Caring for a child with special needs is often lonely and exhausting. This is especially true when the illness is both difficult for others to see and widely misunderstood. This is too often the case with type 1 diabetes, a dangerous autoimmune disease in which the body doesn’t produce insulin. We spoke to parents of children with type 1 diabetes to find out what they want you to know about their life.
“We are our child’s pancreas.”
“Parenting a child with type one diabetes means being your child's pancreas. You are checking blood sugar levels nonstop and dose insulin based on carbohydrates eaten, activity level/exercise, growth spurts, stress, and everything else that could affect insulin needs. Blood sugar dipping dangerously low or dangerously high could cause permanent damage or death. Every day is walking that tightrope with your child, trying not to let them fall off.” Karen Lantz.
“We are proud of how our children handle this disease.”
“We our proud of how our son handles this disease. Samuel, age 8, senses his blood sugars accurately; he scores a goal at soccer while wearing his pump; he checks his blood sugar publicly and answers strangers' questions about his diabetes. At six, he biked the entire eight miles for ADA's Tour de Cure. He never takes off his diabetes alert bracelet. He has great empathy when others are sick. - Edward Perrin
“We worry our children won’t make it through the night.”
“There’s always constant worry. You never stop wondering if your child's blood sugar is too high or too low. It means never a full night of sleep and your first thought when waking up is, ‘I hope my child made it through the night.’” - Karen Armstrong
“Parenting a child with type 1 diabetes is also very isolating. We are often looked down upon because people don't understand it is an autoimmune disease, something completely separate from type 2 diabetes. We are often blamed for our child’s disease. Most people don't understand the hour to hour care required to manage this disease and assume we are just completely paranoid or making a big deal out of nothing. The luckiest of us have found online support groups- this makes a WORLD of difference. I don't know how I could manage without the T1 parent community.” - Emily Evans
“The jokes about diabetes need to stop.”
“Type 1 diabetes is a gut wrenching diagnosis at first. It took me an entire year to stop blaming myself for my son's autoimmune disease. I'm still haunted by the fact that I missed the symptoms until he was dangerously close to diabetic ketoacidosis (DKA, sometimes referred to as a diabetic coma). I could have lost him. And the truth is I still can. Insulin is treatment, not a cure. Too much insulin can be lethal, so can too little. My son and I make life and death calculations in the middle of the night in a severely sleep deprived state. He is so strong and so am I. The jokes about diabetes need to stop. It is NOT funny.” - Cassie Stevens
“Our children’s disease consumes us.”
Caring for a child with type 1 diabetes is all-consuming. There is not a moment in the day (or night for that matter) that it’s not in the back of my mind.” - Veronica Lynch
“We’re always hyper alert.”
“Parenting a child, in our case a baby, with type 1 means I know every wrinkle on his toes, every look he makes when his blood sugar is low and every sweat pattern when it’s high. Type1 is a constant source of fear, guilt, and hyper alertness.” - Katie Fralick
“Parents go through all of the emotional stages of grief - it has been six years since diagnosis and I still bounce between anger and depression.” - Karen Valente
“Even a birthday party could be dangerous for our children.”
We can’t just send our children off to school, sports practice, field trips, sleepovers, etc. We need to educate all adults in charge about things like hypoglycemia and glucagon. We need to stick around to make sure blood sugar is at a safe level for participating in dance class or party games. It means never ever letting your guard down because it's your baby and she deserves every ounce of your efforts to keep her safe and healthy. - Rebecca Dravis
“It’s a constant rollercoaster.”
Parenting a child with type 1 diabetes has both blessings and difficulties. On one hand, T1D kids often mature fast. They become independent and learn to take care of themselves. Every parent wants that. On the other hand, what parent wants to kiss their child goodnight every single night knowing their child might not wake up in the morning? That's the reality of being a T1D parent. We're making judgment calls on medication doses every single day that, at a minimum, impact our child's health and at worst can mean life or death. It’s hard watching your kid have to count carbs, factor in their physical activity, and so much more that most kids don't have to worry about. But then there's the joy and pride of watching your child deal with all of that and rise to the challenge. So, being a T1D parent can be a constant roller coaster. - Dr. Christopher Perry
Karen Lantz says, “Our community faces discrimination and constantly fights stereotypes and misinformation.” Show your support by becoming educated. The American Diabetes Association provides extensive information and resources.
Veronica Lynch urges all parents to start by learning the symptoms as type 1 diabetes in children is often misdiagnosed as the flu. “Knowing warning signs such as excessive thirst, frequent bathroom breaks, weight loss and exhaustion could mean the difference between life and death.”