And the Winner Is....

Sunday, November 17, 2013

A Big THANK YOU to everyone who entered our Lauren's Hope giveaway in honor of World Diabetes Day!

And a BIG THANK YOU to Lauren's Hope for honoring Diabetes Awareness Month!

One lucky winner will get $50 to spend at Lauren's Hope!  The possibilities are endless!  The hardest part will be tying to decide what to buy!

And the winner is....  Kelly M!

Kelly - Please get in touch with me to claim your prize!

If you didn't win, don't forget that you can get 10% off your purchase by using the word PRINCESS!  So there's still a chance to get some special BLING!



There are lots of items that would make wonderful stocking stuffers!  And just think... no lines!  No middle of the night shopping!  No stress!

Happy Shopping!

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Where Awareness Meets Fashion: A WDD Giveaway with Lauren's Hope

Wednesday, November 13, 2013

TOMORROW is World Diabetes Day!

World Diabetes Day celebrated every year on November 14th.  It was created by the International Diabetes Federation.  You can read more about WDD and it's symbols and history HERE.



November is Diabetes Awareness month and I really like having a month set aside especially to advocate and educate about T1D.  Of course, to those of living with T1, EVERY day is a diabetes day and EVERY month is Diabetes Awareness Month! But it's nice to have an organized event, too!

Of course, what celebration is complete without some awesome BLING?!?  And the only thing better than jewelry is FREE JEWELRY!!

In my last post, I told you all about the incredible bracelets that Sweets and I got from Lauren's Hope!  I really feel strongly about her wearing her medical alert bracelet every day.  And I love that she is able do it with STYLE!

This is her CURRENT favorite bracelet!  (She pretty much likes every bracelet and necklace she sees in the catalog!)



And this is MY bracelet!  It's a caregiver id!  Want to know more?  Read THIS.



In honor of World Diabetes Day, I'm teaming up with the wonderful folks at Lauren's Hope to do something special.  We are giving away a $50 gift card to Lauren's Hope!

Just think of all the awesome you bling you can get with that!!!

Maybe you want a bracelet... Or want to try a necklace or dog tags... Maybe your child wants a silicone bracelet or maybe you want something for YOU!   Whatever you have your eye on.... it can be YOURS!

Want to know how to win this awesome prize?!?

Here's what you need to do!

a Rafflecopter giveaway

The giveaway end at 12 am EST of November 15th!  A winner will be randomly picked and posted on this blog that day!

Good Luck!
Now go wear some BLUE!

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The Function Behind the Fashion: Lauren's Hope Medical Jewelry

Wednesday, October 30, 2013

I remember being in the hospital at diagnosis and getting loads and loads of materials and brochures.  There was this "World of Diabetes" binder the hospital gave us.  There was information about JDRF, Calorie King, and lots of medical device brochures.  But one caught my eye...

The brochure from Lauren's Hope.

I remember the social worker going over all this stuff with us and saying that it would be a good idea for her to wear a medical alert tag now.

I was still in such a fog.  My kid needs to wear something that tells the world she has a disease?  No thanks.

But the Lauren's Hope information caught my eye... as does all pretty jewelry!

I actually WANTED to look at it.  It wasn't cold, drab steel.  It was colorful beads and pretty charms.

THAT I was willing to do!

Life was really, really sucky at first.  Sweets was crying every time we gave her a shot.  Which was five or more times a day.  We needed something fun.  We needed a distraction.

So we went shopping!

For a medical alert bracelet!

I knew she needed one.  I wanted her to have one.  And if it had to happen --- it was going to be pretty!

I sat her little three year old self on my lap and we picked out a bracelet for her to wear!

I was worried she wouldn't like it.  She had NEVER worn jewelry before  She never liked it for more than a few minutes.  Luckily, it wasn't a problem!  She put on her bracelet and never took it off!

Over the summer, we got new bracelets from Lauren's Hope!  Sweets wanted a new bracelet.  She wears hers every. single. day.  And she NEVER takes it off.  She sleeps in it.  She showers in it.  She swims in it.  She wears it to school and dance and gymnastics and cheerleading.  It NEVER leaves her arm.  Her old one was looking a little worn.... I mean, the thing had been worn like that for well over a year!

Lauren's Hope was kind enough to offer her a bracelet if I would agree to review it! Ummm.... sure!  We love Lauren's Hope!  As I mentioned, any bracelet that can be worn constantly for that long gets lots of gold stars in my book!  They last.  And they look great, too!

Sweets picked out The Diva medical alert bracelet.  Are you at all surprised by this?


You can see why she fell in love with it!  It's very pretty!  

She chose a purple medial emblem on the front of her tag.  Her favorite color, you know!

But don't be fooled... like I said, this thing can stand up to lots of wear and tear!  She has worn it since summer and it still looks brand new!  Here are some pictures of her sporting her jewelry!



She likes it because it's pretty.  She gets lots of compliments on it all the time!  It doesn't scream I HAVE DIABETES.  That's important to her.  And it's comfortable, too.  Trust me - she doesn't suffer for fashion.  If it bugs her, it's a no-go.  

What's important to ME is that she likes and wants to wear it.  I mean, it doesn't do anyone any good if it sits at home on the dresser.

It's also important to me that she has necessary medical information on her person at all times.  God Forbid we are in a situation where she can't talk for herself and no one else is there to do it either.  But if it happens - we are prepared.  It's got her diagnosis, the fact that she wears an insulin pump, and both of our cell phone numbers on it.

The list of possible scenarios is endless... As D parents, I'm sure we have all thought of them from time to time.  Worried.  Wondered.  I like knowing that I have done everything I can to keep her safe and protect her if I'm not right there to do it myself.  And as she's growing up... me not being right there is happening more and more often.  It's like a little security blanket for me! (And her too, even if she won't admit it!)

Know why else this is great?

Safety.  We just got back from Disney World.  But even when we are at the mall or someplace smaller than the Magic Kingdom... she knows she has our phone numbers on her arm.  She knows that if she is to ever get lost, she should go to a worker and show them her bracelet.  Now that she's a little older, she might be able to remember phone numbers.  But I don't have to worry because they are right there on her arm!  LOVE THAT!!!   

Guess what else Lauren's Hope offered us?  

A bracelet for ME!!!

"YOU?" you ask?  "Why do YOU need a bracelet?"

Well, thanks for asking.  Let me tell you.  

Lauren's Hope offers something called a Caregiver ID.  This is something that the caregiver wears containing the medical information of the person for whom they are responsible.  

I like this idea.  Another added layer of security.  And since they are so cute, sign me up!

I chose the Sea Jewel bracelet.  I wanted something that would match lots of things and look fashionable and discreet.  



My bracelet has Sweetpea's information on it.  It states her diagnosis and that she wears an insulin pump.  It also has our phone numbers.

Why would this be needed?  I think it can be especially useful for parents of young children.  If something happened, if we were in an accident and I was not able to speak for myself or my child... my bracelet could.  If she was not injured, people might not think to look at her medical id.  And I seriously doubt that she would think her diabetes diagnosis was something she should share.  But who knows?  It could be important and necessary information.  Sweets rarely feels her lows so I can just imagine we unconsious and her acting quiet or crying and medical personnel thinking that it's from the accident when really it's a low blood sugar.  I would want others to know that my child has diabetes in case she needed attention.  

Is this unlikely?  Well, it might be.  But so was having a child diagnosed with type 1 diabetes.  I've learned that you just don't know what is around the next corner.  And again... better safe than sorry.  It can't hurt.  It's an extra layer of protection.  And it's not like wearing such a pretty bracelet is a hardship!!  

My bracelet has also held up quite well to wear and tear.  Now, I don't wear mine all the time.  I don't sleep in it.  I don't even wear it every day.  But I like having it to wear on occasions that I know we will be together - especially when it's just the two of us.  

I can really see parents of small children getting a lot of use out of something like this.  I know I like having it now and can imagine that having it when she was a toddler would have helped me feel more secure.  

Isn't that what medical jewelry is all about?  It's a way to keep us and our loved ones safe.  

For us, it's a non-negotiable.  She HAS to wear her bracelet.  

