Attention Diabetic Mousketeers...

We love Disney.  

A lot.

Two years ago, we took Sweets for the first time.  We spent one day at the Magic Kingdom.  It was great.  Last year, we took Sweets for a week and did all the parks.  It was even better.  You can read about our trips and experiences here, here, and here.  

We've caught the bug.  And Sweets keeps asking when we're going back!  (I'm not sure... but I'm hoping the answer is SOON!)

Through the DOC, I've met Robyn Adams.  Robyn is a Disney Destinations Planner!  She LOVES Disney and she also knows the scoop on all things "mouse" related!  

But that's not all... Robyn is the mother of child with diabetes.  AND the wife of a husband with diabetes.  So Robyn doesn't just know about Disney...  she knows about Disney With Diabetes!  

If you are anything like me, you probably have a lot of questions about taking your T1's to Disney.  And who better to help you out than Robyn!?!?

Oh yeah... her services are FREE!  Does it get any better?!?

Well.... actually..... it does!

Robyn is planning a trip to Disney this spring for Diabetic Mousketeers!!  Not only would you get her incredible vacation planning services but you could also meet other families living with T1.... all while vising with Mickey and Minnie!  

Are you interested?!?

Here are the details straight from Robyn herself....

JUST FOR DIABETIC MOUSKETEERS

Families with Diabetes now have a chance to meet other families in the same boat at the most magical place on earth! And as a parent of a diabetic child myself, I can understand the importance of this opportunity.  We have exciting things planned: scavenger hunt through DownTown Disney, all meet at Chip and Dales Campfire,  Kim Possible World Showcase Adventure, pin trading among friends, and a hidden Mickey competition! 

Book your trip now to Walt Disney World March 11-17, 2012 at either the All-Star Movies Resort (value), Port Orleans/Riverside Resort (moderate), or the Contemporary Resort (deluxe) with special pricing, discounted tickets, and one of three dining plans. All guests will also receive a free ticket to either one of the water parks (Typhoon Lagoon or Blizzard Beach), or DisneyQuest at DownTown Disney.
You can receive a custom-built package for your family – for no additional charge! This includes booking a resort stay, (you pick the dates during the block- three night minimum please), ticket package, and dining package.  You will also receive your own personal itinerary, complete with the best individual plan to navigate the parks. If you have been to Disney but never with Diabetes, you will receive many personal tips and strategies to help you through each day.

My services are totally free! I can help you with Disney pricing for your family. Please be ready to tell me how many will be in your group, ages of the children, dates of your stay, and your resort preference.  The package that I develop for your family is customized to fit your needs.  I look forward to working with you!

Robyn Adams
--
Robyn Adams
Disney Destinations Planner
Travel with the Magic ~ Authorized Disney Vacation planner
1-800-670-4312 ext 125
Robyn@travelwiththemagic.com

This sounds like SO MUCH FUN! 

If you're like me and daydreaming of warm weather and fun (it's a little more gray, cold, and stressful here...) I really hope you'll contact and check this out! 

Promise Me This

Promise me something...?

Promise me that you'll never forget that YOUR voice is important.

Promise me that you'll always remember that one voice - YOUR voice - can make a difference.

Promise me that you'll truly believe that your story and your perspective is not only unique... but important and valued.

Promise me that you'll believe in yourself.  And in your ability to change the future. 

Promise me that you'll stop letting things hold you back.

Because you are unique.  Your perspective, your experiences, and your story and yours and yours alone.  They make you who you are and they have influence.  Not only to you or your family... but to the world. 

Sometimes all it takes is one voice.  One voice can make a difference. 

And when that one voice combines with other voices who are all working towards the same goal???

Magic can happen.

This is the reason why I feel so strongly about being a diabetes advocate. 

And the way that I have put this into action in my life is to become an advocate for JDRF and volunteer my time and energy to JDRF Advocacy.

So what does that actually mean?  What does that really look like?

