Image Map
Image Map

FLOCKED

Thursday, September 30, 2010

***  HURRY!  It's not too late to enter my Sugar Bolus Giveaway.... you have until midnight on 9.30.2010 to enter!  Click the link above for details! ***

Awareness

That is a word that I have thought about a lot today.

We are walking in JDRF's Walk to Cure Diabetes on Saturday!  We are ending our money collection at school as part of our Dimes for Diabetes campaign.  We've got some other stuff coming up...  And I've been promoting and advocating the heck out all of it!

Awareness.  I just want people to understand.  To get it.  To care.

Tonight, on the way home from school, Sweetpea and I had this conversation:

Sweetpea:  Mom, Why can't I eat donuts?
Me:  What?  You want a donut?  (could not hear due to LOUD Camp Rock 2 soundtrack blaring...)
Sweetpea:  No.  Well, Yes.  I want a donut.  Can I have a donut?  
Me:  No.  We're eating dinner soon.  And I don't have donuts in the car.
Sweetpea:  Why can't I eat donuts?
Me:  You can eat donuts.  Who said you couldn't eat donuts?
Sweetpea:  You.  You said it wasn't a good idea.
Me:  (cringing) Oh.  Well.... You CAN eat donuts.  Just not everyday.  Eating donuts everyday is a bad idea.  Donuts are full of fat and sugar.  They make your blood sugar high and then you feel yucky.  NO ONE should eat donuts everyday.  That will make you feel sick and you wouldn't be healthy.  You need to put healthy food in your body so that you can have energy to run and play.  Does that make sense?
Sweetpea:  Yes.  So I can have a donut?
Me:  Yes.  You can have a donut.  Not everyday.  Like a special treat.  Like birthday cake.  I LOVE cake but I don't eat it every day because that would'nt be healthy.
Sweetpea:  Ok.  Can we get donuts now?

She's becoming aware of it.  More aware.  

Awareness isn't only about others knowing about and understanding Type 1.  It's also about my daughter coming to terms with the fact that she HAS Type 1 - and all that means.

At home, I got the tester out to test her bg.  I was wiping her finger with an alcohol wipe.

Sweetpea:  That smells like shots.  Yuck.  I hate the smell of shots.

Me too.  Me too.  But that smell has become a normal part of our world.  It no longer smells like the doctor's office or the hospital.  It's now a smell of home.  

When did she put this together?  Probably a long time ago.  But today was the first day she's vocalized it.  I realized in that moment, that we are in for lots more moments like this... where her thoughts and language will be catching up to her awareness.  Every day she's more capable of expressing these feelings.  

I guess it's been easy to pretend that it didn't bother her - because she never really talked about it.  Because she can't remember life before.  But she's aware.  Very aware.  She knows she's different.  She wonders WHY?  

I wish she could live in blissful unawareness forever and let me take on the rest.

But she can't.  So what's left to do?

Advocate!

This afternoon, waiting for us on our porch, was a BIG box from Super Nate and his wonderful Mommy, Laura, from Houston, We Have a Problem!

Guess what it was???





















Yup!  We've been FLOCKED!  Noah, The Diabetes Dude, sent Dodge the Flamingo to Nate.  Nate sent him to us.  And we'll send him on.... after he goes to school  After he walks with us...

We were SO EXCITED!

This is a video of Sweetpea opening the box.  This is the first time she sees what's inside...

*** Pause the playlist before viewing.  And speaking of which...I know - the song's a stretch - but it's by the Flamingos!  Couldn't resist! ***



Thanks Super Nate! Thanks Noah!!


Your gift was just what we needed today!

CrAzY

Tuesday, September 28, 2010

** Before I start this post, I want to say THANKS for all the sweet comments about the last post.  But something is bothering me about it.... Know what?  I KNOW I didn't get everyone's kiddos on the list.  And that bothers me.  It was late.... I was tired.... whatever.  Anyway, I'm working on putting that post on one of my tabs - a WHY I DO THIS kind of thing.  And I want to recognize all your kids.  So... if in my sleep deprived, foggy brained haze, I left out your precious sweetie, shoot me an email at theprincessandthepump@gmail.com and let me know so I can add them!  Thanks!  And now..... back to your regularly scheduled post....

Life is crazy. And the D Life.... Well, crazy doesn't even begin to describe it some days!

Yesterday, I read an awesome post by Meri called The Drive By Carbing Incident. It was funny. And it made me cry, too. You've got to go read it Yourself- I don't want to spoil it!

But it made me think about an experience I had in the grocery store the other night. I was in the juice isle stocking up. We've had LOTS of lows lately. I was also getting some of the Just 10 pouches. While searching for the Just 10 pouches (they always seem to be hiding), a father and son walked up. The Dad told the boy to hurry and pick one- one that he wanted.

It just struck me odd. There I was loading up on Juicy Juice 15c boxes and Just 10 2c pouches. And there was this young boy picking the REGULAR pouches with no restriction.

It was one of those moments when you realize how different things are for you. Because to me- I was getting very important medicine. He was getting juice. To us, juice is medicine. Juice is life saving. To him, it's something to drink.

And as I walked away, I giggled. (Yes- giggled. Because if you don't laugh, you'll cry.). Because I thought about what that looked like to ME. And how for that father to see what I saw, he'd have to walk by Sweetpea and I in the cold and flu isle while I was telling her to "just hurry up and grab a box- whatever you want!". How crazy is that? You'd never let your child just randomly grab a box of medicine! Of course, for us- juice is a lot more potent a drug than a Tylenol!!

Crazy.

You know what else is crazy? Playing with numbers like it's roulette!!

I feel like I'm doing just that. I'm putting all my chips on a 3 am basal reduction. And tomorrow, I'll be going all in on a carb ratio change at 11 am from 30 to 35.

I'll be crossing my fingers and waiting ... Hoping... A good number comes up.

Because this is a high stakes game we play.

And the truth of that fact is crazy.


Photobucket

Why I do what I do

Monday, September 27, 2010

I sit here trying to get my thoughts in order.  WHAT am I going to blog about?  There is SO MUCH, folks, that is going through my mind.  I have SO MANY things waiting for me to have time to spill it all out.  It feels like I might run out of room soon.... and yet when I sit down, it's hard to get my thoughts in order.

Maybe it's the full moon.  Maybe that's what has been causing all these crazy lows, too.  And from what I read, we are not the only ones.  Low after low... change the basals... still low.  It's exhausting.  For ALL of us!  She never feels them, of course.  Thank the Lord for Dexie.  Her little beeps make me feel safer.

Maybe it's the converstaion Sweepea had earlier with Mimi after watching a show about making wishes...
Sweetpea:  I made a wish.
Mimi:  You did?  What did you wish for?
Sweetpea:  I wish there was a cure for diabetes.  Do you wish that?
Mimi:  Yes.  Every day.  And I pray for a cure, too.
Sweetpea:  So does Mommy.

She's only four years old.  She should be wishing for a pony.  Not a cure.

Maybe it's the walk.  We walk for a CURE on Saturday!  We're organizing our super cute shirts... And I've been fundraising like a mad woman!  A Dimes for Diabetes campaign is entering it's third week at school.  A McTeacher night to raise money for our Dimes for Diabetes campaign is set for the following week.  A fundraising night at Chick-fil-A is planned.  A 31 Party where 30% of sales goes to JDRF is also on the books.  I'm exhausted. 

My decision making ability is off.  I'm not on top of my game.  But I'm trying.

And I feel this post is going in a direction that has not been planned.  Not one of those things filling my "swelly hurty brain".

I know people wonder WHY I do all those things.  WHY am doing that many fundraisers?  WHY am I putting in so much effort?