And if you've got wear something every day, I think you deserve something pretty that makes you feel good!  

Lauren's Hope offers a wide selection of women's and girl's jewelry.  If beads aren't your thing you can find the traditional silver bracelets, necklaces, silicone bracelets and more!  There are even special allergy bracelets if you are looking for something like that.  

Now don't think that Lauren's Hope has left out the boys!  Nope!

Lauren's Hope offers some great designs for both men and boys including sports themed items, silicone bracelets, dog tags, paracord and more!  

So what are you waiting for?  Order yours today!  These would make great stocking stuffers! (Yes, I know it's not even Halloween but it's never too early to get some shopping done!) Use the code PRINCESS to get a 10% discount!

You don't even have to take my word for how awesome this company and their products are!  You can click here and see what others have to say!

But wait...! You *might* want to stay tuned because I will be GIVING AWAY a Lauren's Hope medical bracelet right here on this blog in November in honor of Diabetes Awareness Month!  How cool is that?!? 

Thanks, Lauren's Hope, for helping us stay safe and stylish at the same time!


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A LIfe Well LIved

Tuesday, October 22, 2013

Four years ago I was new to this disease.

I was trying to figure out how to raise a three year old with diabetes.  She had just started pumping.  She had just started preschool.

I needed people who understood.  I needed to know it was going to be ok.  I needed advice.

And I REALLY needed to find other mothers of little girls with type 1 diabetes.

I had started blogging over the summer.  There weren't many of us then.  Just a handful.

We became Facebook friends.  We commented on each other's blogs.  We were there for each other.  We all needed that "same".

Somehow the idea of an online chat was devised.  We figured  out how to do a chat room and had a standing Sunday night D Mama chat.

Actually, I think that's when the term D Mama was coined.  Back when there were just a handful of us trying to figure this thing out.  Back before "official" blogs.  Back when no one was reading but us!

That's when I met Shamae.

I loved reading her blog.  She had (at the time) two little girls.  Sydney and Morgan.   Sydney had Type 1.  And she was just a little older than Sweets.


She had walked this road before me.  And I needed her expertise.  I needed her humor.

I needed that feeling of "same".

Those chats and blogs and Mamas were sometimes the only thing keeping me sane!

Shamae made this awesome video a few years ago about the DOC and how sometimes we all need to be with others who understand.  Our kids were so little....!

Time passed.  Our kids were getting older.  Not toddlers anymore... but big kids!

Life happened.

The chats stopped.

We kept in touch through blogs and Facebook updates.

Shamae had another little girl, Hadlee, who was born early and with various complications.  Shamae had her own health problems.  And Morgan tested positive for Type 1 antibodies.

We may not have all been as close as we once were but we still hold a special spot in each other's hearts.

I was just laughing at one of her updates last week.

That's why the news I got on Sunday stopped me cold.

Shamae had passed away in her sleep at the young age of 30.

What?

This doesn't seem real.  How can this be?  It must be a cruel joke.

Except that it's not.

Please keep Shamae's family in your thoughts and prayers.

If you have memories, pictures, stories or anything you would like to share, please do so.



Shambo, you will be missed beyond comprehension.  It was a pleasure to know you and a gift to learn from you during a very difficult time in my life.  You will never be forgotten.

I will leave you with this quote from Shamae's blog...

"I turned 29 on June 11 (2012).   It's a big step. I feel that life is speeding by and it just doesn't slow down. Every year that I age I know it means my parents and grandparents who are still around are just another year older as well. When aging gets a little scary I just remember one of my favorite quotes, "Never regret growing older. Tis a privilege denied to many." We have had some super scary health issues over the past 2 years and I will never regret having another birthday to celebrate."

Honor Shamae by living your life fully.  By sucking up every ounce of life.  By never letting Diabetes - or anything else - get in the way.  Don't wait until tomorrow.  Live and Love fully - Today.  

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Here Comes the Sun

Thursday, October 17, 2013














The contrast is sharp. 

It was a beautiful fall day.  One of those cloudless days where the blue sky was bright and the sun was reflecting on the leaves.  The vibrant yellows and red popped off of the trees.  The air was warm but had lost summer's death grip and instead blew gentle breezes scattering leaves and ruffling the hair of the children playing. 

 One of those days you just want to suck up all the beauty and save it for later.


I was on the playground at school.  Watching my kinders happily play.

My phone buzzed.

A text from J.

"Pod alarm.  Something happened during her lunch bolus. I'm going to school to do a pod change.  FYI."

 Great.  We NEVER have pod alarms or failures.  I can count on one hand the number we've had in over two years of podding. 

"What happened?"  I ask.

"Idk.  Possibly static.  She said her new corduroy leggings were kinda staticky." 

This is why he works from home.  For occasions just like this.  Because I can't just leave.  Even though I hate not being the one to go take care of it. 

So there I stand.  Watching my kids running around and going down the slide.  They are happy and carefree. 

I notice that none of them goes down the slide with one leg slightly raised like my daughter does so that the chance of a static issue with her pump is less.  I notice that none of these kids have to test their blood before lunch or recess.  None of them are missing recess because of a disease they didn't ask for and for which there is no cure.  None of them have fingers covered in tiny bruises like my child does. 

I sigh.

I remind myself that we are lucky.  We are lucky we have incredibly technology that allows her to be as much like everyone else as possible.  We are lucky to be able to go fix things and send her back to class.  We are lucky that things like this rarely get her down.  We are lucky her attitude remains positive and upbeat regardless of diabetes.  We are lucky she's alive. 

But it still stings.  The contrast. 

I take in all the sights and sounds of this beautiful day and vow to focus on THAT. 

And I do.  Although I also check in to make sure she's ok.

It's easy (easier) on this day to push away the pain and sadness and guilt and fear. 

Fast forward.....

Today it's gloomy.

It's grey and cold.  Raindrops are falling from heavy, dark clouds.  Wind is blowing.  The branches of the trees are starting to become bare.  Today it's clear that winter is coming. 

It's one of those days where you just want to stay in bed and curl up with a warm mug of apple cider. 

It's one of those days where it's not so easy to push away all those feelings we wrestle with everyday.
 And it's not because of the weather.

It's because of this...

A friend messaged me yesterday that ANOTHER child in our school district was diagnosed with T1.  If you're counting - that makes 30.

I woke up this morning to news that on my D Mama bloggy friends now has TWO children with T1.

This disease is getting on my nerves.

I know that it's going to be ok.  I know these families are going thrive.

But I also know that getting there - and staying there - won't be easy.

There will be days like today when the world looks grey.
When your kid tells you he feels different and is having trouble fitting in.
When you see the look on your child's face when her friends go play and has to wait and test.
When the bruises on their finger tips are more pronounced.
When there are tears after a site change.
When you have to take your little one to the ER because of a tummy bug and crashing bg.
Or because of ketones and DKA.
When you see the look that means she is so low that she's not really there.
When the attitude you are getting you KNOW is due to a whacked out bg number.
When you are afraid to go to sleep because of the number staring back at you from the meter.
When you are so exhausted just keeping your eyes open is major win.

The list is endless.

This journey - this LIFE - isn't for the faint of heart.  You've gotta be tough to make it through.

Good thing for us, we are.
You are, too.

So - today I'm gonna let it rain.
I'm gonna suck up the gloom.  I'm gonna let the tears fall.  I'm gonna curse this disease.
And I'm gonna get that mug of warm apple cider!


Because I know the sun is still behind those clouds.
We can't see it --- but it's there.
Just waiting to come out and shine on us again.

I don't know how to make it better when you're in the gloom.   I don't know how to make it easier. 

All I know to do is wait for the sun.  And make sure I don't miss it when it comes back.



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This is Why

Wednesday, September 25, 2013

We are gearing up for our fifth Walk to Cure Diabetes.

Five years.

In some ways it feels like our first walk just last week.  And in others it feels like diabetes has been a part of our lives forever.

Each year it gets harder to get people involved.
Each year it gets harder to raise money.
Each year our numbers dwindle.



