A Tale of Twins: Trials no match for their bond

Last spring, I got a story tip from the theater instructor at Cocoa Beach Jr./Sr. High about one of his students, Olivia DeBoer, who was performing in an upcoming production of “Footloose.” Olivia, Kevin Buck wrote, was the most positive person he’d ever known. She loves life, she’s sassy, she loves to perform. She has cerebral palsy.

I raised an eyebrow. Then I called Kevin. We talked a lot about Olivia, whom, he mentioned, is a twin. “Would Olivia be interested in speaking with me?” I asked. I was curious.

There’s a universal fear about public speaking. Performing on stage is a close second. It impressed me that Olivia had conquered both.

I interviewed Olivia and her mom, Tara, over the phone. I asked Olivia why people should see the show.

“Because No. 1, I’m in it,” she said. “Because they want to see me act, sing and dance, because I am the star in this.” I overheard Tara gently correct her. “I mean,” Olivia added, “I am one of the stars in this.”

So I took my family to see the production. We cheered on the bubbly girl in the ensemble with the hot pink walking sticks. Wearing a cowboy hat and ruffle skirt, she danced and hopped to the beat of “Let’s Hear it for the Boy.” I didn’t really know Olivia, but I felt proud of her. Afterward, I told her what a great job she did. We posed for a photo, and Olivia said through frozen cheeks, “can I stop smiling now?”

Kevin Buck was right – the sass! I laughed.

Then I noticed Olivia’s twin sister, Adrianna, waiting nearby. When Adrianna heard I was the reporter who interviewed Olivia, she smiled politely – and bolted.

I would later learn how much Olivia loves being the center of attention and how Adrianna prefers to stay behind the scenes – even though she’s a serious swimmer and a top-notch student.

Their differences intrigued me. I wanted to get to know them.

So for eight months, visual journalist Craig Rubadoux and I documented life with the DeBoer family. We visited the twins at school, spent time with them at home and observed Olivia’s challenges with cerebral palsy.

Here’s their story.

Adrianna and Olivia DeBoer were born five weeks early in Sioux Falls, South Dakota; each weighed a little more than 5 pounds. First-time parents Tara and Jason DeBoer knew it would be a lot of work to care for twin babies, but, “I loved it way more than I ever imagined,” Tara recalled.

They bought matching outfits. Both girls had navy blue hats, each with a red bow. Olivia got a yellow baby blanket, Adrianna a pink one. The babies loved it when Tara read to them.

But when Olivia was 4 months old, Tara noticed her daughter’s eyes moving in a strange pattern. Doctors scheduled an MRI, then diagnosed Olivia’s condition as periventricular leukomalacia, or thinning of the white matter in the brain.

The prognosis was unclear. Jason and Tara were given scenarios: sometimes children have abnormal MRIs but function typically; sometimes children have normal MRIs and they don’t function typically.

Doctors couldn’t say which it would be for Olivia.

As time went on, Olivia didn’t develop the same as Adrianna. For example, Olivia was crawling, but she crawled in a commando-type style. “I had a baby to compare her to,” Tara said. “I didn’t understand.”

Adrianna would laugh and smile back. She was playful. Olivia seemed to cry a lot more.

Then at 8 months old, Olivia had a myoclonic seizure.

It was scary.

The uncertainties continued until Olivia was 18 months old. That’s when doctors diagnosed her condition as cerebral palsy. Symptoms include walking limitations and weak muscles caused by damage to the brain, usually occurring during fetal development. In some cases, there is difficulty with communication, learning and behavior.

When Olivia was 2, a physical therapist told her parents that she would never walk on her own. “That was hard,” Jason said. But, they refused to accept that.

[Related: Gabordi: Parenting kids like Jessica and Olivia is special]

The best advice Jason said he ever received was to teach his daughter how to help herself. They had a wheelchair for Olivia, but she rarely used it. They helped her learn how to walk with crutches, eventually giving her a pair in hot pink – Olivia’s favorite color. She walked with a scissoring gait, which is common among those with cerebral palsy.

While Olivia’s twin, Adrianna, learned how to swim like a fish, play sports and surf, Tara and Jason taught Olivia:

• how to fall safely
• how to get back up
• how to ease the pain in her legs.