Well, in the past few months it means that I've been involved in JDRF's Promise to Remember Me campaign.  The Promise campaign is a coordinated effort by JDRF Advocates to schedule and complete as many meetings as possible with their U.S. Representatives and Senators. Meetings are held at the Representatives' or Senators' local district offices, making it easier for more Advocates to speak face-to-face with their Members of Congress.  These meetings are all about building relationships and telling your story.

This "Promise Season" we have had the pleasure of participating in three meetings.  And we're hoping for two more!  Each meeting is different.  Each has it's own flow and vibe depending on the Member of Congress and the people attending.  But ALL the meetings are special.

In January, Sweets and I participated in a Promise meeting with Representative Jean Schmidt.  

We had the pleasure of meeting with Representative Schmidt the previous March when we were in Washington.  And, to my surprise, she remembered us!  


That day we were there to thank her for her support of the artificial pancreas and to urge her to continue to support diabetes research and funding.  Also at the meeting were other children living with diabetes, parents, adults living with diabetes, and JDRF staff.  We really had the whole spectrum covered!


One of the young girls was there with her mother.  This teenager does not have diabetes.  But her mother does.  She spoke eloquently and emotionally about the challenges of growing up and having to be the one who takes care of her mother at times. 

 Representative Schmidt took quite a bit of time with us.  She listened to every story.  She asked questions.  And she spoke to each child - encouraging them to continue with their activities and to never let diabetes hold them back.  

A few days after meeting with Representative Schmidt, I got a call from her office saying that she would like to write about our visit for her online newspaper!  Shortly after that, her article was published in a local paper.  A few days after that, I got a call from a reporter at our large local paper who also wanted to talk to us about our meeting.

That article ran on the front page of the Neighborhood section.  And I was thrilled to get notes from people in our community who also had children with diabetes - and a from people with no connection but wanted to know how they could help.

You just never know how one story, one meeting, one perspective... can impact people around you.  And possibly... hopefully... change the future.  

I don't tell you this to say, "Hey, Look at me!  How awesome am I?!?"

Nope.  Because I'll tell you a secret.

.  I'm a ordinary mom.  I'm an ordinary wife.  I'm a typical D Mama.  I'm a teacher and daughter and friend.  Lord knows, I'm not perfect.  I'm not a professional writer or speaker.  I don't get paid to do any of this.  We struggle to make our test strips last to end of the month, too.  I've probably got some unwashed dishes in the sink and I KNOW I need to clean the bathroom.  I've spent many nights laying awake and worrying about my child's future.  I've gone in to her room to make sure she's still breathing.  I've forgotten to bolus for a meal.  I'm an ordinary gal.  

But that's why this works.  

We have celebrities to fight for our cause.  

We need real people  With real hopes and dream.  With real concerns and problems.  People with real stories.

We need people just like you.

So, promise me that you'll stop selling yourself short.  You'll stop being afraid.  You'll stop thinking you don't have time.  You'll stop telling yourself that your story doesn't matter.  

Because it does.  

And we need YOU to tell it.  

You just never know what impact you will make...

To find out more about the Promise to Remember Me campaign, click HERE.  Meetings are still taking place across the country.  Check the Promise site or your local JDRF Chapter to find out how you can get involved!

The Fall

It was a few weeks ago at gymnastics. 

She had just recently moved to the big equipment.  Regular size bars.  Regular size beam.  Regular size vault.

In her previous class, blood sugar was never an issue.  She never did enough activity to warrant doing a basal reduction or giving her free carbs.

But this new class, with all the big, new equipment, was different.  We just didn't know it yet.

She doesn't wear her Dexcom receiver in gymnastics class.  She doesn't want the other girls asking her what it is.  She just wants to be normal.  I get that.  So we let her go without Dex.  It makes her happy.  And that's a huge plus about the Omnipod.  We can hide it.  And without the Dex receiver, no one can see a thing.

The parents are sent upstairs to the viewing room.  We all crowd around the windows watching our kids down below in the gym.  You've got to get there early if you want a seat!

