affected by it. (One couple they'd bonded with had a funeral for their baby girl just a few days ago.)
The highs and lows of the past year and a half have changed them. Now when they read in the paper about parents who've lost a baby, they understand. It could be a car wreck or whatever. Their hearts go out more now to anyone who suffers.
Now they see the picture.
Life is short, for everyone.
"And I think you're just so grateful," Katie says. "It's like every day is a gift.
"We have to stop and remind ourselves of that sometimes when we're frustrated, even with him. We just have to remember what it was like with Morgan, when we took every day like it was Christmas and every day like it was her birthday."
They're going to keep trying to get the word out about SMA. Maybe someday there will be a cure. They're so happy Wyatt won't have to suffer like they did when he's a parent, because his babies won't have it.
Katie lifts him out from under her shirt.
"Are you done? Are you done?"
She holds him upright on her lap, and he stares at a large photo on the wall behind his mom.
Chubby Bubby.
He does that a lot, she says.
"I always wonder if he's looking at her. Maybe they're familiar with each other."
Maybe Chubby Bubby looks over him now, they say, like an angel.
Says Katie: "We feel like Morgan's the reason he's here."
His proud dad gave him two nicknames.
Luv Dubz.
Little Bear.
And maybe someday, many years from now, they'll all live together in Bubbytown.
Reach Colleen Kenney at 402-473-2655 or ckenney@journalstar.com.
