‘A beautiful child, inside and out’

Seventh grader with albinism tackles life’s challenges with unwavering optimism

Victor Cristales
Paulina Diaz serves the ball during goalball practice Feb. 13. “I’m not even sure how I got into it, I just know that I’m IN it,” Paulina said. “I’m really proud of myself when it comes to goalball, because there are a lot of struggles that I’ve had. Especially when I was little, I was smaller, a lot of the people on the team were a lot older than I was. They threw harder than me, and I was scared.”

It’s 10 a.m. on a Saturday, and the athletes who comprise the local goalball team are ready for practice.

Some players stand at the edges of the basketball court, elbows jutting back then forward as they forcefully roll the blue and red balls across the gym floor. Others perch on the bleachers suiting up, carefully strapping on their elbow and kneepads. In the far left corner of the gym, the team’s newest member practices serving and blocking the ball as her father assists.

A few minutes later, Paulina Diaz bounces through the door of the Russell P. Schupmann Elementary gymnasium in Glenn Heights, her bright blond hair tied into a tight ponytail that bobs with every step. The 12-year-old Red Oak Middle School seventh grader beams as she greets her fellow teammates, her trademark smile revealing two rows of gleaming braces. She takes a seat on the bleachers next to her friend Emily Guerra, wrapping an encouraging arm around the older girl as she vents about struggles in Spanish and the general day-to-day drudgeries of life in high school.

As coach Shawn Daugherty finishes laying tape on the floor to indicate the court’s boundaries, Daugherty’s daughter Libby — who is one of the oldest and most experienced of the team’s players — yells, “Come on, guys, let’s stretch.”

Paulina rushes to the middle of the floor with the rest of the group, dutifully but happily completing windmills and tricep stretches. In her pink T-shirt, black pants and white kneepads, she looks like any other athlete ready for practice. And in the all the ways that truly count, Paulina and the rest of the team are like every other athlete — strong, committed, energetic.

But they are participating in a sport unlike most, one in which hand-eye coordination has nothing to do with a player’s skill. Goalball is a game designed specifically for the blind and visually impaired, in which the athletes must listen for the ball’s jingle as it rolls toward them and attempt to block it with their bodies. To level the playing field, each participant wears goggles that completely shade their view, so those who are visually impaired do not have an advantage over the completely blind.

At this practice, Paulina is both blocking and missing her share of balls. Each time she prepares for a serve, her face scrunches into a mask of determination as she dives to stop the ball from passing.

“There were times when I wanted to quit,” Paulina, who has played goalball for the past four years, said. “I wasn’t making any goals, I wasn’t getting any outs, I would get hit in the stomach and the breath would get knocked out of me. That would happen two or three times in a single game, and I would be like, ‘Mom, I’m done with this.’ She would say, ‘Just one more time.’ And then I’d have my good day; I’d try again and again and again.

“My mom tells me, ‘You persevered for it.’ And that’s something I’m really proud of.”

For Paulina, goalball serves as a metaphor for her life’s trajectory: seemingly vicious obstacles intermixed with victories small and large.

She has teammates both on and off the court who have helped her traverse the often challenging road that faces the visually impaired. She’s quick to list “Coach Shawn,” as the kids call Daugherty, as a motivator, someone who has helped her learn to “commit to the block and don’t second guess yourself.” He’s helped her build confidence, she said.

“It’s a lot easier to do for a blind kid than it is to teach a blind kid to do for themselves,” Daugherty, whose daughter Libby and son Steven are blind, said. “I always tell them their position on the court is their world, and they’re responsible for it. If they fail, I’m going to call them on it. And I’m going to teach them how to avoid failure the next time.”

Paulina also counts her first goalball coach, Christy Householter, among her biggest supporters, along with her first grade teacher and her vision teacher.

Then there’s her No. 1 fan: her mom.

“My mom’s always telling me, ‘You have so many hard things in life,’” Paulina said. “And I’m like, ‘Mom, they’re not that hard.’ And she says, ‘You have to be really optimistic to say that.’”

Paulina smiles.

“She always tells me: ‘I’d trade my eyes for your heart.’”