Because I'm an overachiever?  Yes.  I am.  But that's not the whole story.

I do it because.... I have to.

When Sweetpea was dx'd - amost 18 months ago - I felt so scared.  So lost.  So helpless.  And at times, I still do.

I can not make this disease go away.  I can not make her better. 

All I CAN do is advocate.  I can raise money and awareness. 

I do this in hopes that her world will be a brighter and easier place to live.
I do this because I love her dearly.
I do this because I don't know what else to do.
I do this because it makes ME feel better to do SOMETHING.  ANYTHING.
I do this because my baby wishes for a cure.
I do this because I have HOPE.  HOPE than one day.... one day D will be a thing of the past.

I read this on the Cure Diabetes wall on facebook today.
Photobucket
DRI's Diabetes Dad Tom Karlya on his daughter: "18 years ago today, Kaitlyn was diagnosed with diabetes. I have 2 choices: To tell you that Kaitlyn lives with DIABETES; or to tell you Kaitlyn LIVES with diabetes. I choose the latter. She is an amazing woman to whom the words 'no' and 'can't' do not exist. My promise remains, Baby, I'll stop when you (and now, Rob) have that luxury---and not 1 minute before. ♥."
Yup.  That's right on. 

Sweetpea LIVES with diabetes.  It's my job to make sure that is the case.  She, also, is an amazing girl.  "NO" and "CAN'T" don't exist for her, either (and not just because she's at THAT age!)

And that's my promise, too. 

I will stop when you can stop - and not one minute before.  I will blog.  I will fundraise.  I will count change.  I will flip burgers.  I will EAT MORE CHICKEN.  I will stay up late chasing highs and lows.  I will hold a juice box to your lips at 3 am.  I will monitor your ketones.  I will log your bg's.  I will use EMLA cream so you don't feel the pinch of the needle.  I will order your supplies.  I will make certain your teachers and caregivers UNDERSTAND how to care for you.  I will make you feel normal.  I will make sure you can always participate.  I will carry juice and Smarties and Glucagon wherever you go.  I will take you to the doctor, the hospital, endo.  I will hold you when you don't feel good.  I will try to understand when your moods change dramatically because of your blood sugar.  I will wipe your tears.  I will wipe your blood.  I will make sure that you LIVE with diabetes. 

I will anything and everything, my dear, sweet angel. 

I do this all for Ally.  For Nate.  For Elise.  For Jack.  For Joe.  For Sugar.  For Audrey.  For Justin.  For J.  For L.  For B.  For The Superhero.  For Olivia.  For Rose.  For Addison.  For Hayley.  For Sugar Boy.  For Cara.  For Audrey.  For Ellie.  For Justice.  For Ellery.  For Brianna.  For Avery.  For Cliffy.  For Landon.  For Larkin.  For Noah.  For Emma.  For Liam.  For Bekah.  For Alivia.  For Nick.  For today's 40. 

But mostly, I do this all for YOU.  And I will not stop until you can.  This I promise you. 

D Mama Meet Up

Sunday, September 26, 2010

Guess what I did over the weekend?!?

Sweetpea and I met Tracy (aka The Crazy Pancreas) and her Princess!

As you may know, Tracy and The Princess left on a jet plane to visit some relatives in the midwest.  And it just so happened that we live somewhat close.... so Sweetpea and I made the drive over to visit them while they are in our time zone!

This was not my first D Mama meet up.  Of course, Misty from Life is Like a Box of Chocolates are lucky to see each other often.  I've met Lora from My Diabetic Child twice when we were vacationing in her neck of the woods! 

And here's what I LOVE...  Meeting someone that you've talked to forever through blogs and facebook and email and twitter is like meeting an old friend!

Tracy is just as wonderful as you think!  She is so sweet and kind and easy to talk to!  Just like you imagine when reading her blog!  And The Princess is A-DOR-A-BLE!!!  She's starting to talk and it is the cutest thing!

I also got the pleasure of meeting Tracy's Mom and her Aunt and other family.  They, also, are super nice!  They were so welcoming!  I felt like I had known them all forever!  It was truly like walking into a friend's house  - not a stranger.

The four of us went to a cute little outdoor mall and ate lunch at Red Robin (home of the wonderful cup with ounces marked on the side).  Red Robin scored more points when they printed Tracy off a gluten free menu for The Princess!  One of my favorite parts of the day was when I pulled out Sweetpea's meter to test her bg.  The Superhero and Sweetpea both pump with the Animas Ping and both have a Dexie!  As I was testing Sweetpea, The Princess started pointing and saying "Superhero!  Superhero!"  (well, she was saying his name but you know...!)  It was so cool!  That feeling of "same".

Then we took the Princesses to a little park and let them play while we got to chat!  They had a great time twirling around and sliding in the beautiful fall sunshine!

We then headed to look at shops.  Guess where we went???  GYMBOREE!  If you know me and Tracy, you know that we are both Gymboree addicts!!  And we've always dreamed of shopping together!  Of course, we both liked many of the same things and we both pretty much own the entire store!  Here's what you'll never believe..... NEITHER of us bought ANYTHING!  Ok, so it's because Gymbucks are starting this week and we're saving till then.  But still...

After our tour thru Gymboree, Sweetpea started really complaining that she was thristy.  Then that she was hungry.  Now we JUST ate.  And Dexie had already beeped low once (although she was not).  So I checked Dex again.  It needed a blood drop.  And guess what?  I had no strips.  I had meant to put a new container in my bag before I left the house that AM but forgot - what with all the packing of extra pump suppies and carb free snacks for the 2 1/2 hour trip. 

DOH!

So we headed back to the car to get my extra kit.

No big deal, right?  Well.... the only problem is that we just got a new car.  And although I SWEAR I remember putting the extra kit into the new car.... it wasn't there. 

You've got to be kidding me!!  I felt like SUCH a DORK! 

Tracy was super nice and so we packed up the little royal ones and headed to the closest Walgreens so that I could buy strips!  While there, I bought an extra meter, too and so now I KNOW that I have one in the new car!  Luckily, Sweetpea was NOT low.

We then went back to Tracy's Aunt's house (Her Aunt also has T1!) The girls played and we talked.  Sweetpea was ACTUALLY low and enjoyed a pack of Smarties! Then... it was time to go. 

We needed a picture, of course, to put on the blogs!  I think you'll get a kick out of it!




Sweetpea's bg was coming up but she was hungry.... and really tired!  She fell asleep before we even got to the highway!

It was a great day!  I had so much fun!  I just wish that they lived that close for real and that we had gotten to meet The Superhero, too!  THANKS for a great day, Tracy!  We love you!

So.... who's next!  It's made me want to meet ALL OF YOU really, really bad!!!


Photobucket

A Bodacious Bracelet Bolus

Friday, September 24, 2010

** This contest is now closed. **

WELCOME!
I have the honor of hosting this week's sugar bolus!  

What have I cooked up for you this week???  

Something pretty wonderful that we LOVE! 

This week I am giving away a $30 gift certificate to Petite Baubles!

Here are just a FEW samples of what they offer...
beaded bracelets

 sport bands

zipper pulls

click HERE to check out their site

Here is a little about Petite Baubles....

We offer High quality Boutique style beaded baby, children and adult bracelets and jewelry at a reasonable cost. We use only the finest quality materials to ensure that your piece of jewelry will last.


Here at Petite Baubles Boutique, I personally handcraft each piece of jewelry in my design studio.. I can assure you that each piece of jewelry is inspected again before it is shipped out to you.. I pride in my craftsmanship and designs so that my customers are happy.. Customer service is my 100% goal...


