While reading Leighann Calentine’s new book “Kids First, Diabetes Second” I was struck by the line in which she said that for her, she learned to cope with diabetes by taking back control. As a control freak, diabetes has taught me how much control I don’t have in life.
I have always been one of those people who like to plan ahead. Prior to diabetes, I could give you our ten-year financial plan, our plan for our next five summer vacations and more. It was all about planning and controlling the world around me. I do not like surprises. I read spoilers and flip to the end of the book to find out who did it.
Diabetes won’t always do what you predict
Diabetes has taught me that despite my best efforts, things do not always go as I want them to. There have been the active days that I swore would result in lows so I reduced the night time basal rate on my son’s insulin pump only to be chasing highs for the rest of the night. Why? Because the diabetes gods made it so! Okay or more likely there was air in his tubing, an infusion site that was going bad, a bolus calculating error…well you get the idea.
I have planned to enjoy a good night’s rest only to find my son’s tubing was dislodged during the night and he was up vomiting with ketones. I have equally planned on enjoying a night’s sleep only to be kept up with a low that we never saw coming.
We have planned for sleepovers that have ended because of highs that he could not get rid of on his own. There have been celebratory meals at McDonald’s at the end of swimming lessons that left us all exhausted because my son had such a bad low that it took us every low treat in my bag and half of someone else’s pop to bring him back up.
There have been days when I have been prepared for diabetes to send me its worst…only to have a wonderful day.
Diabetes keeps me on my toes. As Leighnann says, for the first year, my life was about trying to gain some sort of control of our lives. Our world became very regimented. I functioned. I kept my son alive. Meals were set.
Learning what you can and cannot control with diabetes
Living that first year by the clock and scale allowed me to function. It allowed our family to come to terms with life as a family of a child with type 1 diabetes.
Over time, I no longer allowed diabetes to completely control us. I baked again and learned the carb counts or carb factors of our favourite recipes. I figured out how to allow him different foods at snack times.
We ventured out of our safe zone. Diabetes still kept us (and keeps us) on our toes but it has taught me a lot about what I can control and what I can’t. It has also taught me what is important to control versus what is better left to happen when it happens.
Learning to live life for the now
Does diabetes control our lives now? No. Do I control our lives now? Heck no! I am now the mother of two teenaged sons, one of whom is heading off into the adult world in a matter of weeks.
All my carefully guarded control is flying out of the window faster than I can hold on. It’s not a bad thing…it just is. We all cringe when someone asks if your diabetes is “under control” but we also recognize that we do have to take back some control of our lives. We have to learn to live life with diabetes rather than living life for diabetes.
Oh boy…this hit home. I remember when Joe was three…and four…and five. I did not vary much in his diet in fear of dealing with the glucoaster. Now…as he has aged…and his blood sugars are a bit more forgiving…I tweak things a bit and live as spontaneously as possible with diabetes in our lives. Great post Barb.
Wow. I am not the parent of a child with diabetes – I am the person with diabetes in my own story. But your post really hit me. At the end of my adolescence, my very smart endo at the time told me that I needed to let go of some control to gain control. At some point I was able to see he was right. I am still struggling with this, and the balance of life vs. “the Diabetes” (love your picture!) is still hard to strike too often 30 some odd years later. Thanks for this!