Life for a Child

Tuesday, April 30, 2013

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.

video


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.


Photobucket

6 comments:

  1. Every time I feel inspired to write again about our struggles, you sum it up so poignantly, I don't have to. On to other things! :)

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  2. I always have to fight back the tears when I read... Glad she had fun with some D friends :)

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  3. Aww, here we are at the very teensy beginning of our journey with this disease. My daughter is 6, but dx was only 51 days ago. We also love Taylor, in fact, when I read your post title, I immediately thought of the song that shares it. I can only imagine the jubilant joy of getting to see Ms. Swift live, and to do it with a Diabuddy! So much the better!

    It's both disheartening and comforting to see you, among the road weary on this path we share, while I am still stumbling around trying to find my footing.

    I think celebrating d-day is the absolute right thing to do. Especially if Sweets wanted it that way. I plan to celebrate with my daughter, I'm already planning, even though it's 314 days away! In my mind it's the celebration of having survived it another year, and while that has dark undertones, I mean it in the figurative and literal sense, both. A year from now she will have literally survived it for a year, but we will all have figuratively survived it, and that's something *I* understand all too well since her daddy, my husband has survived it for 14 years now.

    Great post. http://girlglycosylated.blogspot.com

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  4. We will be celebrating 10 years soon! It never gets easy but we learn to cope. The pump has been amazing. Now the Dr is talking about a DEX waiting to see the cost. Love your blog.

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  5. Aww, I hate it for them too. It's more than anyone should have to endure, especially our babies. Congrats to you all for surviving four years on this crazy roller coaster. We haven't hit our first D-versaries yet (both my girls were dx'd last fall) but we intend to make both of them special. These kids deserve the moon for all that they have to deal with.

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  6. "I'd like to be my old self again, but I'm still trying to find it"... oh how I can relate to those words. Now if I could only "feel 22" :? lol- sorry, I couldn't help myself.

    Anywho... 4 didn't bug me, but for some weird reason, the looming number 5 has been on my mind. Not sure why im thinking of it already since its still like 6 months away, but its just simply nagging at me. Maybe its a combo of things. Maybe 5 seems like its more permanent? Here to stay? Not getting the hell outta my world? I don't know?!?

    Glad they had such a great time at the concert.

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