By Julie Gargotta
Even in her sea-foam-colored corduroy pants, you can see how thin her legs are. Sitting in a purple and black wheelchair, she’s clad in a cheerful striped sweater with a red bow. Her name, Emma, is embroidered in purple, loopy letters into the back of her chair. As she sits, she wrings her hands, like she’s kneading imaginary dough. Her head sways slightly from side-to-side; her brown bob lightly bounces.
Suddenly, a black lab jumps into the little girl’s lap, eagerly licking her face. Emma isn’t ruffled. She glances at the pup.
“Her mom wants this; it’s not gross to her,” Yolanda says with a smile. Carefully, slowly, Yolanda helps Emma reach into a green pouch full of dog treats that’s perched on her lap. Hand-over-hand, Yolanda and Emma drop a treat on the floor, and the dog hungrily scarfs it up. “Now, visit!” Yolanda calls. The dog plops her head onto Emma’s lap, looking up at her girl with soft, round eyes. Again, they toss a treat to the pup waiting below.
Emma Wenger is 10 years old and severely handicapped. She’s a 5th grader in Loris Grogan’s IU class at ELCO Intermediate School in Lebanon, one of six children in the class that requires constant care. Emma’s personal-care assistant, Yolanda Gonzalez, has been with her since she was in kindergarten. Yolanda speaks softly, with a slight Spanish accent and distinct lilt; she smiles through her barely noticeable braces.
This past fall, a new element was added into the mix: A peppy, 2-year-old service dog named Kindle, a companion for Emma. But in order to get the dog, Yolanda had to attend training sessions for two weeks alongside Emma’s parents. She was petrified.
“I was really scared of a big dog,” she admits. She references a younger time when she was bit by a Great Dane. “I told my supervisor, ‘I don’t know if I can work with Emma.’” At first, Yolanda dreaded reaching out to give the dog treats. But once she began training with the pup, all fears melted away. She began to extend her hand with confidence. Today at school, the dog is wearing a collar that reads, “BFF,” as well as a green vest that indicates she’s working. When Yolanda takes Emma to wash her hands at the in-class bathroom, Kindle goes, too. “Go on through,” she commands. Kindle gingerly walks backward in front of Emma’s wheelchair. She gently nudges open the door to the bathroom, looking from side to side. Kindle then looks on as Yolanda gently wipes Emma’s hands.
The dog is skilled, well-trained, and if you ask Yolanda, Kindle has helped Emma immensely. She serves as a comfort after Emma’s seizures and an everyday companion. When the girl focuses on her dog, her deep stares stop her head from moving. For that reason, Yolanda is perpetually trying to get Emma to locate the pup. “Where’s Kindle, Emma? Where’s Kindle?” Yolanda always asks.
Something Was Wrong
After marrying her high school sweetheart, Gwen Wenger, Emma’s mom, was determined to become an elementary school teacher. So, as her husband, Keith, worked construction, Gwen studied and commuted from their rented home in Lititz to Millersville University. And while they appreciated having both sets of parents nearby – they too lived in Lititz, where Gwen and Keith were raised – the young couple had their sights set on bigger dreams: They hoped to one day build a house and raise a family of their own.
In 2002, things started to fall into place for the Wengers. Gwen completed her Master of Elementary Education degree at Millersville University. That same year she also became pregnant with their first child. Overjoyed at the prospect of becoming new parents, they began to search for a home for their growing family. That December, when Gwen was almost 7 months pregnant with Emma, they found what they were looking for and scooped it up: A four-acre, partially wooded lot in Lebanon. Yet, they wouldn’t start building on the lot, nor move into their dream home, for several years. They had no inkling of what the near future would hold for their family, for their unborn child.