As a mom with a child with special needs I know how scary it can be to take them out into the world. Even more so to let them go on their own. A medical ID tag is my first line of defense. I know that if my child gets into trouble they will get immediate attention, AND that the rescuer will be able to contact me, or other important people. The biggest dilemma...how to get them to wear the tags! That's how Petite Baubles Boutique was born! Fun, stylish and affordable jewelry to compliment your medical ID tags. Now the questions is will you wear your tag today but WHICH bracelet will you choose to wear today!


Quality verses cost...
People say.. you need to raise your prices.. Why are my prices lower than others? Here is your answer....I love my daughter to have nice jewelry.. do I want to pay top dollar for a small child to wear a piece of jewelry?...No.. So I focus my prices on what I feel is a reasonable cost.. rest assured you will still get the high quality piece of jewelry but a much more reasonable cost...


Some people ask why I choose to donate a portion of each sale of my awareness and cancer awareness designs.. Here is my answer that comes from my heart...
No matter whether it be a penny, a dime or even dollar amounts.. those few pennies, dimes and dollars are helping in finding cures..
I think of it like this...Take cancer..When my daughter grows up...I pray that she will not be sitting in an oncologists office being told there is nothing else they can do.. that her daughter won't have to battle and die of breast cancer, lung cancer, ovarian cancer..... so each penny donated makes us one step closer to the tools that are needed to find a cure...
So my friends.. that's why I donate a portion... Please be assured that for every awareness bracelet that you purchase from my website I do make the donations to the organizations stated...
Sound like a great place???  It is!

And I can fully attest to that!


See the cute little crown bracelet?  That's Sweetpea's Medical Alert bracelet!

When Sweetpea was first diagnosed, we got brochures in the hospital for medic alert bracelets.  I looked through them in the hospital... but they were all so expensive.  And Sweetpea had JUST turned 3.  She had NEVER worn a bracelet.  REFUSED.  I didn't want to spend a lot of money for something she might not wear.

BUT... I wanted something cute!

When we got home, Sweetpea and I searched the Internet together looking for a cute bracelet... and we found Petite Baubles.  It something fun and light hearted for us to do.  And that was a time when we desperately needed something fun.  Picking out and getting her cute little bracelets in the mail was a ray of sunshine during a rather dark time.  


You see.... it's MORE than a bracelet to keep her safe. 

We both fell in love with the super cute bracelets that they offered!

Honestly, I was a little skeptical if they would last - if they could handle the daily wear and tear of a toddler.  

But they did! 

Sweetpea LOVES these bracelets.  From the moment they arrived, she was smitten.  This child, who had never worn a bracelet before, put it on and never took it off.  Truly!  She often wears them to bed!  

We started with the Miss Kitty bracelet and then got the Princess Crown bracelet for a back up!  We quickly realized that having an extra is a necessity!

One of the other things that I loved about Petite Baubles is that they offered very small sizes!  Not every place out there offers bracelets for a very small wrist... but they do!


They don't JUST do bracelets, though..... Look at this list of things you can choose from... for children OR adults... Whether you're a PWD, CWD, or not!





Medical ID bracelets
Lost Child Prevention ID
Medical Temporary Tattoo's
Medical ID tags
Girly Medical ID bracelets
Boys Medical ID bracelets
Limited Edition Medical ID Bracelets
Girls Medical Sportsbands
Boys medical ID sportsband
Medical ID Classic bracelets
Medical ID Sports Bands
Medical ID tags
Medical ID Dog tag necklace
Medical ID Charms
Medical ID Extra Bands
Medical identification bag charm
Medical Id Keychains
Medical Id Watches
Medical Id Zipper Pulls
Lanyard Id Badge
Child Id Bracelets
Awareness Bracelets
Pacifier Holder
Nap Paks Nap Mats
Pregnancy Medical
Remembrance Bracelets

 I KNOW you want this!  Here's what you have to do be the winner!

OFFICIAL RULES 


● Leave me a comment before midnight on Thursday, September 30, 2010. Please include your first name. Comments left without a name will be eliminated.

● To earn extra entries (post a separate comment for each):
* Tweet about this giveaway on Twitter. Then, leave me an additional comment
containing a link to your tweet.
* Share a link to this contest on Facebook. Then, leave me an additional
comment to let me know.
* Blog about this contest. Then, leave me an additional comment containing
a link to your blog.

● No duplicate comments are allowed. Duplicate comments will be eliminated.

● The winner will be selected via random draw at www.random.org.

● The winner's name will be posted here on this blog on Friday, October 1, 2010.

● After the winner's name is posted, he/she will have 48 hours to send a message to me at theprincessandthepump@gmail.com. If I do not hear from the winner within 48 hours, I will select a new winner.

Remember, to enter you must leave me a comment with your first name before midnight on Thursday, September 30th.

GOOD LUCK!
 
Photobucket

The Princess and The Parade

Thursday, September 23, 2010

Tonight was our school district's annual Homecoming Parade!

Each year, every school in the district walks in the parade.  I have been walking since before Sweetpea was born.  I walked while pregnant with her.  I walked with her in a stroller.  Now that she's a student there... she REALLY wants to walk!

Sweetpea has on her cheerleading outfit, has her baby, and is ready to parade!


 
Does she look a little tired to you?  

Could be because it's the end of a very long week.  And a very HOT week.  Temps were in the 90's today.... and we have no A/C in our school.

OR... it could be because she was LOW.  

We met for dinner and then headed back to my classroom to chill before the parade started.  I had just bolused Sweetpea 1.2u for her dinner.  I had given her a few extra carbs because I knew she'd be walking and she was borderline low.

Less than an hour later.... time to line up for the parade... 

BEEP.  BEEP.  BEEP.

Dexie.  48.  Crap on a stick.

Sweetpea sucked down her Juicy Juice.  

But she still had over a unit IOB.  And we were supposed to walk a mile!

I combed my classroom for sweet treats....  I keep a big bag of smarties in the cupboard.  But I NEEDED juice.  Note to self.... buy juice to store in classroom.

Now, she has juice in  HER classroom.  But all the doors were locked.  My key only works for my room.  

I managed to get into the clinic and I stole  borrowed a juice box to take with us.

Getting ready to walk.... sitting on the curb testing BG.  She was 79.  Still about a unit IOB.  

About now I'm KICKING myself for saying that "NO, we don't need the wagon.  It's too heavy to pull."  And "NO, we don't want the stroller.  She's almost 5.  She can walk."

Well.... normally.  But not when low.

I try to talk Sweetpea into WATCHING the parade instead.  She's having none of it.  Life is NOT a spectator sport to her.  No way.  She wants to be in the thick of it.

So we walk.  Sweetpea wants to walk.  She's skipping along happily.  NO signs that she's low...

Then she says she's hungry.  And tired.  "Can you carry me?"  We've walked about a block.

"Hop on."

So I carried her pretty much the WHOLE DANG WAY.

We stopped once to test.  She'd gone up... only to drop again.  She was 80.  Glad I'd stole borrowed that other juice.  Down it went.

By the time the parade was over, she was still hungry.  I was hot, sweaty and exhausted.  And J was saying, "I thought we should have brought the stroller!"  

So that's how my night was... How was yours???

Photobucket

What is better than free stuff?

Tuesday, September 21, 2010

What could be better than one awesome give away hosted by Meri?

TWO awesome give aways hosted by Meri!!!

That's right - TWO!

What is she giving away... oh, go check it out for yourself!





Photobucket

The Invisible Rollercoaster

Monday, September 20, 2010


This wasn't the post I had in mind for today.