Paulina Diaz uses her hands to follow a line of tape back to her spot on the goalball court. Goalball is a game designed for the blind and visually impaired, in which they must listen for the ball's jingle as it is propelled toward them and attempt to block it with their bodies. "It gives us an opportunity to play on a team," said Libby Daugherty, one of Diaz's teammates. "My dad’s philosophy is that whenever we come to practice, the parents are to stay on the bleachers, and we are completely in control of the court. It’s our world, and we have to figure it out."
Victor Cristales
Paulina Diaz uses her hands to follow a line of tape back to her spot on the goalball court. Goalball is a game designed for the blind and visually impaired, in which they must listen for the ball’s jingle as it is propelled toward them and attempt to block it with their bodies. “It gives us an opportunity to play on a team,” said Libby Daugherty, one of Diaz’s teammates. “My dad’s philosophy is that whenever we come to practice, the parents are to stay on the bleachers, and we are completely in control of the court. It’s our world, and we have to figure it out.”

‘DON’T PLACE LIMITS ON HER’

On April 20, 2003, Ilda Diaz gave birth to her first child, Paulina. But along with the congratulations came other, less welcome, news: Paulina had been born with albinism, a condition that causes a decrease or absence of melanin, the protein necessary for pigmentation, which typically affects the skin, hair and eyes. Albinism — which affects one in 17,000 — is marked by low vision, as well as what is known as “nystagmus,” or involuntary eye movements. In addition, those with albinism have sun-sensitive skin and eyes.

Ilda was familiar with the condition — like all parents of albino children, she and her husband, Juan Carlos, had family members with the disease, making them carriers of the gene. For Ilda, it was her cousin, and for Juan Carlos, a great-great-great grandfather.

But she still wasn’t prepared for the news.

“When she was born, the doctors told me the kind of difficulties [Paulina] was going to have throughout her life, but it was like I didn’t hear anything, you know?” Ilda said. “It made me sad to think about the obstacles she would face. My husband said, ‘She can be whatever she wants; don’t place limits on her.’”

And while Ilda took Juan Carlos’ advice, she also admitted that she could be “overprotective, and worried about stuff,” especially as Paulina began to crawl and walk. She noticed that her daughter would often fall or bump into things.

“My back would hurt because I would bend down so much,” she said. “I didn’t want her to crash into something. For three years, I was behind her all the time.”

By the time Paulina was 3, the extent of her vision problems dawned on Ilda. That was when Paulina underwent her first surgery for the nystagmus; the second took place when she was 5. Ilda found it was best to not tell Paulina about the surgeries until the day of, because she noticed her daughter had a tendency to get anxious about unfamiliar places and events.

“They told me they were going to do something to my eyes, and I thought maybe I was going to get new glasses or a newer telescope. But they never told me they were going to do surgery,” Paulina said. “When I was 5, they woke me up in the middle of the night, and I was like, ‘Mom, it’s not time for school yet.’ And she said, ‘No, baby, your eyes are going to get fixed.’”

The surgery involved cutting the muscle in her left eye to pull it slightly inward. The vision in Paulina’s left eye has been measured at 20/200, while the vision in her right eye is 20/250, making her legally blind. She said her vision, which is expected to stay at those numbers throughout her life, causes her to register images as blurry or shapeless.

Even though Paulina was the one who suffered from low vision, she wasn’t the only one with anxiety, especially as she grew old enough for school. She started out at a pre-K center, a small building in which she could grow accustomed to the school environment without being expected to navigate a large, unfamiliar space. Ilda said the first day of pre-K was tough; she dropped Paulina off, explained her needs to the teacher, then waited for what she thought would be the inevitable phone call.

“We were very attached. I thought, ‘She’s going to cry, she’s going to miss me,’” Ilda said. “I stood outside the school the whole time, but they never called me. She was just thrilled; she played and played.”

As kindergarten neared, Ilda took Paulina to a vision specialist to introduce her to the equipment she would need to be able to see at H.A. Wooden Elementary, her new — and much bigger — school. That equipment included a telescope, which helps her to see objects further away, and a magnifier, which helps her to enlarge the text in books and worksheets.

But for Paulina, the transition to kindergarten was difficult. Her teacher did not fully understand how her visual impairment affected her learning and many of the other students had trouble understanding her albinism.

“I had a lot of kids comment on my hair. They were literally tugging at my hair at recess,” Paulina said. “Then they started saying I was making up the visual impairment so I could have all this ‘cool stuff.’ I was like, ‘Whoa, there. Just stop it.’”

