Twins bond in the gift of the other: Hailey is there for Olivia, born with epilepsy and cerebral palsy
By Rebecca Catalanello, Times Staff Writer
Published Friday, July 13, 2012
[ see original Tampa Bay Times article & video clip ]
CLEARWATER
It was just after the 2 p.m. opening time and already Hailey Scheinman's lemonade stand had attracted a crowd.
The 7-year-old turned around to brush the sleep from her twin sister's eye. Olivia sat quietly in a hot pink wheelchair that was decorated with flowers and butterflies.
Hailey's best friend arrived to help, and the pair jumped up and down at the end of the driveway.
"Lemonade! Lemonade!"
Hailey's friend said goodbye a couple of hours later, and Hailey stood at the edge of the driveway watching the girl's car disappear down the street.
Hailey retreated to the front porch and counted the profits: $142.65, all for her sister's physical therapy.
What makes a good sister?
In the womb, Olivia and Hailey Scheinman formed to the thump of the same heartbeat. Cells divided and organs sprouted, skin and hair knitted together while fluids swirled. Their mother rocked them with her every step.
For reasons no one knows, something didn't proceed normally for Olivia. During the first trimester, her brain didn't form the way it should, the way her twin sister's did.
Her body shook with seizures shortly after birth. At first, doctors diagnosed her with Ohtahara Syndrome, a neurological condition that comes with a high incidence of infantile death. Later, they reassessed, calling what she has multifocal partial epilepsy and cerebral palsy. She has undergone two major brain surgeries and takes a laundry list of drugs to control what Hailey calls "the shakies."
For seven years, life has relentlessly pulled Hailey and Olivia apart — milestone by milestone.
Hailey walked at 11 months, talked at 15 months, kicked her first soccer ball at 5. At 7, Olivia cannot stand and struggles to hold her head up. She smiles when she's happy, but she cannot say it. For years, Olivia's progress has been measured hour by hour, with each letter "S" her mother scribbles on calendars when she has a seizure.
It wouldn't be hard to imagine a scenario in which the trajectory of the sisters' lives simply continues to diverge. But something in Hailey has resisted that. She seems determined not to lose her grip on the being to whom she is closest in the world. Her mom thinks that because of Hailey's efforts, the sisters are closer now than ever.
What makes a good sister?
Hailey Scheinman doesn't have the answer. She's 7.
Hailey Scheinman is the answer.
• • •
It was the week before Mother's Day at Leila Davis Elementary, and the first-graders fidgeted and laughed, many of them sitting "crisscross" on the floor as their teacher had instructed. Hailey was one of them.
Two little girls in wheelchairs appeared on a video screen.
"Hi, Livy!" Hailey waved to the screen. Her teacher called on Hailey to read the first few pages of My Mom to Olivia's class at Paul B. Stephens Exceptional Student Education Center via Skype.
"She's nice, my mom," Hailey read aloud, her head tucked into the hardbound library book. "My mom's a fantastic cook. And a brilliant juggler."
She turned the book toward the videocamera so her sister could see the illustrations.
Ms. Davis called on someone else to read. Hailey took her seat among the other students.
On the screen, a teacher's aide fed Livy PediaSure through a tube connected to her stomach.
• • •
Two rooms. One lavender-painted wall separating them.
On one side, dolls and miniature furniture fill a three-story dollhouse. Children's books cram a bookshelf. Figurines pose around a Harry Potter Lego castle. Family photos, soccer trophies and achievement medals sit on tables and hang on walls. Fairy stickers and butterflies are everywhere.
On the other side of the wall, a red-wheeled mechanical lift is positioned beside a massage table turned changing table. A video baby monitor hangs above the comfy full-sized bed, which is pushed into a corner for safety.
Butterflies adorn this room, too, including a butterfly-shaped pinata from one of the girls' birthday parties. Two plaques from Lampert's Therapy Group hanging above the changing table describe Livy as a "brave child" for her hard work completing two rounds of three-week-long intensive therapy.
One night in March, Allison Scheinman dressed her daughter Livy in soft cotton pajamas that read "Sweet Dreams" across the top. She leaned across the massage table to squeeze a stuffed glow worm that lit up and played Hush, Little Baby. She brushed her daughter's hair, wet from the bath, then lifted her to a sitting position. Livy smiled.
