Bittersweet Symphony

Tuesday, January 25, 2011

POOF...

It is dark.  I am tired.

POOF...

The room is bathed in the soft golden glow of the nightlight.  I can make out the shapes of butterflies and stuffed animals that lay around the room and cover the walls.  Minnie Mouse is sitting above my head, perched on a pillow.  I am not the only one keeping watch tonight.

POOF...

I can see clearly my sweet angel, laying next to me.  Her tiny, pink lips parted every so slightly.  A golden curl falling over her still chubby cheek.  Her long eyelashes - fluttering ever so often.  The rhythmic rising of her chest. 

POOF...

She is so peaceful.  She is dreaming.  She is the picture of innocence.  Of childhood.  Of perfect health.

POOF...

You'd never know by looking at her.  You'd never guess that her health is volatile.  That a disease is waging war in her body.  That is has taken a piece of her childhood.  A piece of her innocence.  Even though she herself does not realize it.

POOF...

You'd never know if you didn't look closely.  In the dark, I can't see the hundreds of tiny holes in her fingertips.  I can't make out the cgm site that is attached to her tush.  Or the pump that is attached to her back and arm. 

POOF...

I am calmed by that rhythmic sound.  It fills me with a sense of comfort.  A sense of peace. 

POOF...

That POOF is sound of the tiniest drop of insulin being delivered through her pump.  Her basal rate.  It's a drop so small it would be almost invisible to the naked eye.

POOF...

I am so grateful for the POOF.  I am so thankful for the technology.  The ability to manage her diabetes with such precision.

POOF...

And yet...  I know that what I am hearing is essentially the sounds of life support.  That little POOF...  that tiny drop... is keeping my child alive.  And something about that, while being incredible, is also heartbreaking.

POOF...

I've learned to work swiftly and efficiently in the dark.  My movements so practiced that it's almost instinct.  I estimate that I've done this close to 7,000 times.

POOF...

Even in her sleep, she hears the soft BEEP.  It's instinct for her, too.  A small finger is extended before I can even reach for it.  A drop of blood is expressed...

POOF...

120.  *exhale* She's come up.  That POOF may have been working too well.  Yes, it saves her life.  But it can also take it.

POOF...

A little juice.  A straw placed on those tiny lips.  Another instinct.  "Drink, baby.  Drink."  And she does.  Without ever opening an eye. 

POOF...

I can now sleep.  But I don't.  Instead I choose to stay a while longer and listen to the bittersweet symphony.

POOF...







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14 comments:

  1. Well said. It is a dance isn't it. We go back and forth with the numbers every night. Just make sure you are the conductor, and not D!

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  2. Wonderful post, Hallie - - - She is such an angel!!

    AND I LOVE THIS SONG.

    Leaving your post up just so I can jam! :)

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  3. Do I ever know that sound. I'm happy with 120 at bedtime. I know she'll make it till morning-that's my biggest fear-her making it. I freak out when she's down in the 70's at midnight, and I'm SO tired. Reset basal to zero for at least an hour, give yogurt drink..and don't sleep. It is a very delicate dance. It's all the little things you just do, on autopilot.

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  4. oh my this was a great post!! THank you for sharing your thoughts so raw. Hugs!!

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  5. Beautiful and gut wrenching at the same time. Wow. As always amazing post.

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  6. what a beautiful child and a beautiful mama to take care of her, too.

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  7. Such a great post...I too am thankful for the "POOF" of the life support.

    She is soooo cute!

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  8. I remember the animas pump we used to have and the poof sound we would hear when insulin was being delivered. :) It was a lovely sound...and this was a lovely post!

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  9. Thank you for this great read. I am also thankful for all of those little poofs.

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  10. Beautiful, Hallie. Absolutely beautiful.

    <3

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  11. You have such a way of eloquently expressing this life we lead. I say exactly that, drink,baby, drink. That made me tear up. It's all bitter sweet. Gosh I just feel less alone reading this and the comments here. You all are out there living it, too!

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  12. Excellent post! Very moving and very very accurate! ((hugs))

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