15 May Liam and Maggie
I was eleven when I was diagnosed with type 1 diabetes. For the next 28 years I tested my blood glucose 5 to 6 times a day (approx. 51,000 times) and I took 4 to 5 insulin injections per day (approx. 41,000 injections). About 10 years ago I started wearing the Omnipod, a tubeless insulin pump that delivers insulin to my body 24 hrs/day. This eliminated the need for daily injections and allowed me to better adjust my insulin doses to match my ever-changing schedule and exercise routine. About 8 years ago I started wearing a continuous glucose monitor, a device that gives me a blood glucose reading every five minutes. This technology dramatically improved my ability to manage my disease, but it doesn’t change the psychological cost associated with living with T1D. Every day is riddled with decisions about how to adjust insulin doses based upon what am I eating, how active I am going to be today, my current stress level and what will be the timing of my meals. When you live with type 1 diabetes there is no cruise control or auto pilot. These decisions need to be made many times every single day just to stay alive. It wears you down and it never goes away or gives you a day off.
I was doing well, my control was excellent, the daily effort was always tiring, but I was happy that I was free of complications after 34 years of battling this relentless, chronic illness. Then in 2015 my world was rocked. In the spring of my daughter, Maggie’s, sophomore year of high school she was diagnosed with type 1 diabetes. My worst fear had been realized. I never wanted any of my daughters to have to deal with this relentless, life changing disease. The first couple of years for Maggie were relatively smooth. Her pancreas was still producing some insulin, so her body was helping her to maintain relatively normal blood glucose levels (known as the honeymoon period for newly diagnosed patients). Today, her pancreas is done producing insulin. Maggie is now dealing with the same challenges and daily struggles that I and every other type 1 diabetic deals with: high glucose levels that make you feel like you have the flu, low glucose levels that are scary and life threatening, and daily adjustments to your insulin doses based upon what you are eating and what you are doing. There are no days off and no breaks.
I know what it is like to live with T1D. It is difficult, even on the good days. Now I know what it is like to worry about my daughter having to deal with it every day as well. I don’t want Maggie to have to fight this daily battle. As a former camp counselor who saved a life or two by helping young boys learn how to better manage their disease, I witnessed the concern and fear parents experience on a daily basis. This disease is lethal. It will kill; or maim. I worry about Maggie in the same way. While technological advances give us more tools to help manage T1D, we still have to be our own pancreases, and have to deal with the constant fears and concerns (and reality that we just can’t do it as well as the real thing) that managing this awful disease entails. I don’t want Maggie to have this disease……but that isn’t our story.
I help Maggie as much as I can, but I can’t manage her disease for her. That falls squarely on her shoulders, just like it does for every other person living with T1D. I can give her daily advice, drawing on my 41 years of living with the T1D, but ultimately this is her battle. I know it is reassuring that she has me to offer advice, but I also know there are days when she doesn’t want to hear any of it! I understand that too, but I will fight the good fight with her as long as she needs me. I love you sweet Maggie!
T1Der, T1Der Dad
SLAMT1D Volunteer, Supporter and Board Member