Luke, Benny, and Lucy have never known life without type 1 diabetes. Although they do not have it, their oldest brother and biggest example has always (to their recollection) had to give himself insulin with every meal, test his blood sugar, and have juice boxes when he is low.
Today I thought I’d interview them to see what they have observed and understand about it all. As I’ve learned before when interviewing James, even though I think I have a pretty good idea of how my kids feel about a certain topic, owing to the fact that I spend a lot of time with them and we communicate well, asking the questions almost always yields surprises. Today was no different!
I talked with all three kids and got some insightful answers. The biggest takeaway for me is that we assume that the kids understand diabetes because they see it every day. While that is true for Luke, who is older and understands a little better, Benny and Lucy are still a little fuzzy on a lot of the concepts. It would be a really good idea to sit down and have a family meeting about what exactly is diabetes, what it means, and what James has to do to take care of it.
There were some common threads in our conversations. James is the best brother to all the kids. He is kind, he is wonderful. Some of the terms were very glowy. Words like “amazing” were used. Luke said he’s the best brother of all time and the nicest person he knows and his best friend. And as his mother I can vouch for these good qualities!
The kids had very different ideas about how hard it must be to have diabetes. All the kids talked about watching him test. To Lucy, who is only 6, diabetes is the equipment, not the disease. She talks about being grateful for diabetes because it helps him to feel better. What I gently explained to her is that the technology James uses is for his diabetes but that it is essentially a disease that makes it so his pancreas doesn’t produce insulin inside his body, so he has to give himself insulin through shots and a pump instead. The technology helps the diabetes! Important distinction.
Benny thought diabetes didn’t look too hard. But that it had needles. Lucy is sort of jealous that James gets to drink juice boxes and she doesn’t! (We have a lot of kids and we figure everyone else can drink water or milk if they are thirsty. Juice is for lows.) Luke recognized that many of the steps James does would be painful. He mentioned again the needles, the testing, the sensor insertion, and even how crummy you can feel when high or low.
When we talked about how they see him handling these responsibilities, everyone was impressed. They see him as responsible and self-directed. Luke offered that he only needs help when he’s really low. When James is low, he tends to not react as quickly as he should to treat a low blood sugar. “Hang on, Luke, I just want to finish this book.” Luke says he knows the sounds of the sensor and will get him a juice box or coax him to go get some sugar so he is prepared. I’m grateful for Luke’s cool head and understanding!
All the kids love their brother. They all understand the omnipresence of diabetes, but I think they could all be served by a little more information about the disease. It has been fun to learn what his siblings think of James and how he is dealing with all of this. I think I’ll just close with some cute responses from my littles ones. Lucy’s answer to “What do you think about your brother?” was simply, “He has cute eyes and cute hair.” Benny summed it up this way: “James is just perfect the way he is.”
There you go, James. Your siblings adore every inch of you. They don’t understand diabetes entirely, but they know you’re rocking at handling it, and apparently looking good in the process.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.