MILTON-FREEWATER — The wind whipping through the Ferndale Elementary School parking lot carries a sting. Robin Reynolds, a paraprofessional, is buttoned into her fluffy winter coat.
So is Jessie Schmaltz, decked in jacket, mittens and a lap quilt. But the petite student lifts her face to the frigid air, eyes the color of smoky quartz watching the breeze shift the neighborhood trees.
“She loves the wind,” Reynolds said with a smile, bending over the wheelchair to tuck Jessie’s blanket more snugly around her legs.
The two are waiting for Jessie’s bus, the one she rides at the end of a shortened school day, after she and Reynolds have worked on nutrition and physical therapy. As well, Jessie has a daily assignment to visit the behavioral classroom, where the students dote on her, calming in her presence.
On a good day, the little girl is also willing to eat and can exit the school without having had a seizure.
“Sometimes she gets through the day, but then it happens at night. You never know when,” said Jessie’s mother, Kori Schmaltz.
Jessie, 8, has undiagnosed neurodevelopmental disorder with intractable seizures and scoliosis of the back, her mom explained. Kori is waiting at the end of the winding driveway for her youngest daughter’s bus, which pulls up at the rural home at 2:15, about five minutes after leaving Ferndale.
Her baby was born healthy, despite arriving about a few weeks early, weighing 6 and one-half pounds and sporting the full head of the lustrous brown hair that now goes down her back.
“She looked beautiful,” Kori said.
At 3 months old, the infant went into convulsions. Her parents rushed her to the doctor’s office, where Jessie seized for the first time. A CT scan, however, showed nothing.
Indeed, every scan has been clear since.
Jessie continued to have seizure after seizure, which begin in the center of her brain and blast outward. Specialists continued to ponder possibilities and take stabs in the dark, prescribing anti-seizure drugs.
“She’s been on all but two anticonvulsants,” Kori said. “She forms a tolerance to them and she’s done.”
When the baby turned a year old, tests showed she was having atypical infantile spasms, Kori said.
And that’s when the Schmaltz family heard the last words Jessie said. Now nonverbal — although she’s plenty expressive — she was saying “mama,” “daddy” and “sissy,” Kori recalled. “And ‘no.’”
That’s when hope that Jessie would be fine if she could outgrow the seizures died, as well.
Caring for the baby became consuming. Kori and her husband, Robert Schmaltz, have two other daughters and both parents worked full time. Finding skilled caregivers for their youngest child turned out to be impossible, and Kori left her job at Washington State Penitentiary in 2006 to stay home with Jessie. She eventually was able to return to part-time work at the exhibitor’s office at Walla Walla County Fair and Frontier grounds, but only with the help of willing family members, she said.
Unwrapped from her outer layers, Jessie snuggles in her mother’s arms in the family living room. The girl swings her feet, happy to be out of her wheelchair, and lets her gaze wander back to her mom’s smile every few minutes.
Jessie appears to say everything she needs to when she locks eyes, Kori said. “You can read her very easily. She will literally roll her eyes and look away. That’s her way of saying ‘I’m fine, leave me alone.’”
This afternoon is routine, Kori said, kissing her daughter’s head and asking if she was sleepy. There is — always — a tidy nest of covers on the living room floor for the little girl to nap or “chill.”
If anyone can get Jessie to eat a little, that’s a victory. Kori and Robert spend about $400 a month for pediatric nutrition supplement and puree everything.
Sometimes Jessie will be interested in TV, preferring Westerns over everything else. She loves music, as well, and is highly tactile. “Lots of her stimuli is touch and texture. She likes to crinkle plastic. There’s a lot going on in there, they just can’t figure anything out.”
With a quick hoist, Kori stands with the 35-pound child to transfer her to the floor, where Jessie loves to watch the evergreens outside the windows sway. “Wind fascinates her, ceiling fans fascinate her.”
Her back has issues and Kori knows she won’t forever be able to lift Jessie, who doesn’t walk or crawl but can roll with the best. Kori has had training how to move her daughter safely and without injury to either.
It’s nothing new, Kori said with smile. “I’m a country girl, it’s the way we were raised, bucking hay.”
Her girl may not weigh a lot, she added, “but when she has a seizure, the strength that comes out of them is completely unreal.”
Jessie meets all the eligibility requirement for Oregon’s Children’s Intensive In-Home Services, which provides nursing care for medically-fragile kids, and she’s approved for the program. It’s full up, however, and one of the 200 or so slots won’t open until someone turns 18 or dies. Jessie has been waiting for three years, Kori said.
In the meantime, there is equipment available to improve things for everyone, including Kylee, 20, and Jazmyn, 12, who help care for their little sister when they are not at school.
Three items in particular are on the family’s wish list. A special needs car seat with a swivel base can hold children up to 110 pounds and offer upper body and head support to keep Jessie stable during a seizure.
A bath chair would offer safety for the child who loves water, Kori said. “We’ve had seizures when she’s in the tub. When she’s wet it’s very difficult. I keep a hand on her at all times. (The seat) would keep her from falling.”
Then there is a pelvic walker that could open the world considerably wider to Jessie, allowing her to stand independently.
“She hates being in the wheelchair but she has no sense of balance ... she’ll smile at you the whole time she’s going over.”
It took a year to teach Jessie to bear weight on her legs and when she’s done, she’s done, Kori said. “Her legs turn to Jell-O.”
No insurance provider will cover the equipment, which will run about $4,000. Jessica’s aunt, Amy White, is launching an online auction to raise try to raise the money.
Robert and Kori have been loathe to ask for help — she has seen fundraising abused in other cases, Kori said. “And I don’t ever want to be associated with that.”
Yet if White’s effort is successful, there is no telling where her girl might go, Kori said, stroking that thick brown hair that frames Jessie’s face. “A lot of the stuff they said she wouldn’t do, she’s done.”