A New Normal

 

Written by Amy Dee Stephens in the November 2015 Issue

Teenager, Paul Crawford, defies stereotype. He doesn’t eat French fries. His standard fast-food order is a burger, salad and water.

Paul CrawfordThings might be different if he hadn’t been diagnosed with Type 1 Diabetes as a second-grader. Since diabetes doesn’t run in the family, the diagnosis was unexpected. That pivotal moment forced the entire family to make life-style changes.

“I was shocked and scared,” said Alissa, Paul’s mother. “I knew it was serious, and it had something to do with food and blood sugar, but I had no idea how all-consuming this health condition would be for the whole family.”

In Paul’s eight-year-old mind, he thought he would undergo a cure and be done. The reality was more evident when he got home from the doctor’s appointment and wanted a snack. Suddenly, he had a whole new regime that included checking his blood sugar and monitoring his food intake. By the end of second grade, he taught himself division in order to calculate sugar amounts.

“He was so excited, but it was hard to be excited about my child having to do that. Until you live with diabetes, you don’t realize—it never goes away.” Alissa said. “He can get very sick, very quickly. His insulin pump can malfunction. Growth hormones change everything. It’s something we constantly live with.”

Understanding Diabetes

Like many people, the Crawfords had little grasp of the differences between Type 1 and Type 2 diabetes, which share some symptoms, but are completely different diseases. Type 1 diabetes is an auto-immune disorder in which the body stops creating insulin, so an outside source is required. Without it, one has less control over emotions and can exhibit extreme hunger or fatigue, headaches…the list goes on.

Paul’s twin brother, Joel, doesn’t have diabetes—but he has become Paul’s best watchdog. If they are playing, and Paul’s emotions start escalating or he acts differently than his normal happy-go-lucky self, Joel stops and says, “I think your blood sugar is high. Go check it.”

“I know he’s saved his brother’s life several times,” Alissa said.

“Our normal is clearly not anyone else’s,” Alissa said with a laugh. “Paul goes through a lot,” Joel said. “Sometimes when he’s high, he gets really angry at me, but we work it out—because we’re brothers, and we love each other.”

Alissa remembers Joel’s reaction the day of Paul’s diagnosis. “He said, ‘I know what my job is—to give him hope.’  He doesn’t realize how much he does for his brother.”

The Crawford’s normal also means that the whole family made dietary changes. They learned that potatoes cause Paul’s blood sugar to skyrocket—so no French fries, baked potatoes or mashed potatoes allowed. “Which makes Thanksgiving interesting,” said Alissa.

The Saturday donut tradition went out the window, and he sticks to diet sodas and sports drinks. “Coke tastes like syrup now.”

Helping Others

Paul CrawfordDespite the constant focus on Paul’s health and diet, Alissa has seen her son turn his daily battle into a blessing for others. She’s so proud of his compassion toward other kids with illness.

“He knows what it’s like to carry this burden all the time,” Alissa said. “He’s astute at noticing when other kids have diabetes, because they all have a signature pump bag of needles, meters and emergency supplies.  He goes over and starts talking to them, and they instantly have a bond.  He walks them through the shock of it.”

“You just talk to them,” Paul said. “It might not seem like much, but that’s what I do to help others.” This year, Paul attended a diabetes camp, which allowed him to meet groundbreaking doctors in the field. He learned improved ways to control his blood sugar, and became aware of a rising concern for kidney cancer.

“As Paul gets older, he’s taking on more responsibility for his condition,” Alissa said. “I’m thankful for our healthcare provider for understanding the ins-and-outs of the disease, and likewise for knowing that I understand the ins-and-outs of my child. Our combined knowledge is helping him become who he wants to be.”

While at camp, Paul decided that he wants to be someone who helps people with diabetes.  Now, he plans to pursue a career in diabetes research. He is very active as an advocate, host, and guest speaker for fundraising events for the Children’s Hospital Foundation, and he was featured as their calendar kid in 2011. Volunteering is often a family affair, with his parents and brother all participating.

“He handles his disease amazingly well, but there’s never a moment to relax,” Alissa said, becoming emotional. “I’m incredibly proud of him. I really wish he could have a day where he didn’t have to deal with it.”

“Camp helped me learn that it’s not just about me,” Paul said. “With all the concern and attention I get, it’s easy to become subconsciously self-centered—but it’s a team effort, and I want to help others understand that they aren’t alone in this struggle.”

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