I find with Type 1 Diabetes that the more my son lives with this disease the more I realize how little I really know.
In the beginning, almost 4 1/2 years ago, I knew nothing, but didn’t realize how little I really knew. I knew I’d have to learn about diabetes. I knew all the stuff that came along with a new diagnosis was going to be a huge learning curve, but, as they say ignorance is bliss, and because even in the midst of all this ‘newness’ I still felt like I had a grasp on things.
I felt that testing 4-6 times a day was adequate and that skipping the over night testing was okay to do. I felt that there was really nothing I could do about the post meal spike and as long as he was in range for the next meal than I was doing okay. I figured I could count his carbs by reading labels and giving him single serving packs of everything he ate. Yes, I was broken hearted by this diagnosis. Yes, I stayed up all night after getting home from the hospital reading anything I could on how to keep my son alive. But I still felt like I knew enough that I could do this and we would be fine. This lasted about 1 month.
In hindsight this belief of ‘we are going to be okay’ must be some cosmic way of handing this disease to us in small doses. If I had known then what I know now I would have certainly crawled up into a ball and never reemerged into society. From the get go we are given just enough information to keep our child alive when leaving the hospital. There’s no talk of what highs do to the body, what lows can do to the brain, dead in the bed syndrome…none of this. It’s all about making sure your kid can eat and stay alive. Very basic, yet very necessary, information.
It’s not until you delve a little deeper into this disgusting disease that you realize the amount of knowledge you can have is never ending. Never ending. Never. I am still learning everyday even after 4 1/2 years (get that 1/2 in).
About 1 month into my son’s diagnosis I found www.type1parents.org. My intention of seeking out an internet support group was because I felt so utterly alone that I was getting scared. Scared for my well being. I was not yet scared for my son. Yet. I had no one to talk to at 2:00am when a question popped up. I needed answers about being a parent to a child with Type 1 diabetes. Little did I know I would learn the answers to so many questions that I had no idea that I should be asking.
I learned about I:C ratio. That’s when you given insulin based on the amount of food you eat. This is different than the sliding scale that gives insulin and then you eat a set amount of carbs, the method that we were on at the time.
I learned that Lantus (the basal shot) does indeed peak, and does not work for all people for the full 24 hours. Made me start researching a pump.
I learned carb factor. How to weigh all foods without worrying about serving size.
I learned that 100 before breakfast is good, 100 3 hours later is good, BUT I still needed to see what was going on between that time. 4-6 tests a day was not going to cut it.
I learned so much it would take me days to write.
After 4 1/2 years I am appreciative of the way my knowledge has grown. Slow and steady. Bits and pieces. One chunk would have been overwhelming, scary, nauseating, and very defeating. I am grateful for how little I knew then, how much I know now, and look forward to what I will know tomorrow. The more I know the more I can do for my son, and doing for my son is what it’s all about.