Ilda would often come to school with Paulina to help her with small issues like navigating the hallways. She also kept her eye on bigger issues in the classroom that affected her daughter’s learning.

“She was not able to see when the teacher would show the kids something on the board, and she would not understand what she was asking them to do,” Ilda said. “I think sometimes, [the teacher] would think Paulina was lazy or didn’t want to do the work, but she just couldn’t see. But Paulina’s personality helps a lot; she won her heart in the end.”

That wasn’t the only heart Paulina won. In kindergarten, she met Faith Deraleau, with whom she is still best friends. Deraleau, who is also a seventh grader at ROMS, was struck by Paulina’s outgoing, friendly personality.

“She was never afraid to talk to anybody. She was always really outspoken, but at the same time, she couldn’t really make a lot of friends,” Deraleau said. “When I first saw her, we were sitting down watching ‘Peep and the Big Wide World,’ and Paulina and her mom walked in. I thought, ‘Hey, that girl looks nice.’”

Deraleau walked up to Paulina on the playground and said, “You’re going to be my best friend,” Paulina recalled. “And I was like, ‘All right, if you say so.’”

Things were starting to look up.

Paulina Diaz, left, practices using a Braille typewriter under the supervision of Terry Layfield, a teacher of the visually impaired, in the Red Oak Middle School Learning Commons on Dec. 16, 2015. Diaz is affected by albinism, which caused her loss of vision. She has been working with Layfield since she was 5 years old, and sends letters written in Braille to another of Layfield's students at Red Oak High School.
Sara Assi
Paulina Diaz, left, practices using a Braille typewriter under the supervision of Terry Layfield, a teacher of the visually impaired, in the Red Oak Middle School Learning Commons on Dec. 16, 2015. Diaz is affected by albinism, which caused her loss of vision. She has been working with Layfield since she was 5 years old, and sends letters written in Braille to another of Layfield’s students at Red Oak High School.

‘I HAD SOMEONE WHO UNDERSTOOD ME’

Cathy Schultz couldn’t help but be drawn to the bubbly blond kindergartner in the thick glasses who occasionally visited her first-grade classroom at Wooden Elementary. It wasn’t just because of what Schultz described as the girl’s “beautiful spirit,” but also because she reminded her of her own college-aged daughter, Andrea, who had dealt with nystagmus all her life.

It was no surprise, then, that Schultz began to treat Paulina like a daughter.

“I would always make an attempt to talk to her and watch out for her and make sure she was up front for assemblies,” Schultz said. “The mom in me kind of took over.”

As Paulina came to the end of her kindergarten year, Schultz knew well the challenges that lay ahead. Her daughter had been the only visually impaired student in Red Oak when she attended classes, and Schultz could tell Andrea had longed for a mentor to tell her that she could — and would — get through the tough times.

Schultz wanted to be that person for Paulina.

“She told me, ‘I want Paulina in my class, if you will allow me to be her teacher,’” Ilda said. “She is still a big, big support. From there, things started to get a little bit easier.”

It was Schultz who encouraged Paulina to advocate for herself in the classroom. She set up meetings between Andrea and Paulina, so the older girl could talk to Paulina about everything from special services she could request to field trips and summer camps for the blind.

Schultz also pushed Ilda to have Paulina retested for the Gifted & Talented program her first-grade year; though Paulina had failed the test in kindergarten, she had not been given a large-print exam or special time accommodations.

This time, Paulina passed with flying colors. She is currently thriving in her GT classes in middle school.

“She always tried really hard — she could be really hard on herself, maybe too hard on herself sometimes,” Schultz said. “You could tell she came from a family who was very supportive and to whom education was a high priority.

“I can still picture her and where she sat. She’d be up on her knee a little bit, head down to her desk, working hard. I think the kids were in awe of her and how hard she worked. They really did notice.”

Paulina still considers Schultz her favorite teacher.

“She was just the best,” Paulina said. “I had someone who understood me. I still had kids say mean things to me sometimes, but it was so much better with her there.”

