It sounds so simple yet is so devastating: Type I diabetes happens when your body suddenly stops making insulin, a hormone that is essential to regulating blood sugar.
It has nothing to do with diet or lifestyle and everything to do with genetics and just the unknown—but that still doesn’t help with the guilt, said mom Gretchen Van Daly. Her son Carter was diagnosed with the autoimmune disease when he was just 20 months old.
“Type I moms in general—like all moms—have a sense of guilt, like maybe I did something wrong,” said Van Daly. “Carter was diagnosed when my second, Mac, was only a few weeks old, and I thought the ice cream I ate every night while pregnant with Mac had something to do with it.”
With the diagnosis, “it was as if the world opened up and swallowed us whole. We had no idea what this meant for Carter. We were sad, angry and confused. We did know his life wouldn’t be the same.”
Talking it out
Van Daly still vividly remembers being in the pediatric intensive care unit, learning to give her toddler shots for the first time and holding him down to check his blood sugar.
“I cried through it,” she said.
In those early days, information is vital. Some parents may need time to process the diagnosis on their own for a while, but in the end, talking with others who have gone through the same experience can be lifesaving.
“Our pediatrician hooked me up with one of his patients. This Type I mom came to my house and sat with me for hours,” Van Daly said. “She talked to me about what this now meant for Carter, how things would be different and often difficult, but that he is still a little boy and needed to be treated as such. She suggested I hook up with a local support group and a playgroup. I also researched on the internet quite a bit—and there’s good and bad with that.”
It isn’t until parents educate themselves that they can help in the management of their child’s disease, and it’s important to remember that Type I diabetes is a disease of constant management. In the beginning, parents will be checking their child’s blood sugar multiple times a day.
“I believe we checked him 10 to 12 times a day when first diagnosed,” Van Daly said. “He was only 20 months and couldn’t tell us accurately how he was feeling.” But that number does go down, she added: Carter is now 15, and he checks his own blood sugar five to six times a day.
There’s also the constant fear of low or high blood sugar and its repercussions—anything from passing out to having a seizure. It’s normal—and it’s also normal for those feelings to intensify when your child is sick and can’t eat, is fighting low blood sugar or after strenuous activity.
“One thing I’d definitely tell new families is to educate others who can help you,” Van Daly added. “You will need a break. The day-to-day needs of a new T1 are intense. Breaks are essential for mental health!”
School presents a whole new set of challenges—and another set of people to educate. Your pediatrician can provide a health plan for you to share with administrators, teachers and coaches, but it’s also important for you as a parent to help educate anyone who has contact with your child: friends, neighbors, Sunday school teachers, babysitters and others.
During elementary and even middle school, the school nurse or other staff should be involved to touch base with your child for blood sugar checks and insulin delivery. But at the same time, parents can start teaching their child how to take care of their Type I diabetes, too. For example, Van Daly said, parents should help kids learn to count carbs and measure insulin doses. Then, by high school, your child should be completely independent when it comes to diabetes care.
Even as children grow, don’t be surprised if the fears seem even greater. “Initial fears of the dangers of a fluctuating blood sugar are later replaced by fears of what your child’s life will be like in the future,” Van Daly said. “Will they have complications from long-term high blood sugars? Will they suffer heart attacks, neuropathy, blindness? In between all that, you fear for their mental happiness. Will they be bullied? Will they have low self-esteem, depression? Will they find a girlfriend and later a wife who will accept them and their chronic disease? It’s mom worry/guilt times five.”
Go with the guilt
Experienced parents of any child know: The worry and guilt never go away. But parents of a child with Type I diabetes need to know this most of all: Your child is a kid first and a diabetic second.
So even though you might worry, you have to let your child have as many normal experiences as possible, from birthday parties (complete with cupcakes) and sports to spending the night with friends.
“Let them—that’s what your hard word in checking blood sugars and insulin are for,” Van Daly said. “They will make mistakes, forget to check and have a high blood sugar. It happens. Just correct it, learn from it and move on. As they get older, they will want more responsibility, so give it to them but in small manageable steps.
“This is their disease, and it will be with them for the rest of their lives. For success as an adult, they need to learn to manage it. You can’t take this disease away from them, but you can teach them the tools along the way to eventually take ownership of it. That is the end goal.”
Depend on us
If your child struggles with pediatric diabetes or other metabolic disorders, depend on the professionals at the Children’s Hospital of Georgia at Augusta University. Our pediatric diabetes team sponsors the only pediatric diabetes management program in the area, helping about 350 children each year manage diabetes and live full and active lives. To make an appointment, call 706-721-KIDS (5437).