|Josh and Terri Funderwhite at an ADA Tour de Cure.|
Terri Funderwhite was 11 years old in 2001 when her brother, Josh, then 5, was diagnosed with type 1 diabetes. She was worried about him at first, but once Josh returned from the hospital to their home in Forest Park, Ill., he seemed fine. All that Terri knew about the day-in, day-out routine of diabetes was that her dinner got cold while everyone waited for Josh to test his blood glucose. And she didn’t think it was really fair that Josh kept a “treasure trove” of candy that she wasn’t allowed to touch. Although Terri did take on the role of protective big sister—reminding Josh to test, making sure the bigger kids at the neighborhood pool didn’t take his snacks—she says she didn’t really understand what Josh was going through.
When a child is diagnosed with diabetes, it touches every member of the family in a different way. Terri didn’t realize at the time why her parents, Fred and Debbie Funderwhite, were worried about Josh, but today she knows much more about diabetes. She also understands why her mom was so upset by Josh’s diagnosis. Debbie Funderwhite lost her mother and a brother to heart attacks caused by complications of diabetes. Both were only in their mid-40s when they died. She also has four other siblings living with type 2.
While Debbie wished she had known less about diabetes, Terri wished she had known more. It’s just one example of the ways in which a diagnosis is difficult for the child who doesn’t have diabetes, too. “The parents get educated [about diabetes], the child with diabetes gets educated, but there’s no sibling education [at diagnosis],” says Terri, now a junior at Valparaiso University in Indiana. “I wish someone had talked to me without my parents and let me ask questions. I wish someone had told me, ‘This is going to be hard for him, and this is how you can be a good sibling.’ ”
The American Diabetes Association offers the kind of help that Terri Funderwhite wishes she had received. After a child is diagnosed, a parent can call ADA’s Center for Information and Community Support at 1-800-DIABETES (1-800-342-2383) and request an Everyday Wisdom Kit, which includes a booklet of information for siblings. Some local ADA offices offer Family Link, a support program that matches families coping with a new diagnosis with mentor families who have already been there. On Planet D, ADA’s online portal for youth, kids who have diabetes and their siblings can read about other children who have the disease and interact with them on message boards. In some instances, a sibling of a child with diabetes may even be able to go to an ADA Diabetes Camp.
Terri says going to camp is her No. 1 recommendation to brothers and sisters like her. “It will help you understand how your sibling feels—it’s the closest you’ll ever get,” Terri says. The summer after Josh was diagnosed, he and Terri both started going—Josh as a camper and Terri as a volunteer. Over the years, they’ve attended and volunteered at Camps Confidence, Discovery, and Can-Do in Illinois. Josh, now 14, says he’s gained so much from the experience—friendships, a deeper understanding of his diabetes, an opportunity to play sports with other kids who have the disease—that he continues to attend camp as a counselor. His mother and sister still volunteer with him. “It helps me a lot that they’re involved in these things like camp,” Josh says. “I’ve never felt alone in my disease because my family was always there.”
ADA resources for children with diabetes and their siblings, call 1-800-DIABETES (1-800-342-2383). Kids can learn more online at diabetes.org/planetd.
The Funderwhites get involved in other diabetes programs and fund-raisers, too. First, they participated in ADA’s Step Out: Walk to Stop Diabetes, and then they formed a team to participate in ADA’s Tour de Cure cycling event each year. “Any time a sibling has an opportunity to do anything related to diabetes, they should do it happily,” Terri says. “All the support, the [feeling like] you’re not so different—that’s great for a sibling, too.”
Of course, feeling different because you have diabetes is unavoidable to some degree. An enthusiastic athlete, Josh plays volleyball and basketball for Proviso Math and Science Academy in Forest Park, and made it to state-level competition in both sports last year in middle school. Terri says she hates seeing a well-intentioned coach or teammate assume that if Josh doesn’t play well, it might have been because of a low or high blood glucose. That singles Josh out as “the diabetic kid,” she says. Josh says that in these and other social situations, Terri has been a source of support. “One time my sister and I went to a birthday party, and [my blood glucose] was 230, so I couldn’t eat my cake right then,” Josh recalls. “So she didn’t eat it with me, so that I wasn’t the only one.”
Now Terri is away at college and Josh is still at home, but they remain close. Diabetes wasn’t at the center of the relationship Terri and Josh built growing up, playing sports together and going out on their special brother-sister “movie dates.” But how Terri deals with Josh’s diabetes—and how he’s included her in it—has only brought them closer. Siblings who aren’t given a chance to be part of their brother or sister’s diabetes “will be sad, jealous, left out,” Terri says. “Give them opportunities to get involved.”