But.... Life happened. And it DOES fit with the invisibility theme.

If you read my last post, you know all about our Saturday. Bad site, 400 bg, LARGE ketones.... Then lows. Stubborn lows.

Sunday was better but Sweetpea was high again at bedtime. We corrected and upped the evening basal.
3 am -- bg was 240. Correct or not.... I decide against knowing she usually crashes if we correct a number under 250 overnight. 5:30 am- 160. Nice. 8 am- 250. Crap.

Bolus and breakfast. Correct the bg and off to school we go!

10 am - snack. Bg is 394.
*sigh*.
Do I correct?? I do. I bolus the carbs and put in the bg. The Ping figured out that with the .2 units IOB, she needed more insulin to bring down that monster bg. She's happy, though. She ate all her ravioli and is wanting more!!!

11:30 am. I go check on Sweetpea in her class. She and her buddy are happily playing. Her teacher tells me she's been really thirsty and gone potty a lot. She is still saying she's hungry. She's laughing, recalling information from memory, walking around.

11:45am. A quick kiss. Off to Mimi and Gaga's waiting van.

12:00pm. Mimi calls. Sweetpea was DEMANDING food. She tested. 37.

Did Dexie catch this crash??? No. Dexie was still attached to the bedrail. Oops! In the rush of Monday morning, Mommy forgot Dex. Of all days...

AND SHE HAD NO SYMPTOMS. NO SIGNS other than hunger. NONE. Is this normal?!?

She drank some juice and came up quickly. She had a fun afternoon playing in the mud!

Bedtime - 8:30pm

Dexie buzzed. Double arrows down- 187. Then double arrows down 135- minutes later.

8:50.... 72. With .5u IOB.

Juice - 8g

9:03. Dexie buzzed. Double arrows down LOW.

Fingerstick... 54

7g juice....

Tick tock. Tick tock

Dexie buzzed. Double arrows down. LOW.

9:15. Fingerstick .... 63

9:30 Dexie buzzed. Double arrows down. LOW.
Fingerstick.... 43.

15g juice

Tick tock. Tick tock.

Thoughts of Wendy's Gluc experience fill my head. Thanking God that I recently checked the expiration dates and refilled the Rx.

A few more Dexie lows...

9:40. Fingerstick.... 111.

Woosh. Exhale.
But still going back to check again in a few minutes. Because you never know what curve might lie ahead. What dip. What drop.
Just another day on the invisible D rollercoaster.

Photobucket

She doesn't LOOK sick

Sunday, September 19, 2010


Did you know that there are 133 million people living with invisible illnesses? That's one in two people who live with a chronic illness each and every day.

Diabetes is another of the many illnesses that are invisible.

More or Less.

When you look at Sweetpea, you wouldn't guess that she has a disease. You might say, "She doesn't LOOK sick."

And you're right. She's NOT sick. But she does have a disease. It's lurking there beneath the surface. The only hint might be the pump and cgm pouch she wears. But you might just think it's a fanny pack.

For the most part, diabetes is invisible. You can't see what's happening beneath the surface. And that might be for the best, because if you could see it - well, my guess is that it's not pretty.

Let me share with you a three day period in our crazy life.

Tuesday night. Site change. We put on the numbing cream before bed, wait 45 minutes, and then quietly remove the old site and stick another needle into her tiny tush. It's become routine. We're fast and efficient. We don't think twice.

Until 3 am. When she's HIGH. Give a correction... wait.... and she's not coming down. It was J's night to do on night patrol and he woke me up a little before 6 with the great news. We've got a bad site.

We decided to change it out without waiting for the numbing cream. She was asleep... UNTIL we stuck yet another needle into flesh. Then she woke up screaming. And then we were all up. Luckily, she had no ketones and with the new site and a correction, she came down nicely and was at a good number by breakfast.

Off to the Endo that afternoon! GREAT NEWS! Sweetpea's A1c was down to 7.5! Yipee! But the joy was short lived. She was really tired and grumpy from getting up so early and not having a good night's sleep. So were we.

Then, 3 days later, it was time to change the site again. It was also time to change the Dexie site. So we went thought the routine again... numbing cream, filling a vial of insulin, prepping everything.... We switched cheeks... Dexie moved to the left cheek and the pump site moved to the right cheek. All was well..... or so we thought.

Two hours after inserting Dexie, she needed calibrated. I did 2 bg checks and entered the data. It was about 1 am. She was high. I corrected and went to sleep. 3:30. Alarm goes off. I drag my sleepy body into her room. Dexie is saying bg is over 340. Not good. Bg check confirmed... I corrected. I checked the site. I feared we had another bad site going on but I wanted to see what the correction did. Sweetpea woke up after being poked and prodded so many times and wanted me to sleep with her. Fine. So I crawled into her little bed and fell asleep. I didn't set an alarm. I hadn't brought my phone with me. I often don't sleep well in her bed due to the flailing of small arms and legs... and I knew I'd hear Dex if it alarmed... so I went to sleep.

BAD idea.

THe next thing I knew it was morning. She was waking me up. Dexie said 390. It had never alarmed. This morning we were not so lucky. Her ketones were 2.4. According to the Precision Blood Ketone tester we use, anything over 1.5 "indicates that patient may be at risk for developing diabetic ketoacidosis (DKA). Patient should contact a healthcare provider immediately."

Bad decision. One bad decision. Means life threatening consequences.

As parents of CWD, we are continually forced to make decisions about our child's health. Many times in the middle of the night. Many times on very little sleep. And sometimes, in the middle of the night when you're so tired that you can hardly move, you make the wrong decision. And the children pay for it.

It took all morning to get her bg down. And when it came down, it crashed. Then we couldn't keep it up. After being called out of church TWICE, we just left. I haven't heard a church service in WEEKS. If she's not high, she's low. Going back and forth multiple times means that I have no idea what the messages have been about. I've gotten NOTHING from church - except a feeling of frustration at how diabetes can take away so much from our lives. Frustration that we can't even go to church. Forget time alone. Forget actually spending any time with my husband that doesn't involve a diabetes task. Forget being able to take care of ME. Forget being able to think about anything else.


What does this have to do with Invisible Illness week?


Because to look at her, you'd never have known anything was wrong. She was acting fine. She didn't complain about feeling bad. She never does. She was a typical, happy, giggling, dancing, smiling 4 year old.


Except she wasn't.


Except what you couldn't see were ketones so high she could develop DKA quickly which can lead to coma and death. Don't kid yourself and say that it cann't happen. It can. And it has. And she could have "looked" fine.

You couldn't see a stubborn low blood sugar. A low blood sugar that if left untreated could lead to loss of motor control, confusion, memory loss, passing out, coma... and death.

All because of being without insulin for a few hours. The amount of insulin she missed is incredibly tiny.... almost invisible. And yet without it, she could have died.

Check it out.. this is a unit. Sweetpea's basal ate over night is .125 units. The amount of insulin she missed is smaller than that drop.



And one of the most difficult things is that no one sees what is going on in her body. Those who don't live with diabetes can't begin to understand what it's like to take care of a disease so silent and so deadly... and yet so invisible.


Being invisible makes it appear mild or tame. Don't be fooled. That makes it even more of a threat.

Just keep in mind.... everyone is battling something. And most of the time, our demons are invisible. Maybe we should all treat each other will a little extra kindness and a little extra love



Photobucket

Invisible Illness Awareness Week

Friday, September 17, 2010


Did you know it was Invisible Illness Awareness Week?

Maybe not - 'cause it's invisible!

Well.... you know. As invisible as it can be.

There's lots of illnesses that are invisible. But I'm going to blogging about those that are nearest and dearest to my heart.

