Confessions of a Control Freak who has fought Diabetes

I have been lucky enough to get a copy of Leighann Calentine’s new book “Kids First, Diabetes Second“.  I am almost through reading the book and so far am very impressed but I will tell you all about it later. What sent me off to my computer was a line in which she said that for her, she learned to cope with diabetes by taking back control. 

When I finished reading the section in question, I agreed with her whole heartedly but being me, my mind immediately moved off onto another tangent with those few words.  I have always said that diabetes taught me how much control I don’t have.

I am one of those people who likes 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 the planning and controlling the world around me.  Larry would argue that I am still like that and in some ways I am but in a lot more ways, I am not.

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 his night time basal rate 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, a 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 is 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 food in my bag and half of someone else’s pop to bring 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.  There was no variation but over time, I took some of that control back.  I baked again.  I allowed 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.

My version what the Diabetes looks like!

Does diabetes control our lives now? No. Do I control our lives now? Heck no! I am now the mother of two teen aged sons, one who 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. Its 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 and work to live with diabetes rather than living all about diabetes.

Does Diabetes Control my life?

The other night, as I was stumbling around in the hall trying to find the knob to my son’s door and check his blood sugar level, I thought to myself “Diabetes controls my life.” As I began to wake a little more fully I began to wonder about that statement. Did diabetes truly control my life? Had I allowed it to do this? Was it an excuse or was it the reality of living with a  child with a chronic disease?

I asked people on my Facebook page what they thought. Did diabetes control their lives? One of the answers I received was “Anyone that has Type 1 that says that diabetes does not control their life, probably has an A1c of 10+.  Unfortunately to have consistent and healthy blood glucose, it has to control a portion of what you do, it does not have to define you and let it impact your overall lifestyle.”

Diabetes definitely controls a portion of what I do. It wakes me up at night. It keeps me up at night. It has changed how I look at food. It makes me gave me something new to associate the “Band Aid” smell with.  It has changed many of my thoughts and actions.

My son’s A1c has, to date, been under 10 so maybe I was safe. Maybe diabetes did control my life and that was not a completely bad thing but what is “control”? How do you define “control” over your life? I turned to Google for the answer. According to and Merriam-Webster, control can be defined as “to exercise a restraining or directing influence over.”

Diabetes definitely has redirected my life.  I have two sons. I have a Bachelor of Arts degree and spent several years prior to children working in the finance industry.  My life plan prior to March 17, 2000 had been to go back to work when my youngest son started school.  That plan was completely derailed. 

I had always been vocal when I saw social injustice but diabetes sent me to an entirely new level.  It caused me to fight all levels of government, learn about various social policies and as well as see many social inequities. 

Diabetes has redirected our travel more than once.  Our first trip to New York included a side trip to a diabetes family beach party.  Our last trip across Canada included stops at the homes of friends who also lived with diabetes. Each year diabetes sends me to the Canadian Friends for Life Conference and it keeps me planning to go back to the Orlando FFL one day.

So had I allowed diabetes to control my life? Did I let it have a “directing influence” in my life? I guess I have.  Part of me will say that I had no choice, I had to stay with my son. I had to fight for our tax credit. I had to expand my social network to find others who lived in our shoes.  Part of me would be right but many people have taken a different route.  Many parents have made different choices.  My choice was to let diabetes become a very large part of my life.  My choice was to try to change that little piece of the world…to make it better. Maybe diabetes controlling my life isn’t the worst thing that could have happened to me but I still wish it hadn’t come knocking on my son’s door.