Two years ago, my husband Mike began to feel unsteady as he walked with Tom, our oldest son, to an appointment. Mike wasn’t quite walking in a straight line, and he was sweating. Tom noticed and asked Mike if he was okay.
“Yes,” Mike said. “I just need to get some food.”
Mike was looking for a store, somewhere he could buy something – anything – to put into his mouth. He knew his blood sugar was low, but it was already so low that he couldn’t think clearly enough to reach for the sugar packet in his wallet. Just get to the store, was all he could think. He had begun to stagger.
Tom was frightened. “Do you need some help?” he asked.
Mike just kept moving in the direction of a store. When he got there he grabbed something and ate without even thinking about paying first. As the food helped Mike’s blood sugar rise, he began to feel better. He began to look better, too. Tom, however, was pale and shaken.
Tom remembers that episode of hypoglycemia with great clarity. The fear it invoked lives inside him as much as diabetes lives in Mike. As most of us with diabetes know, the illness doesn’t just affect the person who has it. It affects the entire family. And in our case, the affect is doubled, as Mike and I have both have diabetes.
Emotional support is crucial for everyone with diabetes and everyone affected by diabetes. The diabetes online community is a wonderful resource for people with diabetes, and there is a sub-community of parents of children with diabetes that makes a difference in so many lives. There are camps and activities for children with diabetes. But the ones in the diabetes realm who don’t get a lot of attention are the children of people with diabetes.
I was not prepared with the right words to calm Tom after he witnessed Mike’s severe hypoglycemia. “Everything is fine now,” isn’t enough. Diabetes, after all, isn’t going away. In one moment, my 9-year-old son had faced both the fear of not being able to help his father and the fear of losing his father. So what is the right thing to say in such a situation? According to Barbara Anderson, Ph.D., a clinical psychologist and professor of pediatrics at the Baylor College of Medicine, “it’s best focus on all the hard work you and your husband do to be safe and healthy. And while severe low blood glucose will not happen often, when this does happen, you and he know what to do to be safe. What’s also important is that the child should not feel responsible for helping either of you when you have low blood sugar. They should know that you know what to do.”
But as I recall from my own childhood, what you know doesn’t necessarily correspond with how you feel. My mother was sick when I was a child, and although cognitively I understood that helping her was not my responsibility, there was not a day that I didn’t feel like I should be doing something to help. I also know from my own life that the psychological repercussions of seeing a parent vulnerable are heavy ones. Fortunately, diabetes is treatable, my mother’s condition was not. Still, I do not want my children to suffer psychological side effects from their parents’ disease.
Anderson recommends focusing on the good treatment that there is and that you give yourself. She says to tell children that you “work very hard to stay healthy—checking blood glucose, carrying snacks, seeing doctors, etc.”
Mike and I do work hard to stay healthy. But staying healthy for us is a big job. Diabetes is all-consuming, and we have to fight to make it not be. Our children hear about it all the time – we don’t even realize how often we talk about it. What’s your blood sugar? How many carbs are in quinoa? Should I pre-bolus for dinner? Diabetes conversations are just part of our daily life. But I don’t want our children to have the sense that diabetes consumes us. “I don’t think many kids can understand just how all-consuming it is to live with type 1 diabetes, says Anderson. ” In fact many adults can’t grasp this.”
I hope my sons cannot grasp this, because I know they worry that they, too, will have diabetes. They have asked, in the most straight forward way. When the subject has come up, I tell them that even if they do one day have diabetes, they will be fine. We know how to take care of it.
When there is type 1 diabetes in the family, some parents decide to test their children for antibodies, markers of diabetes, which if present can predict the likelihood of developing the disease. Mike and I have decided, for now, not to test. But if we were to test, would we want our sons to know the results, should they indicate diabetes? “It is really a very personal decision each parent has about testing a child for antibodies (as in TrialNet),” says Anderson. “I would never say that everyone should or should not do this. It is an individual decision. And what a child was told would really depend on their age, maturity level, and prior exposure to type 1 diabetes.”
My sons have had plenty of exposure to type 1 diabetes. I want to do everything in my power keep the burden of diabetes light. Despite my efforts, it’s inevitable that diabetes will affect them. If we’re lucky, they’ll always be able to express their diabetes fears, and we’ll deal with them in a smart and rational way. And if the need to help their parents continues to grow, perhaps they’ll study medicine or science. Maybe they’ll even find a cure.
*Originally posted in 2012. Since then, two of the author’s children participated in TrialNet.