Thursday, August 5, 2010


Most days with Diabetes we just do what we have to do without much thought. Poke tiny calloused fingers. Dab blood onto tiny strips. Count carbs. Dose insulin. Recheck. Correct. Treat lows. Treat highs. Move on. Its just routine in our lives with Diabetes. Most days Diabetes doesn't bring much thought or emotions. But, we all know about the "bad" days or difficult spells when nothing seems to turn out right. Highs. Lows. Ketones. And then you step back and realize....ME, this is all up to ME.

Diabetes has to be one of the few diseases that are entirely self managed. Parents make the adjustments to insulin doses without any medical advice. (once you are comfortable) We manage exercise, food, growth spurts, illness. We make the call. Me as the parent, I know best what adjustments need to be made. It comes with experience. Time. Knowing every detail of your child's day. Parents with Diabetic kids are keeping our children healthy. ALIVE. We are their future of health. Yet all we can do is our best.

ME. Its all up to ME.

Leaving work yesterday I mentioned to a co-worker that I was stressed for school to start Monday. "Oh but Maddison's older now and can take care of herself" she says. "Maddison will get herself figured out for the new school year, you shouldn't worry" she says.

I just wanted to scream.

Outsiders don't know. They don't know that Monday morning when school starts Diabetes as we have known it all summer will change. Insulin doses are likely to double. Why? I dont know for sure, but it never fails to amaze me. Its not sending Maddison off to school that is the worry. I know she can care for herself with guidance from the nurse. Its not that.

The stress is, its up to ME to figure out where to adjust insulin dosing for out of range numbers. Starting Monday with the return to school, Diabetes will be WILD. UNPREDICTABLE. It never fails. Do you know 300's and 400's are not uncommon in our children? Most people would be SHOCKED to know that sometimes Diabetes inflicts these kinds of numbers. Sometimes, it takes weeks to figure it out. Technology has brought insulin pumps. Insulin pumps can provide superior blood sugar control if WE as parents get the doses right. With an insulin pump we manage insulin dosing by the hour. Thats alot of mind work to get each hour right.

So where to start with adjustments when every blood sugar pops up wrong? 6am? 7am? Noon? Basal? Bolus? Correction factor? If you dont get morning doses right the entire day is likely to be a mess. And that hurts my child. It hurts her body. It hurts her mind. It hurts ME.

Me. Its all up to me. Now what the hell is the problem after lunch? Is it a wrong carb count? Zooming around on the playground? The AZ heat? Basal? Bolus? Is she going through a growth spurt so conveniently as the first day of school starts? Bad site? Should we stop using her arms and move to her tummy? Stress? Anxiety? What is causing these crazy numbers?

I'm stressed out when Maddison's blood sugars go wild at school. I'd be lying if I pretended I just adjust insulin doses and move on without worry or concern. Wild blood sugars happen. They WILL happen on Monday as school resumes, they always do. Maybe Maddison will be sitting at school all day high. Highs hurt her body. Highs keep her feeling ICKY. Headaches. Thirst. Tummy aches. Highs keep Maddison from cognitively being herself. She misses out on class time when going to the nurse. Missing out on class time means Maddison is missing her education. It is a dominoe affect, and its all up to ME to get her numbers under control.

Maybe this year Maddison will start back to school with lows. Her little heart palpitates. She's confused. She can't walk without her legs feeling like jello. She is sweaty. She is pale. She feels the life being sucked out of her.

ME....Diabetes is all managed by me, and it hurts my heart when I don't get it adjusted just right.

One messed up day turns into 3. I do everything I can to track numbers. Logging every detail of her day. I change this. I change that. Sometimes you make it WORSE. Sometimes you cause serious lows. Or serious highs. What you adjusted wasn't right....or, maybe today is just different than yesterday. How was I to know? 3 days of chasing numbers turns into a week. A month. Sometimes it takes weeks or months to adjust insulin doses just right. And then, after what was hopefully a nice long spell of "control" it all changes. And we start over.

ME. Its all up to me, and sometimes I despise that. Where is our freaking cure anyway?

I know in my mind all I can do is my best. I know in my mind that its not my "fault" when nothing works out right. I know in my mind I shouldn't stress over the low I "caused" or the highs that haunt all day. But my HEART feels differently. My heart hurts for every wrong number. My heart is angry when I can't get it right. Id be lying if I said it didn't affect me right down to the core. I know myself what that low feels like. I know how that high day makes you feel. I know what 32 years of crazy blood sugars can do to a person. I lived it as a child with my Dad. Faced my own diagnosis. Watched my father suffer for years, and die in my arms because Diabetes is a SICK unpredictable disease. Maybe that's why every number hurts my heart. Maybe that's why I stress.

ME. Its all up to me. I keep my child healthy. I keep her from highs. I keep her from lows. Or, at least I try my best. All I can do is my best. I know that. But, sometimes like now when I am faced with back to school craziness I start to worry again. I feel the pressure to "get it right" and can only HOPE it all falls into place quickly. Without hurting her along the way.


Dana said...

Kelly, I just read your post today and it brought me to tears because you put down in words exactly how I feel everyday managing my son's diabetes. From the minute he was diagnosed, I felt an incredible amount of stress that does not every seem to go away because I too feel that the pressure is on ME to make sure he is o.k. He can only count on ME and his father to keep him safe and I worry that I will make mistakes that he’ll pay for in the future. You’re so right when you say people don’t understand … and I guess I can’t expect them … when they don’t live in this crazy world of diabetes. It was very comforting to read your post and know that you too feel the same and that I’m not in this alone. I too get little angry waiting for the cure because I feel these kids deserve so much more. Thanks for sharing your thoughts. You’ve got me as a follower now … that’s for sure.

Hallie said...

I hear ya! D just sucks. I, too, know with my head that I do my best to fight the highs and lows. And yet.... I still live and die with the numbers. A good number can make my day and a not so good number is like a knife in the heart. Because I know what we're playing with here - it's not numbers on a screen. It's a life. It's my precious child's life. How can I not feel that way? I'm dreading going back to school, too. I hope it goes smoothly for you! I will be sending lots of prayers and good thoughts your way!