“Eric has what they call a 15th chromosomal abnormality. Which means that his chromosome set is messed up. There are pieces of it that could be diagnosed as one thing and pieces of it that could be diagnosed as another,” Charlie said. “ But basically it means that he got mental retardation, respiratory problems and one kidney. And he’s about the happiest little kid I’ve ever met in my life.”
The narrative of Eric and Charlie began eight years ago. That’s when Charlie was in the midst of a successful career as a chef. It was by sheer accident that he became a pediatric nurse. While managing food services at St. Vincent Hospital in Portland, he volunteered with teens served by the Morrison Center. Something clicked and he began considering a career change. He started taking his college prerequisites to become a social worker. Then a nurse in the cardiac lab at St. Vincent’s
suggested a different track. “He said ‘you are going to get a bachelor’s in psychology and not be able to get a job.’” A degree in nursing, he said, would open doors immediately. Charlie enrolled at the University of Portland and found his calling.
“When I did my pediatric rounds at Emmanuel Hospital, I knew in a matter of days that this was what I wanted to do.”
It was at Emmanuel that he first met Eric when he came in for a procedure. “Like most of these medically fragile kids, they go to the hospital all the time,” he recalled. Eric’s foster mom, Kristen Hilfiger, encouraged Charlie to come work in her medical foster home, but he was reluctant to leave the hospital where he felt comfortable. Later Kristen told him Eric’s nurse was experiencing some problems that required a frequent sub. To help Kristen out, Charlie gave it a try.
“So I subbed for Eric and I fell in love with it. And I fell in love with Eric. My own children were just about to become school-aged. I was looking at teacher’s hours, but also student hours. I was sold on it. Beth Baynes (his supervisor) and I got along
phenomenally at the time.” Charlie made a commitment that he isn’t about to
break.
“His mother recruited me to work with Eric. I would not be working here if it weren’t for him. I didn’t come here looking for a job. I had a job. I promised his mom I would get him through school.”
With Charlie, Eric blossoms
When Eric met Charlie, he was, to put it mildly, a real handful - hard to control and having tantrums on a daily basis. “He was the most combative little guy in the classroom. He hit people all the time, threw fits and rolled on the floor. “ Charlie decided he would take a completely different approach. He wouldn’t force Eric to do
anything. Instead, he was going to help him and allow him an appropriate level of self-determination. Carefully picking his battles, patiently working through setbacks and marshalling the help of MESD’s therapists, Charlie soon uncovered the real Eric. “Within weeks, he was responding to me.”
The next challenge was to get Eric out of his wheelchair. Charlie found an endocrinologist to start Eric on a regimen that would help him grow and gain muscle mass. Since then Eric has grown eight inches. “Four years ago we threw the wheelchair away. Two years ago, we started him walking independently for short steps. We’d like to get him walking completely independently by the time he’s 21,” Charlie said.
On the day of this visit, Eric seems distant and marginally engaged. But there’s reason. Eric didn’t sleep well the night before and has been awake since about 2:30 a.m. Charlie might actually welcome this temporary hiatus in Eric’s usual energy. On a regular day, Eric is active and occupied in his routine. On this day he is reserved but Charlie says his personality is usually “over the top.”“He’s a rascal, but he’s my rascal.”
Still, Charlie communicates with Eric, joking, cajoling and coaxing his cooperation as he attaches a nebulizer which helps Eric clear his airway, and then feeds him through his g-tube. “His reception is incredibly high. He really understands about 90 percent of what we are talking about,” he reports. “He receives it, he gets the
general idea. What it actually means to him, I don’t know. But his expressive side is more limited. He’s a smart kid. His memory is like a steel trap. Once he learns something he’s got it.”
Now in their fourth school together
Their eight-year journey together has taken them to four schools - Kelly Creek, Reynolds Middle, Cleveland High and now GHS in Cathy Young’s classroom. After one more year of high school Eric may go to MESD’s Pathways Community School.
Through it all, Eric and Charlie are traveling side by side. “He’s mine until he’s 21. Then I’ll take on another kid because I love this job so much.” There are many jobs at MESD in which close personal and professional bonds between staff and students
are essential. Being a one-to-one nurse is surely one of those.
Charlie takes a look at his classroom at GHS and sums it up this way:
“There are nine kids in this classroom. They are all being serviced by MESD in a highly personal way. MESD provides the teachers, the therapists. And that happens all over the county,” he said. “They are somebody’s child. As a father, when you send your kids to school, you want to trust that the people taking care of your kid are going to give them at the least the respect, and the dignity, if not the love, that you do. You want to know that they are going to come home safe, that they are being looked out for, that their basic needs are being met throughout the day so that when they come home they are just as healthy and happy emotionally as well as physically. And I know that’s what they get in this classroom. I know that.”
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