I'm not going to start with Diabetes...

No, I'm going to start with Celiac Disease.

The Celiac Disease Foundation Website (http://www.celiac.org/) explains it as this...



Celiac Disease (CD) is a lifelong inherited autoimmune condition affecting
children and adults. When people with CD eat foods that contain gluten, it
creates an immune-mediated toxic reaction that causes damage to the small
intestine and does not allow food to be properly absorbed. Even small amounts of
gluten in foods can affect those with CD and cause health problems. Damage can
occur to the small bowel even when there are no symptoms present.

Gluten is the common name for the proteins in specific grains that are harmful to
persons with celiac disease. These proteins are found in ALL forms of wheat
(including durum, semolina, spelt, kamut, einkorn and faro) and related grains
rye, barley and triticale and MUST be eliminated.



How's this for invisible?? SPELL CHECK didn't even recognize Celiac!!

I had no idea about the complexities of this illness. I knew a little about it before D ... but I thought that it wasn't that big of a deal. Diet change. You could eat a little... just not a lot.... of gluten.

Uh...no. That's like saying that Sweetpea can eat a LITTLE bit of carbs without insulin. Just doesn't work that way.

Oh how clueless we are until it smacks us in the face!

Have you ever paid attention to what foods contain gluten... wheat... Well, it's pretty much EVERYTHING!!!

I can't imagine dealing with celiac on top of diabetes. But many do...


Sweetpea has been tested for celiac and was negative. But it's not uncommon for people with diabetes to also have celiac. So we'll keep testing... just to make sure.

There are some great resources out there for folks with Celiac... and some great blogs...


Check out Wendy at Candy Hearts. She has celiac and so does super sweet Sugar - her T1D kiddo.

Check out Gluten Free Eating. This family also deals with Celiac and Type 1. Lots of great recipes!

And now for a laugh...

Sweetpea LOVES the Berenstain Bears. LOVES. THEM. She wants to know where Bear Country is. She wants to go there on vacation. She asked me the other night a question and said something about playing with her cubs.....

SO..... when Sweetpea visits the library, she often gets Berenstain Bear books. At a recent visit with Mimi and Gaga, Sweetpea picked up the book, The Berenstain Bears' Big Bedtime Book.

This is a cute book filled with traditional stories and fairy tales.... but they all have a twist!

My favorite was The Little Red Hen.

In this story, the characters all HELPED make the bread. They all pitched in!

And at the end, when the Little Red Hen asked who would help her eat the bread..... THAT was when they said, "Not, I."

The reason? They are all allergic to wheat.

Hahahahahahahaha!

So, I dedicate this story to all my dear friends fighting the invisible battle with gluten. Fight on, friends. Stay strong. I know life isn't easy. I know cooking might well be a nightmare. But at least the Berenstain Bears "get it"!

**If you want to get a copy of this book for yourself, click here for a link. I get nothing from this... just the joy of knowing that you're reading a great book! **

Photobucket

Introducing Me Me...

Wednesday, September 15, 2010

Sweet Momma over at The Sugar Kids tagged me! So now it's my turn to do the Diabetes MeMe!

This meme has some miles on it! Heidi at D- Tales was tagged by Tracy at The Super Hero & The Princess who was tagged by Wendy at Candy Hearts...who was tagged by Meri at Our Diabetic Life...who was tagged by Laura at Houston, We Have a Problem…who was tagged by My Diabetic Child…who was tagged by Jen at I am Your Pancreas…who was tagged by Reyna Beta Buddies…who was tagged by Penny at A Sweet Grace...who accepted the meme challenge from Six Until Me.

What type of diabetes do you have:

Well, technically I don't have diabetes. Sweetpea does. Although it FEELS like I have diabetes sometimes. Without the physical symptoms, or course. And I would give anything to be able to take diabetes from her and give it to myself. She has Type 1. Yes, there are different types. And Yes - it does matter.

When were you diagnosed?

April 27, 2009

What's your current blood sugar:

101. Pretty good. No dinner spike which makes me SUPER happy. But she is going to bed so she's getting a Hershey Kiss because she still has a half a unit IOB.

What kind of meter do you use:

We use the One Touch Ping remote. Sweetpea has an Animas Ping pump and so we use the One Touch Ping remote so we can bolus her with that. It's so handy - no getting out the pump. Just bolus from the meter! I love it! EXCEPT for that dang ERROR 5 that Reyna was talking about. Grrrr....

How many times per day do you check your blood sugar:

Even though we have a Dexcom CGM, we still test on average 7-10 times a day. Sometimes less if it's a good day. Sometimes more if things aren't going our way.

What is a "HIGH" number for you:

Anything over 180 is technically high. But I'd say anything over 250 is what I consider high.

What do you consider "LOW":

Under 80 is low. I don't worry much unless it's under 70. Not that she feels it - 36 or 78- she still isn't alerting to her lows.

What is your favorite low blood sugar reaction treater:

We use juice at night. Juicy Juice 4 oz boxes in APPLE. She can slurp in her sleep! During the day it depends on how low she is. If it's mealtime and she's not under 70, we just let her eat and don't count a few grams. We use m&m's and Hershey Kisses if she needs just a little boost with some fat to slow absorption. If she's really low we use Smarties or juice. We just stared using Starburst.

Describe your dream endo:

We LOVE our endo! And she's not technically an endo! We see a nurse practitioner. She does everything an endo does - prescribes our medicines and everything. PLUS, because she's an RN, if we call in numbers we can talk to her! She works the phones on certain days so if we're having trouble and I need help, I'll call in and ask for her. I LOVE that because I feel like I'm getting advice from someone who KNOWS Sweetpea and KNOWS us. I think it's helped create a closer relationship between us. She's really kind and sweet. She takes her time with us and really helps us understand. She answers all of our questions. She really listens to us and takes our concerns seriously and she's willing to try new things. LOVE HER!

Who's on your support team:

I can't really say that J is on my support team because he does more than that! He standing right beside me - but he is a rock of support. He doesn't get uptight or upset about much. He rolls with it. He's the calm one.

My parents, Gaga and Mimi, are awesome! They take care of Sweetpea EVERYDAY after preschool until school is out for the day. They have learned to bolus, count carbs, read Dexie... all kids of stuff. Mimi even has her own little book of foods with carb amounts. They are the only ones who ever baby sit for us so we can go out because they are the only other people in our lives that know how to feed her and give insulin. Plus they love her pieces and always tell us we're doing a good job!

Our other family and friends are great! We are blessed with many people in our lives who show a deep concern for Sweetpea. Some are learning to test blood sugar and count carbs and working on being able to take care of her completely. And I can't tell you what a precious gift that is. Truly.

We have over 50 people signed up to walk with us at our JDRF walk in a few weeks. All of those people, people taking time out of their busy lives just to show us support and love.... they are all amazing and all part of our support network. I'm not sure they know how much we love and appreciate them - or how much it means to us!

Sweetpea's teachers and school CCA - Mrs. V, Mrs. W, and Mrs. S - they are beyond wonderful! They know how to care for her, they know what to look for... they KNOW her and know if she's not acting right, they alert me to any concerns, they count carbs and deal with treats... and they LOVE her. Priceless. They are priceless angels.

The DOC. I've "met" so many wonderful D Mamas (and a few Papas) in cyberspace. I count them as real friends. I pray for them. I think about them. I learn from them. They listen when I'm at the end of my rope or I'm angry or tired. THEY GET IT. Understanding.... TRUE understanding is priceless. I love you all! I would not be nearly as sane (stop laughing) without you!