The "novelty" has worn off.  People are tired of us asking for money.  People are tired of hearing about type 1 diabetes.  Sweets is no longer the cute little toddler she once was.

And you know what?

I'm tired.  Doing fundraisers and organizing a walk team takes a lot of effort and energy.  Time and energy I don't have.

And you REALLY wanna know what?

Blogging takes a lot of time and energy, too.  So does volunteering for JDRF.

But we are still walking.  We have a team.  We are raising money.  We have a REALLY cool fundraiser planned for this weekend.

I'm still blogging.  I'm still volunteering.

And this is why...

An 8 month old baby girl passed away recently from undiagnosed T1D.

I get so upset when I hear about this.  NO ONE should die from undiagnosed Type 1 diabetes.  It is SUCH an easy test.  In my opinion, it should be a regular part of well child visits.  Pediatricians should know more about this disease - this epidemic - and keep it in mind when they hear symptoms that sound familiar.

I was the one who asked Sweetpea's pediatrician about type 1.  He said it was the flu.  If I had not mentioned it... If I had only told him the symptoms with out saying "diabetes"... the increased urination, thirst, exhaustion, lethargy, irritability and vomiting... We would have gone home.  She was in DKA.  She could have died.  She could have easily been a victim of undiagnosed T1D.

This is why...

An 8 year old local boy passed away from complications of type 1 diabetes.

I don't know the details.  I'm not sure I really want to know the details.  I believe is a hypoglycemic episode over night.  But I'm not sure.  And I'm not sure, for me, the gritty details matter.

What matters is that an 8 year old child died from this disease.

Type 1 Diabetes kills.

It kills now.  It kills even though.  It kills in spite of.  It kills because.

You don't have to be old.
You don't have to have lived with the disease for years.
You don't have to have poor control.

It doesn't matter if you check religiously.
It doesn't matter if you are active and healthy.
It doesn't matter if you do everything right.

In spite of good control...
In spite good health...
In spite of meters and pumps and cgms...

Diabetes kills because it can.
Diabetes kills because that's what it does.

That's why.

Even though people aren't as interested...
In spite of the fact that people are tired of us asking for money...
Even though our walk team is a third the size it was the first year...
In spite of how tired I am...

WE ARE WALKING.

and

WE ARE RAISING MONEY.

Because people are dying.

Every day.

People like Sweets.

And I may not be able to control diabetes... But I am going to do everything in my power to help us find a cure.

I'm not naive enough anymore to think that it couldn't happen to us.  That it won't happen to us.

It can.

And my choices are to ignore that reality.  To put my head in the sand.  To pretend this disease is no big deal.

I can live my life in fear.  I can let my fear keep her from living.

Or...

I can refuse to let our lives be ruled by fear.
I can get involved.
I can talk about T1D anyway.
I can ask for money anyway.
I can walk anyway.
I can volunteer anyway.
I can advocate anyway.

Because I don't have the luxury of pretending it's nothing.
Because I don't have time to mess around.
Because I can't let myself get distracted.

Because people DO care.
Because every little bit helps.
Because no donation is too small.
Because no team is too small.

Because it matters.

Because people are dying.

Because it's time for cure.

This is why.



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Destination ME: Eating the Elephant

Sunday, September 22, 2013

Hello, Friends!

So I missed last week.  Did you notice?!?

I had every intention of blogging about last week's progress but life just got in the way.  The beginning of the school year is crazy.  I worked every night from the time I got home until the time I went to bed (on time, thankyouverymuch).  Only taking breaks for dinner and Sweetpea's homework.  And to help coach cheer practice.  And to take her to dance class.

Even though I did not make it to the computer, that does not mean my goals went into the gutter.  Nope!  I'm happy to report that I did quite well!

My last goal was to drink more water and less Coke.  Over the past two weeks I have gotten that done! I have had at least 100 ounces of water a day.  If not more.  And I've cut down to one Coke.

It hasn't been perfect.  I definitely drink a lot less water on the weekends.  I really need to carry my cup around with me like I do at school.  And there were days where to say what I drank was "one" would be pushing it.  But overall - I'm pleased!

I've also done well with the going to bed earlier and getting more sleep thing.  There have been nights that I've been up working until midnight.  That's just the way it is right now.  But mostly, I have gotten to bed earlier and I feel SOOOOOO much better when I do!

It was horribly hot and I'm glad I didn't try to make an exercise goal because that would not have worked.  There were days where my non airconditioned classroom was over 100 degress.  One day I actually thought I might pass out in the middle of the room.  I'm seriously hoping that is OVER for this year.

So.... this week's goal....

I've been going back and forth between a food goal and an exercise goal.  I can not decide.  I actually had decided on a food goal and not 30 minutes ago changed my mind.

Why?  Well.... I really don't want to do either!

I need to start tracking what I eat.  But honestly... what I NEED is to get my body moving.  I need to do it for ME.  To have some time for ME.  To clear my head.  To help get rid of stress and anxiety.  To make myself feel better and sleep better.

So, my goal is a little of both.

I am gong to exercise at least twice this week.

AND I am going to really try to be conscious about what I'm eating.  I'm not going to go as far as tracking.... yet.  That's coming.  Just keep making small changes.  Like less Coke.  Like not going out to lunch every day and instead packing healthy lunches.  Like not sitting on the couch and eating after Sweets has gone to bed!

So that's it!

You know, sometimes I wonder if my little tiny goals are silly.  I mean isn't a goal supposed to be something like "I'm going to climb Mount Everest?"

Thing is... I can't climb Mount Everest.

I don't have time to climb Mount Everest.

And I know that if I say that's what I am going to do and then I can't get it done the way I think I should, I'm going feel like a failure.  And I'll just quit.

So my goal is climbing the stairs.  Cause I know I can do that.  I can make that happen.

And once I do it, I'll add another flight.  And then another.  And before you know it, I'll be at the top.

The top of what.... Well, that remains to be seen!  That's the fun part!  Not really knowing where this journey will take me.

So I'm going to keep making these little goals.  And I'm going to keep getting it done.  And I hope you will, too!

It reminds me of that saying... "How do you eat an elephant?  One bite at a time."

(WARNING:  Do not Google "Pictures of How to Eat An Elephant.  There are some disturbing pictures.  Just sayin')

So join me... One bite at a time... Let's get this done.






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Destination ME: Week 2

Monday, September 9, 2013

First, I want to say THANKS for the awesome, encouraging response I got to my Destination ME post!  It's really wonderful to know I have support as I tackle this new, D not exactly related challenge!

Last week I said that my goal was going to be simple.  I wanted to get to bed by 11 pm.  So... how did I do?!?

I did really well!  The first night I was in bed by 11:15.  Not too bad.  But after that, I was in bed by 10:30!  Not asleep... but in bed!  That still gave me an extra hour or so of sleep and THAT was awesome!  Even when I was getting up a couple times a night to do battle with D, I still felt better the next day!

I am DEFINITELY going to keep shooting for an 11 pm bedtime.  Actually, I think I do better if I shoot for 10 and then if it's 10:30 or so I'm still ahead!

This week I've gone back and forth about my goal.

Then I looked at the weather and my decision was made.

I had thought about making an exercise goal this week.  However, the temperature is going into the mid 90's this week.  I work in a school WITHOUT AIR CONDITIONING.  So that means it's in the 100's in my classroom.  No lie.  No exaggeration.  Me and 29 Kinders all sweating to death.

On days like today, it's all I can do to get home.  Even now, at 9pm, my body is still HOT.

SO.... my goal this week is WATER.  I need to really up my water intake.  Especially since it's so hot!


This was taken as part of last year's November Photo A Day Challenge... Sweetpea's Fav Drink!


I actually made this kind of a mini goal last week.  I have been drinking more water... now I want to drink EVEN MORE.  I want to make sure I'm getting enough every day.

AND.... (and this is the kicker) I am going to seriously cut back on my Coke intake.

I'm addicted, folks.  I love the stuff.  Some people drink coffee.  Not me.  I can't stand the taste.  But I can not live without a nice, cold Coke!  Especially if it's in a foam cup from McDonald's!  And I'm not even talking Diet.  No way.  I want the REAL STUFF.



