Composed on my cell phone at 3:26 a.m. Today is the last day of National Diabetes Awareness Month.
We’re the parents. We’re tired.
Tired of chasing toddlers around the house with insulin shots in hand.
Tired of pleading with, worrying over, and screaming at our irresponsible teenagers who just want to be “normal” kids.
Tired of our child’s anguish over it – why did this happen to me? It’s not fair. I just want to eat when I want. I don’t want to test. I hate diabetes. I hate my life.
We’re tired of not sleeping. Tired of the constant worry that the outside world seldom sees.
Many of us are on medication. Some of us self-medicate with alcohol, a little too much.
We’re tired. Tired of having outsiders question us when we’re pushing our kid to finish all their food, because they don’t know or understand that she’s just bolused six units of insulin and will have a serious low if she doesn’t.
Tired of explaining Type 1 diabetes to the uninitiated. Tired of sharing information, and trying to make the world see – at least one month out of every year – how serious this disease is, how deadly, and how it is NOT Type 2 diabetes like your grandma has.
Tired of insensitive people sharing how little they understand by comparing our child’s diabetes to that of a cat they once had, or worse – telling us about a friend’s husband who died when his blood sugar dropped to 17 and there was no one to save him. In front of our child.
We’re tired. Tired of explaining that a blood sugar under 60 is a serious medical emergency that cannot be ignored, postponed, or treated lightly.
Tired of lying awake in the middle of the night, our child’s blood sugars well over 300, worried about ketones and not being able to forget the image we saw earlier of a beautiful young girl who died because of a kink in her insulin pump line.
Tired of watching the cost of life support rise to ridiculous prices, and scared to death that one day our child might not be able to afford their insulin. Tired of wondering why there’s a copay for this life-sustaining medicine, but not for the test strips to monitor blood sugars. Tired of fighting with insurance companies, who don’t work for us, over all the supplies we need to keep our child alive.
Tired of worrying about every birthday party, every field trip, every excursion our child takes, away from our ever-watchful eyes. Worried that they’re remembering to check their blood sugars before turning the key in the ignition.
Tired of worrying over the quarterly finger-stick report card we call an A1c, that tells us how well we’re managing the rollercoaster. Worrying over annual blood tests – which remind us of other worries like high cholesterol and heart disease, kidney disease, and the higher risk of secondary disease that walk hand-in-hand with diabetes, like Celiac’s and thyroid disease. Worrying over every annual eye exam, and praying there are no changes.
We’re tired of worrying and thinking about how our child is going to do this on their own someday. How we’re going to sleep at night when they’re no longer living with us.
We’re tired of hearing of new diagnoses. We’re tired of hearing of one more child who died from undiagnosed Type 1 diabetes, because their parents didn’t know the signs.
We’re tired of all the fundraising, and the promises of the ever-elusive Cure. Sometimes, we’re tired of hoping. Sometimes, we’re tired of praying.
We’re the parents, and we’re tired.