Kirsten Schull is a power mom. Living in the dairy-farming country of Warren, Utah, she and her husband consider themselves to have a normal family of eight children. All are musically gifted, while some into computers, sports and singing.
And six of her eight children have type 1 diabetes.
Diabetes affects 25.8 million people, 8.3 percent of the U.S. population, according to the Center for Disease Control and Prevention. Within those numbers, about 215,000 people under the age of 20 are diagnosed with diabetes and 5 percent of the total have type 1 diabetes.
Imagine pricking your fingers four to five times a day to test your glucose level and inserting a needle four to seven times a day to put insulin into your body. On top of all that, imagine riding a constant wave of up-and-down sugar levels that leave you feeling energetic one moment and tired the next, or focused one moment and completely unfocused the next.
That's the life of a typical type 1 diabetic.
"I think that emotionally it's tough," Schull said. "It's tough on kids because they get a sense that they're not quite normal that they're just a little set apart and a lot of time the parents can't handle it."
Type 1 diabetes is a chronic disease in which the body produces little or no insulin, a hormone produced in the pancreas which is necessary to convert sugar, starches and other food into energy. The lack of insulin causes high levels of a sugar called glucose to build up in the bloodstream instead of going into the cells where it is stored and later converted into energy. Without the conversion of sugar into energy, the body begins to exhibit symptoms of fatigue, hunger, increased urination, weight loss and thirst.
After several years of practice, the Schulls have mastered the mental, emotional and physical side of caring for their children with type 1 diabetes.
"We always say welcome to the club," Schull said. "It's not a great club to be in, but welcome. We love each other and support one another and it works."
Adjusting at home
According to Schull, one of the best things you can do for your child is to keep the diagnosis in perspective and keep it low key.
"If you make it the focus of everything and watch your kids, they can't settle back into life," she said. "Then they'll grieve their health."
Schull reminds parents to talk to their children lovingly and to remember that a child isn't diabetes and diabetes isn't your child. "Let your child be normal. Be involved with them personally before you even get to the diabetes."
Each child has to go through the processes of adaptation, but they can come to terms and learn to manage.
Lilly Diabetes, a pharmaceutical company that supports programs and initiatives for people living with diabetes, partnered with Disney to provide resources and information to parents of children with type 1 diabetes. In addition to the family.go.com/type1 website, the organizations have made available "Dishing it Up Disney Style," a cookbook of recipes for families with type 1 diabetes and a series of children's books about a character named Coco who has type 1 diabetes. Parents can obtain free copies of the books from their children's health-care provider.
Adjusting to school
One of these children's books, "Coco Goes Back to School," focuses on returning to school after being diagnosed with type 1 diabetes. In the book, Coco explains type 1 diabetes to her classmates.
"When a kid is just barely going back (to school) and they're panic stricken and emotionally overwhelmed, it's so hard (for them) to step back in and there's so much scrutiny over what kids eat and it can get overwhelming for them," Schull said.
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