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Behind a large drum set, complete with a snare, tom-tom, bass, and cymbals, sits Christian Langley. He’s happily pounding away with his drumsticks making thunderous sounds. He hops up to shake hands and then heads toward his computer in the corner of the playroom.

Christian is a nine-year-old boy who captures the attention of everyone who meets him. Despite his young age and the high number of surgeries he’s been through (89), “Christian loves life so much,” his mom, Terry Langley, says.

After Christian has had enough of the computer, he heads toward the living room and hops on his John Deere motorized truck. Christian’s nurse attaches the bag connected to his feeding tube to the back of his truck so he can travel without the wires getting tangled under the moving tires. Maneuvering around his house is not an easy task with the rugs, carpet, furniture, and décor acting as obstacles to the driver; however, Christian knows exactly what to do if he runs into something. He simply puts his truck in reverse, backs up, and heads a different way. He zooms around the living room and into the kitchen, dodging stools, cabinets, and chairs.

Terry says the John Deere truck was his best Christmas present ever and gives him more independence. He loves riding around, inside and outside, and Terry says it has taught him how to problem solve. He knows how to steer and the objective of forward and reverse. He’s even learned to use the truck to express frustration, Terry says, explaining how Christian’s been known to ram it into doorways and furniture.

Christian is constantly on the move during the day. He loves being outside and enjoys swimming in the pool with his floats. He rides the four-wheeler around the neighborhood with his mom and goes camping at Lake Oconee. If Christian could be anywhere, he would be on a boat, Terry says. “He loves to sit behind the wheel of a boat,” she says.

“I don’t want to downplay how medically fragile he is,” Terry says, but “he’s not tied down to an area. We allow him flexibility, choices.”

Christian receives breathing treatments every four hours, and his mom or nurse will set up the treatment wherever Christian is at the time. They do treatments outside or in the car when traveling. “I believe the reason Christian is so well is because I give him a normal life,” Terry explains.

Christian requires a ventilator at night, and his mom says he associates the ventilator with being in bed. If he’s sick, he knows to rest and stay on the vent in bed. “We’re fortunate enough,” Terry says. “He has strength enough during the day that he doesn’t need the vent, only at night.” Most people who use ventilators use them constantly and give into the support, but Terry says she has never treated Christian as fragile and has given him normalcy. “Because of that, I really believe Christian’s will defies statistics,” she says.

When Christian was born, his neck was broken at delivery, and Terry says the doctors gave her a long list of what was wrong with her baby. Terry, a nurse, says she could not see herself quitting her job, and she did not have family nearby to help her with the new baby. She was presented with the option of giving her son up for institutionalized care.

“I probably would have let the system take over if I’d never laid eyes on him,” Terry says. But she did. Prepared with the doctors’ warnings of how different he looked, she held her new son. “Yes, he was different,” she says, “but he was my different child. To me, he was beautiful; he was so sweet. The minute I held him, we bonded.”

Terry gets teary-eyed remembering how she could have opted to give her son away. She is so thankful that she didn’t. And now she can’t picture living any other way. “I couldn’t imagine living without the impact of what he’s taught me…to have compassion for others,” she says. “He is the most precious, brightest ray of sunshine, who gives meaning to life,” Terry says. “You look in his eyes and if he can get up and give you a smile after all he’s been through, who am I to complain?”

Terry had to leave Christian at the hospital for 17 days after he was born. When he was released, the doctors told her he would be a Sudden Infant Death Syndrome (SIDS) baby, “but because I’m a nurse, I knew the things [machines, medicines] to ask for,” Terry says. She brought Christian home and soon after, he went into respiratory distress. At the hospital, he shut down two breathing machines, and received an emergency tracheotomy tube. “Ever since then, he’s been wonderful,” Terry says.

To date, Christian has been in and out of operating rooms and hospitals, with 89 surgeries, 33 outpatient visits, 20 emergency room visits, and a total of 339 hospital day stays, but “Christian has a desire to live,” his mom says. The doctors told her Christian would not live to be two, but Christian is turning ten in October.

Terry feels that he would not be alive if she had placed him in an institution. “I can’t fathom how much we’ve identified that keeps him alive and gives him a better quality of life…he would have died in an institution,” she says.

Terry has researched her son’s rare condition, OPITZFG Syndrome, and taken him to the doctor in Salt Lake City who identified the syndrome. To be diagnosed with OPTIZFG, a person has to have six or more characteristics, and Christian has 72, Terry says. She has also found other specialists and has driven Christian to various parts of the country for treatment.

Terry says that she knew her rights as a parent and Christian’s rights as a child with disabilities. When she first came home from the hospital, she had a Babies Can’t Wait referral from the hospital and received Katie Beckett funding. (The Katie Beckett waiver serves children with serious disabilities whose families keep them at home, disregarding the parents’ income and resources).

At one point though, a provider “dropped” Christian before he went into the hospital for a scheduled surgery, and Terry knew not to sign a waiver that would send him to an institution for care. She says she held a press conference at the hospital and refused to take him home without supports.

“I chose to keep him in the hospital for two weeks to demand services because if I’d brought him home, I’d never get services at home,” Terry explains. She knew the hospital could not discharge a patient labeled “medically fragile” without correct supports and resources. “I knew if anything happened, the hospital was liable,” she says. She also knew if she signed the waiver, Christian would have been sent to an institution.

Terry knew the numbers, too: It cost Medicaid $2,645 per day to keep Christian in the hospital because he has to be in an Intensive Care Unit. It would cost $552 per day for a nurse at home.

