Fear in the night: In our case, it came from my face

February 21, 2012By 16 Comments

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:

"Ketones, sweetie? Let me just whip you up a little insulin! Lalala."

I was actually saying it like this:

"Ketonessssss!!!!!! Helllpppppppp! Aaaaaaaaaaaaiiiiiiieeeeeeee nooooooo"

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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Comments (16)

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  1. Katie says:

    Yes! My immediate thoughts exactly. We don’t tell them all the time that they might die in a car crash, even though MANY MORE children die in auto accidents, every year, than are found dead in bed from diabetes related causes. People let their sons play football in high school, without constantly talking about the few who die every year from head injuries doing that very thing. We let our children swim, with supervision, and we have backyard pools (some of us, not me) although many many children drown in them.

    These fears are coming from the parents’ fears. And I think perhaps our endos did us a great service by reassuring us that such things as death from lows were very uncommon in children. Although, more common once they start using alcohol, as the endo made VERY sure to warn my son.

    I have seen, over the past 18+ years, a tendency for many many posts about diabetes to be fear-based, in fact, terror-based. And I often wonder what is happening to the children who live with those terrified parents.

    Thanks so much for your very honest blog, Moira.

  2. Robin says:

    Another great post! That hits way too close to home for me. I sure hope I’m projecting all the blood sugar tests as a safey belt like procedure. It is just something we do. I hope I’m not scaring the bejeebies out of her. I hope I’m doing a good job handling and hiding my fears. I hope…..

  3. Rachael says:

    So I will admit I am one of those crazy parents.. scared to death.. scared every single night.. scared to the point that I have anxiety attacks… I cant get over my fear that my child can die in bed.. I have my alarm set to go off at 12am 3am and then at 6am.. lets say I snooze through the 3am check.. I jump out of bed with nothing but anxiety and complete fear.. I have never expressed this fear infront of my son he is 7 I dont think he senses my fear.. he doesnt even know I am checking at night..
    I would love to sleep at night..
    Yes I have a fear issue..

    • moiracmcc says:

      awww Rachael — it IS scary. Hugs. But think about finding a way to live better with it — I don’t want you to end up with high blood pressure — your son needs you. I’m so glad I got some advice and help

      • Rachael says:

        thanks Moira!!
        I honestly can say I have never caught a low that would scare me.. (its what I have read that makes me crazy the internet can be helpful yet crippling) I make sure he goes to bed at a good number and all night he stays ok.. Its this obsessive fear.. the what if’s.. I would never ever be able to accept the fact that this happen dead in bed and I could have prevented it… Im not sure how he’s going to feel about me checking his sugar in the middle of the night when he’s 30 and married lol someday my fear will be less.. but for now.. not so much

  4. RonG says:

    Every parent should read this…fears can be given even if diabetes isn’t.

  5. Judith says:

    At the risk of being attacked for heresy, I will say that obsessive
    efforts to attempt to keep the blood sugars of a child with diabetes in a “normal”, non-diabetic range are doomed to fail, and only increase the fears of both parent and child. They likely also increase the small risk of “dead in bed”, since most of those tragedies are apparently the result of lows rather than highs.

    • Robyn Morgen says:

      Judith I think you are correct. My son recently broke his neck in a sports injury and we must keep the numbers very tight otherwise the bone will be slow to heal, and we have never had so many over night lows. Last night we were 42 and thank goodness he felt it.
      We tested at 2 and he was fine a good number 132 then at 5 he woke up yelling for us, he can not move with the brace, and said he felt low,,,42 nothing was on board except normal basal …

    • Katie says:

      It seems that some endos and pediatric practices are encouraging parents to strive for normal at all times. I don’t understand the thinking. And also, we used to be told that lows would be resolved, eventually, by glycogen in the liver, UNLESS the person with diabetes had been drinking, and that highs were more dangerous. (Moira was right, because of ketones, in the end) I think they just need to do more research. Meanwhile, parents have all this information, from all these “authorities”, a other parents, and people who claim to have kept their BG between 80 and 120 for years, with type 1… so you can’t blame them for believing they should try for that.
      I’ve only known three people in my real-life circle of friends who have awa
      ked to find a teen or young adult dead in bed. Two had epilepsy and the third had had rheumatic fever as a child. None from diabetes.

  6. Hallie says:

    I think this is my biggest fear. Not lows- the scaring her or making her resent diabetes due to my actions. I would bet that Sweets has absolutely no idea that diabetes could kill her. I’d place money on it. I know at some point we are going to need to discuss the seriousness of diabetes. I think she somewhat understands because of having to be taken by ambulance to the ER after low bg seizures. But she’s been to the hospital before and she thought the ride was cool. So we are going to have to talk at some point. But not now. Not when she’s 5.
    It’s such a hard thing to balance… We try our best to do what is best for our kids. We just need to try to make sure none of us live in fear!

  7. Renee says:

    When my older ( non-D) daughter was about 5 yrs old, she completely floored me with the following – I “thought” I was calmly explaining something she’d done wrong…and she screamed “stop yelling at me” I slowly/calmly said “I am not yelling – YOU are yelling”….To which she replied “You’re yelling at me with your EYES!!!”…..Hmmmmmmmm…..Key word is PERCEPTION – what we think we’re conveying to our kids -with or without diabetes- isn’t always what they perceive. Younger daughter ( with D) once told a reporter she kept a lot from me because I worried enough about her as is, why would she want to make it worse????……Sad that she felt responsible for my happiness, even if I never actually SAID that…..because as you wrote Moira, that belief came from my face!!! Thanks to cyber pal Ellen I finally learned to just say “thank you for checking” and NOT let my daughter SEE my reaction (by turning my head while I gnashed my teeth!!)

  8. Sally says:

    Thanks so much, Moira, for this great reminder! It’s so easy to get caught up in hovering and fear. I’m learning every day to give my T1, almost-teen daughter a little more independence and space. She’s done a great job managing her diabetes, and has earned a long leash! :) Yes, she screws up every now and then (as do I!), and we’ve taught her that it’s OK to not be perfect. It’s so important for me that she learn to live with confidence and not fear. She tends to be a slightly anxious kid anyway (about grades, diabetes, in general), so I have to be extra careful to just “surf” the diabetes adventure as it unfolds. It is what it is…

  9. K was diagnosed so young that by the time she really understood fear, we had gotten really good at hiding it. I would however share one of your commenters fears…resentment and we work everyday to avoid it. In fact at 13 she is likely just starting to truly understand the dangers of D and that truly scares me.

  10. Jen says:

    Same…I wake up every 2 hours regardless of the alarm for the most part now..we are only a little over 3 months into my little ones diagnosis she is 3) and I am *terrified* to sleep more than 2 hours without at the very *lest* checking to be sure she is breathing right and not clammy every 2 hours but 9 times out of ten I still check her blood sugar at those times too..just to be sure…she sleeps right through it at this point.

    • Moira says:

      It is such a unique challenge with an itty bitty one — one that even a mom like me with a child dx in kindergarten cannot fully understand. Hugs to you and your family!

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