Imagine that on top of everything else you do for your children each day, you also have to make countless decisions that mean the difference between their life or death. That’s what it’s like for parents of young children with type 1 diabetes — they are quite literally keeping their children alive every day and every night with the decisions they make about food choices and insulin levels.
Type 1 diabetes is a chronic condition in which the pancreas doesn’t produce insulin, which is needed in order to get glucose (what your body uses for energy) from the bloodstream into the cells. In order to survive, people with type 1 diabetes require lifelong insulin therapy, including repeated daily blood sugar tests, constant monitoring of diet, and more.
One mom, whose oldest son, Ethan (pictured above with his continuous glucose monitor in his arm and the blue belt that holds his insulin pump), was diagnosed at age 2, took to Facebook to share the reality of managing the “relentless beast” of a disease in an eye-opening post in honor of Diabetes Awareness Month.
Stephanie’s post highlights many of the misconceptions and misunderstandings people have about type 1 diabetes. Most striking is this: “Insulin is life support, not a cure. His devices help us, but we still have to be very vigilant and make countless decisions daily, without the help of a doctor.”
“As a parent, I often cringe at the thought of being labeled as a helicopter parent, or being overprotective or overreactive,” she told POPSUGAR. “If I lose focus for just a moment, it can make the difference between having a fun moment of play or my son lying unconscious on the ground. It’s a very serious disease that can be deadly in the short term and cause devastating complications in the long term if not managed with vigilant care 24 hours a day.”
“Insulin is life support, not a cure.”
Stephanie added that “there are a lot of myths out there or assumptions people make. Oftentimes people offer a food or treatment they heard cures the disease, or think that feeding my child too much sugar caused it. There is no cure, and although diet can help manage it, nothing he ate caused this disease.”
T1D affects about 1.25 million Americans, including Nick Jonas and former NFL quarterback Jay Cutler. While different, it’s still often confused with type 2 diabetes, which is when the pancreas produces some insulin, but it’s either not enough that the body needs or the body’s cells are resistant to it. Symptoms for T1D can appear relatively suddenly and include:
Bed-wetting in children who previously didn’t wet the bed during the night
Unintended weight loss
Fatigue and weakness
Irritability and other mood changes
Now that her son is 5, Stephanie has gotten “better at rolling with the daily changes and making decisions on the fly,” but it hasn’t necessarily gotten easier. For Ethan, it’s “all he has ever known,” which makes him “very accepting of all the pokes and treatments he receives every day.” He says of having T1D: “I can still have fun!” Homeschooling helps Stephanie keep Ethan’s disease under control, but “inclusion is huge for a T1D family!” She added: “If you are unsure about how to help us be included in some activity or party, simply asking is a really big deal.”
To learn more about T1D, visit the American Diabetes Association.
Image Source: Stephanie Chen