The arrival of a child generates a mix of anxiety, high hopes and joy. The Wick family of Lombard was no different when dad John was dispatched to Romania in August 2000 to bring home the newest member of the family: a 3-year-old girl named Yanella Elena.
Photo by Frank Pinc/Chicago Parent
Erin Wick was diagnosed with subacute sclerosing pan encephalitis, or SSPE, a rare chronic, progressive encephalitis.
Photo by Frank Pinc/Chicago Parent
John and Sue Wick had already adopted one child, now 19-year-old Megan, when they adopted Erin.
Sue, a tax accountant, and their 9-year-old daughter Megan, the first to be adopted by the family in 1992, held down things at home until John returned with the little girl they would re-name Erin.
Because of their experience with Megan, John and Sue considered themselves veterans of the bumpy yet rewarding road to an adopted child’s acclimation, but they soon found themselves in very unfamiliar territory.
The power struggles began as soon the family left the airport. Erin’s aggressive behavior only escalated at home. She was destructive and didn’t respond to correction. She raged silently, throwing herself to the floor and writhing in furious frustration.
The Wicks studied the video sent by the Romanian orphanage as Erin’s introduction. They couldn’t be sure, but the shy, demure little girl they proclaimed to be “our daughter” at first sight seemed to have little in common with the agitated, destructive little girl who had joined their family.
Not long after her arrival, Erin began disappearing without warning. Panic would always follow as the neighborhood turned out to search for the missing child.
As each problem arose, the family attempted to address it, only to encounter more troubling behavior. Yet there were times when Erin was simply the smart, charming and engaging little girl everyone came to love.The following April, the Wicks’ fears compounded when unnerving physical symptoms began to emerge. Sue described Erin as “droopy,” as if she were exhausted beyond measure, and increasingly clumsy.
Then one morning over an ordinary breakfast, the Wicks’ journey not only lurched off track, but threatened to come to a screeching halt. Erin began to repeat a nonsensical phrase, “Good dea, Mom. Good dea,” and even more alarming, her mouth contorted to one side. Sue feared her daughter was having a stroke and rushed her to a nearby ER.
The first doctor to see Erin diagnosed her with subacute sclerosing pan encephalitis or SSPE, a rare chronic, progressive encephalitis that mostly affects children and young adults and is caused by an infection of the immune-resistant measles virus. That diagnosis was thought unlikely and set aside. Weeks of tests followed. An operation opened her too small skull to let her brain naturally expand, but Erin’s condition quickly deteriorated.
Erin’s language was also fading away. “It seemed like everything was happening even more. She couldn’t even hold up her head,” Sue says.Finally, in July 2001, the Wicks turned to Children’s Memorial Hospital in Chicago for answers. A week of testing, 50 vials of blood and 40 doctors confirmed the diagnosis Erin received seven weeks earlier: Subacute sclerosing pan encephalitis, a result of a very early bout with the measles. Erin had entered the third stage of the four-stage disease.
Erin was given six to 18 months to live. The Wicks faced bringing her home to die. Social workers advised that Erin’s care would be beyond the family’s capabilities. “We said, ‘She’s 4 years old. They gave us a real bad prognosis. We’ll just take care of her.’ She was born in an orphanage. There was no way she was going to die in an institution,” Sue remembers.
She was determined to stay strong. “I can honestly say I had only one major breakdown,” she recalls. “We didn’t know how we were going to take care of her and how we were going to manage and what it meant for our lives.”
The family began the grueling odyssey of full-time care for Erin, who was nearly non-verbal, fed through a feeding tube and in diapers. As is almost always the case for caregivers, Sue had little life beyond tending to Erin, even with the help of her husband, whom she describes as a rock.
“We’ll get through it,” Sue remembers John saying. “We’ll handle it. Even if it’s bad, we’ll be OK. We’ll take it a day at a time, we’ll have help.”Despite generous support from both branches of the family tree, Sue found herself sinking into the sorrow of the loss of her dream.
Then Sept. 11 happened.
“I turned on the TV and thought, ‘Everybody is going through something that could be disastrous,'” Sue says. “It shocked me back into reality. I was living in a daze before that, and it just woke me up.”Life resumed with a new definition of normal. Erin saw physical and occupational therapists and even attended school. But as she grew, her care became more challenging, and Sue was concerned that Erin was not getting enough stimulation at home.
In 2003, after Erin had outlived her prognosis by 18 months, John and Sue began to realize their 7-year-old’s needs would eventually outstrip their ability to provide for them. They explored long-term care options. Erin’s teacher recommended Marklund in nearby Bloomingdale, a home-like facility with an abundance of activities and caring professionals.
“John and I were just enthralled with them,” Sue says. They were certain they could feel at ease there when the need for full-time care arose. They decided to put Erin on the waiting list that summer, expecting a long wait.But on the Tuesday before Thanksgiving 2003, the facility called: There was a sudden opening. Could Erin be there tomorrow?
Stunned, John and Sue begged for a week to decide.Thanksgiving became an overwhelmingly anxious weekend as the Wicks turned over every “what if” again and again. Could they bear to let someone else take over care of their child, even though that care would significantly improve Erin’s quality of life? They ate their holiday dinner with heavy hearts.Finally, because it seemed best for Erin, the Wicks packed up her belongings and took her to Marklund. Erin’s reception immediately brought some peace.
“They fell in love with her immediately, and it was unbelievable the amount of care,” Sue says. “Since that time, she has thrived. She’s happy. Every time you see her she’s got a smile on her face. They take such good care of her; they even paint her fingernails and … do her hair.”
The Wicks include Erin in family activities and keep her overnight from time to time. But when they do, there’s sometimes a problem.
“Erin’s care at Marklund is nothing short of remarkable,” Sue says. “She is so happy that when we bring her home, she will whine because she gets constant attention over there.”
It took time for the Wicks to accept and be at peace with Erin’s living situation, but with the benefit of hindsight, Sue now believes the move was a necessary one.”We didn’t want her to live somewhere else. But it actually saved our lives. It saved all of our lives.”