‘How do you not be bitter?’
Those who know Jerika best are no less amazed by her attitude.
Her aunt, Lisa Wilson – affectionately known as Auntie Bean – went to say good night to her niece during a recent weekend visit, and emotions caught up to her in realizing their remaining moments are few.
“I’m sitting on the bed next to her crying, and she … told me all these things to make me feel better,” Wilson said. “That’s Jerika.”
Jerika is often at the computer for sessions of “The Sims.” It’s a life simulation game that allows players to take on a character and engage in activities and relationships. She said it’s allowed her to better imagine a more typical existence.
When not in her chair, Jerika lies on the couch with sunshine pouring through the south window with her Chihuahua, Julie, cuddled up next to her. Mom and daughter have a lot of time to talk as Jen tends to Jerika’s needs.
Jen said she’s always done her best to keep things “fun and exciting” and as typical as their atypical journey could allow.
Jerika went to school at Janet Berry Elementary School and spent a year at Valley New School. She recently completed eighth grade through the online Wisconsin Connections Academy.
When Jerika was little, Jen would hold her on the playground swings and take her down the slide. Jerika’s grandfather, Mike, attached a laundry basket to a saucer sled so Jerika – held tight and warm in blankets – could sit upright while being pulled through the snow.
The Bolens are afforded home nurses for up to 18 hours a day, which allows Jen to work and catch some sleep. Their nurses have been like family, and members of her care team said Jerika has been more than a patient.
Nurses attended school alongside her. Today, they play games or do some cooking for fun between care needs. Occasionally, they’ll head to downtown Appleton or to the Fox River Mall.
Jerika is quick with humor and skilled at employing a little manipulation when she wants something, nurse Alyssa Dahlen said.
But she’s as sweet as she is strong, Dahlen said. She talked about Jerika’s interest in looking at pictures of her baby. She’s a girl who’s never walked, much less hopped on a bicycle. She’s mourned the loss of friends who have the same disease.
“How do you not be bitter?” Dahlen asked. “It’s amazing.”
‘It’s her pain’
Jen has kept her mind occupied by making sure prom will go beyond her daughter’s expectations. Recent weeks have brought a mix of emotions, and she attributes the best moments to her daughter setting the example.
“I’m strong because of her, that’s for sure,” Jen said. “It’s just we know we’ve literally done everything we can do.”
Jen knows many struggle to understand Jerika’s journey, including her decision to bring it to an end. She’s taken questions on how Jerika’s decision to die differs from assisted suicide.
“People don’t realize what it takes to keep her alive,” Jen said.
She recognizes many people have discomfort with the idea of someone so young making such a huge decision.
“I know she’s only 14, but she’s old enough to decide,” Jen said. “It’s her body and it’s her pain.”
Stampfli dismissed all the notions of those who’d question Jerika’s decision. For kids with spinal muscular atrophy, “the standard of care is often comfort measures from the beginning,” she said. When taking on any course of treatment, there’s always the option to stop if it isn’t offering the quality of life that was hoped, she said.
“They did it all,” she said.
As both a mom and a nurse, Jen rationally knows it would still only be a matter of time. The heavy doses of painkillers are hurting Jerika’s body, but it’s the only way to give her any comfort.
Logic hasn’t precluded emotion, and Jen has done a lot of crying. There have been times of anger and numb feelings.
“I’ll still have you,” she said while petting Tupelo, their golden retriever.
Jen entertains fleeting thoughts that a perfect combination of medications might be found to restore her daughter’s comfort, but she knows it’s fantasy.
“I don’t think she’s changing her mind,” Jen said.
Jerika already uses her ventilator on its highest settings. When taken off, she’ll be put on morphine to calm the feeling of being starved for air.
But for now, as she braces herself for those final, heartbreaking events to unfold, Jen is determined to provide one last summer of joy for a girl who’s given and endured more at 14 than many will in full, long lives.
“She’s a very unselfish little girl,” grandma Sue Bolen said, “and she’s tougher than anyone I’ve ever known.”
A PROM FOR JERIKA
What: Jerika Bolen asked to have a prom as her final wish, and the public is invited to join the party. Guests are asked to wear their “fancy” attire to the event, which will include a DJ, cake and hors d’oeuvres.
When: 7 p.m. to midnight July 22
Where: The Grand Meridian, 2621 N. Oneida St., Appleton
Funding: The Bolens established a GoFundMe page to raise money for the prom and Jerika’s upcoming medical expenses. Those interested in contributing can visit gofundme.com and search for “Jen Bolen.”
SEND JERIKA YOUR MESSAGE
We’re collecting wishes and messages for Jerika and will publish them next Sunday. Full name, hometown and state is required with your message. Email them firstname.lastname@example.org or post them on our Facebook page atfacebook.com/postcrescent at 8 p.m. Sunday.