Paulina also attributes her success in the classroom to Terry Layfield, a Red Oak ISD vision specialist who began working with her in kindergarten. Layfield helped Paulina learn to use her telescope and magnifier, which she adapted to quickly. So quickly, in fact, that Layfield agreed to start teaching Paulina how to read and write in Braille. Even though Paulina is sighted, her eyes often grow tired from the strain of reading, particularly small print and computer screens.

Paulina’s sight has held her back a little bit, because she doesn’t have to use Braille all the time, Layfield said. But once Layfield suggested to Paulina that she start writing letters in Braille to her goalball teammate, Emily, her abilities improved tremendously.

“It’s a competition; she likes to catch the mistakes the other girl makes and then she wants to make sure she’s not making mistakes,” Layfield said. “It’s a real-life type thing for her to do. When she was little, she wanted to write notes and thank yous to her teachers in Braille. She’s always found creative ways to use it.”

Currently, Paulina works with Layfield on Wednesdays and Thursdays for 45 minutes. The two can be found in the library, Paulina hunched over the Braille typewriter as Layfield gently guides her.

“I really admire Ms. Layfield a lot,” Paulina said. “For a career project that we’re doing in math, I’ve chosen vision teacher. My mom’s cousin, he’s blind … he told me a lot of the best vision teachers he’s had are the ones who are visually impaired themselves. I know how it feels to be blind, and I also know how it feels to be sighted, so I have an advantage there.”

With the help of Schultz and Layfield, many of Paulina’s former anxieties began to subside. She made more friends in class, became comfortable with using computers for classwork, grew more independent in applying her sunscreen, glasses, and hat to protect her skin and eyes before heading outside for recess, and adapted more easily to changing schools and classes.

But unexpected moments of vulnerability would still crop up.

“Every year, there’s always this unit in science about inherited traits, and I used to cry every single time we had a unit over that because I’m albino — I don’t look like my parents,” Paulina, whose family is Hispanic, said. “My mom is always telling me, ‘Your nose is just like your dad’s, you have my eyes.’ And I think, ‘If that’s true, I can’t see it.’”

But as always, Ilda was there to encourage and comfort Paulina, even as she welcomed her second daughter, Carolina, when Paulina was 5. Although Carolina was not born with albinism, she did inherit Ilda’s nurturing nature.

“There’s this saying in Spanish my mom uses, ‘mis ojos,’ like [Carolina’s] always looking intensely at what you do, you can’t say something bad around her because she’ll pick up on it,” Paulina said. “But for me, she really has been my eyes. Sometimes, she’ll ask me to come play with her, and it will be one of those sand art things, and I’ll try to put the sand in, and she’ll say, ‘Sissy, the opening is right over here.’ And I realize I’m getting it all over the floor.

“I feel like she’s had to sacrifice a lot. A lot of times, we were supposed to go to her friend’s birthday party or her school PTA meeting, and we don’t because of one of my conventions or camps. I tell her, ‘I’m sorry, Sissy.’ And she’ll say, ‘It’s OK, it’s OK. I’m right here.’”

The support of her family, particularly Ilda’s, led Paulina to nominate her mother as “Parent of the Year” in 2014. The essay won her one of many awards she would ultimately receive, as it was picked as the top submission at Red Oak Intermediate School. She wrote her essay as a poem, the way she wrote almost everything as a fifth grader.

“I only remember the first part: Mothers are great, especially mine / She’s caring … and something … and something … and fine,” Paulina recalled with a laugh. “If there’s a mouse, she’ll chase it away / And it won’t come back in a million days.

Schultz, who retired from Wooden at the end of the 2014-15 school year, wasn’t surprised by Paulina’s “Parent of the Year” essay win or any of the other victories that awaited her as she entered middle school.

“I had Carolina as a student last year, and Paulina came up to me in my classroom, and I said, ‘Oh my gosh, you’re so tall, your hair, you’re just so beautiful,’” Schultz said. “And she just beamed. She’s just a beautiful child, inside and out. I’m anxious to see what she does with her life.”

Paulina Diaz, left, asks her mother Ilda Diaz if she can sit and read the next book in the Janette Oke series her teacher, Christine Mullins, turned her on to. Paulina is an avid reader and writer; recently, she has read classics such as "Pride and Prejudice" and "Little Women."
Victor Cristales
Paulina Diaz, left, asks her mother Ilda Diaz if she can sit and read the next book in the Janette Oke series her teacher, Christine Mullins, turned her on to. Paulina is an avid reader and writer; recently, she has read classics such as “Pride and Prejudice” and “Little Women.”

