As a caregiver, it's hard to even think about diabetes and Grace without my head swirling with emotions. And they are not easy emotions, they are the hard ones. And no one ever tells you this as a caregiver. That your life will not only be bolusing, adjusting basals and insurance nightmares, but there will be crying jags and anger. They should really tell us that.
There are times when I think I glide through it all. I don't feel much, just go through the motions of doing. And I think I am fine. I can bolus via the PDM with my eyes closed, knowing how many button pushes I must make to get to a temp basal rate, scroll up through the percentages, to arrive at an 80% increased temp basal for one hour. It's 26.
Then, like water that is heated, it eventually comes to a boil. And it's usually triggered by something I can't seem to control. I can't get the damn high BG down. I can't get the damn low BG up. I can't figure out if the insulin has gone skunky. I am denied what she needs through her insurance. And the water boils. I am angry. Angry at having this damn disease in our lives, angry at having to do do do do do all this. Angry at how much time this disease sucks away from doing other things.
The water boils when I think about complications. Even with the best of care, and the best of conditions, I know what diabetes long term can do. I read the data. I talk with doctors. The tight control is good for avoiding complications, but we all will lose the bet some time. Our bodies are not designed for the pancreas run by humans. We get it wrong. We make errors. We burn out. And it all has consequences. Every thing does.
And that makes me sad. I think about Grace and her life being shortened by diabetes and I am filled with sorrow for what she might miss. The moments are fleeting when they come, but they do come. It's human to think about the end of our lives. And it's so unsettling to even begin to think about the end of your child's life. I shut it out when it comes, allowing it to open the door to peek at me, then I slam it shut.
My brain is often at capacity for all things diabetes. And as I write those words, I imagine that my 13 year old's brain is full too. Always thinking, calculating, always on. I can step away, not think about it. And my child can't.
To think it's all bad is to only see one side of the coin. The other side is emotional connection and the feelings of being at home with people who understand. That is what gets me through. I have other moms and dads who share these emotions. I have a network of caregivers to reach out to when the storms hit.