Diabetes Day: Today and Everyday

Today is World Diabetes Day - November 14, 2009.  Today is the day that even the United Nations would like people to think about what is it like to live with diabetes.  To ponder what it means that nearly 7 million people are diagnosed with diabetes every year and that this number is rising.  Maybe people will even pause long enough to consider the cost of diabetes on the world health system.

I do not need the United Nations or the International Diabetes Federation to remind me that today happens to be Diabetes Day.  In my life, every day is diabetes day.  I am the mother of a type 1 diabetic.  Nearly two years ago, my oldest daughter, Elle, was diagnosed and the roller coaster that is life with this chronic illness began.  I will help the International Diabetes Federation by reminding or explaining that diabetes is the daily struggle to manipulate insulin injections, blood sugar testing, meals and exercise.  Elle tests her blood sugar by pricking her finger with a needle between 8-10 times a day while I help her count carbohydrates at meals and snack times along with facilitating exercise and I worry.  Oh how I worry.  Every day we strive for the elusive goal of maintaining healthy blood sugars and we work like hell to avoid the devastation a low blood sugar can cause.  To learn more about what it means to live with diabetes watch this video of a day in my daughter's life.

On this day devoted to raising global awareness about diabetes, I thought it would be helpful to post one simple example of how diabetes complicates everything for families living with this disease - even the joy of a childhood sleepover.  Elle recently spent a rare night at a friend's house.  That night, I awoke in a panic and wrote this post.  You can also find it on my blog at goodmeasures.com/blog:

I just had a horrifying dream. Normally when this happens I am convinced it is my motherly instinct kicking in and it must mean that Elle is experiencing a low blood sugar.  For my own peace of mind and in an effort to fall back to sleep, I usually stumble up the stairs and feel around in the dark for Elle's test kit then I proceed to PRICK one of my daughter's LITTLE CALLOUSED FINGERS.  As mother of a child with Type 1 Diabetes, managing this disease means drawing my own child's blood so that I can sleep at night.  Unfortunately for me (not for her fingers) in the wee hours of this morning Elle is not home.  For the first time in months we allowed her to go to her friends house for a sleepover.  I HATE SLEEPOVERS!

Now I am lying here in bed with a cold sweat writing this post in hopes that I will talk myself out of calling Elle's friends home at 2:00am and scaring everyone half to death.  So I am going to remind myself by typing it here that I spoke to Elle at 9:30pm and she had just tested herself.  Her blood sugar was 168 which is slightly higher than we would like, but not too high.  She was eating popcorn with her friends and had just administered enough insulin to cover 20g of carbohydrates.  She did everything right.  So she is going to be okay...right?  But here I am lying in the darkness and that same lonely silence I remember from when Elle was a baby and would wake me to eat, but tonight I can hear my heart pounding and I have a terrible pit in my stomach.

This is where diabetes plays tricks on me as a mother because I know that even when we do everything right things can and do go wrong.  SEIZURES happen.  Elle has had a SEIZURE.  What would you do?  Would you call the friend's mother at 2:00am knowing that even when I call it would be extremely difficult for her to test Elle in the middle of the night?  She would be forced to wake Elle up to test herself, but as a mother she would understand that I woke her from what is probably a delightful slumber...right? Should I call and let her friend's mother know that we are concerned and ask her just to go check on Elle knowing full well that checking on Elle means nothing unless her blood sugar is tested because you cannot tell anything by simply looking at her sleep.  I just woke my husband up and he offered to drive over to the friend's house to test her, but this would absolutely positively humiliate Elle.  The last thing I want to do is embarrass her, but safety trumps humiliation any day right?

Is this about Elle's safety or is it my own paranoia?  I am afraid that diabetes has kicked my mother's instinct into overdrive.  It could be that I had a bad dream precisely because Elle is not at home tonight and this just has me especially worried and unsettled.  Is my own peace of mind and a few hours of sleep worth embarrassing my daughter when I know she is approaching an age where a desperation to "fit in" takes over?  She already feels different enough by  the shear fact that she PRICKS her own CALLOUSED FINGERS 8-10 times a days, wears an insulin pump and has to count carbohydrates.  But then you ask yourself again, is this about my own peace of mind or Elle's physical safety?  How do I know?  How will I ever know?

One thing I do know is that at some point in my life, when I am not in chronic emergency response mode, I will have to deal with  the fact that my daughter is living a life that makes it impossible for me as her mother to celebrate the quintessential childhood experience of sleepovers. I will never feel the carefree joy that my mother did of watching my child pack her favorite stuffed animal or her American Girl doll, sleeping bag and pillow.  Tonight as Elle was packing her toothbrush and pajamas, I was packing her glucagon pen, extra snack packs of Skittles, test kit and test strips and all I could feel was DREAD.  Next time I am going to insist that Elle's friends sleep at our house even if it means that she will be forced to tolerate her younger sisters and brother.

As World Diabetes Day is dawning, you might consider the fact that two people get diagnosed with diabetes every 10 seconds or that nearly 300 million people are living with this disease.  I know that the International Diabetes Federation and the United Nations would like people to tune in to the warning signs and gain a better understanding of what diabetes is all about.  But on this day, I wanted you to hear how diabetes impacts life's simple pleasures because for my family - every day is diabetes day.