It's Not Your Diabetes
A child taking responsibility for their disease early in life can make a huge difference.
By Tom Karlya
June 2008 — "It's not your diabetes."
I remember those words today as clearly as I first heard them probably over 14 years ago. At the time she first uttered those words to me, Mindy was an adult with a child of her own and she had lived with diabetes for 30 years. "Tom, this is going to piss you off but remember that this disease is not yours. Its Kaitlyn's and until you give it back to her, she will never thrive. Give it back to her and she will thrive in many areas more than just diabetes."
The conversation turned into a discussion that was perhaps a tad more ‘heated' than I would've wanted. What was she talking about that this was not ‘my' disease? It affects all of us, so it belongs to us all. Give it back to her? What?!! Like a final punch in the head, which would be the knock out blow, she closed the conversation with this: "One day, my parents were no longer around. I was left to care for my diabetes and had no clue what to do. I was fifteen and had diabetes for years but my parents did everything for me, and I let them. And in one instant, they were gone. Do yourself a favor and the best favor you can ever do for your daughter - give her back her diabetes. The more she does for herself and the sooner, the better off you will all be."
Not at that moment (because my own stupid pride and ego got in the way) but shortly thereafter, Mindy's words started to sink in. Her words hit the mark and started to take root right in my heart. Parents, it really isn't our disease. Take it from one who fought it at first. I'll say it again: It isn't our disease. Yes, we have to deal with it, we cry over it, and it frightens us to no end with the uncertainties it brings, but yet it is not ours. It's our child's disease to deal with, and the sooner the better.
The biggest problem with diabetes is that it is so different in each person and so different day to day. Those who have heard my lectures know that I have called it the "snowflake disease" for that reason. Because it's so different, each family has to deal with it pretty much alone, along with the guidance of their medical professional. But at the end of the day it‘ll be up to your child to deal with on a daily basis without Mommy and/or Daddy. A mother once said that because her child would have to be dealing with diabetes for the rest of their life, she would do for the child as long as she was able. The child was 14 and the mother was still giving her all the shots and testing her blood. Was the mom really doing the child any favors? I don't know what is "normal" or how it should be but the sooner your child takes control, the better. My friend Lisa has a saying: "The only place you'll find ‘normal' is on the dial of the dryer." How true.
There are others I know who "gave diabetes back to their child" at an early age and there also seems to be a small bonus, if I dare call it that at all. To those who really start to give diabetes back to their child, and I have absolutely no scientific proof of this whatsoever, the child seems to excel in many other areas of their life. Probably the one man who I respect most on this earth when it comes to diabetes (he would be annoyed if I told you who he was because he is not a ‘limelight' kind of personality but he is a GIANT in the field and knows a little bit about children, diabetes and websites) has a daughter who has lived with diabetes for almost her entire life. He and his wife spent Herculean amounts of time giving her the choices and letting her take control. Her diabetes is not only in control, but their daughter excelled in school and now well into her college life, she's heading to the medical profession. Since I have known this wonderful young lady, she has always been the first one to say "I'll do it, no problem." My guess is that someday she'll be the top in her field just like her wonderful parents.
Charlie’s 12-year anniversary with type 1 just passed and I still know nothing about this diabetes and why it hates us so much. As if to remind us that it was its anniversary, diabetes unleashed hell on Friday. Charlie was stranded well over 400 for hours and even tipped the scale at 580. Susanne pulled Charlie out of school and started what became a wartime exercise in futility. It was one of the worst blood sugar days we’ve had in years. ...