Do you think there will be a cure in your lifetime:

I don't know. I hope so. I kinda doubt it but I'm not giving up the dream. And that may sound weird since I work SO HARD for JDRF and raising money... but it's not, really. Because I think it will happen... one day... in God's timing. And whether I'm alive to see it.... I'd like to be but in the end it doesn't really matter. I think it's a goal worth working for, fighting for... whether I'm alive to see it or not. Whether Sweetpea is alive to see it or not. Because no one should suffer with Type 1. No one.

What is a "cure" to you:

I've been thinking about this and I'm working on a post about this exact topic. So I won't give it all away... but a REAL cure is a working pancreas. No more pumps or injected insulin. It's the body working the way the body should. With no side effects.

The most annoying thing people say to you about your diabetes is:

Oh Dear Lord.... just ONE?!? I'd say it has to be when people ask if her numbers are "under control". Like it's that easy. Like that's even possible. I guess, technically, it is if you're talking about no high highs or low lows. But most people asking this are REALLY asking if it's all better now. They don't get that no matter how diligent you are, you still have highs and lows. I never know how to answer that. I started just saying "yeah, she is".

I just have to add this one, too... "Why do you still get up at night?" This is sometimes the follow up to me saying "Yeah, she is". I think I'm gonna start using Laura's quote..."If your child had a disease that could steal them away from you in the middle of the night, when would YOU stop checking?"

The most common misconception about diabetes:

That it's "just diabetes". I wrote an entire post about this called "If I Have to Explain..." It contains my most favorite quote about this. It's a quote I think of literally every. single. day. Check it out!

If you could say one thing to your pancreas, what would it be:

WTH? Seriously? You worked for a measly 2 1/2 years. Get your A$$ in gear and get back in the game!!!!

Then I'd beg... Please, please, please... we need you. We can't do this on our own. You can do so much better. Please don't leave us.

And then... well, then I'd say that maybe you get the bum deal. Everyone blames you. When is it really all your fault? Maybe we should be blaming the overactive immune system that killed off all your beta cells. Maybe you'd work if you could but you just keep getting attacked. I'm sorry. I know the feeling.

And, now, the meme goes to:

Misty at Life is Like a Box of Chocolates!





Photobucket

MORE FREE STUFF

Do you like free stuff?

I do. I LOVE free stuff.

If you're like me then check out Heidi over at D Tales! She's doing a give away!!!
Click HERE to go check it out!

She's giving away not one... not two... not three... but FOUR super cool medical alert bracelets!



(I like pink! But there are other colors, too!)

And if that is not enough, you can even get a 20% off coupon to CoolMedID!

ALSO - Heidi is hosting this month's "Blogger Basal".... if you have a post you'd like her include.... click on her name to get to her site.

For more info on the Blogger Basal... click HERE.

What are you waiting for?!? You better hurry up! Time's running out!


Photobucket

Mission Impossible

Monday, September 13, 2010

After Saturday's post where I went on and on about all that's going on in the MishMash of my life.... it occurred to me that I may have given some of you the wrong impression.

From all the super sweet comments that I've read... I think you think I'm actually doing a GOOD JOB at all this stuff!

HAHAHAHAHAHAHAHAHAHAHAHA
(That's me, laughing hysterically.)

I am no super woman. Trust me on this.

Don't think that I'm amazing or anything. I'm just an ordinary gal trying to do WAY TOO MUCH!

I'm juggling WAY to many things. And my balls are not all in the air! Oh, No! I've got balls flying out of control ALL OVER THE PLACE!!!! (Get your mind out of the gutter. That is NOT what I was talking about. If you want that - go check out Reyna's post!)

That became clear as crystal today.

So if you were feeling at all like a slacker after reading my last post - well, this will make you feel better.

So, Sweetpea started school last week. On Friday, she was supposed to turn in a homework assignment where she had traced the feet of everyone in her family. I got the paper out of her bookbag on Thursday night. I read it - I swear I did. But for some reason, I saw "September 10th" and thought it was the next week. Sweetpea even told me she needed to do her homework. I said, "Don't worry. We'll do it over the weekend." Then, in the middle of the afternoon, I was watching my student teacher teach a lesson and I actually PAID ATTENTION to the calendar. The calendar with the big red circle on the 10th.

"Oh, crap", I thought to myself.

Her teacher was much too gracious when I went to apologize. We did the assignment and sent it back today.

Today. When I see her class all come running outside for recess. Her class where just about everyone has on yellow.

"Oh, crap", I thought to myself.

"Was it yellow day?" I asked. "Yes."

Her teacher was, once again, too gracious when I apologized for my child who wore RED. (She did look super cute - but.... not the point.)

Her teacher was also way too gracious when I swore that I would get her school supplies (paper towels and tissues) to school TOMORROW!

Because.... "Oh, CRAP!!!", I thought.

I forgot them, AGAIN!!!

See? Suckity Suckity Suck Suck Suck.

I've got too much going on.

And who is paying the price? My sweet girl. That's who. That's not right.

She deserves a Mom who is THERE. Mentally AND physically.

And I've got too much going on.

Three weeks 'till our walk. We're winding up the t-shirt ordering. Dimes for Diabetes is underway. McTeacher night is scheduled. Chick-fil-A STILL won't call me back.

It's time to delegate. It's time to let some of it go.

Diabetes is a humbling disease.

It makes SURE that I know that I am NOT in control. I am NOT in charge. I am NOT perfect.

I don't like that. Not one little bit. But trying to fight that fact is impossible.

Mission Impossible.

It's hard to be everything to everyone.

I want to be the best teacher for my students. I want to advocate for my daughter and all other living with Type 1. I want to be the best wife to my husband. I want to be the best friend to my "peeps" (both pancreatic and otherwise). I want to be the best daughter to my parents. And, more than anything, I want to be the best Mommy to Sweetpea..... and part of that is being the best pancreas!

It's a balancing act. It's like nailing jello to a tree. Or herding cats.

Mission Impossible.

But I'm trying. I'm cutting out what's not essential so I can actually spend time with my kid and dress her in the right thing!!

So, see? I'm not superwoman. I'm just an ordinary gal trying to do the impossible!


Photobucket

MishMash

Saturday, September 11, 2010

MishMash... That's where I am right now.

I thought about calling this post Potpourri. But that's too pretty. No... not right. I'm a little more messy right now.

I don't think I can coherently put together a post so I'm just going to tell you what's been going on in my head and my life for the past week. I feel like I've been MIA in the DOC. But... Life called and I had to answer! Maybe I should have just let the machine pick up!

Where do I even start?!?

Sweetpea started school last Tuesday! Here she is with one of her bestest friends and the son of one of MY bestest friends! Aren't they cute?



She is LOVING school! And I am loving that I am not stressing like I was last year! It's so nice to know that she is safe and her teachers know what to do! AWESOME!!

Our life has played out to the CAMP ROCK 2 soundtrack this week. Of course, we had a movie night last Friday and watched the premiere. And we've watched it every.single.day since then. And not just once. Oh, no. We watch it ALL.THE.TIME. And then - because that just isn't enough, we listen to the soundtrack in the car! Good thing I actually LIKE the movie and the songs! So much so that I have a few posts planned that go with the songs and their lyrics. You've been warned.

Sweetpea does not sit and stare at the tv for hours, though. Don't worry. While the movie is on, she's putting on her OWN show and dancing along. Check this out...





So if anyone from Disney is interested in doing a show about little girl with diabetes... we've got your star right here!

Sweetpea started ballet this week, too!



Yes, that is really how she poses. All I did was tell her to smile and she struck a pose!

