Snapshot of life without a fully functional pancreas (T1D)

The year we had Type One Diabetes (T1D) join the family is closing. 

These word prompts lend themselves to a description of our new life.

Treating low blood sugar events are a strange new part of life. 

It makes us laugh to think it’s normal that I wake my child at 4am and force him to eat some honey. 

I shudder to think of what must be happening to his teeth. 

And wonder what the effects of sleep deprivation are on a child’s development. I know its been terrible for getting schoolwork done.

If blood glucose levels drop too low for too long it is acutely dangerous.  We must keep monitoring and keep them up. We do our best to balance insulin, amount of carbs, exercise, and other factors so he doesn’t go too low. Some days, some weeks it works out. Other times we misjudge or for some unknown reason, it doesn’t balance. 

This is what a T1D person has to do every day. No days off. 

3min funny video on treating lows

Some people need to ration insulin, so thankful that is not us. 

We can eat watermelon or oatmeal or anything we like and dose insulin to cover it. We also use exercise and water to help. But if we weren’t able to use the right amount of insulin his levels would be too high for too long. This contributes to bad health in the future. 

“Keep the monitor reader near you!”

Some days feels like I’m always reminding our T1D child to carry the phone so it’s close enough for the low alarm to sound. 

On other days I try to do as much as I can, so he can be a child and not have to think about it. On one hand, we’re training him to look after himself, on the other hand, he is too young to have the burden all by himself.  One day it will be totally up to him.

My husband has spent the year embracing his role as a “Dadcreas” (Dad who tries to be a pancreas).

Our future is caregiving around the clock. I’m not feeling all of this at the moment, but it is helpful to read this, I’m too tired to work out how to express this myself: 

“HELLO, we are working around the clock over here to keep my daughter ALIVE. By ourselves. With no medical degrees. With no daily help from a doctor. WE decide how much life-saving medicine to give her all day, every day. And by the way, too much of this said life-saving medicine could KILL her! Try to wrap your head around that!” But then people look at her and see this vibrant, healthy-looking girl and they think I’m exaggerating, or worse, using my child’s illness to get attention. 

This quote is from a website I've been enjoying and learning from this year called Beyond Type 1. The Isolated Caregiver was written by Stephanie Prince Alexander

 Thanks for reading and head over to A Chronic Voice to see what others have written for these prompts.