“I think people are surprised to hear they’re twins,” Tara said, “because of the challenges Liv has. It’s such a contrast that people almost can’t wrap their heads around it. But it’s reality.”

Those who know Adrianna describe her in one word: focused.

During a springtime visit to her high school, I saw her fiercely scribbling answers during a final exam. Her shoulders were set, her expression determined as she raced against time and math.

After the test was over, Adrianna relaxed with friends toward the back of the room. She was smiling, laughing and visibly relieved. Photographer Craig Rubadoux started snapping away. One pal asked, “Adrianna, what’s up with the paparazzi?” She answered with a sigh and slight shrug. She’s not used to the attention.

Not so with her twin sister. During our visit to her classroom, there were shrieks of excitement. She was so happy for the attention she started to cry.

At first, I was alarmed. She’s crying? She raised her arms high, then banged them down with a hard thud on the table. Her friends were laughing hysterically. For a second, I thought, ‘Do I need to leave?’ I guess I unconsciously said it aloud because she responded with a throaty chuckle.

“They’re here for me,” she declared to her friends with a cheshire-cat smile.

Now I was visibly relieved.

The DeBoer twins attend Cocoa Beach Jr./Sr. High along with their 15-year-old brother, Hudson, a freshman. Adrianna is a junior, and Olivia is a sophomore. They have a younger sister, Camille, who is in sixth grade at Freedom 7 Elementary.

The family relocated many times over the years, but moved to Cocoa Beach in June 2013 for the twins. The DeBoers had vacationed here before, and they fell in love with the area. The high school’s swim program enticed Adrianna; the theater program, Olivia.

Adrianna is well-spoken, and if she finds something funny, she chuckles. When Olivia laughs, it’s boisterous, and she eggs on those around her to join in.

Adrianna is a shorts and T-shirt kind of girl, while Olivia loves wearing skirts and anything hot pink.

“She’s a lot more positive than I am,” Adrianna said of her twin. “I tend to complain more, and she’ll be like, ‘OK, let’s just do this.’ That’s how I used to be when we were younger. I’m more calmed down, she’s gotten more excited and more hyped up about everything, so it’s just interesting to see that.”

In spite of their differences, the twins are identical and share quite a few physical traits: Both have long brown hair, brown eyes and a radiant smile. They have roughly the same athletic build. Adrianna maintains hers from swimming and Olivia from years of leaning on walking sticks.

“If she wasn’t having this challenge,” Adrianna said, Olivia would “definitely be an athlete, along with drama, too.” She quickly adds: “We’re a normal family, we’re not any different because of her circumstances.”

For Adrianna, the pool is where she excels.

She learned to swim when she was 11, and became serious about competitive swimming at 14.

“I get in the pool, just turn off my brain. I don’t have to worry about anything else that’s going on,” Adrianna said.

She trains six days a week. Her commitment has paid off. Adrianna was an All-Space Coast swimmer for Cocoa Beach Jr./Sr. High last year, and she’s one of the top swimmers for her Treasure Coast Swim Club.

It’s fair to say Adrianna is obsessed with swimming. Not only is she a competitive swimmer, a former lifeguard  and fan of the water, but she also researches it online:

• What kind of colleges would accept her times?
• What does she need to do to get better times? To get into this college?

Because of that, Olivia rolls her eyes when “swimming” is mentioned.

For Olivia, theater is where she’s most at home. She loves the spotlight and the stage.

[Related: For Insiders only: A Tale of Twins podcast]

“That is her favorite thing ever,” Adrianna said. “She talks about it all the time. It’s just her favorite. But, not for me.”

Both twins took teacher Kevin Buck’s theater elective class last year. Adrianna didn’t fall in love with it. Laughing, she said: “I don’t really like being on stage. I’ve told Mr. Buck, and we have an understanding, I only have to go on if it’s mandatory for my grade.”

When school ended, Olivia enrolled in a summer theater program at Surfside Playhouse in Cocoa Beach. She scored three parts for its production of “Disney’s Peter Pan Jr.” For some scenes, she sat on a chair with wheels; in another, she was a mermaid pretending to swim.

Like “Footloose,” I brought my family to “Peter Pan.” Craig and I had shadowed Olivia during summer rehearsals, and I was excited to watch her act again. Every time Olivia was on stage, I saw that twinkle in her eye and her trademark smile. There was a lot of choreography – some of it was fast-paced – and she hit every mark.

