Then they hypothesized Noonan syndrome, which also portends a slew of health complications -- heart disease, bleeding disorders, skeletal malformations -- until they eliminated that diagnosis too. They determined that Johanna's enlarged liver spelled disaster, until they realized she didn't have an enlarged liver at all. Doctors discovered a hole in Johanna's heart when she was 11 months old and determined she had a small rib cage -- a byproduct of heart disease -- which had made her liver look unusually big by comparison. In the end, by the time she was 4 years old, she had undergone six surgeries -- four operations on her eyes, one on her heart and one to repair damage from her open-heart surgery.
Before the surgical team wheeled her in for one of her eye surgeries, Johanna, having just chosen her flavor for anesthesia -- sometimes it was bubblegum, other times banana -- sat on the gurney and looked at her mother, Jo Schoeneck. "Mommy, I be brave," she told her. "But I not happy."
But she was talking, wasn't she? Even if she was often hard to understand. Even if her mother and two older sisters, who spent all their days with her, had to act as pseudo-translators. And she was walking, wasn't she? Even if she was 2 by the time she finally took her first steps. Even if her mother was driven to tears when she found Johanna standing in her crib, because that was the first sign she could even go on to maybe walk. And she was here, wasn't she? Alive -- and if not well, then getting well -- far past the doctors' original grim timeline. Even if those same doctors couldn't, and still can't, pinpoint the exact cause for Johanna's sundry medical issues. Even if all they can offer is that it's not Turner, not Noonan, but something nameless, or at least something as-yet-to-be-named. And so they settled on being unsettled.
"The doctor finally said to me, 'Someday they will probably discover what all of this is and give it a name,'" Jo says. "'But there just isn't a name for it now.'"
Instead, the best they could do was treat Johanna symptomatically, shifting pieces in a jigsaw puzzle they'd never quite find a way to complete. Physical therapy and occupational therapy. Surgeries and medications. And before kindergarten, when Johanna was diagnosed with learning disabilities and visual-spatial disabilities, then eventually severe ADD, they shifted more pieces, addressed more symptoms -- with treatment like Ritalin and speech therapy.
Johanna made it to kindergarten, then elementary school, then high school, then college for her associate's degree -- all triumphs where once doctors had guaranteed defeat. But she was also different from the other kids with her in kindergarten and elementary school, high school and college, so she became their target.
The girl who went on to become a Special Olympics athlete in equestrian, bocce and running avoided sports altogether as a child because, she figured, did she really want to be where she wasn't welcome, try to join a team that didn't want her as a teammate? She avoided the cafeteria in high school because she'd arrive at an empty seat at a table and be told that seat was saved, taken.
She couldn't avoid the bus home in middle school, when a group of girls threw oranges at her, pelting her until she was drenched, her jacket covered in juice. She got off the bus that day and her mother was furious -- at the juice, at the bullying, at all the meanness that had come before -- and swore she was going into the school to set this right. Johanna begged her off. She wanted to handle this on her own, go into the vice principal's office to explain what happened and that she wasn't OK with it. She didn't have any particular punishment in mind but did know she didn't want that to happen again.
Before she was anyone else's caretaker, Johanna learned to be her own.
If she's especially good at her job now, it's because she's not just helping to take care of people with intellectual disabilities. She's a person with intellectual disabilities doing the work.
"I feel like I'm better able to understand them," she says. "It's not an aura. Or an energy. But I'm able to pick up, Maybe this is where they're coming from."