Gwen had a textbook pregnancy and delivery. When Emma was born in early March, everything seemed to be great for the first week, with no signs of abnormalities. But then the seizures began: hundreds of them a day shaking Emma’s tiny body. By 5 weeks old, Emma was at Hershey Medical Center meeting pediatric neurologist, Dr. Todd Barron. At first, the doctor was stumped: Emma’s EEGs (brain activity) were a mess, but the MRIs and spinal-fluid test appeared normal. Dr. Barron began calling neurologists all over the country to try to find answers for the bewildered parents. One doctor at Children’s Hospital of Philadelphia added Emma into one of his studies, narrowing down the diagnosis to two possible rare disorders. Her symptoms, they deduced, most closely matched those of migrating partial epilepsy of infancy. Of the test group of six children with similar characteristics, there were six different outcomes. Emma was by far the worst of the six, bringing to light the Wengers’ deepest fears. Their distress only intensified as they turned to the Internet to search for more answers.
“When we Googled, only one thing came up: A 1995 study done in Germany,” Gwen says. In the study, three or four of the infants died. None ever walked or talked, and all were severely mentally retarded. “That’s what we looked at when we were diagnosed. We were devastated.”
Night after night, Gwen would escape to her mother’s home, just two blocks away from their own. Gwen and her mother would sandwich the tiny baby in the bed between them, and she’d seize through the night.
“It was unbelievable. We just did it, day by day,” she recalls as tears well in her eyes. “The fact that this child is as good as she is, as wonderful as she is, is a miracle with the way she started.”
Keith says that, in the beginning, it was hard for Gwen to accept they would have a severely impaired child. Gwen says she just wanted to know what the future might hold for Emma.
“I felt like I had more questions than answers,” says Gwen. “Will she walk? Will she talk? Dr. Barron kept saying, ‘You’ll have to wait.’ That was the hardest part. I had to accept all worst-case scenarios so I’d be OK with that.”
After six months, Emma’s seizures started to decrease, and Gwen returned to work. Her mother kept watch of the child during the day, carting Emma downtown at 10 a.m. so Gwen could see her daughter at recess. Gwen’s students would wave enthusiastically in the schoolyard. But after they would leave, Gwen would return to her 1st grade classroom deep in sorrow and filled with unanswered questions. The future, once so bright, looked foggy; question marks about her daughter’s health hung high in the air.
School Day Routine
Back in the classroom, Mrs. Grogan is setting up a color-recognition and counting activity for Emma, using numbers 1 through 5 and primary colors. Emma wasn’t in class last week when students made colorful Chinese lanterns. It was one of her bad days. As Grogan props up a blackboard and tacks on five pieces of colored crepe paper cut into strips, Yolanda wheels Emma over to the table. Kindle peers at the scene from the floor.
“You need to look up,” Grogan instructs. She grabs Emma’s frail hand and runs it down the strips of colored crepe as she counts. One, two, three… Blue, yellow, red… “You need to pick a color to start with. Pick one,” Grogan says. Emma’s head dips from side-to-side until Yolanda gently places her hands on Emma’s shoulders, focusing her. Yolanda helps the girl tear off a green piece of crepe paper, handing it to the teacher. Grogan sticks it onto a balloon-shaped piece of contact paper. The process of tearing just one piece of colored crepe is arduous, slow.
“There’s one…” Grogan starts. “Two… three…”
They move through the other colors, one by one, laying them on the contact paper. Yolanda periodically glances at the dog, giving Kindle cues to sit or lay down. “Alright, Em, here we go! Look what Yolanda did!” Grogan shouts as she holds the finished project up in front of Emma triumphantly. “Nice job, Emma. I betcha Mommy’s going to like that.” Grogan grabs both of Emma’s hands and waves them in the air, cheering, “Yay!”
For students in the IU class, days are structured – and for Emma, it’s no different. Each morning, Yolanda meets Emma and Kindle at the bus and takes them into the IU classroom. As Grogan starts activities with the students, Yolanda prepares Emma’s breakfast: apple cinnamon oatmeal, applesauce, milk. She feeds Emma, and she takes her into the bathroom for grooming. She brushes her teeth, washes her face and changes her diaper.
