Friday, January 16, 2015

Quiet Tears and Making It Look Easy

We go along for awhile on cruise control.

This life is just our normal. 

All the testing and counting.  The sleepless nights.  The site changes.  The shots. 

It's just our life. 

It's our normal.  And we don't really talk about our normal.  We just do it.


And then I saw this pin on Pinterest.  And it made me think.

It's been almost six years.  No one really asks how she's doing very much anymore.  No one EVER asks me how I'm doing. 

Is it because after so many years, people think we've just got this?
Is it because people assume we're fine? 
Is it because she LOOKS fine.  Healthy.  Happy.  ?
Is it because I don't talk about it so much?
Is it because no one knows when I've been up five or six times a night and am working on about 2 hours of sleep?
Is it because people think she's ok now? 
Is it because people think she's "controlled"?
Is it because people think diabetes doesn't affect her anymore? That she's used to it? That the needles don't hurt any more?  That it's not dangerous?

Do we give the impression that this disease has become.... easy?

Because it's not.

It's still hard.

It can still kick my ass into next week hard.

There are times when it IS our normal and it's just what we do and it rolls off our backs.

It hasn't gotten easy.  We've just gotten better.

 One of my favorite quotes I found on Pinterest!

But we still don't sleep through the night.  We still test at least once.  We are rarely rested.  (I'm not saying you have to test at night.  I'm just saying we do.  And we will.  Because she NEVER has ever woken up from a low.  She can't tell she's low when she's awake.  She has been in the 20's low and you'd never know it based on her.  But to each their own.  That's how we roll and although we hate losing sleep we feel it's needed.)  I'm used to functioning now on very little sleep.  It's the trade off for keeping my child healthy and alive. 

We bust our rumps every day to keep her in range.  She is crazy active.  It's who she is.  She loves dancing and cheering and gymnastics.  And to do what she loves requires A LOT of work on our parts.  (In fact, as I type this while she's at dance, let me pause to check her Dex becasue she got a LOT of insulin earlier and who knows what's happening... Crap.  She's 66. Hold on....)

There are so many factors that affect her blood sugar. 

So.  Many.  Things. 

Controlled?  I don't know.  Managed.

She rarely complains about finger pricks and site changes.  But they bother her.  They still do.  You can see it in the slump of her shoulders when she realizes it's pod change night.  It might be a split second.  Because she know it has to be done.  But she doesn't LIKE it. 

She looks healthy.  She IS healthy.  And happy.  But do you see the red circles under her eyes?  Do you see the look... the not there look from lows?  Do you see the headaches from being too high?  Most don't see it.  She hides it well.

Most people don't see how she hates having to miss class because she has to test.  Or how she hates having to stop while dancing or cheering.  How she hates being singled out.  How she feels different from most of her friends.  She seems so well adjusted.  And she is.  But it still sucks. 

This is what we do.  We test 10 times a day.  Sometimes more.  Sometimes less.  We count every carb you can think of.  We keep insulin in our fridge and have a medicine cabinet that's taller than me.  The people at Walgreens know us by name.  And sent us a Christmas card.  We are used to blood.  Needles. Worry.  Frustration. 

We are used to the tweaking.  We are used to treating this disease largely on our own. 

We are used to making life and death decisions every day. 

We are used to the sleepless nights (Have I mentioned that already??)

We are used to the fear. 

It's just what we do.  It's our life.  It's our normal. 

But just because we may be more quiet than we used to be does not mean it's become easy. 

We've just been so busy LIVING this life... And not just living it - but LOVING it... That somehow we've made it look.... easy. 

 Another Pinterest Fave...

What choice did we have?  

If we spent all our time moaning and crying and complaining and throwing tantrums, we wouldn't be living. 

So we've gotten on with it.  At some point, we decided it was time to pull ourselves up by the bootsraps and get busy enjoying this life. 

I kinda like Pinterest.  I may have a problem.  You should check out my Diabetes board.  

That doesn't mean it's gotten easy.  It doesn't meant that this disease doesn't still take my breath away and that it doesn't still bring me to my knees.  It doesn't mean that at times the tears don't fall. 

They do.  It's just that they are now mostly quiet tears.  And they don't keep me from seeing the beauty around me. 

So maybe the fact that we make this look easy... 
And that we make it easy for people to forget that it's a difficult, challenging, serious disease...
Maybe that's actually a compliment. 

Because maybe it means that we're doing something right.

4 comments:

  1. Hallie, you are a master at putting my thoughts and so many others that share the d-life on paper. Others simply can not understand and I pray they never have to.

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  2. Thank you for sharing this :) I know sometimes it really does feel like this condition rules your life and it can be scary and frustrating. It's difficilt for adults too. I was diagnosed at about 18.5 yo (currently in my mid 20s). So Im not sure how it is for younger kids. But from what I remember of being one but I'm pretty sure kids are so capable having things roll of their backs very quickly and with less pain than most adults. It sounds like you and your family have a lot of great stuff going on! Just think: in another six years your daughter will be a beautiful young woman (who just happens to have type 1 diabetes). Yes, it requires effort and lots of work and diligence - but there are many others things in life that may cause pain and be difficult scary and dangerous. And she will go through them too, perhaps with more grace and wisdom than your average woman not just jn spite of but because of the challenges faced, I know you know all this. sometimes it can be tough to remember though in the moment. You are doing great! I appreciate your blog and diligence in managing your daughters condition and helping her learn to enjoy all the things she wants to do and likes in life with confidence and smarts :)

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  3. This is a beautiful post. I am coming up on my 5 year diabetes anniversary and am struggling to put my thoughts into words. You captured so much of what I'm feeling. Thank you.

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  4. My daughter was just diagnosed Thursday 6/9/16 with type 1 diabetes. She is only 7 years old. I feel like she is already feeling like this and it's only been 2 days. Idk how we are going to do this but we have no choice. How blog post is beautiful. Thank got for sharing!

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