Finally, after what she described as an awful two weeks of leaving her son in the hospital, Terry brought Christian home with supports in place. The Department of Community Health implemented a Pilot Program called SOURCE (Service Options Using Resources in a Community Environment), which allows people with disabilities to receive home- and community-based care so that they can stay at home; which is what Christian so desperately deserved and needed. The Model Waiver Christian receives now serves children who use oxygen and ventilators by providing a nurse in the home.

“I don’t ask for anything other than what Christian needs,” Terry says. Currently, she is appealing to Medicaid for the cost of Christian’s supplies. Terry is paying $1,200 a month out of pocket for supplies that Medicaid should cover. She’s been told that “if he’s so needy, put him away,” she recalls. “Over my dead body, I’ll institutionalize him,” she says.

Through the Model Waiver, Christian is allotted 84 hours of nursing support per week at home. Based on prior crises that the family abstained, Christian is not able to utilize the complete 84 hours as Terry wishes. They like having some weekends free of outside interference which increases Christian’s independence, family time and privacy. However, Terry continues to advocate with nursing agencies to be able to fulfill his nursing needs, she says.

At night however, Christian requires medications and respiratory treatments as often as every four hours, which a nurse must administer so Terry can get a full night’s rest and be ready to attend to Christian the next day. On weekend nights, Terry sleeps in her son’s room to administer the treatments herself. Christian sleeps right through the treatments every four hours.

Now, Terry is a part of Georgia ARCH (Advocates for Rights to Children’s Healthcare), a parent advocate group, because, “parents really do know,” she says. She learned from other parents of children with disabilities and learned to advocate and network. She says she knew that, “If I wasn’t Christian’s voice, nobody was.”

“The parents are not asking for the moon and all that,” Terry explains, “just the resources our children need. We know how to take care of our kids best,” she says.

“With the right resources, he can do anything. In an institution, he wouldn’t even be outside,” Terry says.

He would miss out on the constants in his life too, like his mom, Terry says. It’s hard to develop lasting relationships in institutions where shifts change and employees come and go.

“The joys of seeing him get up when he wants to and play are wonderful,” Terry says. “I wouldn’t be able to experience it if he were in an institution,” she adds. “He wouldn’t be as happy. I’m not convinced he’d be alive. He’s so medically fragile.”

At home, Christian receives physical, occupational, and speech therapy every week. He also receives augmentative communication support where he learns to communicate through a computer that the school purchased for him. Christian communicates with pictures and understands some sign language.

Christian attended public school with a nurse when he was younger, but has been home schooled for the past three years because of his Christian with his sister, Destiny Children in Nursing Homes / 25 illnesses and number of surgeries. His teacher comes to their home two days a week and Christian loves it, Terry says. “He loves people.” The teacher works with him on fine motor skills, attending to tasks, identifying objects, and using picture boards. He is also learning to tolerate different textures in his mouth.

Looking toward the future, Terry hopes that her son never has to compromise his independence. “Should anything happen to me … that Christian is able to maintain the independence I’ve given him,” she explains. She wants to eventually build a home that has separate living quarters for Christian, she says. “It will be his home. I want him to have his own, with support,” she adds. Terry believes Christian knows how strong his mother is and hopes that she will be an example for him.

Terry says, “life is good” often, especially with the support from the model waiver, but there is sadness in her life as well. Terry’s daughter, Destiny, was ten years old when Christian was born. She says her children loved each other and there are numerous photographs around her home of her children playing together. When Destiny was 17, though, Terry says she ran away from home. Destiny felt Terry gave more attention to her younger brother, Terry explains. When

Destiny was in high school, Terry says she was lenient with her and she believes Destiny became involved with the wrong crowd. Before she left home, Destiny was an honor roll student and a cheerleader.

Terry says she did not have enough support to care for a medically fragile child and attend to her daughter. She wishes that she had spoken with the medical team voicing Christian’s needs so that more nursing hours could have been utilized when Destiny was at home so that hopefully the family could have remained in tact, Terry says. Readjusting Christian’s nursing hours would have allowed Terry to spend more one on one time with her daughter as she would have been able to leave Christian with the nurse.

“I wouldn’t change anything,” Terry says, except she would advocate for more one-on-one time for siblings. Supports are not only for the child, but for the whole family. Terry says she was unaware that the 84 hours of nursing per week did not have to be split into 12-hour days, but that she could have used a 24-hour day or 36-hour shift and spent time with Destiny while the nurses were with Christian.

Terry does not know where Destiny is now or how she is doing. She only hopes Destiny will “realize the roots that I instilled in her and never give up,” Terry says, “because I could have thrown her brother away to society.” Terry says she knows Destiny needs her own time, her own space, and her own identity. She says Destiny was known as “Christian’s sister” which hindered her in making a name for herself.

“I have no regrets other than not using nursing hours to be with my daughter,” Terry says. And “Christian loved his sister,” she adds, glancing over the photographs of the two of them together.

Terry says she considered seeking temporary placement for Christian after Destiny left home, but she’s glad she didn’t go through with it. “Christian is my therapy,” she says. “It would break my heart to know other families are out there not enjoying what I have with Christian,” she adds.

Terry advises other families to keep trying for their children. “You can’t be faulted for trying,” she says. “Always ask questions and insist for answers,” she adds.

“Christian is here for a reason,” Terry says. She and the other parents with Georgia ARCH share the same belief that their children are here to make a difference. “Until you get active, things don’t change,” she says.

“Don’t give up,” she advises. “I don’t care what you have to do and what you have to go through. You are their voice and their vehicle!”