I was proud of her.

During the scene in which Wendy sings a lullaby to the lost boys, who are missing their mother, Olivia’s voice rang out as she shouted out her line: “Mama!”

Aww, that’s very sweet, I thought.

At the end of the show, Tara rushed up the stage to congratulate her daughter. “Liv,” Tara kept saying. “I am so proud of you!”

But as Tara showered Olivia with compliments, Olivia kept peeking over her mom’s shoulder to see where everyone was going. The stage and room emptied fast as cast members gathered in the lobby to pose for pictures and sign autographs. Olivia wanted to be with them. She wanted to pose for pictures, too.

But since the Surfside stage doesn’t have a wheelchair-accessible ramp, she was forced to stay put.

Olivia was determined, though. She had her hot pink poles back, and she inched toward the stairway.

In an instant, Tara switched into protective mom mode, deliberately standing in front of the stairway – and Olivia – to block a potential fall. I inched closer, too, mind scrambling, wondering how I could help.

The congratulatory moment was long gone, as Tara had to explain to her daughter that they had to wait for her father to get her down from the stage. Olivia was getting antsy.

A minute or so later, Jason appeared, lifted Olivia down the stairs and let her walk to the lobby. That was opening night. For the rest of the weekend performances, Tara and Jason helped Olivia to the lobby immediately after the curtain call so she could pose for photos with the rest of her cast. Just like everybody else.

For Tara, seeing her children happy makes her happy. And there’s something special about seeing Olivia in her element.

“She allows people to see her without the challenges. She’s so outgoing, she doesn’t give them a chance,” Tara said of Olivia, who’s a few minutes older than her twin.

Tara credits family and faith for her positive attitude. Sometimes, though, little things break her heart.

Little things ... like shoes.

“We’re always on the lookout for shoes,” Tara said. Not Manolo Blahniks or Christian Louboutins. But Keens. Sneakers. Closed-toe shoes that Olivia can wear without getting blisters because she drags her foot when she walks. The 17-year-old doesn’t want to wear Keens anymore. She wants to fit in. She wants flip-flops.

But how can she wear flip-flops without destroying her feet, her parents say.

Plus, Tara said, Olivia doesn’t know how to put on shoes. Tara spends a lot of time trying to explain and demonstrate how to loosen the laces, how to stick her foot in the shoe, then tighten the laces, then tie the shoe.

Explain. Demonstrate. Repeat.

That cycle can last more than an hour. And once she shows Olivia how, sometimes Tara has to leave the room because she can’t bear to watch her daughter struggle with something so many people find easy. “It’s painful,” she said.

[Related: For Insiders only: A Tale of Twins podcast]

And now that Olivia’s older, she craves more independence. “When her friends run off,” Jason said, “she wants to run along with them. She notices” that she can’t.

Those days are tough.

Other times, total strangers can test the family’s patience.

“They see her with poles, and they think she’s not smart,” Jason said. “You see that a lot.

“The bad day for me,” he added, “is when I have to carry her down the stairs, or I have to do those things, and we’re at events and people are staring and watching.” Occasionally, he even gets the question, "what’s wrong with her?"

“People stare, and it’s unfortunate,” Adrianna said. “They don’t understand, and they don’t understand what it does to her. You know people treat her differently, and she doesn’t like it at all. She wants to be treated exactly the same as everyone else, and we try to do that for her.”

There’s a protective streak for Olivia in each of the DeBoers. Adrianna admits that if they catch someone staring at Olivia, the siblings stare back.

For Jason and Tara, they cope by thinking about Olivia’s future. There was no handbook to tell them how she would develop, how her cerebral palsy would affect her quality of life.

For years, they’ve tried orthotics (custom foot support), therapies and different exercise. Yet, the tightness in Olivia’s muscles remained.

Still, they’ve watched their daughter triumph.

They were told she would only use a wheelchair. So they taught her how to walk with crutches. “Ah,” Jason would say to Olivia, “let’s see what else you can do.”

The DeBoers are constantly looking at clinicaltrials.gov – “there’s so much out there, but right now, there’s nothing concrete as far as treatment,” Tara said. “We’ve always been conservative, let’s see how things go, let’s see how she progresses.”

