All Too Well

April 27, 2013

Saturday

Four years

Four years of living with diabetes.

The first anniversary felt like we were reaching a milestone.  The second we spent inpatient after a low blood sugar induced seizure the night before.  The third anniversary found me feeling strong.

The fourth?

I wasn't really able to fully answer that until today.  This year I feel like I just know this disease all too well.

Not that I UNDERSTAND this disease.  Just that I know the games it plays all too well.

Our "diaversary" tradition is to do something fun for Sweets to celebrate the day.  Different people have different feelings about acknowledging the day.  For us, it's a reason to celebrate!  It's a day where we can honor the Sweets for her bravery and courage.  It's a day where we can do something fun to acknowledge all the "un fun" things that diabetes brings into our lives.

This year we did it up BIG!

She wanted to make cookies to take to school to share with her class.  We didn't do that last year but she really wanted to so something special this year.  Who am I to say no to that?!?

But that wasn't the best part...

Sweets and I went Lexington with Misty from Life is Like a Box of Chocolates and her girls to see Taylor Swift LIVE IN CONCERT!  We spend the night and made it a fun little road trip!

It was awesome!  The concert itself was amazing but the excitement and joy on the girls faces was priceless!  They were beyond excited!  They would just hug each other and scream out of the blue!  SO CUTE!

It was a wonderful memory spent with wonderful friends!

That night at the concert, singing along to the songs (because the truth is, I love Taylor every bit as much if not more than Sweets!), I couldn't help but think of where we were 4 years before.

Children's Hospital.  DKA.  Scared.  Numb.  Overwhelmed.

And the contrast to the healthy little girls singing at the top of their lungs.

I am so grateful.

One of the songs from her new album is called "All Too Well".  As she sang the song on Saturday night, it struck me in a new way.

 I can picture it after all these days.

And I know it's long gone,And there was nothing else I could do

And I might be okay,
But I'm not fine at all.

I was there, I remember it all too well

Time won't fly, it's like I'm paralyzed by it
I'd like to be my old self again, but I'm still trying to find it

Diagnosis.

I think we can ALL still picture it all too well.  No matter how long it's been we can't forget that day.

And we may be ok.  But we're not really fine at all.

Because we know the disease all too well.

That was made clear to me tonight.  J texted me after school.  He picks her up from school.  She had a music show tonight and it was also pod change night.  We knew we needed to change the pod BEFORE the show.

When J told her of this, she had a complete meltdown.

She said, " They are never going to find a cure.  I'm going to have it forever.  I hate pod changes.  I hate anything to do with diabetes.  It messes everything up."

Knife to the heart.

What do you say to that?  Although we have NEVER said those things to her, we have thought them ourselves.  She has every right to feel that way.

She knows this disease all too well, too.

And after four years, that's how it is with diabetes.

Some days we've got it.  We are doing well.  We are ok with it.  It's in the background.  It's no big deal.

And some days...
Some days it messes everything up.
Some days it steals our hope.
Some days it steals our joy.
Some days it gets us down.
Some days it hurts.
Some days it's really hard.

After four years, I know this disease.

I know the games it plays.

I know that there are days when you want to scream and throw things and sit on the couch and sob.

There are days like today when you want so badly to take this from your child.  When you hurt so much that your seven year old even has to worry about a disease that she may have for the rest of her life.  When your heart aches that she can't just focus on her big music show and being a kid.

And there are days like Saturday when you see her sing with her friends at the top of her lungs.  When you can't tell that she has diabetes (except for that blood test after a low alert from Dex in the middle of the show).  When she ISN'T thinking about diabetes.  When she gets to be like everyone else.  When the joy on her face make her eyes sparkle.

It's the ying and the yang.  The good with the bad.  The light with the darkness.

I know all too well that the bad days will come.  But I also know that the good days will too.

And so tonight, I cry.  Tomorrow I will laugh.  And always I will remain thankful for my incredible, brave, courageous, strong, sweet, loving child and for the technology that keeps her healthy and alive.