Ballet went well and she really enjoyed herself. Her pump was pretty unnoticeable on her outfit - not that she cared in the slightest. And she had fun even though I had to interrupt class TWICE to give her Smarties for a low. Dang D.

My school year is off to a great start and I'm finally getting to place where I don't need to stay at school until 6:00 every night and then bring a bag of work home. Sweetpea never wants to leave, though. She relishes playing teacher and telling "her kids" what to do!

We are gearing up for our JDRF Walk to Cure Diabetes! Our letters have been sent out and our video was made. We're doing pretty well with the fundraising aspect. Not as good as last year - but when you raise $12,000 the first year - it's a hard act to follow. Our goal this year is $10,000. We'll see if we get there! We have a ways to go.

People are signing up for our walk team! Our goal is 50 walkers and right now we're 16 short. Our team is called "Princess Sweetpea's Dream Team". We are going with a Cinderella theme. We used the song "A Dream is a Wish your Heart Makes" for our video and the lyrics are on the back of our shirts.

My amazing friend Steve designed our shirts. He is an amazing illustrator! Check it out!

These awesome shirts are FREE to anyone who walks with us! We are also selling them for $10.

I am doing a DIMES FOR DIABETES campaign to benefit JDRF and our walk team at my school starting on Monday. My dear friend (and mother of the boy above) works at another school in our district and she's heading up a DIMES FOR DIABETES campaign at her school! What a great friend!! In addition to collecting money, we are having a Mc Teacher night at one of the local McDonald's! A few of us will work at McDonalds from 5-8 pm and we will get 15% of the proceeds from that evening to donate to our team! I'm also trying to set up a night at Chick-fil-A but am having a hard time connecting with the marketing director. I'm hoping that we not only raise some bucks for JDRF but that we also raise awareness and educate people on what diabetes really IS.

And then.... well, there's this new position I accepted with JDRF. More to come on that later!

AND I've been talking to some pretty wonderful vendors so I've got some exciting things planned to GIVE AWAY soon! YAY! I just love that there are so many D companies that will gladly share their wonderful products with us and participate in give aways! You're gonna LOVE what we've got planned!

Allergies. Hay Fever. Every fall I get the crud. I think it has something to do with the fact that I work in an un-airconditioned school. And it's HOT when school starts. So the windows are open. A million fans have been brought in and are blowing the hot air around. And with it comes the allergies. Nothing really helps. I end up with a sinus infection and get a shot. I need to go make that appointment because I think I've reached that point.

Endo visit on Wednesday.
Wedding on Sunday.
MEETING TRACY FROM THE SUPERHERO AND THE PRINCESS the next weekend!
Birthday parties.
Homecoming Parade.
Fish fry at school to support our school levy.

And, as always, diabetes. It goes with us everywhere. It's always there in the back of my mind. Sometimes in the front of my mind. Demanding attention. Forcing me to get up 5 TIMES the other night and then go to work the next day. I HATE nights like that. Does D not realize that I need to be alert to teach a class of five year old?!?! No - D doesn't care. It doesn't care what it's doing to Sweetpea. Or us.

We just keep going. Moving forward. One step at a time. Trying to get it all done. Trying to make a difference. Trying to lead a "normal" life.

As I've heard from some reality tv show... It might be a CrAzY life - but it's OUR life.

So true. And even though it's super crazy right now, I wouldn't trade it for the world!

Photobucket

SUGAR BOLUS

Wednesday, September 8, 2010

Did you know there was another Sugar Bolus going on?!? Well, there is!

This week's sugar bolus is giving away to one lucky reader a Tummietote from Tallygear and TigTagz wristbands! The really cool thing about this give away is that there are many uses for both of these products. You don't HAVE to have diabetes to use them!

The Tummietote can hold anything - a cell phone, a wallet, money, id.... or an insulin pump or cgm! Wendy even wears one to the gym so that her phone is with her at all times. (We know all about this, don't we Moms?)

The TigTagz can be personalized to show medical conditions - like diabetes, celiac disease, or an allergy. OR they can personalized with important contact information and be worn on field trips or places where there will be lots of children.

And all you have to do is enter!

BUT-- you better hurry! Time is running out! You have until THIS THURSDAY (September 9, 2010) at MIDNIGHT!

So run on over to Candy Hearts and get yourself in the mix! This just might be your lucky day!





*** To see who is hosting the next SUGAR BOLUS - or to sign up yourself - check out my SUGAR BOLUS tab above!


Photobucket

Back to School - As a Parent of a CWD AND as a Teacher

Monday, September 6, 2010


Tuesday is Sweetpea's first day of school!

Sweetpea is in Preschool again this year. She's slightly miffed because most of her friends from last year's class went on to kindergarten. And Mommy teaches kindergarten. But she's only 4 - so Pk it is.

After telling her that I saw one of her friends on the playground, she said, "What was SHE doing there?" I replied that she was in kindergarten and kindergarten had already started. Sweetpea replied, "Hmpf. Well..... I'm going to play a trick. I'm going to go to the office and tell them I've 5 so I can go to kindergarten too!". Then she stomped her foot.

Four going on fourteen.

Don't get me wrong, Sweetpea is SUPER EXCITED for school! She can not wait! She asks every day how many days and is eagerly counting down on her calendar.

I feel great about sending her back to school. And I feel great about sending DIABETES back to school, too.

The main reason is that Sweetpea has the most amazing teachers and nurses to work with! We LOVE and ADORE Mrs. V, Mrs. W, and Mrs. S. And they LOVE and ADORE Sweetpea. I could not have picked people more perfect if I tried! We are so blessed!

Of course, if you haven't figured it out, I am also at Sweetpea's school all day. I teach there. So she goes with me in the AM. Then her wonderful grandparents take care of her in the afternoon. Then they bring her back to me as school is over.

The control freak, type A person that I am LOVES being able to be right there with her. I am the one who does most of the D duties. She has her bg checked in the clinic but if anything needs to be done with her pump, she comes to me.

It's not always easy to stop class to handle diabetes. But it's a blessing in many ways and I'm glad that I can do it.

However, don't think that just because I'm there all the time means that I am not prepared! We have a 504 plan for Sweetpea. I make information sheets for all her teachers - including Music, PE, Art, and Library - even though they know me. We have plans in place for lockdowns and field trips. I have written out pup directions just in case someone else needs to use it. I have a big 'ol box of D supplies in the clinic. I have a Dexie cheat sheet. We do all of this because... You just never know. And it's better to be over prepared than under prepared!

If you are interested in any of the above mentioned things, check out the School Stuff tab above. It's all there and you are more than welcome to use it!

I believe that it's really important to do all of this. Even though I'm there. Even though I handle most of the explicit care. Even though her teachers are wonderful. Because... one day I won't be there. And one day she might have a teacher who is not as wonderful. And I can say that we've had this plan in place. We have had these accommodations. It gives me more of a leg to stand on if, for any reason, someone would take exception to something we felt that Sweetpea needed.

As a teacher, I know what it's like to have a child with D in your classroom. And know NOTHING about the disease. That was me before Sweetpea was diagnosed.

I had had children with D in my room. All the parents handled it differently.

One parent let her child eat anything he wanted and never cared if I let her know or not. In fact, I specifically remembered calling and asking her about freezer pops. She said , "Oh yeah, that's totally fine." I don't know why I remembered this - but I did. So after Sweetpea's dx, I went looking for freezer pops - assuming they had very little carbs. Uh... no. I don't know what her reasoning was. But I was baffled.

Another child could not eat anything we had - even if I did call Mom. I felt bad for her but we did parties the same as we always had. And she took her treats home. She didn't seem to mind.

But it haunts me now.