I'm not going cold turkey.  I don't think I could handle that (nor could my sweet family!).  Just cutting back to no more than ONE a day.  And if I can do it, not even one.

I am never going to give the stuff up all together.  I just love it too much.  But if I have it on the rare occasion - that's what the long term goal is!

I know I need this to be healthy.  But I also want to do this to be a good role model for Sweets.  All that girl drinks is water.  She doesn't like soda.  Doesn't really care for fruit punch or those juice pouches.  And I'd love it to stay that way!  But when she sees her Mama always sucking on a Coke... not a good example I'm setting for her.

I'm going to keep track of how many ounces of water I drink per day (and how many cokes!) and I will report back next week!

I want to give a big SHOUT OUT to Lora, Jen, Haley, Lauren, and Brandy for joining me in this challenge and linking up!  I hope you will check out their journeys and encourage them as well!

To learn more about this whole "Destination ME" thing, check out my first post about it HERE.

What are you waiting for???

 JOIN US!  Come on... you know you want to!!  Join in on the fun!  What's YOUR goal?  Nothing is too big or too small!  Write a blog post and link up... or if you don't blog, just leave your goal in the comments!  It's much more fun to do this with friends!




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Thirty

Sunday, September 8, 2013

Thirty.

No, I'm not talking about how many kinders are in my class this year (although that IS the right number...).

I'm talking about the number that popped up on the meter a few weeks ago when we tested Sweets.

30

That's definitely an "oh shit" moment.

I take pictures of lows.  Later - not in the moment. I don't know why... Just to prove it really happened?

Especially if you have just given her insulin for food.

It was one of those perfect storm situations.  She had been treated for a low and her bg had come up.  She had a snack and we waited until after she was done to bolus... Just to make sure.

Everything looked good.  Insulin was given.

Dex was in start up mode.  So he was no help at all.

Not five minutes pass...

"I feel low".

When she feels it, it's never good.

It was a bad one.  One of those not easily forgotten lows.  The kind that leaves all of us shaken.

We gave her smarties.  She started crying.  She was having trouble eating them.

I could tell by her eyes.  She wasn't really there.  They were kind of glazed over.  She was talking - but she wasn't with us.  Not completely.

I tried to get her drink juice.  She was trying.  But it wasn't easy.

She was still crying.  She wanted to lay down.

She was getting combative.  She didn't want the juice.  She wanted us to leave her alone.

Finally, I had to pull out the big guns.  I said "Sweets... Look at me.  Can you drink this or not?  If you can, you've got to do it NOW."

"OK" she cried.  And she tried again.  And she was able to get most of it down.

She knows what that means.  It's the unspoken.  I don't have to tell her I'm going to get out the glucagon.  She just knows.  She knows if she can't or won't down the sugar then that's going to happen.

It's not a punishment.  It's reality.  She knows she needs it if she can't eat the sugar.

It works for us.  It's the silent - "Yes, it's THAT bad.  You are THAT close.  You are going to either pass our or have a seizure or both.  So if you can, you've got to do it NOW. No more taking your time.  No more resting in between bites or sips.  You've got to do it NOW."

She wanted to go to sleep.  I wouldn't let her.  I had her laying against me.  I was stroking her hair and rubbing her back.  It wasn't but a few minutes and I could see the fog lift from her eyes.

She was back.

It's the strangest thing.  I have a hard time explaining it.  Putting it into words.

But there are times when I just know she is not there.

Unfortunately, I guess it comes from experience.

We had another one just last week.

I don't know whether these lows are worse or if she's just feeling them more.  I can SEE it more.  SEE it affecting her.  I can tell she is at that tipping point...

It's scary as hell.

Of course, I am calm, cool, and collected throughout.  I hold it together really well.

I guess that comes from experience, too.

It's later when I feel like puking and can't stop shaking.

She doesn't like those lows.  She doesn't like feeling that out of control and that close to losing consciousness.

I don't like them either.

For the same reasons.

D takes away my control.  It makes me feel helpless.  And while we may be getting used to it....

I will never like it.


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Destination ME

Tuesday, September 3, 2013

This post has been a long time coming.

I'm swamped with back to school stuff that's calling my name.  But I can't wait any longer to write this. It needs done.  Now.

This is not the most comfortable thing to write.  It's not the easiest subject.  But I'm doing it anyway.

Partly because I need the motivation and accountability.  Partly because I know that if I feel this way, someone else does too.

So where do I begin???

Me.

Way back... Like 10 years ago.  I loved to exercise.  I did Jazzercise or walked on the treadmill every day.  I really wanted to become a Jazzercise instructor.  I ate healthy.  I WAS healthy.

I got married.  We moved.  We had a baby.  There was no time to teach Jazzercise in addition to a full time job and a baby.  But I still went to class.  I was dancing and walking until almost the day before Sweets was born.  And I was back at it not long after.

But it was harder.  After working all day, I wanted to spend time with my baby when I got home.  I wasn't exercising every day anymore.  But I was still pretty healthy.  And the pregnancy weight dropped off quickly.  All but 8-10 pounds.  I was pretty much ok with that.  I thought that once she was a little older it would be easier to find time to exercise.

But that didn't seem to happen.  I quit Jazzercise when we moved.  I tried to go back a time or two... but it never worked.  Class was too far away or at dinner time... It was just too hard.  I tried to get on the treadmill consistently.  It was really hard when she was so young.  I was consistent at all.

But I kept thinking... just a little bit longer.  When she's just a little bit older.

And I was almost there.  I was working out more regularly than ever before.  I was feeling good.

And then.... diabetes entered our lives.

And all the progress I had made went up in smoke.

I had a three year old with type 1 diabetes.  I hardly slept.  We ate at fast food restaurants a LOT at first because there was nutritional information and I just couldn't handle cooking, carb counting, and holding down a screaming toddler to give her a shot.

I don't think I really need to tell you that I was not exercising.

So... stress, lack of sleep, poor diet, no exercise.... I gained a lot of weight.

And I didn't even notice.  I wasn't looking in the mirror.  Not really.  I was just trying to survive.

I would come home after a long day at school and want to spend time with Sweets.  I almost always bring work home with me.  So dinner.  Time with my girl.  Work.  Exhaustion sets in and there just isn't room for anything else.

Last year, I was finally, once again, finding my way back.  Sweets was older.  D was more "normal" and had become just another part of our lives.  She was not going to my school anymore which helped me get more done and have less to bring home.  I was ready.  I had a plan.  J would exercise during the day and I would have time once I got home.

And then he had a heart attack.

I was totally thrown for another loop.

He was making sure he was eating healthy and exercising.  But not me.  I just could not get it together. I felt like I was barely holding it together for everyone else.  Taking care of everyone else.  And there just was not time for me.

I gained more weight.

The past year has been mostly a mental block.  J would encourage me to exercise and eat healthy.  But I just couldn't figure it out.  How in the world do I work all day with needy five year olds, take care of my T1 daughter, take care of my post-heart attack husband.  Keep up with the house.  Take Sweets to lessons and practice and actually COACH her cheer squad.  Keep on top of school work and lesson plans.  And actually have any time at all for me?

Last year, I didn't.  I couldn't.

But it is time.

It's time for ME.  To take care of ME.

I know that I will never be the girl I was 10 years ago.  How could I be?  I've seen too much and been through too much.  And honestly, I don't want to be her again anyway.

But I don't want to lose her completely.

I've got find a way to keep some of her and add those parts to who I am now.

This is how I'm going to do it.  Destination ME.  This is my journey.

It's not all about weight loss.  Do I want to lose weight?  Yes.  Am I going to do weekly weigh ins and post results?  No.

It's more than weight.  It's eating healthy - not to lose weight but to BE HEALTHY.  It's getting enough sleep.  It's relaxing.  It's doing the things I used to enjoy and never do anymore.  It's reading.  It's crafting.  It's exercising.  It's taking care of my body.  And my soul.

So I'm going to try to do a weekly post called Destination ME.

I'm going to come up with a goal for the week.  It may be small.  It may be big.  It may have to do with diet and exercise.  It may not.

