Meet Kelly and Ben: Living with Type 1 Diabetes Across Generations

To say that diabetes has impacted my life is an understatement. In 1984, at age 11, I was diagnosed with type 1 diabetes. I remember my doctor saying two things at the time: "You can still have children," and "Either you control it or it controls you, but you get to choose every day." The thing about kids was odd to me—I just wanted to eat my Halloween candy! But his words told me I could do anything. Right from the start, my parents put me in control. It did not always go well, especially as a teen. In those days I was on cow or pig insulin, and blood tests involved a giant drop of blood, wiping and waiting, and comparing to a color chart. The summer camp I had been going to only had one diabetic session with a wait list. Camp (YMCA) gave me so much more confidence I could do it on my own!

Looking back, I didn't realize the mental toll diabetes took on me. People not understanding and saying, "Ew," when I had to take a shot. Doctors telling me I must not be taking it seriously because if I just followed the diet and took my insulin, I would be fine. The embarrassment of having to leave class with a low blood sugar and being punished by teachers for missing things. No one to talk to who really understood. The natural teenage rebellion of not wanting to talk to my parents, including about diabetes. 

The only place I could be myself and be accepted was camp. I ended up working at the camp and met my husband there.

By my mid-twenties I had graduated college and was getting married. I went back to my old doctor to talk about kids. I was told I needed to be finished with having kids by 30 because of the risks and to find a good OB/GYN. At 26 years old I had my two wonderful boys and was working full time with a mortgage and a minivan. All seemed well until 2013. My oldest son, Ben, was diagnosed with type 1 diabetes at 17 years old. I noticed his thirst and tested his blood [glucose], which was 425, and off we went to the hospital.

So many things went through my mind. I was grateful he didn't go into DKA (diabetic ketoacidosis) before diagnosis. I was glad he had at least seen me test my blood and take shots a million times so that wasn't scary to him. His friends had seen the same at our house and knew what to expect and looked out for him. He already was dealing with some disabilities, so why couldn't this kid catch a break?! I thought about my own parents and how scared and powerless they must have felt—more than me since I lived with this disease. I thought about my much younger sister and how she was scared to take medicine after I got diagnosed because she had been afraid she would get it, and how I needed to think about my younger son.

The one thing I didn't feel was guilt. When having my kids, I knew there was a slightly higher chance of them getting it, but it was not the huge increase in risk most people might think. I remember my mother still to this day saying she felt guilty because her father had been a type 2 diabetic who had to take insulin and lost a leg. To this day there are no other type 1 diabetics in the family, just me and my son. To feel guilty to me felt like wishing he wasn't born. The world is a better place with him in it. Every person who spends time with him is better for it. This disease sucks so much away from us as individuals, as families, but to not have us here would be a loss. Insulin gives us life support so we can share our gifts.

The hardest thing now is that Ben is what many call a "brittle" diabetic. He has been in DKA dozens of times. It is NOT his fault and I work hard to make sure he understands that you can do everything right and still things go wrong, even when doctors can be cruel. So many things can impact blood sugar besides food and insulin. And sadly, while I have never been in DKA, he can go from normal 120 blood sugar to DKA in under two hours. It has happened multiple times. I would give anything for him to be cured, especially with his other challenges. 

Since 1984 I have heard "in five years there will be a cure," and like many it has become a joke. People often assume I wish I had never gotten this disease. Funny thing is, the answer is no. While I am exhausted by the number of decisions we have to make each day literally to stay alive and never get a moment of reprieve, I have been gifted part of who I am as well. I am confident, process quickly, problem-solve well, and am as resilient as anyone I have met. People say once I set my sights on something, I will not let anything get in my way. I think all of these things have been partially due to type 1 diabetes. But it is TIME. The technology and capability is here to cure us all and do away with this torture now and forever more. So now my sights are set on doing whatever I can do to find a cure as a diabetic, as the mother of a diabetic, and for everyone carrying this burden.