Hailey flitted in and out, wearing a lavender nightgown. When her mom asked her to fetch the "good stuff," Hailey ran to the bathroom to get her sister's toothbrush and toothpaste.
If it were up to Hailey, these two rooms would be one. They'd have sleepovers every night.
But Livy doesn't sleep well through the night, so her parents have told Hailey no. "Maybe one day," her mom has said.
Allison deposited Livy on Hailey's bed. Hailey sat at the edge and searched for her journal.
"Hailey, what are you going to write about?" Allison asked on her way out.
"You'll see," Hailey answered.
In the quiet of the dimly lit room, Hailey hunched over her paper.
After a few minutes of silence, she leaned back to lie next to her sister and raised her journal for Livy to see.
"I just wrote this in cursive for you," Hailey said.
You are the best Livy, it said. Love, Hailey
"And I wrote it in cursive."
Earlier that day, Allison, 37, steered her silver Chrysler Town & Country minivan up U.S. 19 toward her in-laws' vacation home in Clearwater to pick up Hailey.
Livy was strapped in the back of the van, worn out after a therapy session, from moving her body in ways her mom once doubted she ever could.
"I've always wanted to stop things with Livy," Allison said.
Meanwhile, her sister is charging forward into life. "With Hailey, we're like, 'Where's your stop button?' "
"With Livy," Allison said, "I don't want to see the future just yet because I don't know what to expect with it. With Hailey, I want to see her grow and go on to college and get married and have kids. I don't ever want to stop and think about Livy's future. She's not going to grow up and get married. She's not going to have children. We just have to imagine her the way she is."
• • •
Hailey Madison Scheinman was born at Bayfront Medical Center in St. Petersburg on Dec. 15, 2004, weighing 6 pounds 5 ounces, after 12 hours of labor. Nurses showed her to her parents — Allison, a graphic artist with a love of books and theater, and Jon, a lifelong soccer player who worked in finance at HSN — then ushered her to the nursery while her mother labored another hour more.
Four hours later, Olivia Hope Scheinman, 6 pounds 11 ounces, looked up at her father from a crib in the Neonatal Intensive Care Unit at All Children's Hospital in St. Petersburg.
He watched her body shake in her first documented grand mal seizure.
• • •
Twenty-two days later, at home with Olivia for the first time, Jon wanted to be excited. But his videocamera was still.
No one spoke.
Cradled in her grandmother's arms, Olivia's body curled in an infant-sized abdominal crunch.
Crunch. Crunch. Crunch.
Within hours, Olivia was readmitted to All Children's with infantile spasms.
• • •
Eleven-month-old Hailey wobbled excitedly across the living room floor toward her daddy, her hands raised in the air, her mouth open in glee.
Jon's camera captured the steps, then he panned to Livy resting across his lap. Her eyes flickered uncontrollably in what family calls her "blinkies."
• • •
First Christian Preschool teacher Cherryl Sonnenberg couldn't help but overhear the lunch table conversation between two 5-year-olds.
"Does your brother walk?" Hailey asked.
"No," the boy replied. "He doesn't walk."
"I have a sister, Livy, who can't walk. But she rides in a chair," Hailey said. "Does your brother ride in a chair?"
"Yes," the boy said.
"Does your brother eat by himself?"
"No."
"My sister doesn't either."
• • •
Every day before she went to preschool, Hailey slurped down PediaSure in a cup.
She called it her "Livy Shake."
• • •
The kindergartener glued herself to the kitchen stool, repeatedly clicking "refresh" on her parents' laptop computer.
Click. Click. Click.
Her painting had to sell.
Two pink flowers. Two pink ladybugs. One ant hill. One butterfly.
Hailey had titled it Spring Is Coming, and now she was trying to sell it on eBay.
Click. Nothing. Click. Nothing.
Allison and Jon stood by, unsure what to do.
Click.
Five dollars.
Five dollars! Hailey went berserk.
Three days later, Spring Is Coming sold for $66.
Hailey gave the money to her parents to help with Livy's physical therapy bills.