I don't know what this road is going to look like until I start walking.

But I hope I won't be walking it alone.

If you feel the way I do...
If anything I've said resonates with you...
If you need to find yourself again...
If you need to start taking of YOU...

Join me.

You don't have to do my goal.  Come up with your own.  Write your own post and link up here.  If you don't blog, just leave your goal in the comments.

Let's help each other get there.  To where ever THERE may be.

I'm starting small.  This is my first week with all 30 of my kinders and I KNOW I am going to be flat out exhausted and have LOTS of school work to do each night when I get home.  So my goal is SLEEP.  I tend to stay up waaaaaay too late.  Add to that overnight checks.  Tired Mama.  So my goal is get in bed with all electronics OFF by 11pm.  Earlier if possible.

That's it.  That's this week's goal.  I want to start getting more sleep.  I think it's going to help me with the exercise and eating healthy.  I think it's going to make me less of a grump!  I need it.  So that's it.  That's my goal for this week.  I'll let you know next week how I actually DO with this goal.  And seeing as though I was still working at midnight last night.... Ummmm, yeah.

So come on!  Join me!  Let's do this!

Destination ME.

Destination YOU.



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The Unexpected Gift: Thoughts on loss and friendship

Sunday, September 1, 2013

So maybe I'm feeling a little emotional this weekend.  Maybe I should tell you that upfront.

A year ago this weekend, the world tipped on it's axis for a while.

A year ago this weekend, my husband had a heart attack.  My thin, active, nonsmoking, 40 year old husband.

I'm used to dealing with hospitals for Sweets.  This was different.

And while I was sitting next to his bed in ICU, I learned that my dear friend Meri's husband had passed away after a grueling battle with cancer.

We are not that old.  We have young children.  We have children with diabetes.  This kind of stuff is supposed to happen to old people.  Other people.  Not us.

But if diabetes has taught me anything, it's that none of us are immune to anything.  So really, I shouldn't have felt as rocked to the core as I did.

Now it's a year later.  My husband is healthy and doing well.  My sweet friend is learning to live a different life than what she had planned and missing her husband every step of the way.

My heart hurts.

It never really gets easier.

But this post isn't about grief or disease.

It's about friends.

If you had told me four plus years ago when Sweets was diagnosed that I would make some of my very best friends because of diabetes I would have thought you were insane.  And my response probably would have been, "Who Cares?  How is that going to help me raise a very young child with T1D?"

I had no idea.

Since that day, I've found an incredible group of women who have become some of my very best and closest friends.

Some of them I have never met in person.

Some of them I have.

Some of them I've only been able to spend a few short hours with.  Some of them I talk to every day on the computer.

Some I text all day long.  And send funny pictures to.  And vent to when things aren't going right.  Or when they are.

Some are there in the middle of night when we are both awake.  We keep each other company.

Sometimes it has nothing to do with diabetes.  Sometimes it does.

They just get it.  We don't have to live next door to each other to be a part of each other's lives.  To understand.  (Although it's nice when they do!)

If I cold take away Sweet's diabetes, I would.  In a heartbeat.

But I wouldn't give up the wonderful friends I've made along the way.

They are, without a doubt, the best, most unexpected gift!

To my girls, thank you for being there for me!  I couldn't make it without your love and support.  And it is my honor to be there for you!  No matter how many miles separate us!

To my readers, I urge you to get connected.  The DOC is amazing.  Reach out.  Support and love is out there.  Just waiting for you!  You don't have to walk this path alone!



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CURRENTLY...

Sunday, August 25, 2013

One more day!  One more day and Sweets starts second grade!

Holy cow!  Where did the time go?!?

She's ready.  And so am I.

Last week we took all her supplies to school.  She got to pick her new bin in the clinic to keep all her diabetes supplies.  She got to visit her classroom and meet her new teacher!  We got the opportunity to talk with her new teacher about diabetes and go over her care plan with the nurse.

I'm feeling much better!

I think we've got this!

Will I still worry?  Of course I will!  I'm her MOM.  That's my JOB!

But I'm mostly really excited for her to start a new year and learn new things and just be a normal kid.  I don't take for granted that those things are a big deal and we are blessed she has that opportunity!

So... that's where I am and what I'm doing!  Right now our whole world is focused on "Back To School" for Sweets AND for me!

I found this awesome little thing called a "Currently" on a teacher blog, Oh Boy, Fourth Grade!  I thought it was super cool so I wanted to join in her linky and make my own!  Here it is...


I think it's pretty self explanatory...  But I can add more... (Of course!)

I'm also loving that I am now "officially" a JDRF mentor (although I suppose I've been practicing without a license for a while) and I'm excited about getting that program up and running in our area.  

I'm thinking that I am sure I have gotten a few grey hairs over this back to school adventure this year.  And I'm not just talking about Sweets.  My classroom has had a few issues and I'm about to lose my mind over it!  I like everything to be perfect!    

I'm also thinking that having a fall JDRF walk is cruel for a teacher.  I am so wrapped up in school that I haven't yet sent out our walk letters.  And I have work to do on our fundraiser.  More on the later...  But time is getting away from me.  

Not only do I need more time... I need my D Mama's (and Papa's and PWD's) to tell me it's going to be okay.  I need to keep seeing your back to school pics on Facebook and hearing your success stories.  I need to know I'm not alone!  

The B2s is "Back 2 School".  Our top three must haves are Juicy Juice (people think we have some kind of problem with the amount of that stuff we buy...), Information sheets that I've been working on to give to her teacher and the special area teachers who will be working with her (see link in school stuff tab above for an idea of what I'm talking about), and tissues in case I get weepy and my phone in case there is a problem.  Or for when J lets me know what is going on which he has orders to do!

If you think it Currently is as cool as I do, head on over and check it out!  You can make your own, too!  She puts directions in her post.  The teacher bloggy world is different from the DOC but Hey - it still works for us!

And I want to know!  What's YOUR currently?

Here's wishing you a wonderful "Back to School" experience!  Let's all just take a deep breath, eat some chocolate and get through this together!


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Walking the Line, Rainbows, and Pain: Back to School with T1D

Tuesday, August 20, 2013

I often feel like life with diabetes is like walking the line.

We don't want to be blood sugar to be too tightly controlled yet we don't want it uncontrolled.
We want people to understand this is a life threatening disease and yet not treat our children any different.
We don't want our management expectations to be too strict nor be too lax.
We want our kids to understand the seriousness of the disease and not let it hold them back.
We want people to know people with T1 can do anything and yet we want them to fund research for a cure.

These are just a few examples of the line we walk daily.

Some days, life with T1D rolls off my back like water off a duck.

Today is not one of those days.

Today I feel more like a porcupine.

I'm getting ready to send Sweets back to school.  Back to School with T1D.

I feel sick.

And it makes little sense.  Because I truly believe that she will be taken care of.  Our nurse is coming back and I trust that she will continue to do a great job with Sweets.  I believe that her teacher is going to do a great job as well.  Unlike last year, we're going into this with experience.  I SHOULD be feeling good.

The thing is - it doesn't make sense.  Emotion rarely does.

I'm feeling uptight.  Worried.  Nervous.  Overwhelmed.

And angry.

So here's the line.

I have always felt that it's important to acknowledge how you feel.  To accept the good and the bad.  Because I believe it's the only way through this.  The only way to stay sane and healthy and moving forward.

I am so grateful for our wonderful school nurses and teachers.  I am thankful that we have supplies like the Omnipod and Dexcom and even a blood sugar meter and lancet device.  I do not take for granted that she is alive and healthy and able to chase her dreams.

But...

I'm angry, too.

I'm angry that I have to make information sheets to give to school personnel so that they know how to take care of my child.   I'm angry that our school shopping involves prescriptions and trips to the pharmacy.  I'm angry that a new school year also means a new plan that involves time out of class to keep her healthy and safe.  I'm angry that a new class means new kids who may or may not be accepting of her different needs.  I'm angry that I have to explain that diabetes can affect her ability to learn.  I'm angry that our back to school list involves orders from her doctor.

