A STAR is born
Editor’s note: This is part two of a two-part series
This summer, Grace Gilbaugh’s health began to worsen. The 9-year-old regularly has bouts of sickness. It is part of the ebb and flow of her rare genetic condition – STAR Syndrome. There is so much abnormal about her anatomy she rarely makes it more than a few months without needing medical attention. But this summer was different. One night around 3 a.m., Grace began vomiting; the vomit was a strange electric green color. Patti, Grace’s mother, called her doctor.
“You don’t even have time to wait for an ambulance,” she told Patti. “You need to go.”
Grace’s organs were failing, and her doctors didn’t know why.
Patti began to feel a familiar stress, one that always looms: her daughter might die and her doctors wouldn’t be able to tell her how to prevent it. It’s a stress she always faces.
“When do I take her to the hospital?” Patti said. “One minute she will be fine, and 5 minutes later, she will be on her death bed.”
Grace’s rare genetic syndrome often flares up, leaving her missing school for days at a time. And even when she is in school, those in charge of her need to monitor her more closely than they monitor other students, especially when she uses the bathroom. Since Grace’s condition left major malformations on her anus and genitals, she required a battery of surgeries to allow her to dispose of waste. Those surgeries, and various other medical procedures, took their toll. They left Grace with post-traumatic stress disorder.
A change of scenery was the only thing doctors could offer by way of a solution. Sometimes, that can help, they said. It was cold comfort. Patti packed their bags and hoped it wasn’t the last trip she got to take with her daughter. They headed to California.
Jerry Potter, chair of the board for the Grace C. Mae Advocate Center and long-time friend to Patti, said it’s hard not to share Patti’s vision for the center. Knowing her passion spurs everybody on staff.
“It’s an easy vision to catch,” he said of the genesis of his involvement with the center. “Seeing Patti’s heart and knowing the good things that came from those dreams made it easy to help out.”
He said the center is part of a larger picture to bring healing to those in need, which is very fulfilling to him. If there is an aspect of his job that is less-than-rewarding it’s that, because of confidentiality, he doesn’t get to see the success and growth of the center’s clients first hand.
The center is now thriving with six offices in Iowa: Washington, Cedar Rapids, Van Horne, Chariton, Marengo and, as of early 2012, Marshalltown. Its therapists conduct eight different types of therapy for those suffering from mental disorders ranging from Obsessive Compulsive Disorder to anxiety to depression. The center treats a wide array of patients of all ages. Its focus is having therapists that are professional but also approachable.
“Having a place where they can go and feel comfortable and people care about them – it just seems like it really makes a difference,” said Lisa Miller, care coordinator for the center.
Miller said the center has seen a recent boom, adding 26 new clients in the past couple weeks, bringing its total to just shy of 600.
Two weeks following Grace’s surgery on her left hand and foot, her skin graft stopped taking. She was in a wheelchair, and now there was the unexplained bout of vomiting that had her doctors scratching their heads. They prescribed Zofran, an anti-nausea medication, and advised Patti to take Grace on a trip.
During their flight, a kind World War II veteran told Patti that he came out to “take a gander” at the USS Iowa, which the trio also planned to see while in the Golden State. They connected over their desire to see the battleship. His tongue clicked when he talked. His light blue crystal eyes sparkled like the ocean, and he smelled of wood and citrus. His patience while they were loading Grace into her wheelchair gave Patti a good feeling.
Grant, Grace and Patti landed in California. They resolved to hit all the hotspots. They went to the San Diego Zoo. They visited Lego Land and Safari Park.
“It was an eye-opening experience taking a person in a wheelchair to do those things,” Patti said.
When they arrived in Ventura, they visited the thriving downtown boutiques. They ate at a 1950s diner called “The Busy Bee.” The neon of the signs bounced off the black-and-white checkered floor. Each table had a jukebox at it, and the toilets required tokens to use. When Patti pushed Grace’s wheelchair through the door, the greeter took one look at the family – Grant with his Hard Rock Caf T-shirt, fedora and movie-star sunglasses – and sat them at one of the red vinyl booths. A sign on the wall read “No dancing on the tables.”
Inside the Grace C. Mae Advocate Center, 30 W. Main St., there are two rooms where therapists conduct therapy. Inside one, is a shelf of toys – Barbie dolls, shiny toy guns, Play-Doh, a Rubik’s Cube, a bottle of bubbles.
This year, the center is holding a charity ball at the Cedar Rapids Clarion. The ball focuses on PTSD. The theme is an analogy for the facades that Grace and Grant, who both suffer from PTSD, put up. It’s the mask they wear.
“It’s out of compassion that they wear the mask,” Patti said. “They don’t want others to feel bad because they feel bad.”
Children dealing with PTSD often benefit from play therapy. Play therapy allows these children to express themselves emotionally when they wouldn’t otherwise be able.
Kyle Votroubek, a licensed play therapist, said children between the ages of 3 and 12 benefit from play therapy because they lack the emotional skill set to express how they are feeling about a trauma they have suffered.
He said it’s important to let the child know that you accept them regardless of what they feel. He always tells them the same thing when they first come in.
“This is our special play room. You can play with any of the toys you want in lots of the ways you want, and there are no rules unless we have to make some as we go along, and we will talk about it together if we do,” he tells them.
Once the child is able to unpack their feelings, their turmoil melts, and they can begin to cope, he said.
When Grace, Grant and Patti returned home from California, they felt rejuvenated.
Patti brought home eight pounds of fudge. School was just about ready to start, and she had been wrestling with Grace’s school to provide her with an individualized education plan, which it finally granted in January.
Things had returned to normal. Grace’s health had improved.
Patti said her experience with having children with special needs has influenced her decision to encourage families to work with education professionals in developing a plan. She encourages teachers, counselors and others to participate in sessions to understand the process of caring for a special needs child.
When Grace turned 3, the in-home care she was receiving was discontinued. Because of her size, she didn’t yet qualify for a kidney transplant. Patti said the two years that followed were difficult. Having finished her PhD, that experience also shaped Patti’s professional decisions. She resolved to provide mental health services to people in rural communities that wouldn’t otherwise have access to them.
It’s important to never stop believing that the best is possible, Patti said. Patti has seen it. She sees it in the faces of those she works with. She sees in the patients she and her staff help. She sees it in Grace every day. Votroubek called the youngster an “old soul.” Miller said Grace captivates everyone who meets her with her personality and insight.
“This pretty much sums it up,” Patti said unfolding a T-Shirt for the masquerade ball.
In flourished gold script, it reads “Behind this mask is hope.”