When Olivia was 4 years old, she had a procedure known as selective dorsal rhizotomy, a nerve surgery that helped with the spasticity or tightness with her legs. She had a small incision in the spinal cord.

Now at 17, she prepared for her next major surgery – a pelvic osteotomy. It’s a complicated procedure that involves drilling holes into her legs and attaching metal braces to her leg bones in the hope of straightening them out.

It wasn’t a light decision.

Hopefully, the surgery would allow Olivia to:

• walk short distances
• stand up on her own without using crutches
• free up her hands.

“Even if she does use her poles, for her to be able to walk straighter, less falling, less spasticity, less scissoring ...” then the surgery would be a success, Tara explained. “Life would be easier for her. It would be not as difficult.”

As I interviewed Tara and Olivia at home, Tara explained the details about the upcoming pelvic osteotomy. Olivia sighed heavily and asked her mom: “When can I have this surgery? I want to have it now!”

I asked Olivia if she understood what the surgery would accomplish. “The doctors are going to put braces on my legs to help me walk,” she replied. Tara nodded, “That’s right, Liv.”This is a good option to hopefully correct the structural issues that are happening in her legs.

Are you in pain? I asked. Olivia nodded. Tara sat up slightly. “When I try to walk at school,” Olivia said, “it’s like twitchy. Last year, I had twitching pain.” Tara questioned her, is it tightness? Is it pain or more uncomfortable? Olivia answered, “I usually have spasms. During a test, I’ll spasm out.”

As people with cerebral palsy grow, their muscles get tighter. It’s a misfiring of the neurons in the brain. And it’s painful.

Jason and Tara scheduled the pelvic osteotomy with the goal that it would eventually improve Olivia’s quality of life. The surgery and rehabilitation, however, would greatly test the DeBoers.

In the fall, Olivia underwent two pelvic osteotomies in West Palm Beach, major surgeries in which doctors attached metal braces on each leg.

“We’re hoping and praying that it will straighten her bones so that she could have better function,” Tara explained before the surgery. “Her legs will stay straighter, her knees won’t get caught behind one another. We’re hoping that she’ll have an easier, more efficient time walking. She’s been asking for it. ...”

The DeBoers scheduled the surgery to improve Olivia’s quality of life. But no matter how much preparation and research went into the process, nothing prepared the family for the long road of rehabilitation.

After the surgeries, Olivia could hardly move, since the metal screws were drilled into the bones in her legs. Because of the pain, she couldn’t sleep. She couldn’t eat. Instead of the hot pink walking sticks, she used a wheelchair with the leg rests extended to accommodate her legs and braces.

[Related: For Insiders only: A Tale of Twins podcast]

“I’ve never seen someone in so much pain,” Tara said, blinking back tears.

For the first surgery, Tara stayed with Olivia at the West Palm Beach hospital during the weekdays, and Jason took care of the rest of the family. Then the couple switched during the weekend so Tara could be home with the other three kids. They did this for a little over two weeks.

Adrianna stepped up, too. She drove Hudson and younger sister Camille to school, picked them up, made them meals and helped them with their extracurricular activities – Hudson plays high school football and Camille swims with Adrianna every day. All this while juggling her own busy schedule.

“If I didn’t have her, I couldn’t have done it,” Tara said of Adrianna. “I truly don’t know how I would have done it. She was amazing.”

Because of the extra responsibilities, Adrianna put her high school swimming season aside to help. She was stressed. It was a hard decision to make.

“What our family was going through, she couldn’t do it. She sacrificed that,” Tara said. “She’s a junior, and it’s a big year.”

For the second surgery, Olivia begged to come home sooner. Two more weeks of recuperating at the hospital away from family was too much. She missed home. She missed her friends. Everything hurt. Tara suspects her daughter went through a slight depression.

They could have stayed at the hospital and had more help, but a week after the surgery, Tara and Olivia came home. This recovery, while still hard, was better.

I met with Tara a few weeks after Olivia’s second surgery. She showed me pictures of Olivia’s legs with the fixators attached. I gasped.

I saw Olivia’s skinny leg and her Frankenstein-like shoe. On her other leg, she was wearing a white knee-high brace, thick argyle knee socks and what looked like a long piece of metal railing attached by four metal brackets.

My heart ached for the kid.

As a parent, my heart ached for Tara and Jason, too.