She started out on the bars that night.  The bars are on the other side of the gym.  She looks like a little ant flipping around!  The bars are her favorite!

Next they moved to the floor.  They were practicing cartwheels and roundoffs and jumping onto the vault and doing back flips into the pit.  She seemed fine.  But her cartwheels and roundoffs were a little off...

Then they moved to the beams.  The beams are right below the viewing window.  She does a great job on the beam.  They are learning to balance and turn and lift their legs and jump. 

She was smiling and laughing and having fun.  Just like always.  But she was really unsteady. 

"She's off tonight" J commented.  And she was.  We could see it now that she was right in front of us.  She was having a really hard time staying on the beam. 

She was shaking so much that it looked like she was doing it on purpose just to be goofy.  Something she has been known to do...

But then....

She fell.

And this time, she landed FACE FIRST on the mat. 

I think my heart stopped.  But she got up and brushed herself off. 

She started to cry and her teacher picked her up and held her.  She knows that Sweets has diabetes.  She knows that we are always up there watching. She knows to give us the sign if something isn't right. 

So I waited.  And I watched.  And she stopped crying.  And she got back up on the beam. 

But she was still shaking. 

"Something isn't right."  I said. 

The thought had no more come out of my mouth than Dexie started beeping in my purse.

It usually won't pick her up.  But she just happened to be right below us.

And guess what it beeped???

Low.  Under 55.

So I took off running down the stairs, cursing myself for not realizing what the problem was.  I mean, really...  How many signs do I need?!?  Why did it not occur to me that she was LOW?!?

Parents are not allowed in the gym - but I ignore that rule when I need to test.  So I burst into the gym and grabbed her and tested. 

And she was 55. 

*Sigh*

A little juice and some smarties and her bg came up.  She was off to join to her class.  Nothing keeps her down.

But I was shaken. 

How in the world did I not realize that she was low?  She could have really gotten hurt. 

She's just starting to feel her lows.  Most of the time she is oblivious.  She feels a crash but not a slow drop.  And we are working on her recognizing that a shaky feeling often means low and that she should tell someone.  But it's a work in progress...

To her it was just another low.  Just another interruption to her life.

But it shook me up. 

Since then, not too much has changed. 

The low and the fall have faded into the backgroud.  I don't think or obsess over it like I did right after it happened.  I don't worry about what easily might have been....

She still does not wear the Dexcom to gymnastics.  I'd like her to.  But it means a lot to her not to wear it and so I'm forcing myself to be ok with that.

We've discussed lows a lot and what it feels like and how she HAS to tell her teacher if she is feeling shaky. 

And we're working on things.  Experimenting with decreased basal rates and free carbs.  It seems to vary a bit from week to week but we're finding success with a 30% basal reduction for 2-3 hours and possibly 15 g free before class depending on bg when class begins. 

The only thing that has really changed is that I'm a little more on my guard.  I watch a little closer.  Scrutinize every fall.  It reminded me that I must ALWAYS be alert.  ALWAYS be looking for the signs.  Especially because she often can't.

 I've been reminded that diabetes is always there.  It never goes away.  It never takes a break.  It never leaves her alone or allows her to be just like everyone else.  At least not on the inside. 

But that's pretty much it.  Nothing really changed.

And that's how it should be. 

Diabetes is not going to keep her from doing gymnastics.  It's not going to keep her from anything. 

That little girl is full of spunk and vigor.  NOTHING holds her down.

So even though it shook me up, I'm taking my cues from her.

I'm dusting myself off and getting back up there. 

Because if she can, then so can I. 

She is, after all, my hero.

I Don't Know

I don't know...

That's the answer Sweets gives when someone asks her about her diabetes or what she's doing when she's testing or what the stuff is attached to her body.

"I don't know."  Then she looks away and makes it clear that the conversation is over.

She doesn't do this at school.  She doesn't do this with friends.  Not with people who "know".  And as you've seen through some of our videos, she has no trouble talking about it. 

