Until She's Not

Wednesday, April 23, 2014


Life is moving a break neck speed.

I can't seem to find the time to keep up with everything.  Like you know, shower.  And feed my kid.

So blog reading has REEEEALY taken a back seat. 

But the other day I read a blog post that was one of the best I've ever read.  And I want you to go read it.  Now.

It's called The Answer by Kim from Texting My Pancreas.  Go on.  I'll wait.

Right? 

Need a tissue?  I sure did.

I think what kills me the most about this post is that I can see us in this.  I can see her future.  And this damn disease is still going to be there.  It's not going away just because she's an adult.  Or has her own child.  (Although I'm hoping for that cure and new technology to help make this reality better.)

And not just in the future.  I see this now.

Because A is fine, too.  Until she's not.

99% of the time you would have no idea she was low.

And I'm not talking 70's low or even 60's low.

I'm talking 40's and 50's.  And sometimes 30's.

She's getting better at feeling them.  But she's far from perfect.  And we do use and love our Dexcom for this very reason.  Because she has no idea.  And she's not ever, not once, woken up when low.

Take last Thursday... just as an example. 

It happened to be "day of diabetes" where you're supposed to post every diabetes related decision of the day.  I'm working on a blog about that because I'm at school and I can't tweet or Facebook with a class of 29 kinders!  Anyway, she was low.  All day.  Over and over.

Did she feel it?

Nope.

Did it keep us from living life?

Nope.

It just made it a lot harder.

She gets mad when she's low at school.  She hates missing things because she's in the clinic treating a low.  In fact, she told us, "You need to run me higher.  I don't like being low at school and missing stuff."

We ended our night at dance.  And even though she had eaten a ton of free carbs....

You guessed it.  Low.

Free carbs.  Temp basal.  Basal off.

And by her second class, she was 54.

This is what 54 looks like at dance class.

http://instagram.com/p/nJ1xFSLDxO/

You can follow me on Instagram, while you're there!  If you want to see more super cool dance videos and all!

I know, I know.  When she's low we're supposed to give 15g and wait 15 minutes to make sure she's come up.  And sometimes we do.  But it depends on the situation and circumstance.  (No lectures, please! Do what works for you - not what we do!)  And honestly, this day - after having to stop for diabetes countless times - I just let her dance and kept a close eye on Dex.  After almost five years, I just have a sense of when it's ok and when it's not.

One of the other moms that was sitting next to me was watching me test and her eat her candy.  She's a nurse.  And she couldn't believe that she was still functioning at 54.

What can I say to that?

It's just how she is.  She functions practically normally at some scary low numbers.

And that's scary as hell.

It's what makes it so hard for other people to understand.  And for anyone else to be willing to take care of her.

She can be perfectly fine.  At least on the outside.  At least she appears that way.

And the next thing you know, she can't read.  Her mouth can't form words.  She loses coordination.  Her eyes can't focus.  Sometimes they roll back in her head.

That's what CAN happen.  And worse.  Much worse.  We've been there.  We've lived it.

To us, it's just part of life with diabetes.  I don't get too rattled.  I stay calm.  Even when her eyes ARE rolling back and she can't form words.  You'd never know by looking at me, either.

We treat.  We move on.

And I forget what that looks like from the outside.

As we are venturing out into the world of solo play dates and increased independence, I'm having to explain this to other people.  What to look for.  What to do.

And they say, "She knows what to do, though.  Right?"  "She will feel it, right?"

I get it.  It's freaky.  It's scary when you don't deal with it day in and day out.  Heck, it's scary sometimes when you do!

Yes, she knows what to do.  But...
No, she probably won't feel it.  She may say she does.  And sometimes she's right.  But sometimes she's high... she can't tell the difference.

It's the same thing at school.

We just got our 504 plan in order for next year.  And with that comes the reminder that we are going to have to explain all this to a new teacher.  And rely on someone new to take care of her school.

It's the tightrope.

She's just like everyone else.  She can do the same things as everyone else.  Treat her like everyone else.

But she needs some extra care.  And I need you to get how serious it is.


Because she's fine.

Until she's not.


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5 comments:

  1. So much love your and Sweets' way. xoxo

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  2. We are new to this(diagnosed in January) and my little girl cannot feel her lows yet. I am praying that she will soon. Thanks for posting. I hope I am as calm as you in those scary situations.

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  3. Wow, thanks for pointing out Kim's post. Soooo frightening… How scary that your sweetie can't recognize that low most of the time! My son's ability to recognize his lows has gotten worse over the years. So, so grateful for our Dexcom… He has been in the 20's and 30's (not as often w Dexcom) and never been close to passing out! We "customize" treatments of lows just depending on a whole range of factors. I'm curious -- do you avoid the 15/15 fix because of over-correcting? I also wonder if other parents give Glucagon training for caregiving adults during play dates and sleepovers. Do you? I think if I was a non-D parent, I'd freak out if someone expected me to give a Glucagon. Love your blog!

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    Replies
    1. We customize too. Depending on a million things. We don't typically do 15g for lows because that's typical way too much. She is as sensitive to food as she is to insulin. Of course, there are times when we do 15. I keep an eye on her Cgm and will retest depending on the original number and what it's telling me. Sometimes it can take a while... But then those free carbs hit all at once. That's what we do... After years of learning how she reacts to different situations and different low treatments.

      Honestly, she's never had a solo sleepover. And the only people she's has stayed with for play dates know what to do. We aren't at a place where she can count her own carbs and bolus for food on her own yet. So I'm still there. I wouldn't - probably- do Gluc training for an hour play date. But as the time gets longer... Especially for overnight. I think I would have to. Maybe. I guess we will cross that bridge when we get there! It's a hard balance. Keeping them safe vs not scaring people away. Thanks so much for reading!

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    2. Thanks for your reply. Sorry, I never got a notice about it! I appreciate your feedback. Yes, it is a hard balance. My 13 yo just had his 3rd sleepover ever. Not easy with D!

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