I've mentioned them before.
The lows.
The BAD lows she used to have.
She was so little. She had a typical vocabulary for a 2 year old. It included stuff like "cat, pig, eat, and more".
Things like "I'm low." and "Help me." weren't phrases we ran across in her storybooks. She didn't know what was happening...or how to call for help.
They went on for over a year.
Dare I be 5 minutes late for a snack or a meal. Diabetes would swoop in and knock my baby girl to the ground...she'd pass out where ever she was... hit her head and come up kicking, screaming, fighting, confused, sweaty, bruised, biting, flailing, head bobbing, eyes rolling...
My sweet baby. She stumbled through life with a bumped forehead, chipped teeth, an occasional laceration, and a bruised face for 18 months. They happened about once a week. No amount of dosage adjustments, snacks, or strict food schedule could stop them.
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| (This is my mom and Sugar (2 yrs old) on the very sad day we said good-bye when our family left MD and moved to AZ - note bruised forehead.) |
Anyway, I probably should have used the Glucagon shot on more than 1 occasion. After diagnosis, they specifically told us that Glucagon was strictly reserved for seizures and unresponsiveness...these lows didn't fit either of those descriptions. Nearly 7 years of reflection adds alot of details that I couldn't see clearly back then.
It wasn't until I started opening my world to other families raising children with diabetes that I learned her lows weren't "normal". By "normal" I mean that 1) they happened at all, and 2) they happened so frequently. I would describe them to other parents and they'd act as if they had no idea what I was talking about. Didn't these lows happen to EVERYONE?
Well, no. They didn't.
Thank. GOD.
The pump changed it for us. Smaller doses, IOB, and the ability to adjust basal rates made all the difference in the world.
In fact, I can only think of a handful of times we've ever come close to one of those "BAD LOWS" since she began pumping in 2007...and not a single episode of passing out like she used to.
So I've gotten comfortable. I'm not as anxious. I don't panic as quickly. She's been pumping for almost 5 years, and she's able to communicate with me now.
The other day, we went for a family hike. The girls LOVED it! Afterwards, we grabbed a hearty snack and headed to the park for a bit. It was a gorgeous day.
And then she said she felt low.
This is the lowest BG she's ever seen. (I've seen her as low as 26.)
It scared her. It scared me!
She popped back up to 120 pretty easily, and we went on to have a great evening.
It's still there though. She mentions it from time to time. The other day, she asked me how much lower her blood sugar could get before it killed her.
Her words..."Before it kills me?"
What do you say to that? How do you look into your innocent child's eyes, and give her an honest answer about her own mortality?
Until that moment, I didn't even know she understood the black and white reality that diabetes could take her life. We haven't talked about it...the fact that other children die every day from her diagnosis.
It took my breath away.
I held her close, and told her that I honestly didn't know the "magic number" to answer her question. Everyone is different, and there are so many other things -- like active insulin and activity level at the time of the low -- that would need to be considered. But 34 is too low for anyone.
She knows now.
She understands that there's a blurry fine line between life and death in the balancing act of managing her diabetes.
It's been a few days, and the anxiety is fading.
This one shook her.
I'm not sure it will ever go away completely, but she's not frozen with fear. Thankfully, the mind games didn't last long, and she's back to herself. She tackles each day with a vibrant smile, youthful energy, and a positive outlook. We've been back to the park almost every day this week.
This low stopped her for a moment in time, but it hasn't slowed her down in the game of life.
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Wow, thanks for this post Wendy. I JUST blogged about this whole Your Lows May Vary thing the other day, and mentioned some of the crazy violent lows I've had through the years - as an adult. But had them as a kid, too. Interesting to hear your perspective on these... Glad it balanced out, but can't imagine the fear that all caused for you.
ReplyDeleteTears in my eyes. . .
ReplyDeleteThanks for posting this Wendy. Our children have to learn about these issues at such a young age. For some reason, my CWD knew from the start (she was 6 yrs. 3 mos. at diagnosis) that she could die from an extreme prolonged low. I thank God that she feels her lows and pray she continues to feel them throughout her life. The lowest we've seen was a 29... eeks!
ReplyDeleteThis post really speaks to me as we have been having some bad LOW reactions here lately too and I have been trying to imagine just how it has been effecting my little guy since he is still so little. Hopefully, like you said it only stopped him for that moment in time and not in the game of life...love those words! By the way, those pics are just pure preciousness!
ReplyDeleteI always tell Maddison how the Liver is "supposed" to help us past severe lows to reassure her that our bodies have back up ability to help itself in an emergency....maybe that would help ease Sugars mind?
ReplyDeleteAw, kinda sad. Kortnie has asked me that before. She had a bad low of 28 once and we've had other bad lows where she fights with me when I try to get her to drink her juice. I'll tell her about them the next day or even a few hours later and she never believes me that those things happen, until one day her older sister told her that I was telling her the truth. So, now sometimes she'll ask me if 28 is as low as she's gone and "what happens if I get down to 1 or 15 or 10, will I be dead?" I hate these questions. I tell her that I really don't know, but it would be bad and we'd have to go to the hospital probably and thats why it's important for her to tell me when she's feeling low or to check her BG and drink her juice. Geez, there's always something heart wrenching for us to deal with isn't there?
ReplyDeleteReading this - as I've said before (and will probably say again...), I'm in awe of parents with CWD. You're amazing!
ReplyDeleteok i am going to cry... we have teetered on this topic at our house... my almost 14 year old realizes this i guess... i think my 8 year old does too...i know it scares them.... i have been asked too how low can i go Mom??? I dont know... lets not find out....praying for a cure as always... really hate this disease...i hate when people unknowingly say well at least its manageable...blahhhhhhh
ReplyDeleteI'm crying. Like. Everyone. Else.
ReplyDeleteShe's amazing as are you, you had an angel watching over her and I'm sure still do. This post is so powerful my friend, thank. You for sharing.
We're not there yet in understanding as our daughter is only 3. If it would make Sugar feel better to know how low others have been, we've been as low as 14 (so the EMT told me) and still pulled through. I hope we never have to go there again. Thanks for the heads up on probable future conversations. That's the problem living one day at a time... things like this tend to blindside me. I dont know that I would have handled it as well as you did.
ReplyDeleteOur son is just getting to the age when he'll start to ask those questions - thank you for sharing. I also can't imagine handling as gracefully as you or your daughter - she's pretty amazing. The Dex and mini-gluc have helped us out of a few very scary lows - very glad they're there.
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