Maybe it's because they already know and are comfortable with it.  Maybe it's because we read the Coco book to her class and explained it all to them. 

But when it comes to an "outsider" - she just does not want to talk about it. 

It happens at gymnastics a lot.  She wears a little leotard that is impossible to hide anything under.  We found one with a black bottom so you don't really notice her pod unless you LOOK for it.  (Which, by the way, has made us all love the Omnipod ever more!  The ability to "hide" it has been a big deal - a lot more so than we ever expected when we first switched.)  And we don't make her wear the Dex receiver.  But we've put the sensor on her arm for the winter when it's hidden under long sleeves.  Works great - except for gymnastics.  And the other girls ask what it is. 

It happened this weekend at cheerleading.  I was testing her blood sugar during their half time snack.  The little girl sitting next to her asked her what she was doing.

"I don't know" was her response.

I whispered to her that she didn't need to be embarrassed.  That it was ok to tell her what it is and explain it. 

"I don't want to.  You do it."  she said.

Which is fine...  I don't want to force her into talking about diabetes if she doesn't want to.  But I also don't want her to be ashamed or embarrassed. 

So I don't know either.  I just don't know what to do about it.

For now, I just haven't made it into a big deal.  Or a deal at all, really.  I just keep telling her she doesn't need to be ashamed or feel embarrassed.  I tell her that the kids just want to know because they've never seen it before.  They are just curious.

I think she gets that.  I think she just doesn't want to talk about it to other people. 

It's like she feels really comfortable talking about diabetes to the diabetes community.  But it's just too much to tell everyone else.  People who don't get it and don't understand. 

I understand.  I feel that way sometimes, too.

I'm sure this is a normal part of growing up with diabetes. 

It's just that as a parent, I feel so responsible for her well being.  I feel so incredibly responsible for her health.  And I feel so incredibly responsible for making sure she is a well adjusted kid who grows into a well adjusted adult who is capable of dealing with everything that diabetes throws at her - both physically and emotionally. 

The thing is... I can tell her until I'm blue in the face that it's ok to be open about her diabetes.  I can tell her how awesome she is and how brave and how cool it is that she can test herself and take care of herself.  I can tell that she's amazing and that it doesn't matter what anyone thinks about her or her diabetes.

But even at age 5, she knows that I'm Mom.  And that's my job.  And that it's just different with other people.  And that I don't get it because I've never been 5 and had type 1. 

Which is why I think it's so fantastic that Kim from Texting My Pancreas made THIS VIDEO.

Go on... click over and watch it.  I'll wait.....

See?  Super cool.

I don't know what to do for Sweets.  I don't know what else there is to do... 

But I know that she needs other people with type 1 in her life.  People of all ages.  All genders.  People who really do get it. 

She watched this video with me.  She loved that Kim has diabetes - just like her.  And she listened. 

Is she going to go out and explain to everyone she meets about diabetes?  No, probably not.

But she still needs to hear it.  She needs to hear that it's ok to have diabetes.  And she needs to hear it from someone other than me.

So to Kim and all the other adult T1 bloggers out there...  THANK YOU.

I've said it before and I'll say it again.  You provide for her what I can't.  You get it.  You can guide her through life in ways that I can't.  Please keep blogging and vlogging and doing your thing.  You have no idea how important it is to this next generation of T1's.  And you have no idea what it means to me!

The things I don't know about diabetes and raising a child with diabetes could go on until eternity.

But this I DO know...  The DOC is amazing.  The support is incredible.  And I'm so lucky to have all of you to walk this road beside me.  Because of you, Sweets will be healthier both physically and mentally.

What a wonderful gift!

Oh So Crafty!

In my past life (you know, the one where I wasn't one of my child's vital organs), I loved to craft.  And exercise.  I worked out every day.  LOVED it.  I was a Jazzercise Superstar!  And I made stuff.  Scrapbooks.  Crafty stuff.  All the time. 