I'm jealous of those people who can run to Target and pick up their child's school supplies - getting what's on the list - and be done.  How nice would it be if getting the right kind of binder was our biggest worry?  How nice would it be if we could send her off to school without a care (or at least a worry about her having a severe low and no one knowing what to do)?  How nice would it be if plans didn't need to be made around lunch, recess, gym class, and special treats?

That's a life we will never know.

*sigh*

So what are we to do?  How do we keep those feelings from overwhelming us?

Well, for me.... I let myself have a little pity party.  I let myself yell or punch things.  I exercise it out.  I sleep it out.  I blog it out.

And then I move on.  I remind myself of how blessed I am.  And how lucky we are.  And I try to focus on that.

(I think I need to write this on my forehead!)

Sometimes... like NOW at the start of the school year... I may have to remind myself every day.

That's ok.

As long as I don't let that anger and sadness get the best of me...

And as long as I remember that you can't have a rainbow without a little rain!




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For Anyone Whose School Supplies Involve a Trip to the Pharmacy

Monday, August 12, 2013


** Tonight at 9 pm EST Wendy Rose and I will be LIVE on the air with Lorraine and Bennett for DSMA Rents Live!  We will be discussing Children's Congress and more! Check it out HERE!**

Fourteen Days.

In fourteen days Sweets is starting second grade.

She's ready to go back.  She's bored.  She needs something to do.  And in that respect, I'm ready for her to go.

BUT... When you are the parent of a child with diabetes, back to school often strikes fear in your heart.  

Because it's just not that simple for us.

We went and bought the supplies on Sweet's list.  She had fun picking out pencils and binders and stuff.  But I couldn't help thinking... what would it be like if that was all it took to get her ready to back to school?  How easy would it be if our biggest concern was the getting the right color folder?

That's not our world, though.  Is it?

We have a very different kind of supply list for our kids.

We pack supply boxes full of test strips and meters and alcohol wipes and glucose tabs and syringes and insulin and extra sites and extra pods and adhesive remover and lancets and teagaderm and juice boxes.

Just the thought of all the forms and plans and teaching and meetings and uncertainty and crazy numbers and the oodles and oodles of supplies.... it makes me sick to my stomach.  

I think it's the uncertainty that a new year brings.  We have to train a new teacher.  Will she be understanding?  Will she take T1 seriously?  Will she help Sweets reach her potential while not letting Diabetes hold her back?  Will she keep her safe?

My guess is yes.  I have confidence in that.  I truly do.  

But I think it's the putting yourself out there that is hard.  I HATE having to ask for special treatment.  Like a meeting before school starts to go over diabetes and our plan.  I do it because my daughter needs me to do it.  But how I wish I could just meet the teacher at "Meet the Teacher" night like everyone else.  

Sometimes we get a bad rap.  Us D Mamas and Papas.  

People call us overprotective.  Demanding.  Helicopter Parents.  Difficult.  Over the Top.  High Maintenance.  Picky.  High Strung.  Add your favorites here...

We don't want to be that way.  

We aren't TRYING to be difficult.  

We just want what's best for our children.  We want our kids to have the same opportunity to succeed as every other student.  And we want to keep them safe and healthy in the process.  

And for us, it just takes more planning than your average student.  

We'd rather go with the flow like everyone else.  Truly we would.  

But we can't.  



Our kids rely on us to be their advocates.  To speak for them.  To be their voice.

We know most people don't know anything about Type One.  After all, we didn't know much either... before.  We know what our kids look like and act like when their blood sugar is low.  Or high.  Or dropping fast.  We know that our kids may not speak up for themselves.  They may be embarrassed to say anything in front of their friends.  They may not want to draw attention to themselves.  They may just not want to stop whatever it is they are doing.  

So we speak up.  

So we make plans.  We work on 504 plans and orders from the endocrinologist.  We make direction sheets for the cgm and pump.  We print out directions for how to take care of children and what to look for when things are "off".  We make copies for every teacher they will have.  We ask for meetings before school begins.  And we take a bag of supplies to school so large it looks like we might be moving in.  

We ignore our nerves.  We ignore the stares.  We ignore the comments from others about all that we do to get our kids ready.  And we definitely ignore all those people whose back to school list does not involve a trip to the pharmacy!

We just do our thing. 

We do this because we are their parents and this is our job.  

We do this because we love them.  

                 (I know it's not specifically for D Rents but it fits pretty well and like the message!)

Now for my public service announcement....

PLEASE promise me that you won't let anyone talk you out of making a plan for child - whatever that plan might entail.  If YOU feel like it's something you and your child needs, please pursue it.  I get so upset when I talk to friends who have had horrible experiences with schools who are not willing to work with families to keep their sweet ones safe.  Because I KNOW it doesn't have to be that way.  We have been blessed with schools that are happy to work with us (and I still feel get all worried and uptight, y'all!).  I know what it SHOULD look like.  Compromise may be necessary.  That's ok.  But what's not ok is a refusal to keep your child safe and healthy.  

This week I will be working on all those fun plans and information sheets for Sweets.  I will post the new stuff as soon as I have it done!  You can check out what I already have (504 plans, bg flow charts, directions, and more) on my School Stuff tab above (or click HERE).  Feel free to use those things!

On Thursday, there will be a FREE Back to School Webinar from 7-8 pm EST presented by the ADA.  For more information on the webinar and other resources that the ADA's Safe at School program provides, click HERE.  

We can do this!


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The Outsiders: What IS Normal?

Friday, August 2, 2013

We've been doing this diabetes thing now for a while.

We've got a routine down.  It works.  We roll with it.

Some days are harder than others.  Sometimes things don't work.  Sometimes we SWAG wrong.  Sometimes there's drama over a site change or something.  Sometimes D is more of a pain in the ass than others.

But any more... not much ruffles my feathers.  I'm calm.  I feel like I can handle most anything D throws at me.  I am used to this life.  It is now our new normal.

No- scratch that...  It's not our new normal.  It's just our life.

It's what we know.  It's ALL Sweets knows.

And we forget...

Our life is NOT everyone's normal.

Awesome D Mama Alexis and I were just talking about this.  How we forget...

We forget they don't know.  They don't get it.  They aren't used to what living our life looks like.  The things we have to worry about and consider just don't don't even enter their minds.

And we are glad for that.  We don't want them to know like we do.

But sometimes it hurts, too.

It's normal for us to have our kids attached to medical devices.  It's normal to have to stop an activity to test and treat.  It's normal to plan meals with extra thought.  It's normal to count out and measure everything they eat.  It's normal to wake up at night to check.  It's normal to test and see some blood many, many times a day.  It's normal to have a bag of medical supplies and insulin in our fridge.  It's normal to talk about basals and bolusing and how many fries she ate and when the best time to restart Dex would be given activity and peaking insulin.

We forget that to others, this is different.

My kid can't just eat when she's hungry.  She can't just eat out of the bag of Goldfish crackers or the bowl of popcorn with her cousins.  She can't swim for hours without getting out and testing and sometimes having a snack.  Sometimes she has to stop and eat even if she doesn't want to.  Sometimes fun times are halted because she has to change her pod or test her blood sugar.  She can't go off with her older cousins without one of us because they don't know what to do.  She can't just jump in the pool without a care.

All this stuff... it's not really that big of a deal.  In the scheme of things... it's just not.

After all, it's our life.  It's what we know.  It's just what we do.

But it becomes a big deal when no matter how hard you try, your child knows things are different for them.  And they know why.

Sweets was so little when she was diagnosed.  SHE thinks it's crazy when people do just eat out of the bag.  Or when they just eat without asking and testing first.

But she's not stupid.  She now knows it's what most people do.  She knows no one else in our family has diabetes.  No one else wears a pump.  No one else checks their blood sugar before they eat.

She knows she is the one who is different.

And, at least right now, 98% of the time it does not bother her.

She has her moments where she may huff and puff but soon she's off to the next thing and the moment has passed.  There are times when she expresses something... more.  But those are few and far between.  At least for now.

It bothers ME.

98% of the time, I just roll with it.

But sometimes it smacks you in the face.  And it stings.