We talked about the selective dorsal rhizotomy and the pelvic osteotomy. Tara said in some ways, Olivia’s surgery at 4 years old wasn’t as stressful. “It’s easier when they’re little because they don’t understand, and it’s harder when they’re older because they do understand,” she said.

Has Olivia been vocal about the surgery? Tara nodded slowly, Olivia has been vocal, all right – “I want to get these things off because they’re heavy and they’re painful.” Jason and Tara had to constantly reassure her about the bigger goals: better mobility and an easier life.

“I think when you’re in the midst of it, though, she really couldn’t see past the moment,” said Tara. Olivia was sad and hurt.

“Anybody who’s had a child go through surgery or a diagnosis, you can’t ever understand how hard it’s going to be until you’re in it,” she told me.

After a long absence, Olivia returned to her beloved high school part-time. Seeing her friends helped her smile again. It was a good distraction – it helped her forget that she could barely move, that she needed a lot of help.

The hot pink walking sticks have been replaced by a black wheelchair with the leg rests extended. Olivia still undergoes painful physical therapy.

She’s still healing from the pelvic osteotomies. But her legs are noticeably straighter. This gives her parents hope.

Typically, it takes about three months to heal, then the doctors will remove the fixators – Olivia will have a separate surgery for each leg.

“Of course, you want the best for your child, and if there’s something that can help them, you go to the ends of the earth to do it,” Tara said.

During the toughest times of Olivia’s rehabilitation, Adrianna confided in her mom: “Anytime I think I’m in pain, from a sport, from swimming, I’m in pain from a practice. ... I just think about Liv and everything she goes through every day. It just motivates me.

“She’s able to do things physically that Liv isn’t able to, and she doesn’t take that lightly,” Tara tells me.

I hesitate, then I once again broach that one subject that makes Tara uneasy. Adrianna is a junior. Next year, she’ll be a senior, and then college. How will that affect the family dynamic?

Tara releases a shaky breath, “We don’t talk about that,” she says quietly.

I had asked Adrianna the same question months earlier. She didn’t hesitate, telling Craig and me: “I don’t know where I’ll be, if I’ll still be here in Florida ... who knows? But I’ll always provide for her, no matter what.”

This makes Tara smile. I recognize that look – it’s a sweet expression of pride. I’ve seen it when she talks about Adrianna’s academic accomplishments, and I’ve seen it at Olivia’s plays. I guess she knows Adrianna – the leader of the DeBoer kids – will always look out for her family. But hearing it from someone else gives her additional comfort.

“As all parents, we love what makes up our children and who they are, and you can’t change that, so you love their unique characteristics,” she said of her twin girls, Olivia and Adrianna. “And they are definitely unique and different.”

Parents who have children with special needs sometimes have to deal with rude questions or staring. Parenting expert Natalize Diaz of New York says people do this because they don’t understand, or they don’t realize their actions can hurt.

Diaz is an author and blogger of Twinnies University website, twinniesuniversity.com. Like the DeBoers of Cocoa Beach, Diaz has a unique parenting situation. She’s a mom to 10-year-old twins, one with special needs.

Here are some of her tips on what to say and what not to say to someone with special needs.

What to avoid:

It’s rude to ask, “what’s wrong with him/her?”

Don’t stare. “Instead of staring, you can say hi and you can start a dialogue,” Diaz suggests.

Never say the R word (the derogatory term “retarded”) as it is a sign of disrespect.

Don’t point. If you’re really curious, ask questions. “Doesn’t matter whether it’s at a grocery store or at a gas station, people who have different challenges are aware of it,” said Diaz. “It’s totally fine to ask questions. You can ask why (the person) can’t move their hand. Unless you ask why, you’re going to make up a story in your head. It can be much worse than it is or much different than it is. Why go through that? Just ask.”

Jennifer Sangalang is the entertainment reporter and Nerdgirl columnist at FLORIDA TODAY. She grew up in Brevard, graduating from Satellite High and the University of Central Florida. She lives in Melbourne with her husband and 14-year-old daughter. She’s been with FLORIDA TODAY since 1997.

Craig Rubadoux is an award-winning visual journalist with FLORIDA TODAY. He has been nominated twice for the Pulitzer Prize and has won numerous awards covering earthquakes, hurricanes, wildfires, the space program and sports. He’s been with FLORIDA TODAY since 1986.