But when diabetes entered our lives, all that went out the door.

Diabetes consumed so much of my time, energy, and thoughts that there was no room left for anything else.

For the last (almost) 3 years, I have focused on Sweetpea.  And Sweetpea alone.

Her health, her happiness, her diabetes care...  it's been all consuming.  And I can't say that I totally regret that because I think it's made me a pretty good pancreas.  And it has kept her healthy.  And happy.

But now... now it's time to reclaim a little bit of my old life.  I think I'm FINALLY to place where that can actually happen.  A little of the dust has cleared and it's just time...

So I thought I'd share with you some of the things I have been doing. 

First off is exercising.  That's really a post for another day but so far so good.  I have dreams of doing a half marathon in the Spring (walking).  I think it's doable.  I'm working on it.

I've found that crafting really helps me relieve some stress.  Working on something helps me calm down.  It helps me focus on something other than blood sugar numbers.  It makes me feel good when it's completed.

Yeah, sometimes I'm up really late working on something.  And it doesn't happen every day.  But it's a start on getting me back to the healthy person that I used to be.

So....  here we go!  My Craftiness on Display!

This is the turkey shirt I made for Sweets for Thanksgiving!  I got a little crazy with the ribbons...

This is the Rudolph shirt that I made her for Christmas.  This is one of my favorites!

These are the reindeer ornaments that I made for the parents of the kids in my class at school.  It is their thumb prints made into reindeer!

 

This is the Christmas Tree shirt - and matching hair bow - that I made out of ribbon!  

I made these ornaments in honor of diabetes awareness!  They go great with "January" colors, too!  I have them in the glass vase and sitting on our kitchen table.  I think they look really pretty all together.  I took a close up pic so you can see the glitter!  SO EASY!

I made these clipboards for Sweets to hang her artwork on.  I just took regular clipboards and added a little paint, ribbon, and scrapbook paper!

This is what I did with them!  I painted the letters ART (J says, "Why are spelling TAR?"  har har) and hung them on the door to our basement - which is in our kitchen.  Then I hung the clipboards.  This way she is able to change her artwork around WITHOUT using tape or magenting it all over my pretty new fridge.  It's a nice, clean display!

Staying with efforts to keep tape off my walls, I made Sweets some magnet boards.  These are just cookie sheets that I spray pained and added scrapbook paper to.  She got to pick out the colors that she wanted.  I added her name with letter stickers to the green part.  I'm also in the process of drilling holes and adding some ribbon to hang it with.  These are for her bed room.  I made three using different kinds of paper.

I also just go the stuff to make one HUGE magnet board for her room.  I may put that one over her desk and sprinkle the others elsewhere.  The girl loves to tape things up.

This little project has been all over Pinterest (which is where I get most of my ideas, btw.  There's a little button over there to the right.  You can follow me.  Be warned: A lot of my posting is school related!)  I painted my nails and did that thing where you put writing on them.  I got fancy and tried to print off my own words. You can't really tell but the words say "hope faith cure diabetes".  If I were to do this again, I'd change some things.

And this I made for my parents for Christmas!  It's a chipboard letter that I added photos to!  Their last name starts with M, if you are wondering!  It turned out so cute that I'll probably make one for us, too!

As I'm looking at this, I'm realizing that I don't have pics of the bows.  My FAVORITE thing to make is hair bows for Sweets!  I've made a ton!  I LOVE them!  It's so fun - and cheaper than buying them.  Mostly.  Because you probably already know that she needs a bow to coordinate with each outfit.  Two actually because she usually wears piggies.  I can post those later...

So there you have it! 

If you'd like any directions for any of these projects, I'm happy to share!  Just leave me a comment and I'll write up a tutorial!

So go on, now... get your craft on!  Or whatever YOU need to do to help YOU de-stress and get back a little of you "old" self.  Even if it's only once a month or whatever.  It will make you feel better.

And you know what?

You're worth it!