All of the "it's not fair".  The "why her?"  The "if only it was me".  The "I hate this".

It rushes back.

And there you stand.

Watching your precious sweet one testing while everyone else is in the pool.  Watching her sit out and treat a low.  Watching her watch everyone else.  Wondering if it's bothering her.

And the tears come.

Once again.

Because it's NOT fair.  Because you DON'T want this for her.  Because you wish her worries could be the simple childhood worries of her friends.  Because there is nothing you can do to take this away.

Because you feel so alone.  Sometimes, even surrounded by family and friends, you feel like an outsider.  You feel scared because you are the ONLY one who knows how to care for your child,  And you feel angry.  Because it shouldn't be this way.

And then it's gone.  For me, sometimes it goes as quickly as it comes.

The air gets knocked out of me.  And in the next breath, I'm ok.

I'm back to my normal.  I'm back to my every day.  I'm back to solid ground.

The more time passes, the easier it is to get to that place of "ok".  It gets easier to pull it together and remember my life is pretty awesome.  Even with diabetes.




** Some of these truths are mine.  And some belong to Alexis.  And some belong to us both.  I've weaved our stories together.  We are "Same Same".  And I have a sneaking suspicion that we are not alone in these feelings.  That may be the best part.... we are NOT alone.  Does it matter that we are on opposite sides of the country?  Nope.  Texts go really fast.  So does facebook.  And email.  And it grounds us.  When you are feeling like this - know you are never alone.  And you can bet there is another Mama or Papa feeling the same thing.  Cling to each other until you get your footing again.  Support is what we do best!**


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Learning from the Past. Moving Toward the Future. Make a Difference.

Monday, July 29, 2013

Yesterday, while perusing Facebook, I saw some "This Day in History" posts that on July 27, 1921 insulin was first isolated by Frederick Banting and Charles Best.

This is a big deal.

Every time I hear something like this, I can't help but stop and feel totally, completely, overwhelmingly grateful to these men.

Before insulin....

I can't event think about before insulin.

I recently read a book called Breakthrough: Elizabeth Hughes, The Discovery of Insulin, and The Making of a Medical Miracle.  It was fascinating.  And gut wrenching.

The story from the book that sticks with me the most is how in the first treatment center the children were kept on a very strict diet.  At the brink of starvation.  They were not allowed to have pets.  One boy, with some string pulling, was permitted to have a bird.  The boy died. He ate the bird seed.  This story makes my breath catch in my throat at the hopelessness and pain and torment of what it was like to live with T1D back then.

Last summer, we visited a Titanic exhibit.  I've always been fascinated with the Titanic and Sweets has inherited that curiosity as well.  When you begin the exhibit, you are given the name of a passenger.  At the end, you can look to see if you survived or perished.

Sweets kept asking over and over if she survived.  And I couldn't help but think about what her life would have been like 1912.  Had she developed diabetes then...  If she was 6 years old in 1912... Well, she wouldn't have been 6 years old.  She wouldn't have seen 4.  Diabetes would have taken her life before then.  That was the reality of life back then.

I suppose it's morbid to think about that.  I can't help it.

I just always try to focus on how grateful I am for the world we live in now.

I am so thankful that we have insulin to keep her alive.  New technology to keep her safe and healthy.  Supplies that make living life with diabetes much easier.

Of course, it doesn't go unnoticed that life is not like this everywhere in the world today.

When I think that there are still children dying in this world because they don't have access to insulin...
Walking for days to get the medical care they need... Having to choose between eating or getting supplies...

My heart hurts.

It's not just in third world countries that this happening.  It's happening where we live, too.

I know this isn't the most upbeat post in the world.  But the reality is that it's not the most upbeat topic.  It may not be fun to talk about.  It may make us uncomfortable.  It may make us wonder what we can really do help anyway.  And if anything we could do would really matter.

I'd like to believe that we CAN make a difference.

It may not be November when we hear about diabetes awareness all month long.  But it's always the right time to take action.

So I'm going to throw this out there.

Take a minute.  Take a few dollars.  And DO something.

Here are some options...

Life For a Child - help a child for as little as $1

Sign up to become an advocate for JDRF - do not be intimidated... this easy and takes only a few minutes!

Call your Members of Congress and encourage them to renew the SDP - click here to find the number and exactly what to say!

Email your Members of Congress about critical diabetes issues - Click here for options and many templates just waiting for use!

Check out JDRF.  Become a mentor.  Participate in the Ride to Cure.  Or the Walk to Cure.  Attend a Gala.  It's all so much fun you won't even know you're working for the cause!

Do a little research and see how you can help in your own community.

The options are really endless.

Which is good - because the END of diabetes, the END of suffering from this disease, is what we're working towards.  Not just for us - but for the entire world.

The past motivates to turn my thankfulness into action.  The future motivates me to do whatever possible to help my daughter live a long and healthy life.  The present is the time to DO SOMETHING.

Wanna join me?

** Please link any ideas or opportunities to get involved that you know of!**


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Children's Congress: Awesome, Exciting, Inspiring!

Friday, July 19, 2013

How can I possibly put into words what Children's Congress was like?

I can't.

So just know that no matter what I end up saying, it is not going to compare to awesomeness of the actual event.  Like in no way.

But I'm going to do my best to bring it to life for you.  Because - IT.  WAS.  AMAZING.

Day 1:



Sweets and I ended up being delayed out of our airport and coming thisclose to missing the Promise Song with Crystal Bowersox.  For reals.  We were over an hour late leaving, we got to DC and sat on the plane, we had to walk down steps from our plane to a bus - in the POURING rain, wait on that bus to get us to the terminal, wait on our luggage.  I was all Amazing Race in the cab.  "Get us to the JW Marriott AS FAST AS YOU CAN!

Sweets ended up throwing her CC t-shirt on over what she wore and was quickly ushered in to get in her line to sing.  I was a still a little harried from all that morning excitement so walking into this big ballroom with tons of cameras and lights and a stage and all these parents and kids... was overwhelming.

As I stood there, looking around and taking it all in I thought to myself, "This is real. This is a big deal."

It was to my advantage in some ways to have a little one.  She was in the front row! I ended up getting to the other side and standing right behind the cameras so I could see.  And wow.

All these kids in their blue t-shirts.

And then they started signing.

I'm not sure anything can prepare you to hear 160 kids singing that song.  It was pretty amazing.

After they practiced a few times, Crystal came in and sang it with them.  And Lucky Sweets!  She was just three kids over from Crystal! (Look for her bow!)

Look for the bow!



I wondered who the cuties were that she was standing next to.  Later, I learned that the boy next to her was Walker, Ray Allen's son.  When I told Sweets she said, "Oh.  So that's why the other boy kept asking to meet his Dad.  I thought it was just because he was SOOOO tall!"



During the song, I was texting one of my blogging buddies that I have known for YEARS - but never met in person!  After the song we did a beeline for one another!  How great to share this experience with a good friend!

Sugar and Wendy of Candy Hearts!

Then it was off for state delegate pictures with Crystal Bowersox and Gary Hall!


After that, it was time for the opening dinner!  Sweets was thrilled to see hot dogs on the menu and I was thrilled to see carb counts in our folders!

During the dinner, each delegate got up on stage to introduce themselves.  It was so cute!



After dinner, Sweets immediately made some friends her age.  These girls spent the some time doing cartwheels and playing together!  After a long day of waiting and being still, they really needed to get some energy out!


Day Two:

The second day was the role models town hall!  Sweets was excited to meet some of the T1 celebrities (so was I!).  On the panel was Aaron Kowalski, Ph.D., chef and restaurateur Sam Talbot, broadcast journalist and writer Leslie Adkins, sportscaster and T1D dad Brian Kenny, Indycar driver Charlie Kimball, and actress Mary Mauser.



 I thoroughly enjoyed listening to the celebrities!  The kids were able to ask them questions and they talked about living with T1 and accomplishing great things with the disease!  After the town hall, the celebs hung around to take photos and sign autographs for the kids.  They were all so gracious!