“They know the routine, what they’re supposed to do after they eat breakfast,” Yolanda explains. “This is living.” At some point in the morning, the personal-care assistant straps Emma into a pink, shiny apparatus, called a gait trainer. They slowly walk the hallways for 20 minutes, with Kindle in the lead, walking backward.
At lunchtime, Yolanda wheels Emma down the narrow hallways to the cafeteria, on the way stopping to crate Kindle. If Yolanda hand-feeds Emma, it takes around 40 minutes; hand-over-hand will run an hour. In the afternoon, Emma is placed in a stander for an hour. The old-looking, wooden contraption looks like something out of medieval times, but Yolanda insists it allows blood to circulate in Emma’s legs. “But they are careful not to push her too hard or she might seize,” Yolanda says.
Some days, Emma is seizure-free. Other days, she may have as many as 12 seizures. When Emma starts to stiffen, Yolanda instinctively sprints for a special magnet and swipes it over a port embedded just below Emma’s clavicle. She’ll then continue to swipe the magnet every 30 seconds. And while she used to seize more often, each time is still a frightening experience. “It’s scary, you can’t move her,” Yolanda explains. “You could snap a bone.”
At the end of the day, the teacher records the progress of each student onto a little black contraption the size of a grapefruit. It’s a VOD, or voice output device, that will be tucked into Emma’s backpack to take home. Since she cannot speak, this device allows Emma to share her day with her family. Yolanda then feeds Emma a snack and wheels her down to the school nurse’s office to get medication just before she leaves school.
“We’re really close, she’s like a grandkid to me, like family,” Yolanda says of Emma, peering at the girl through her wire-frame glasses. At that moment, Emma looks sleepy, her eyes begin to close, and her head droops. “We’ve got to wake her up!” Yolanda shouts. Kindle promptly jumps on the girl’s lap, licking her small, round face once again.
A Turning Point and “Team Emma”
It was around the time that Gwen returned to teaching that she had an epiphany. A colleague shared the advice, “True acceptance is peace.” The colleague also shared a beautiful poem, “Welcome to Holland” by Emily Perl Kingsley. In the piece, the author writes about what it’s like to raise a child with special needs. She draws an analogy between the process of planning for a baby and planning for a trip to Italy. But when the imaginary flight lands in Holland instead, you must learn to not mourn the fact that you haven’t traveled in the same path as friends, but rather adapt, appreciate the new scenery and “learn a whole new language.”
With the poem and advice still on her mind, Gwen found herself in tears one night watching a Hallmark movie about a woman raising a child with a disability. And then suddenly, it clicked: Everything would be OK. “I just haven’t looked back,” she says.
From that point on, Gwen found acceptance in her family’s situation. Her relationship with God strengthened as she began looking to the future, and they began redesigning their dream home. They now planned for Emma’s room to be located on the first floor with a wider doorway to accommodate her wheelchair. After three years of making payments on the wooded lot in Lebanon, the Wengers broke ground in March 2006. They moved in six months later.
Over the years, they’ve had to learn to read their daughter in order to assess her needs. They say she’s a happy, content child, which brings peace to the couple.
“Emma is perfect the way she is. If something comes along that can make her life better, bring it on,” Gwen says.
For the Wengers, that “better” came along two years ago when they attended a local baseball game with Emma.
“Have you ever considered getting her a dog?” a man asked them as he stood beside a service dog.
That chance encounter got the ball rolling. The Wengers soon put their name on a waiting list with Susquehanna Service Dogs (SSD). But the process of actually getting a dog was lengthy – and expensive. It took interviews with trainers and volunteers, as well as months of canine therapeutic evaluations to see if Emma would respond positively. It also cost $5,000 for the pup, which the Wengers raised through generous contributions from family and friends. “We’re not used to asking for things, but people said, ‘Thank you for allowing us to be a part of this,’” Gwen says.