I got an email from one mother of a cwd that I'd had in my class as I was sitting in Children's Hospital the day after Sweetpea was diagnosed. It was surreal. I emailed her back... "you'll never guess where I am...."

I know that as a teacher, BEFORE, I didn't understand D. I didn't know how serious it was. No one ever told me! And AFTER - that scared me to death.

Some teachers will be difficult no matter what - whether they get it or not. Unfortunately. But not all. Some just need to know. Some need to understand. Not only the seriousness of low blood sugar but also how bg affects learning.

This child that was in my class had some struggles with learning. And I wondered if diabetes had anything to do with it... but I didn't know. And now I see it so clearly... and it haunts me.

Most teachers are there because they love kids. They want what is best for the kids.

So all these documents are a way of helping them SEE. Helping them UNDERSTAND. Helping them help your child.


It truly haunts me - the way I handled my cwd students BEFORE. If I had only known.... If I ever have another cwd in my class, things will be different. There will be no "candy box" or getting an m&m for a treat. There will be no popsicles on hot days... unless it works with the schedule or it's a Crystal Light pop or something without carbs. I will insist that carb counts come with food that is brought in to celebrate birthdays or on special occasions. And on those occasions, we will not eat like pigs. I would encourage healthy treats - and insist on Just 10 pouches. I would make accommodations. I would try to make the parents life and worries as simple as possible.

Because now I get it.

I used to think, "Well, I feel really bad. But it is his/her life. I guess they have to get used to it."

No. Life is hard enough for cwd's. CWD's endure so much more than their "typical" peers. And because they "look" healthy - no one really knows. No one really sees.

Teachers can't see what it's like to stick needles into your child. They don't see the strain that D puts on everyone. They can not comprehend what it's like to manage D in your child. They just can't. It's not their fault.

No one can advocate for your child but YOU. And no one is a better advocate.


Don't be afraid to do what you feel is right for your child. And if your child's teacher has any questions.... just send them my way! I'd be more than happy to help explain!



Here's to a Happy and Healthy School Year!


Photobucket

Do I Make You Sad?

Sunday, September 5, 2010

Shortly after I started blogging, I had someone tell me this:

"I just can't read your blog. It makes me too sad."

I wasn't sure how to respond to that.

Part of me felt like saying, "Oh, gee. I'm SO sorry my life is so depressing that you can't handle reading about it." I wanted to ask how, exactly, a comment like that was supposed to make me feel. I wanted to say, "Try LIVING it. I don't have the option to quit reading." I was not happy.

I didn't start a blog so that people all over the world could read about us and FEEL SORRY for us. That was not and is not the point. And if people are reading and that is what they're getting - then I'm doing something terribly wrong.

Because I don't want people to feel sorry for us. There is nothing to feel sorry about.

We have a great life. We have a wonderful, supportive family and friends. We have a wonderful school and teachers who truly LOVE Sweetpea and care for her like she's their own. We have a church that inspires us. We have jobs. We have health insurance. We have each other. We have LOVE.

And we also have diabetes.

The point has never been to make people feel sorry for us.

A facebook friend commented once that she didn't feel sorry for us but that she did FEEL FOR US. I thought that was perfect. I just want others to know what it's like. To know the battles we face. To understand the need for a cure.

That's why I blog. That's why I tell our story. AND - and this is a BIG AND - because I know that there are 40 new families every. single. day that enter this club. And through our story, they will see parts of their own. And they will not feel alone. They will know that others are out there. Getting up at night to check on their sleeping children. Worrying. Treating low and high blood sugar. Packing bags and bags of supplies before going places. Worrying. Counting carbs. Fighting for a safe educational environment. Piercing their child's flesh. Seeing their child's blood. Worrying.

It has helped me tremendously to read the stories of others and know I am not alone. I would have gone crazy long ago if I did not "know" others dealing with D. Even though many of them live in my computer, I still consider them friends. And they love and support and understand me. And I, in turn, try to do that for others.

United We Stand.

Then, last night, I read some tweets and a post call All There Is by Lee Ann at The Butter Compartment.

She said, "Such complex emotions to read about D kids. I'm sad for them, I'm sad for me, I worry they'll get cynical like me if they aren't cured. It pains me to read about the hope for a cure, and know if they don't get it, they might crash, like watching a car about to crash."

It made me think again of that person saying that my blog makes them sad.

Lee Ann is a adult with Type 1. I do not know her. I only know what she chooses to share on her blog. She is the creator of Diabetes Art Day - which we LOVED and loved participating in.

I value her opinion and views because she is a person dealing with T1. I don't know what it feels like. I treat the D. I fight the D. I think about the D constantly. But I don't know what it FEELS like. So the opinions and stories of adults living with D intrigue me.

This is a different spin on feeling sad for us.

And I so totally get what she's saying. How would I feel if I spent my life being told that a cure is right around the corner.... only to never see it come to pass? I might be very angry. I think it's likely that I would have some anger issues there. Some distrust. Some resentment. Now don't misunderstand, I'm not saying that Lee Ann does - just that I think that I would. It's understandable.

And I think it's an important thing to remember. To keep in mind. It's like telling your child that one day he or she will _______ (fill in the blank - get married, graduate from college, be a doctor, be the president... whatever) and then their life will be complete. Everything will be wonderful and all will be right with the world.

You're setting them up for failure by setting those expectations.

The same goes for the cure. If you approach it that way, then HOPE becomes dangerous. If that's how you set it up, then it IS like waiting for that car to crash.

But that's not how I approach HOPE.

I wrote a post about HOPE recently called First Words. Click to check it out.

I can not imagine living without HOPE.

I don't just HOPE for a cure for diabetes. I HOPE for a cure for all diseases. I have HOPE that Sweetpea has a great school year and that she will do well in school. I HOPE that she finds wonderful, loving, supportive friends. I HOPE she never lets ANYTHING hold her back. I HOPE that I am able to grow old and be her mom, here on Earth, for a long, long time. I HOPE that I can still fit in my jeans from last year. I HOPE.

My HOPE comes from a deeper place. The Lord said in Jeremiah 29:11 :"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future."

And that is kind of HOPE that I want to share with Sweetpea.

I want her to learn that I blog and I fund raise in HOPE of finding a cure. A cure that I believe will come... one day. A cure that I believe is worth the fight. A cure that may not come in her life time. Of that, I want her to be aware. But I want her to know that I believe it is important to HOPE for and work for a cure even if she doesn't benefit from it. I do not do this out of selfish ambition. And her HOPE should not be purely selfish either. Of course, I want a cure for my girl more than anything. But I also think of the 40 new families whose world is changing today. And the millions of others. And I know that it's not just about Sweetpea. It's not about me. It's about all of us. We're ALL worth it.

Someone commented on Lee Ann's blog that they did not think it was fair to share their deepest feelings about their child's illness.

One day, Sweetpea might read this blog. She might read my words. And she will feel the depth of my emotions. She will see my deepest fears. Sometimes it's a dark place.

I don't want her to ever feel guilty or sad because of my words. But I do want her know. Because it's her story. It's my story. It's OUR story.

I want her know that I would walk through fire for her. That's what being a mom is about. There is nothing to feel sad or guilty about.

She won't remember what the early days were like. This is a memoir for her.

And when she reads it, I want her see that this blog is full of HOPE. HOPE that comes from the Lord. HOPE that keeps us going.

And I want her feel - in depths of her soul - that this blog is also full of LOVE. LOVE for my child. A love so deep and strong it's hard to put into words. And love for others. Others who share this journey with us.

After all, isn't HOPE and LOVE really All There Is?

Photobucket

LinkWithin

Related Posts with Thumbnails