‘IT’S GREAT TO SEE A KID WHO … IS JUST SO SUPER POSITIVE’

Paulina sits in the cafeteria at Ennis Junior High School, one knee tucked below her, her hands clasped at her chest. As the UIL coordinator begins announcing the top seventh graders in the impromptu speaking category, Paulina practically thrums with nervous energy.

“Sixth place …” Not her. Neither is fifth. Fourth and third are a no go.

“Second place …”

An excruciating pause.

“Red Oak Middle School, Paulina Diaz”

She bounds from the table and heads toward the front of the cafeteria, stopping for a second to acclimate herself to her surroundings and locate the best path to the stage. She stoops a little as the coordinator places the medal around her neck, then rushes back to her spot, a wide smile affixed to her face.

The other ROMS competitors clap loudly for her, several offering their congratulations and hugs.

As she takes her seat, the top speaker is announced. Paulina claps even harder for the first place winner than she did for herself.

“When they came to second, I thought, ‘Don’t announce my name, because that means I got first,’” Paulina said. “But I was OK with second. I was still amazed. I expected to get maybe fourth or fifth. And then they called my name, and I was like [she raises her arms above her head and tosses her head back] ‘Yes!’”

Earlier in the day, she took home a first place medal for seventh grade editorial writing, an impressive feat considering the prompt was not in large print, and she only had 45 minutes to complete the essay.

“The way I kind of always am … I start the day thinking, ‘Let’s just see what happens,’” she said. “And by the end, I’m like, ‘You better do this right.’”

But Paulina has made it a point to stretch her limits even further this year. She joined electives such as journalism — where she was voted “Hardest Working Staffer” by her peers at the spring awards ceremony — and dance. She last took dance classes at the age of 7, but stopped after she found she had a hard time keeping up. In seventh grade, she decided it was time to start anew.

Her dance instructor, Cathy Isaacks, said she hasn’t had to adapt anything for Paulina — “she just goes with the flow,” Isaacks said, including when it comes to changing lines in the various dance routines. Each Friday, the class goes out to the track to exercise, and Isaacks said Paulina always remembers to bring her sunscreen, sunglasses and hat.

“She does great, she keeps up, she has no problems whatsoever — she’s a good little dancer,” Isaacks said. “It’s great to see a kid who could be mad at the world, but instead is just super positive. She’ll come in, and she’ll give out little notes that she’s made that say, ‘Give a smile, pass a smile,’ and then she’ll want a hug. She just wants to make people happy.”

When she does occasionally feel lost or overwhelmed in the class, Paulina finds ways to adapt.

“I just look at the people around me, I look at the kids who get the dance right there and then, and I copy off of them,” she said. “And then I practice it at my house over and over again, and by the next day, I know what I’m doing … well, I kind of know what I’m doing.”

In addition to her electives, Paulina’s schedule is jam-packed with challenging courses — she’s taking GT history, science, math and English. Her lowest grade so far this year? A 91.

She particularly stands out in English, where her teacher, Christine Mullins, has used Paulina’s essays as an example for the rest of the class. Paulina was one of only two students in her GT English class to earn a perfect score on the district’s writing pre-assessment.

“She does great, she compensates for any difficulties she might have,” Mullins said. “She uses her tools, she asks for help if she needs it. She always has a great attitude and does her best work, which is better than a lot of people’s. She’s definitely above the rest in writing.”

Mullins has loaned Paulina books from her own bookshelf, including a pioneer series by Janette Oke. Recently, Paulina has been delving into classics such as “Pollyanna” and “Little Women” because “I love stories with death in them, it’s good therapy,” she said. She can often be seen walking down the hallway with her face buried in a book or reading over lunch. Her hunger for reading has made her a better writer, she said.

“I read a book, and I usually put myself in the author’s place: ‘Why’d they write that?’” she said. “I love when I’m reading something, and the message keeps you up at night, it keeps playing over and over in your head. My goal is to write something so powerful that [the reader] will want to think about it and not just put it down. They’ll think about what I said.”

