Against All Odds
Born 77 days premature, 8-year-old Roxy Cooper lives one colorful life
“Do you understand why people are so interested in you?” Sarah asks.
“Is it because I have a tracheotomy and stuff?” responds 8-year-old Roxy as her mother nods.
“Do you think you’ll be OK with walking in the fashion show in front of all those people?” Sarah asks, still trying to make sure her older child grasps the concept.
“Yeah,” Roxy nods confidently. “Do you think they will give me a microphone?”
Her precociousness is one of many sweet expressions of this little girl’s spirit. Roxy is filled with skills that many adults lack, such as her amazing ability to adapt and remain positive, especially during trying times.
In many ways, Roxy is something of a walking rainbow. She sparkles with a tender kind of strength that leaves people in awe.
On any given day, she romps happily through the world clad in brightly colored leggings paired with colored skirts. If the mood strikes, she may wear a couple of colorful shirts at the same time.
Roxy is not only in love with bright colors, she is rather obsessed with accessories. In fact, she rarely leaves her bedroom without donning a headband, several bracelets and a couple of necklaces, especially ones decorated with feathers. And don’t forget the sparkling, light-up shoes.
Her life has been so tenuous so many times that fear of losing Roxy somehow became the norm. After being born 77 days premature, Roxy has undergone 10 surgeries in eight years. Another procedure is set for this summer after she completes second grade at St. Luke Catholic School. As each day she grows older, stronger and more capable of understanding her own needs, there is no doubt that Roxy’s approach to the world is uniquely important.
Her message for all of us is dimensional, yet simple: People are beautiful in lovely, unpredictable ways and are limited only by their own beliefs.
“Roxy doesn’t see obstacles,” says Becky Mayo, her maternal grandmother. “She just does things her own way.”
Life before Roxy entered the world tells even more about this adorable child surrounded by so many loving hearts.
Sarah and Roxy’s father, Bobby Cooper, owner of Bobby Cooper Salon, met more than a decade ago when Bobby frequented the Broad Ripple restaurant owned by Sarah’s family.
He asked her out one afternoon.
“And we’ve been together ever since. Right away, we both knew we were the ones for each other,” Sarah says.
As a student at Ball State University, Sarah withdrew for a semester to be a nanny in Rome, Italy. After she had related the experience years later to Bobby, he later proposed while they were in Venice. While sipping champagne, they decided to exchange vows there also. So their families traveled with them to Italy for the ceremony at the Hotel de Russie.
“Little did we know what was coming next in our lives,” Cooper says. “It was a first step for all of us –– coming together for what was next.”
Ten months after the marriage, Sarah was pregnant. At 13 weeks, she experienced complications and feared miscarriage. But a doctor visit revealed that “she was in there, still hanging on.”
Just as the parents-to-be took a steady breath, an ultrasound showed that “something was definitely wrong with her jaw. Even with our unprofessional eyes, Bobby and I saw it too. Her profile was different,” Sarah recalls.
In a panic, they saw nine specialists across the Midwest but got no concrete answers until they found Dr. Alan Golichowski at Indiana University Hospital.
From the ultrasounds, Golichowski concluded that Roxy’s jaw was severely underdeveloped, which would affect her breathing and her ability to take in nourishment.
“He was really honest with us and open,” Sarah says. “He helped us to decide from that moment on that this was our child. We were moving forward without looking back. We were naively optimistic, but I think it helped us.”
Overwhelmed and confused
At 28 weeks, they were again in a panic when Sarah went into labor. Despite all efforts to delay delivery, Roxanna Grace Cooper entered the world at 8:23 p.m. on Feb. 7, 2004. They had known she would be born with serious medical challenges but such early delivery would further threaten her life. The women from both sides of the family gathered around the bed as Roxy began her life. Their unspoken fear was that the Coopers’ first child and Mayo’s first grandchild would not survive.
With a birth weight of 2 pounds, 15 ounces, and measuring only 141⁄2 inches long, Roxy was rushed to the NICU. Her head was the size of a small apple. Her skin was completely transparent because she had hardly any fat. Her ears were not fully developed, and her foot was barely over an inch long.
“We were so scared,” Sarah says. ”The situation was so raw. We had just welcomed our first child into this world. We were happy and in love with her already, yet completely overwhelmed, confused and, most of all, terrified.”
For the first 90 minutes of life, Roxy did not draw her own breath. Doctors forced air into her lungs with a tube inserted through her nose.