I had to laugh at Sweets.  A lot of the kids brought pins from their state or other items to hand out to the other delegates.  I could not find reasonably priced pins so we made little cards with her picture on them and her email so she could stay in touch with new friends.  That morning at breakfast, she went around with Sugar passing out their things.  When it was our turn to get a picture with Charlie Kimball, Sweets handed him her card.  He said, "Sweets!  You already gave me one of these at breakfast!"  I was like - "You already met Charlie?"  And she was all, "Uh, yeah Mom.  I've talked to him before.  He was really nice."  Oh, well ok!

But that's exactly how ALL the celebrities were!  After meeting them, the kids felt like they were buds. Sweets would say, "HI CRYSTAL!!!" every time she walked by.  She and Sugar asked Mary Mouser to sit with them at dinner!  It was so sweet!

Sweets and Crystal Bowersox

Sweets and Charlie Kimball

Sweets and Nicole Johnson

Sweets and Mary Mouser

After the sponsor lunch, we had some time to hang out and talk in the ballroom.  Wendy and I noticed Jeffrey Brewer, JDRF CEO and President, was available so we went over to say hello and see exactly what it was that he was showing people!

What he had was a piece of new technology!

Wendy holding the implant!

This little thing is an encapsulation device that is implanted under the skin.  See that little part in the middle?  That's where the islet cells go!  He told us that it had to be made out of special material with a special texture so that the body would not reject it and so no anti-rejection drugs would be needed.  He also said that the T cells are larger than the islet cells so they would not be able to get it and destroy them!  The device is said to last 18-24 months.  He said he thought it might be in humans within a year.

It was REALLY cool!  Of course, Sweets said she wasn't interested in that because it meant going to the hospital for a surgery!  However, she did think twice when she realized that it would also mean no shots or pumps or things like that!

Mr. Brewer is very interesting to talk and listen to.  I had heard him speak in person once before.  He is super smart - but more than that - he's a Dad.  He has a child with T1.  So even though he may be the CEO of JDRF ... he has the same worries and hopes and dreams that the rest of us do.  Every time I hear him, I can't help but think that we are in really good hands.

Jeffrey Brewer and Crystal Bowersox

Who knows... maybe we were holding the future of Diabetes technology in our hands!!!



We had our blitz training that afternoon to prepare us for our Hill visits the next day.  JDRF does an awesome job preparing you for these meetings.  They make it so easy!

That night we had on our own.  We hung out with Wendy and Sugar.  We went to the American History museum, rode the subway, visited the Lincoln Memorial, and did LOTS OF WALKING!  Sweets did not care what we were doing as long as she was with Sugar!







Day Three:

This was the day to go to Capitol Hill!  We got up bright and early and picked up the scrapbook we had made for our visits.  We had a later meeting so we hung out at the hotel for a bit and then took a cab over to the House side of the Capitol.

Sweets with her scrapbook!

Our first meeting was with our Representative, Steve Chabot.  We had met him a few years earlier when we visited for JDRF's Government Day.  His staffer, who has T1, remembered us!  He was happy to show Sweets his pump!  We were thrilled that Representative Chabot took the time out of this busy schedule to meet with us!  Sweets showed him her scrapbook and talked a little about what having T1D is like.  We did our best to stress the importance of renewing the SDP and continuing funding for diabetes research.  He seemed very interested in what we had to say and supportive to our cause!  Representative Chabot has a niece with T1 so it is a disease that has affected him personally.

Meeting with Representative Chabot

After that meeting, we booked it over to the Senate side for our next meeting with Senator Rob Portman's staff.

Posing as we walk past the Capitol!

All of the Ohio delegates met with the Senators.  This was a nice meeting!  I really enjoyed seeing all the kids get involved and talk to the staff about diabetes!  These kids are incredible - truly!  We had representatives of all ages and they ALL did a great job!

Team Ohio in Senator Portman's Meeting Room

As soon as we were done, we had to hurry over to the Hart Senate building to have a picture taken with a special guest!  Guess who it was?!?!  Vice President Biden!  Holy cow!!

The kids had to get in picture order again and they wanted the parents to move away and to the sides.  No problem.  Unless your T1 is low.  All that walking was making Sweets LOW LOW LOW!  In fact, LOW is exactly what her CGM was saying.  She was really about 50 - not that that is so much better.  Sweets was also a little nervous to be away from me.  JDRF is on top of things.  They have lots of helpers and medical staff right there to take care of these issues.  I really didn't worry about her -- but she wanted me in her eyesight.  And she was not the only little one feeling this way.

So what's a Mama to do?  Squish her body up against a potted tree and stay in her kids line of vision, of course!  I had to laugh...  This picture was scheduled at 12:30.  Lunch time.  We had not eaten.  We had no time between meetings.  I had packed some snacks but obviously not enough.  And I was obviously not alone in this!  You would see parents running in to the group from all sides with meters and juice boxes and pudding and tabs and food!  That was a great feeling - everyone gets it.  No one had to explain what they were doing.  In fact, people kept saying, "I have a juice if you need it"  "I have some snacks."  "Do you need anything?"  "What's her bg?  How is she doing?"  LOVE.

FINALLY, Vice President Biden entered the room!  He walked to the front of the group and talked to the kids.  He was so kind to the kids! Again, be small is helpful because Sweets was right up front!  I was behind her but managed to get some shots of her and the VP!  You can always tell it's her because of the bow!  He was very encouraging to all of us!  And he took time to take pictures with the kids.  I'm not really sure what I expected, but he was very nice, kind and personable.  I was impressed!

See the bow on the left?  Sweets!

Look for the bow!

Front row... bow!  

Next we rushed down to the Senate Hearing.  I had to leave Sweets with the kids - which she was NOT happy about.  Until she saw Sugar and then she was fine!  We were jammed into that room!

Sitting in the well at the Senate Hearing.

I loved listening to the people who testified.  Jean Smart (Designing Women... LOVED that show!), Ray Allen, Jeffrey Brewer, and    all testified.  I can't do justice to their words.  Ray Allen made me cry.  He may be an NBA star - but he's a D Dad first.  He's just like us (well...  mostly.)  I think I may need a Heat Jersey!  (Click HERE for links to the news coverage of the event.)

We had to leave the hearing a little early to make our next meeting with Senator Sherrod Brown.  We were really excited to have the chance to meet him!  He shared with us that his son had been dxd with T1 as an adult.  He very personable and kind to the kids!  And he was VERY supportive of our message!


Team Ohio with Senator Brown.

After that, our work was done!  It was back to the hotel where Daddy was waiting for us to start our family sightseeing part of the trip!

It was sad to say goodbye to the new friends we had made!  It was so much fun and so exciting that it was kinda hard to come back down to real life!

So I've told you all the facts about our trip.  But what I can't seem to find the words for is explaining what it was like to be there and the emotions we felt.

Awesome.  Amazing.  Incredible.  Overwhelming.  Priceless.  Wonderful.  Fun.  Exciting.

There is something about sitting in a room full of kids living with T1... just like your kid... that is pretty awesome.  It's this major feeling of SAME.  These people get it.  They live it.  You don't have to explain what you're doing.  They're doing it, too.

It's seeing your T1 immediately bond with the other kids.  And not just the ones her age but the older and younger kids, too!  It was like a family - even though we had just met.

It was a feeling of HOPE.  All these people are working toward the same goal we are.  All these really awesome, smart, determined people!

It was "Strength in Numbers".



It was seeing your child using her voice to tell her story.  Seeing her empowered - not beaten by her disease.  It was showing her that SHE can make a difference.  Her voice counts.

I moved to tears many times during our three days in Washington.  Sometimes it out of awe.  Sometimes it was out of joy.  Sometimes love, understanding, overwhelmed-ness (is that a word?), excitement, and happiness.

I want to thank JDRF for this once in a lifetime experience.  Thank you for making my daughter feel special.  Thank you for showing her that she can make a difference.  And showing that we ALL can make a difference.

This is the best I can do.  All I've got left is to encourage you to apply for CC15 and go experience it yourself!  And until then... get involved.  Become an advocate.  Attend your local Promise meeting.  (We are!)  Make a difference.


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