She’s Walking in Her Mother’s Footsteps
As a child, Shela Johnson spent time at Riley Hospital for Children with her brother who was treated for spina bifida. Now she’s visiting Riley with her son who also has spina bifida.
It’s the second time around for Shela Johnson.
Frequent visits to Riley Hospital for Children at IU Health was something she did as a child – following in her mother’s footsteps, watching helplessly in the background as her older brother, Joshawa Miller went through treatments for spina bifida.
This time, Shela Johnson is at Riley Hospital with her son, Jesse Johnson, 15, who was also born with spina bifida. And just like the young Shela Johnson, Jesse’s little sister Emily Johnson, 9, sits in the wings, watching her big brother make his way through the journey of ongoing hospital visits.
“It’s like the same scenario played over again,” said James Johnson, Shela’s husband and father to Emily and Jesse. “Only this time, treatments have progressed and we’re hoping for different outcomes.”
Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. Jesse’s uncle had one of the most severe forms of the neural tube defect. Many of his organs did not develop properly. His mom, Velvet Miller, donated a kidney to her son and he was on dialysis for years. He died in 2000 at the age of 20.
Shela Johnson was in the early months of her pregnancy with her firstborn child when she first learned he had spina bifida.
“I could have opted for surgery before his birth but I didn’t want to take that chance. The risks were too high and I knew that even with the challenges, we were going to make every opportunity to give him a full life,” said Shela.
And that they have.
Jesse doesn’t think there is any part of his body that hasn’t been touched by medical professionals. He’s had numerous procedures – a metal bar in his back to straighten his scoliosis, surgery to straighten his hips, foot surgery, and eye surgery - just to name a few. On this monthly visit to Riley he is having a urology check up.
But like a typical 15-year-old, Jesse has a life outside the hospital waiting room.
Wearing a Purdue sweatshirt, he grins and shakes his head when his mom tells how he enjoys school dances, and how he grew from 40 pounds to 100 pounds after his back surgery allowed him to respond to his robust teen appetite.
He loves spending time with his grandparents in Kokomo where his grandpa takes him to eat foot-long hotdogs and his uncle Joshawa’s mom, Velvet Miller, feeds him her famous “old-fashioned breakfast.”
He also loves sitting on the deck of the family home and shooting his air soft and bb guns into the cornfields, said his dad.
“What a lot of people don’t know about Jesse is he’s a storyteller,” said James Johnson. “He had the school convinced I was a cop and he had a teacher convinced he had a baby brother named Toby. I think he just does it to get people’s reaction.”
Toby is the name of the family dog and James Johnson works at Wabash National. No baby brother and no law enforcement officer in Jesse’s family. But the family sees these tales as a way Jesse expresses his independence, his personality.
As an eighth-grader at Battleground Middle School in West Lafayette, Jesse says math is his favorite subject. He is also enrolled in a life skills class where he learns to count money, go to the bank, and live on a budget.
With high school on the horizon, his parents are hoping Jesse will be able to get a job and eventually live on his own.
“If I have to work until I’m 90, he’s going to try to live on his own if he wants to,” said his dad. And Shela Johnson has already witnessed progress.
“Things are so different now, so much more advanced than when my brother was here. Obviously they’ve done some of the same surgeries to replace nerve endings but they know more now than they did then,” said Shela Johnson.
“Coming back here is almost comforting,” she said. “Visiting Riley has been like visiting family.”
-- By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at T.J. Banes or on Twitter @tjbanes.