• • •
On a Saturday morning early this year, Livy started having a seizure while napping on the couch.
"Mom," Hailey said as her parents approached, "I can take care of this."
The little girl knelt beside her sister's outstretched body, looked into her face, stroked her forehead with her thumb and held Livy's hand.
Three days later, the Pinellas County School Board had been meeting for 50 minutes before someone nudged Hailey. She left her sister's side, walked to the lectern and stood beside her principal.
"Hailey truly loves her twin sister Olivia," a school district employee told the board. "That is evident in the compassion and pride that she shows in introducing Olivia, who is a special needs child attending Paul B. Stephens School."
Hailey reached up to shake seven hands, School Board members happy to recognize her as a "Young Hero," an award given to students who inspire others.
• • •
Allison pushed Livy's wheelchair through the grass toward Hailey's soccer game. A shamrock garland wound around Livy's chair glimmered in the sunlight — a remnant of the St. Patrick's Day parade teachers held at her school that day.
Hailey saw her best friend, Ainsley Walling, with the rest of their team and ran toward them.
Jon squeezed into a sideline spot among the other parents and set up Livy's blue and white bath chair, which she sometimes uses instead of her wheelchair. For years, Hailey and Livy bathed together, Hailey tucking her legs underneath this very chair. But Livy's legs are longer now, and there's no room left for Hailey.
"Go, Hailey!" Ainsley's mom, Tracey Walling, called from the sidelines as Hailey ran the ball up the field.
Ainsley and Hailey had spent all day in class together and now they were going to spend all night playing together — first on the soccer field, and then at Hailey's house for her first official sleepover.
The two red-faced girls hugged when the game ended. They held hands on the way to the Scheinmans' van, with Livy, Allison and Jon following behind. They laughed as Ainsley shuffled up and down the handicapped ramp after Livy was loaded in.
"Before Jon slid the van door closed, a giggling Ainsley called out from the backseat.
"Can me and Hailey get in the shower together?"
"No," Jon said with a laugh. "I think you'll be taking separate showers."
• • •
In June, Hailey stood beside Livy at an Orlando conference for families of children with disabilities.
"No," Hailey said, holding a microphone in one hand and her note cards in another. "I don't remember what it was like with Livy when I was little. But I can tell you how it is now. First, Livy and I like to cuddle together on the couch. It seems like she is trying to push me off because her arm is pushing against me. I don't think she means it though . . .
"And I would like to tell you about how I feel about having a sister with disabilities. I like to spend a lot of time at home with my sister. We've never had a fight over toys or clothes or anything else. She's always nice to me. I know this because she always smiles at me.
"Sometimes, she tickles me by accident. She always listens to me and she likes my singing . . .
"If Livy didn't have disabilities, I wouldn't be here speaking to you now. I wouldn't know anything about disabilities, and neither would my friends . . .
"She has taught me that everyone should be treated equally and with respect. The only thing she sees in the world is good and so do I. She has taught me how to have more empathy to others. She has taught me how to be a better person."
• • •
In late February, shortly after Hailey won the award from the School Board, Jon got the girls together and read Hailey a thank-you note he'd written for the family's blog, one he imagined Livy might give her sister if she could speak or write.
"To my sister, my best friend, and my biggest supporter . . . you amaze me. You protect me, comfort me and love me like no other. You include me in all that you do and look past my disabilities. You are so proud of me and are not afraid to tell others my story . . .
"You visit me in the hospital when I am sick. You are not afraid of the medical equipment and procedures I have to go through. You console me when I am upset or in pain. When my body doesn't work like it should, you are there to assist me . . .
"I couldn't do this without you. I may never be able to walk or talk, but you make me feel like I can do anything. You frequently tell me I am the best sister in the world. But it is I who could not imagine a better sister than you."
When her father had finished reading, Hailey wrapped her arms around Livy.
"You are the best sister in the world," she said.
Rebecca Catalanello can be reached at rcatalanello@tampabay.com or (727) 893-8707.
To learn more about twins Olivia and Hailey Scheinman, visit links.tampabay.com to view an audio slide show and family videos. Also see the family's website, livyshope.com, to learn more about Hailey's artwork, jewelry and lemonade stands to benefit her sister's therapy costs.
