What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by 

When your child is diagnosed with type 1 diabetes, you are instantly bombarded with a whole new vocabulary: insulin, ketones, test strips, logs, carb ratios, blood glucose, and MORE. You are given a crash course in administering shots before you are sent home. There you are thrown into a living science experiment that never ends. Your alarm is forever set for midnight and 3 am, and you live in a constant state of panic and anxiety worrying about every move your child makes because if he doesn’t take care of his diabetes, it will begin to scar his organs, and it won’t stop until it has killed him. In addition to all the other life lessons you should teach your child, you are saddled with teaching him to safely and healthily maintain his diabetes – after all, he won’t be a minor forever. All this is overwhelming until slowly (and without realizing it) this routine becomes “normal”.

When your child is diagnosed with type 1 diabetes, you become an expert at counting carbohydrates. Gone are the days when diabetics stayed “healthy” by not eating sugar. In fact, my child can eat sugar. He can have cake and ice cream … and a regular soda if he wants … as long as he gets a shot of insulin to help his body use and process the sugar. Now we count the carbohydrates in the food he eats. Sugar free is not the same as carbohydrate free. So thank you for making those brownies with Splenda, but no, my child cannot have as many as he wants because those brownies have flour, which has carbs, which the body turns into sugar. Even cucumbers have carbs.

When your child is diagnosed with type 1 diabetes, you realize how many misconceptions there are about the disease. These misconceptions come from the fact that 95% of diabetics are type 2, so this is the type that most people are familiar with. For example, neither my child nor I did anything that led to this diagnosis. Type 1 diabetes is an autoimmune disease. For some reason, my child’s immune system went nuts and began attacking the cells in the pancreas which make insulin. It has nothing to do with my child’s weight or diet or lack of activity.

When your child is diagnosed with type 1 diabetes, you are told that there IS NO CURE. The cures and treatments you find online are for possibly reversing the effects of type 2 diabetes, not type 1. No amount of cinnamon, physical activity, abstinence from sugar, or prayer can make this go away. Daily shots of insulin, counting carbs, and monitoring blood sugar numbers is the only way to maintain a healthy life. Understand that all of that is still just a treatment, NOT A CURE. My child still has diabetes every moment of every day.

If you have a question, ask. We don’t mind talking about it. We aren’t ashamed because there is nothing to be ashamed of. He goes to summer camp like your kid. His camp just happens to be staffed by doctors and nurses. He goes to school like your kid. He just happens to have to check in with the nurse before he eats. My child is running, eating, playing, and dreaming – just like your kid.

If you want to help, fund research sponsored by reputable organizations, like the Juvenile Diabetes Research Foundation.