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.

Really now…what other chronic illness can say that?

Type 1 diabetes can make you have low blood sugar when you are not feeling well. If my son is about to get a stomach bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of lows before he actually came down with the illness.

Type 1 diabetes can make you have high blood sugar when you are not feeling well. If my son is about to get a fever and sore throat bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of highs before he actually came down with the illness.

Type 1 diabetes can make you have low blood sugar when you are active in sports. When my son swims all summer at the pool and beach his sugar will drop. Drop. We have to give lots of carb snacks throughout the day to keep him nice and even so he can swim the day away.

Type 1 diabetes can make you have high blood sugar when you are active in sports. When my son used to play soccer, for that very brief moment in time, his sugar used to run really high, like in the 400s, for a few hours after he actually played. Corrections would drop him like a brick because it was all adrenaline.

Stress can drop my son’s sugars really low. If he is worried about spending time away from me for too long we have to cut his basal a bit so his sugar doesn’t drop too low.

Stress can push my son’s sugars really high. If he is worried about taking a standardized test in school his sugar will skyrocket. 400s are not uncommon when a test is on the horizon. We have to tread lightly with these types of highs because as soon as the test is done, the number seems to drop.

Type 1 diabetes makes my son’s sugar drop when the weather is too warm. We have to lower basals a bit when we are about to hit a big warm spell, and make sure we have lots of glucose drinks for the longs summer days.

Type 1 diabetes makes my son’s sugar rise when the weather is cold. We have to raise the basals and give corrections throughout the day to keep his sugar in range. Unless of course he is playing in the snow. See swimming above.

Type 1 diabetes makes my son’s sugar rise when the school year starts. I have many sleepless nights whenever we go back to school because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Type 1 diabetes makes my son’s sugar drop when we are on school breaks. I have many sleepless nights whenever we go on break because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Yeah. See where I’m going with this? Diabetes…the great overachiever.

It does it all. No illness, sport, stressful event, standardized test, season, school year, or school break can be free of Type 1 diabetes. It is always there, showing off. Puffing out it’s chest making sure we know he is the ultimate eager beaver.

I was never a fan of the overachiever, so diabetes isn’t impressing anyone.

…when a person dies of Type 1 diabetes. Understandably, to the family and friend of the person who died that question may not matter. All they know is their father, mother, daughter, son, friend or other family member has died and they are left to pick up the pieces. But to an outsider, an outsider with a young son living with Type 1 diabetes, that question is of the utmost importance. It is important so that I can know what to do or not do to keep my son alive. I do everything I can to keep him alive.

I check his sugar 10 times a day including while he sleeps.

I review his numbers on a daily basis to make sure the settings in his pump are right.

I maintain all his supplies to make sure he always has enough.

I check his equipment (pump, meter) to make sure they work and have full batteries.

I weigh his food to keep his number as close to range as possible.

I treat every low with respect and treat immediately.

But what if that’s not enough?

And I’m sure the people that die from Type 1 diabetes thought they were doing enough. I’m sure their families trusted that when they were going to bed at night, that all was well, and they would indeed wake up the next day. Instead they die.

See, death from Type 1 diabetes is not a one shot deal. You don’t die from Type 1 diabetes. You die from a low blood sugar. Or lots of high blood sugars. Or DKA. You die from pumps not working. Or settings being completely off. You die from too much insulin being given. Or not enough insulin.

As a mom of a son with Type 1 the ‘hows’ and ‘whys’ are important. If the person died from a pump failure, dead pump, then I know to be more vigilant in checking my son’s pump. If the person died from a low in their sleep than that just makes me all the more positive that checking in the middle of the night is the right thing to do. If a person died from high blood sugar from not checking his sugar, then I need to remember that when my heart aches because I am poking my son’s finger again that it IS the right the to do. It might just be so right that it’s the thing that keeps him alive and with me one more day.

I think of my son dying every single day. In fact, it’s the very first thought that pops into my head when I wake up in the morning. Except of course, the mornings where he crawled into bed with me and I can feel him breathing. Those are good mornings. But if he’s not in my bed, my first thought is…well, you get what my first thought is. Even though I think it, I can’t seem to write it.

So, it is with no disrespect that I inquire of the ‘hows’ and ‘whys’ of the death of someone with Type 1. No disrespect at all. It is just the curiosity of a mom who works everyday to keep her son alive for just one more day.