A lovely D-Mom updated her facebook profile recently with a few lines that broke my heart. I won’t quote her verbatim, but in general, what she was saying was that her young daughter was terrified to go to sleep, because she was afraid diabetes would take her life while she slept.
It stopped me cold. So did another post I saw the next day, with a newspaper story about a mom saying her child felt the very same way. What the heck, I thought, is going on? Why are children now so afraid of diabetes and sleep?
And then I thought way, way back to Lauren’s first few years of diabetes. Back then, the whole “Dead in bed” syndrome thing wasn’t being reported left and right; most, if not all endos were ensuring parents the could check their children at the parent’s bedtime and in the morning and only do middle of the night checks from time to time. We didn’t know people who had died of lows in their sleep, and there was no speedy internet to spread the notion.
But I, somehow, had developed a deep and almost irrational (I now realize) fear of ketones. Ketones, for anyone who does not know it, are the byproduct of the body burning extra muscle and fat for energy. When a person with diabetes does not have enough insulin to convert carbs to energy, the body goes hunting for it. And since the body can only process a small about of the acid-like ketones at a time, a person without enough insulin can develop some serious symptoms from too many ketones. Eventually, they can poison you. And my daughter seemed to get ketones at the drop of the name.
So that became my deep rooted fear: ketones were going to kill her. Now, my rational mind could say out loud that I knew, and knew well, that ketones would never immediately kill a person; that they’d have to hang around in a body a good 24 hours or longer before they’d put you in a coma or kill you. But I was just so very afraid of them. I checked for them more than almost anyone I knew; I obsessed over them and studied how to avoid them.
Then one night, as I was putting my little girl to bed, I realized I’d done as much harm to her mind with my fear as diabetes could do to her body. “Mommy,” she said, in her sweet-calm, little-girl voice. “Am I going to die in my sleep?”
“No, silly! I thought we’d gotten over that whole snake-under-the-bed thing,” I said, trying to tickle her to distract her.
“Not snakes, mom. Ketones. Are ketones gonna kill me?”
I stopped cold. How would my little, innocent girl even think such a thing? What kind of madness would put such fear into her head?
I knew the answer: It was me. Because while I may have thought I was doing my best to protect her, my over-the-top fear was actually hurting her.
I flipped open the yellow pages and found two counselors the very next day. One for her. One for me. Because clearly, something had to change.
I realized right away that while I thought I was saying “Let’s check for ketones” like this:
I was actually saying it like this:
Every time I said the word, my daughter saw fear on my face, the very face she looked to for reassurance, love and yes, peace.
I know it’s hard for parents today with all the talk about lows, but I honestly believe that it is our duty to protect our little ones from such frightening possibilities, and I don’t mean just by checking blood sugars. I mean by finding a way to not make that fear rule your nights and your days.
You know, we absolutely put seatbelts on our children when we put them in the car, right? Because it’s safe. Because it’s the law. But mostly because every single day, children die in car crashes. But when we strap them in, we usually just sing a jingle or simply say “Buckle up.” We don’t say “There’s a chance you could be killed in a crash so I have to do this.” Nor do we say to friends when the kids are not listening (or we hope they are not) “Every time I put her in a car I wonder: will today be the day she is killed in a car crash?” We know that cars are dangerous at times, but we don’t scare our children by sharing that. We just tell them kids wear seatbelts. Period. Could blood sugar checks become kind of the same? Not easy to do, but yes, possible.
I think it’s okay to white lie a little too. When Lauren was tiny, she was afraid of two things: Snakes under her bed, and tornadoes coming to our town. The snake thing was easy to solve (well, until a relative tried keeping her daughter on our deck one night by yelling “There are snakes all over the yard! Don’t leave the deck!” Yeah, thanks for that). But we did make that one go away. And the tornado? We live in the northeast, on the coast, where maybe, perhaps, there is the tiniest chance of a tornado in our lifetime. So I said to my daughter “I promise you. Tornadoes don’t come here.” I mean, it’s pretty much the truth (Even though her second grade teacher corrected her and made a point of finding documentation of a tornado in our town once. Yeah, thanks for that too). But when it came down to it: why would my small child need to know there was indeed a tiny chance a tornado could come here? And to the same point, why would she need to know that untended ketones might hurt her? She was a child. She didn’t need to know.
Which is why I really think it was okay to say there would not be a tornado. And not to say she might be killed in a car crash.So I had to learn to accept ketones and the chance of them, and find a way to conquer my own fear so I could help her conquer hers and live a normal life.
If your child is afraid to sleep because of fear of lows, I suggest you need to do the same. Get counseling for you and for her or him. Work out your own fears and find a way to live well even if there is some possible danger around the corner. It’s not easy. And to be honest with you, ketone is still one of my least favorite words. I struggle at times, but I’ve learned to try to have faith in our power to battle diabetes, in my daughter’s smarts and in the truth that it doesn’t help to panic.
But by accepting that I was causing distress in my child’s life and working on moving past it so she could, I think I made her life happier, her nights more peaceful and things just plain better. The reality is, whether we parents like it or not, we have to raise our kids with diabetes to be strong, smart, brave and somehow, able to rise above what “might be” so they can live happy lives.
No small task. But who said raising a child with diabetes ever was?
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