By Jack from https://fulltimefatherhoodblog.wordpress.com/nn
Mckenzie was diagnosed with type 1 diabetes at the age of three, and Celiac disease shortly thereafter. Now, at the age of 7, she has been living with these chronic conditions for the majority of her life, and certainly remembers living with the conditions for far longer than without. For those who may not be familiar with diabetes, there are two basic types. Type 1 diabetes is an autoimmune disorder in which the body’s immune system attacks the pancreas, destroying its ability to produce insulin. A healthy diet and lifestyle can prevent the development of type 2 diabetes, but it will not prevent type 1. To put it simply, drinking a gallon of soda every day for a decade won’t give you type 1 diabetes, and being an Olympic athlete won’t stop you from getting it. It just happens.
Because her pancreas does not make insulin, Mckenzie’s blood sugar must be checked before every meal, two hours after every meal, when she wakes up, when she goes to bed, in the middle of the night and anytime there is an activity which disrupts her normal schedule. She must then be given insulin or carbohydrates to (hopefully) adjust her blood sugar and keep it in the healthy range. If her blood sugar goes too low she can slip into a coma, if it goes too high for too long her body begins a process called diabetic ketoacidosis which can make her violently ill and land her in the emergency room. It’s the normal way of things for her, but it isn’t easy. She’s the only kid at her elementary school with type 1 diabetes, and the only one of her friends with any type of autoimmune disorder. For that reason, and many others, we were very excited for Mckenzie to attend her first day camp for kids with type 1 diabetes.
The camp was two days, for kids age 6-10, and every kid and counselor there had type 1 diabetes. A YMCA in Colorado Springs donated the space, including use of the pool and the rock climbing wall, and local businesses donated all sorts of food and supplies for the kids. Doctors and nurses donated their time to be on hand in case of emergency, and the atmosphere was very comforting. The effort put forth by the community was amazing, and Mckenzie had the time of her life, even saying at one point, “I’m glad I have diabetes!”
The most memorable moment for me, however, occurred on our way home from the first day of camp. Before we get to that, I should provide some context: Parents dropped their kids off at the YMCA in the morning and did not come back until the afternoon. That’s pretty unusual for parents of kids with type 1, because we’re used to stopping by or speaking with school and/or camps multiple times a day to check blood glucose levels, drop off snacks and help troubleshoot any problems that may arise. At this camp, however, the emphasis was on making the kids as self-sufficient as possible, so parents were encouraged to stay away until the day was done. When we picked Mckenzie up, excited to hear all about camp, she was thrilled to tell us about the swimming and rock climbing and new friends she met that day. It was pretty surprising when she also said her favorite part of the day was standing in the lunch line!
We were speechless, for a moment. The lunch line? With everything that had gone on, how could something like standing in line have been so important? The thing I had neglected to realize was quite simply that it was something she had never been able to do. Mckenzie has had diabetes since before she started school, and for every lunch period since the first day of kindergarten, she has gone down to the nurse’s office just before lunch to check her blood glucose and get the appropriate dose of insulin. Because of that, she is in the nurse’s office while her class lines up, goes to the lunch room and stands in the lunch line. Due to the dietary restrictions of Celiac disease, we always pack her lunch, so she never gets to select what she wants from the options provided at school, and usually gets to the cafeteria after everyone else has their food and is already sitting down to eat. She is rarely able to have the same cupcakes or treats as the other kids at birthday parties, and even if by some miracle the treats are gluten-free, she still has to be pulled aside for a blood sugar check and a dose of insulin.
Her favorite part about diabetes camp was that she got to stand in the lunch line just like everyone else. It had never occurred to me how meaningful that might be to her, because I have never experienced not being able to do it. In fact, for many kids, I’m sure getting to skip the lunch line is something to be grateful for! The difference is the context through which Mckenzie experiences the lunch line. And it’s not true only for people who experience things differently as a result of a health condition, but for people who experience the same event in very different ways as a result of religion, age, gender, ethnicity or any number of variables.
The point is not that my daughter is a stupendous badass (even though she is). The point is that the context through which we experience life shapes that experience, and it is nearly impossible for us to anticipate or judge how someone else should experience their own life. Imagine if you heard my daughter say her favorite part about going to camp was standing in line, and you had not read the previous five paragraphs. “What a weird kid,” you might think to yourself. Now, imagine how many times we do that each day, making snap judgments about things we perceive as awkward or strange, without knowing anything about the context in which they developed.
In closing, it reminds me of a conversation my wife and I recently had with some close friends. We were talking about the factors that make kids who grew up in difficult circumstances successful, and our friend – who just graduated from college and is an awesome father – told us a little about himself. Growing up, he saw lots of alcoholism and violence in his community. He looked at what was happening around him and used it as motivation to make a better life for himself. He told us that a relative of his, who grew up in the same household, looked at those same circumstances as the factors that prevented the development of a better life.
I’m not sure what grand conclusion to draw from all this, but it seems important. The next time I see something I don’t understand, I’ll try to remember that standing in line might be the best part of someone’s weekend.
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