Monday, April 28, 2014

The Road Ahead: A Look at Five Years with T1D


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!



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11 comments:

  1. You made me cry too. Oddly enough, last night I dreamt about diabetes for the first time in I don't know how long. I dreamt that my daughter and I met another little girl with T1 too, and this little girl said some of the most profound and prolific things I'd ever heard from a child who has this disease. And in my dream I was sobbing, with the revelation of just how strong she is - just like my daughter. Thank you for sharing your journey. The day she was diagnosed, I never felt so alone. Today, nearly 7 years later, I am so grateful to connect with others who "get it." God bless!

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  2. What a beautiful post. You, your husband and your sweetie have had quite a journey! Thanks for sharing it. I teared up, thinking of you all -- thinking of us, too. It's been close to eight years since my son's dx. Wishing you the best!

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  3. 5 years was tough for me too. ((HUGS)) Love you Hallie!! Happy 5 years and oh so many more BRILLIANT years of defeating this monster!

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  4. Thank you so much for sharing this...I know it wasn't easy for you. "Maybe we overcome it by just living our lives"...that's exactly what we have to do, no matter how much we think we can't or how many times we feel like the world is ending. And you know what? While you're traveling down that road ahead, don't forget to look around you and admire the beauty that exists and think of the wonderful things ahead.

    Kristina (mom of Isabella, age 3, DX 8/28/12)
    www.InspiredbyIsabella.com

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  5. Hallie, five IS hard. We are approaching TEN (how is that possible?!) on the 23rd, and I feel the same way. She's decided to have a party and celebrate (can't have a big ol' pity party, can you? Well, and expect kids to want to come! ha!)!

    You are right, we just put one foot in front of another, and keep moving.
    We're putting on our crowns, and walking away like a boss!! : ) Hugs!

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  6. That was beautiful! I enjoy coming to this blog and reading about y'all's journey :)

    I too have started a blog about my life with type 1. I didn't think I could ever write about that for everyone to see! I I have and I look forward to it now!
    Thank you for sharing well.. Everything! It's so nice to read it all and know y'all get it!
    You, your husband, and your wonderful daughter are all so very strong and have been through so much and kept right on going!

    God bless!

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  7. Hallie, thank you for sharing this journey with the world! My son was dx'd on April 18 of this year. It was Good Friday. Two days before Easter. Three before my 18th wedding anniversary. One month and four days before his 12th birthday. I feel like I have lived a lifetime in the last 8 weeks. I have read your blog from the beginning to the present in 8 weeks...it has helped me survive and not feel so crazy and alone and confused! Thank you, thank you, thank you!

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