“She couldn’t make a sound,” Mayo says. “There was no space in her mouth for a windpipe.”
“At one point, Bobby came back into my hospital room,” Sarah says. “He looked like he might faint. He almost lay right on top of me in the bed. Doctors had said there wasn’t much more they could do for her, and Bobby didn’t know how to tell me that.”
But Roxy hung on to the life she would soon fill with color, laughter and plenty of feathered accessories.
There were too many close calls to count –– moments when Roxy forgot to breathe or her heart stopped beating. Three months later, however, she was discharged from the hospital. Many of the machines her family stared at every day in the NICU were now stationed in the Coopers’ living room.
“Roxy was so unstable and fragile,” Sarah says. “We couldn’t take our eyes off her, so we slept in shifts.”
Mayo helped care for Roxy, but she was frightened by the level of her grandchild’s need, she says.
“Those first three years of Roxy’s life were so incredibly difficult medically,” Mayo says. “I was scared to death of the tracheotomy and the g-tube for feedings.”
Girl about town
Roxy has never known life without a feeding tube and tracheotomy. She still has a recessed jaw, a non-functioning jaw joint, meaning she can’t open her mouth, and a cleft palate. She uses a transmitter/receiver at school that delivers sound straight to her hearing aids from her teachers.
She had to undergo rehabilitation to gain muscle in her mouth and tongue. Her elbows are constricted. But she’s practiced for hours and days to hang on the rings at the playground –– with wrists that don’t turn, arms that won’t straighten and thumbs that don’t work.
“And she mastered it,” Sarah says proudly. “Roxy can do flips now.”
Roxy struggles sometimes to be understood when she speaks with her voice instead of sign language. Yet she’s the star in gym class –– she still wants to run a mile, Sarah points out –– and is a wonderful student with beautiful penmanship. She loves Friday night dance parties with her family and Saturday morning trips with “Grammy” to play with puppies at a nearby pet store.
When Roxy insisted on rock climbing during a recent outing at The Children’s Museum, Mayo was anxious about whether it was safe. Once again, that unique blend of colorful determination won out.
“Roxy got two-thirds of the way up to the top,” Mayo says. “I was bursting with pride for her. She was beside herself with joy.”
Sundays are set aside for daddy. Often Bobby and his daughter make a stop at a pottery shop and end the outing with some shopping. Roxy shares her dad’s love for art. One of her own paintings hangs above her bed.
“Bobby is so proud of Roxy,” Sarah says. “The way they hug each other, I know they are both very happy inside.”
Two years ago, Roxy’s sister, Isla Mae Cooper, was born.
“I cried so hard when I saw Isla, not because she was ‘normal,’ but because of relief,” Sarah says. “I thought, OK. I can breathe. It was a true moment of joy.”
For the first three years of her life, Roxy’s voice was silent. Isla’s wail was music.
“Bobby took three weeks off so we could relish in the joy of a healthy baby,” Sarah says. “When Isla cried, we just enjoyed it.”
Roxy lovingly accepted her role as a big sister.
“If anything, Isla has a problem with Roxy,” Sarah says with a laugh. “We call Roxy the ‘pacifier police.’ She’s very attentive to Isla.”
Looking to Roxy’s future, Sarah wants her daughter to be as independent as possible. Right now, Roxy can’t enjoy an overnight stay with anyone but family. So Sarah is teaching her how to change her tracheotomy. One day, when Roxy is more mature and knowledgeable, she won’t be excluded from slumber parties because of medical concerns. She’ll be an expert in meeting her own medical needs.
Other children occasionally approach them in public.
“They ask questions like, ‘Why do you have that thing on your neck?’ and, ‘Why do you talk funny?’” Mayo says. “I always say to them, ‘This is how God made Roxy. That’s a tracheotomy, and it helps her breathe, and she’s just fine.’”
Stares in public still hurt Sarah’s heart. But she tries to adopt her daughter’s view of the world more often –– accepting questions and curiosity without animosity.
“Roxy provides a great learning opportunity for everyone,” Sarah says. “She has wonderful qualities. They might be different from her peers’ but they are wonderful nonetheless.
“Roxy has changed our life in so many wonderful ways. Our life took a gigantic detour. She has taught us to literally stop and smell the roses. She is so kind and gentle with such a loving and forgiving heart that I think, if we could all have even an ounce of that, all of the world’s problems would be solved.”