People are already thinking about what Paulina says, though. Even at 12, she’s managed to make an impression on hiring managers, as she prepares for life beyond middle school. In February, she attended a Region 10 event that taught students how to make themselves look and sound presentable for job interviews. Paulina’s impromptu speaking skills worked to her advantage.

“There were employers there from CVS and [Dallas Lighthouse for the Blind], and we had to give ‘elevator speeches’ for whenever we get a job interview,” Paulina said. ‘I wrote it down … we only had three minutes, just like in the [UIL] competition. They gave us our evaluation, and one of them said, ‘I can tell you’ve done this before.’ As I’m walking away, I hear one of the guys say, ‘She’s hired.’

“We were eating lunch, and the guy from CVS comes up to me, and says, ‘I’ll see you Monday morning, then?”

Ilda Diaz, second from left, and her daughters Carolina, left, and Paulina walk to their car after Ilda picks up Paulina from school March 29. Due to her albinism, Paulina must be careful to wear sunscreen and sunglasses when outside during the day.
Victor Cristales
Ilda Diaz, second from left, and her daughters Carolina, left, and Paulina walk to their car after Ilda picks up Paulina from school March 29. Due to her albinism, Paulina must be careful to wear sunscreen and sunglasses when outside during the day.

‘THERE ARE SO MANY GREAT THINGS I WOULDN’T HAVE’

As goalball practice draws to a close, the players work individually on their serving and blocking with Coach Shawn. Carolina has been here the whole time, lingering on the court’s outskirts, watching Paulina’s every move. Ilda and Layfield have been observing practice from the stands and chatting about Paulina’s progress over the years.

Ilda tells Layfield how her and her husband’s differing approaches to parenting have helped make Paulina who she is.

“I tend to be very protective, but [Juan Carlos] will say, ‘She’s fine, she’s OK,’” Ilda said. “I think she has a lot of his attitude. Sometimes, she feels like he pressures her too much when they are doing something, he expects more of her and she gets frustrated. But if it was only me there, she would be different. She would be way more timid. Paulina’s a lot like him. It’s a blessing that he is the way he is, and I am the way I am.”

“She’s always been so independent,” Layfield tells her. “It seems to have worked.”

Paulina makes her way back to the bleachers, and the rest of the players and parents begin to pack up. The teammates talk with each other as they remove their pads and goggles, discussing weekend plans and how they think practice went.

They’ll see each other again in two weeks for their next practice. Many of the players, including Paulina, even compete in tournaments during the year that allow them to showcase their skills and growing confidence.

“[Paulina] was playing in a tournament two years ago, and she was super nervous,” Libby, who served as the coach of Paulina’s team during the tournament, said. “But she got there, and she played like a pro. It was a completely different Paulina than we had even seen before. It was just that moment when she came out of her shell and started to enjoy the game and really started to shine.”

But for all of her progress and positivity, Paulina doesn’t consider herself a saint or source of inspiration or any of the other clichés people are quick to attach to those with a disability. She’s like anyone else: a person who experiences highs and lows in her life and just tries to get through them the best she can.

“Sometimes I wish that I wasn’t albino, that I didn’t have low vision, that I didn’t have to put on sunscreen before I went outside, that every single time I go out to the dance gym, I didn’t have to stop while all my friends are waiting on me and look for my sunglasses so the sun won’t bother me. Sometimes it’s embarrassing,” Paulina said.

“Sometimes little kids … I know they don’t mean anything bad. But [my mom and I] were in the store, and I took off my sunglasses, and the little girl beside us said, ‘What happened to your eyelashes? What happened to you?’ It’s something funny, but at the same time, if I were — as I put it, ‘normal’ — things would be different.”

And then the thing that everyone loves about Paulina — what Schultz terms her “beautiful spirit” and Layfield describes as her “incredible sweetness” — bursts through: that unfailingly optimistic heart her mother so admires.

“But then again, if I weren’t albino, there are so many great things I wouldn’t have,” she said. “I would have never known about goalball. I would have never met Ms. Layfield or Emily. My sister and I wouldn’t be as close.”

The gym lights click off as the players and their parents exit the gym. It’s time to go home, back to real life, where the wins and losses aren’t as clear cut as they are on the court.

But Paulina knows her fans will always be there.

Carolina grabs Paulina’s hand, and they follow Ilda out into the daylight.

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