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The Road Ahead: A Look at Five Years with T1D

Monday, April 28, 2014

Easter.  2009.

She was sick.  I knew something wasn't right.  I just didn't know what.

Well, I did.  But...

I could feel that we were on the edge of something BIG.

Sweets had just turned three.  She had just moved into the preschool room at her daycare.  And things were not going so well.  She was cranky.  All the time.  She cried over nothing.  She would cry when I left her at daycare.  She was tired.  All the time.  She would drink and drink and drink.  She was losing weight.  She didn't look good.

April 12, 2009

At our church service on Easter, we were given a 5x7 card.  A "Save the Date" card.  For April 20, 2014.

On the card was a picture of a road.  The road ahead.  And a scripture.  About the Lord going before us.  I can't remember which one... and I can't remember anything else about that weekend's service.

I kept the card.  When we got home, I put it on top of the dry erase board/command center in our kitchen.

And there it stayed. 

It was there on April 25, 2009 when she started throwing up.

It was there on April 26, 2009 when she was lethargic and had to be carried because she couldn't walk.  And when were called at Bible Study to come home because something was really wrong.

It was there on April 27, 2009 when we took her to the pediatrician.  When I said, "I'm worried it's diabetes."  When he said, "Oh, I don't think it's that."  When her blood sugar was too high to be read on the meter in the office.

When we were told for the first time, "Your child has type 1 diabetes."

When we rushed her to the hospital.  When we were told she was in DKA.  And when we spent the next 5 days at Children's learning how to keep her alive. When I gave her the first of THOUSANDS of shots.

It was there on those first, dark days when we didn't know how we were going to make it through.  When we had to hold her down to give her the shots.  When we would both end up in tears.

It was there in September 2009 when she went to preschool (with me... at my school).

It was there in October 2009 when she got her first insulin pump.

It was there when we traveled for the first time away from home with diabetes along for the ride.  And on birthdays.  And Christmases.  And Halloweens.

It was there during bouts of illness and stomach flu.  And trips to the ER to get fluids and get checked out.

It was there on all those average, ordinary days in between.

It was there on April 26, 2011 when her blood sugar crashed and she had a seizure.  When we rushed her to the ER by ambulance. 

It was there in August 2012 when she went to first grade.  At a new school.  Away from me.

It was even there on September 2, 2012 when Jason had a heart attack.  And I had to leave her with my parents and then Misty so I could be with him.

We've been through a lot in the last five years.

Sometime over the past year, the card got moved when I was redecorating.  I still have it.  I just don't know exactly where it is.  I'm sure I'll find about as soon as I hit "publish".

But I don't have to see it.  I know it's there.

(If you're the type that loves symbolism, then you know it's not about the card.  It's about what the card represents.)

This past Easter weekend... April 20, 2014. 

THE day.  Five years.

Our pastor talked about the cards.  And how God knew what would happen to us during those five years.  And how He was with us every step of the way.

Honestly, I can't tell you exactly what he said.  Because as soon as he started talking about the cards and the past five years and how Jesus overcame the grave and what we have overcome in the last five years... I lost it.

It's been a long time since I cried about diabetes.  We've been going along just living life.  We are used to this new normal now.  Not much phases me.  We just do it.  Sure, it's still difficult at times and it still sucks.  It's just that it's just what we do now.  It just... different.

I hate crying in public.  Hate it.

But I sat there and sobbed.  And not just a little, discreet tear leaking from the corner of my eye.  No... like sobbing.  Like shoulders shaking, tears running down my face, not able to see or breathe crying.  (And I'd like to apologize to the lady sitting next to me who I am sure I made rather uncomfortable...)

The road ahead.

I'm glad I didn't know then what I know now.  I'm glad that Easter Sunday in 2009 I had no idea what lay before me.

I'm glad I didn't know that in 15 days my life would change forever.

I'm glad I didn't know as we drove her to the hospital (and she was so lethargic she couldn't even stay awake) and I was wondering how in the world we were going to deal with Halloween...  that Halloween was going to be the LEAST of my worries.

There was so much I didn't know.

I didn't know that I would make friends from all over the country.  Friends who just get me and this life.  Friends who I couldn't imagine living without.

I didn't know how proud I would be of husband and daughter.

I didn't know what a rock star she is!  I mean, I had an idea... but....!  D kids are incredible.  Their strength and composure and perseverance is amazing.

I didn't know strong I am.

I didn't know I would find my voice through advocacy.  Or blogging.  That I would have no issue spilling my guts to strangers on the Internet!

I didn't know the opportunities we would have... BECAUSE of diabetes.  Opportunities to grow and learn.  To speak up.  To do something that doesn't just benefit us but helps others.  To make a difference.

I didn't know that we would be ok.

Better than ok.

That we would thrive... in spite of diabetes.  With diabetes.  And because of diabetes.

Five years.

It's a long time.  It's over half her life.

There's something about five.  Maybe it's that it's when we have to start additional testing at the endo for complications.  She's eight.  We shouldn't have to worry about complications yet.  I really don't know... But I know I'm not alone.  As I started this blog, I texted one of my dear friends - another D Mama - and told her I wasn't sure I could do this.  That I could write about this.  That I could go there.

She said, "Five is tough."   She knows.  She's been there.  Just a few months ago.

It just is.

But only for me.

Five years doesn't phase her at all. 

And that's a good thing.  To her, her diagnosis date is a day we do something special and fun.  And that's it.  She doesn't really get the significance of the day.  To her, it's not a big deal.  Because this D reality... It's all she's known.  It's just what IS.  No biggie.

But as her Mama... It's a big deal to me.

I sat there last weekend, sobbing in church, not because Diabetes has beat us down.

But because it hasn't.

Oh, it's tried.  And we have been knocked down a few times.  Probably more times than I want to admit.

But we get back up.

And we keep fighting.

The theme of that service was Jesus overcoming the grave.  I can't say that we have overcome diabetes.  Because a chronic disease isn't something you overcome.  At least, not in the sense that you ever move on.  Unfortunately, it doesn't work that way with diabetes.  D is there every day.  It's there when you wake up each morning.  It's there when you go to sleep at night.  And every other minute of the day.  There is no escape.  Not even sleep.

The only way I would say we overcome it, is that get out of bed each morning.  We put one foot in front of the other.  And we get it done

We manage it.  We learn from it.  We do our best to control it and not let it control us.

And maybe, we overcome it every time we do something that people think is impossible to do with diabetes.  Sometimes things we even thought we couldn't do.  Every time she has a big bowl of ice cream.  Every time she dances her heart out.  Every time she cheers or does gymnastics.  Every time she goes swimming.  Every time she goes to a friend's house - alone.  Every time she tests herself.  And boluses herself.  Every time she goes to school... and is just like every other kid there.  Every time people stare at her because she is testing or wearing a cgm... and every time they have no idea she has a disease.

Maybe we overcome it by just living our lives.

I was telling another dear D Mama friend about our Easter experience and she put it into perspective with a few words.  She said, "It's hard.  And it sucks.  But look AT HER not her diagnosis.  AT HER. She's beautiful, smart and THRIVING."

So, my friends, as I look at this day... this diagnosis day... this day that changed our lives... I don't even really see the disease.  What I see is how far we've come.  We've come a long way, baby!  And most importantly, I see my daughter.  My brave, strong, beautiful, determined daughter.  Who never lets anything stop her from what she sets her mind on.  And who is one of the most incredible people I know.

Thanks for sharing this journey with us!


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.


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?


Did it keep us from living life?


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.

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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