During the waiting process, the family began volunteering for SSD. After months of pet sitting for trainers and visiting with litters of potential service dogs, it was finally their turn. In June 2013, they received the call that Emma would be going to meet two eligible service pups. And that’s when she met Kindle. Straight out of a litter named after various e-readers, the vivacious lab pulled on her leash and yanked the trainer across the room to meet the girl. Emma became focused, attentive. She also briefly stopped her self-stimulating behaviors, like squishing her hands together and swinging her head. After 10 minutes, Kindle had curled up at Emma’s feet. By the end of the session, Emma had her feet propped up on Kindle’s back.
“Everybody in the room had goose bumps,” Gwen says.
Though the connection was obvious, the Wengers waited for another month to officially find out that Kindle would be their newest family member. With 60 days to go, Gwen, the ultimate teacher, set up a chart in their home. Each day they would put a sticker on the calendar until the day they brought Kindle home. In the fall of 2013, “Team Emma” – a trio of Gwen, Keith and aid Yolanda – trained with the pup for two-and-a-half weeks. Gwen also began blogging as a way of sharing their journey with friends.
The day they finally brought Kindle home, Keith and Gwen felt indescribable relief. Their little girl would have a companion who could improve her quality of life.
“She’s Our Angel”
Tucked away in a wooded neighborhood and down a windy road sits a well-lit log cabin. Inside, the wooden rafters slant sharply. There is a tall, stone fireplace in the den and two deer heads, reflecting Keith’s affinity for hunting, mounted high on one wall. An upper railing that overlooks the space is draped in icicle lights. It’s cozy and warm inside.
Each evening, the family sits in the den, or the “great room” as they call it, catching up and watching television. Tonight, Gwen is clad in a pink and white baseball T-shirt; her hair, still wet from a shower, is swept up into a clip. Keith sits on the couch, flipping through channels for something to watch. And Emma, already in her pajamas, lounges in a miniature white and blue polka dot arm chair on the floor. She has a snowman blanket draped across her lap, her feet kicked up on a bean bag chair before her. Kindle quietly sits beside Emma, occasionally looking up and wagging her tail.
Gwen walks over to Emma with the VOD and leans down so the girl can see the gigantic yellow button on the device. Gwen takes her daughter’s hand, presses the button down several times, and listens to a series of messages from Emma’s teacher, Mrs. Grogan.
“I participated nicely. I was giggly this afternoon!” the message chirps.
When they’re finished listening, Gwen takes her turn recording, from Emma’s perspective. “Good morning, school friends! Happy Thursday!” she sings.
Kindle’s vest with the sewn patch, “Please don’t pet me while I’m working,” is now off, and the black lab is circling the great room with a red chew toy in her mouth. She stops before Keith and engages him in a tug-of-war on the Persian rug. She then trots back over to Emma and rests her head on the arm of Emma’s chair. Soon, Emma has her fingers in her mouth, and she’s curled up, which her mom says indicates she wants to snuggle.
“I can’t tell you what this dog has done for us, with Emma’s bad days last week…” Gwen trails off. “Just having Kindle there made me feel better. She’s not just a pet –”
“She’s a partner,” Keith interjects, before scooping up his daughter and ducking into her room to change her diaper.
Gwen says while she and Keith give Emma all they can, nothing can compare to the companionship and security that Kindle provides. When Emma’s having a bad day, Kindle doesn’t leave her side. There is a discernible bond between the girl and her dog, and they’ve only been together for three months.
They are confident that Emma will develop into an adult, but she will be a needy one. They don’t harbor unrealistic expectations. Emma may never walk. She may never talk, either. But the Wengers do hope that Emma may one day eat on her own, communicate more easily and make her own choices. Kindle is the motivation, they say. She’s the missing piece of the puzzle that they had been praying would drop into their world.
Back in her chair, Emma appears to be drifting off now, the dog relaxing comfortably by her side.
“Emma’s a gift. That’s how we feel. She is our angel,” Gwen says. She mentions the immense support they’ve had – good insurance, doctors – and how, without these components, Emma might not have survived. “I know there are challenges, things that make it hard. But I feel privileged God chose us to be Emma’s parents.”