It's hard for me to imagine caring for one child with diabetes. But four? Sounds impossible. And yet, for the Colorado-based Hayes family, that is reality. Four out of five of Bubba and Julie Hayes' kids have type 1 diabetes.
Their odyssey began when daughter Ashley was diagnosed in 2004, at the age of 3. Unbelievably, Ashley's twin sister Emily soon began having symptoms that would lead to her diagnosis. Five years later, sister Melanie was diagnosed at age 11. The Hayes' son McGuire was diagnosed three years later.
"It's quite shocking every time," Hayes told Parents.com, adding, "But it's more scary the first time." That's because, according to her, you basically have to be trained on how to take care of your child all over again. Hayes admits that simple tasks she took for granted, like making dinner, seemed daunting after her first child was diagnosed.
Hayes is not alone. Because although having four children with diabetes is rare, the disease itself, in which the body does not produce insulin, is not rare. In fact, every 23 seconds, someone in the U.S. is diagnosed with diabetes. And it's estimated that 1 in 11 Americans has the condition, or about 29 million people. According to the American Diabetes Association, however, just 5 percent of people with diabetes have type 1, usually diagnosed in childhood, like the Hayes kids.
As time went on, Hayes says managing the glucose levels of four kids was no easy task, but that she and her husband were managing. That is, until last September, when, as she explains on their Dexcom Warriors page, everything changed. "I went in to Emily's room and couldn't rouse her. She had gone so low that she had a seizure and had stopped breathing. Mercifully, with some glucagon, she regained consciousness and didn't have any lasting effects. But it is such a terrifying thing to see your child go through, and I couldn't live in constant fear that this could happen to any one of the kids at any time."
That's when the family began using the Dexcom G5™ Mobile CGM System, a continuous glucose monitoring system. It's basically a sensor that feeds information to a mobile device. Hayes told Parents.com that it's like having a "diabetes control board on the phone." She also says, "We have better information now, so I've been able to make adjustments to the kids' insulin therapy based on the trends and patterns I see." Hayes adds that now, she's able to be proactive instead of reactive, like when the kids were pricking their fingers every couple of hours each day. Back then, she almost felt "blind" to what was really going on.
Still, Hayes worries. She spends most nights getting up every few hours so she can "be her children's pancreas." She watches their numbers, and if someone "gets low," she'll wake them up to drink a juice.
But her advice to other parents who are in her shoes, just learning about a child's diagnosis, is that there's life with diabetes. "There are worse things," Hayes told us. Consider that Ashley and Emily are BMX bike-racing Olympic hopefuls!
Meanwhile, as Melanie, now 15, told us, there is a silver lining to living in a family where most of your siblings have diabetes. "It's nice to have people to talk to; someone who knows how it feels."
Help raise awareness online about diabetes, and/or share your story, by using the hashtag #ThisIsDiabetes, and participate in the American Diabetes Association's This Is Diabetes Campaign during American Diabetes Month this November.
Melissa Willets is a writer/blogger and a mom. Find her on Facebook where she chronicles her life momming under the influence. Of coffee.