Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Photo-A-Day: Advocate

dmpad 5

 I won’t always be there to do it for her.

As her mother, I believe it is my responsibility to teach her how to stand up for herself in this world.

Originally posted in July 2013 over at Type 1 Nation, I’m re-sharing this post about our journey to the 2013 session of JDRF Children’s Congress through advocacy.

I stood next to my baby’s hospital crib, staring at the cardiac monitor and multiple IV pumps. Her little face was incredibly swollen, and she couldn’t open her eyes. She was barely conscious, responsive primarily to painful stimuli. Every 15-30 minutes she moaned as someone poked holes in her innocent little body – arterial lab draws, multiple attempts for venous access, finger and toe pricks. As the night progressed, she slowly began moving around more, and eventually called out for me.

“Mama.” 

At first it was just a soft whimper, but before long I could hear the energy return to her tender voice, and took comfort in her stronger cries.

Our journey to JDRF Children’s Congress began on July 25, 2005.

I didn’t know it at the time, of course. At the time, I was lost in a haze of confusion, fear, and disbelief. I was overwhelmed with information, and doubted my ability to learn everything necessary in order to keep her alive at home.

The horrible low blood sugars started shortly thereafter: random occurrences of passing out, hitting her head, and an hour or more of confused recovery.  She was hardly able to communicate verbally, let alone find the words to tell me when something was wrong. Paralyzed by anxiety, I was on constant guard for the next episode, and secretly wondered if it would be the one that would take her life.

And I knew.

Faced with the imminent loss of our health insurance, my husband began a worldwide search for a position that would provide our family with secure access to benefits. Ultimately, we would leave everything we had worked for behind to move across country as the economy crashed around us. In the interim, I called one insurance company after another in search of a policy to cover the gap, and was denied time and time again, because of her “pre-existing condition”.

And I knew.

We decided to transition to an insulin pump, hoping the precise micro-dosages would stop the terrifying lows. We had to fight with our insurance company to prove it was a medical necessity. We had to fight with the medical supply company to use the infusion set that suited her best. We had to fight with the pharmacy to get the number of test strips we needed.

And I knew.

She started preschool, and they refused to help her in the classroom. Then the school nurse insisted that we put her back on injections. Even after district level meetings involving an advocate, she was sent home with a low blood sugar once, because she identified a problem at 3:22 when the school day ended at 3:20.  My neighbor carried her limp body to my doorstep five minutes later in tears after trying, unsuccessfully, to force her to drink a juice box in the parking lot.

And I knew.

I knew we had to fight back. I knew I needed to equip her with more than her diabetes supplies. I needed to help her find her voice; then use it to advocate for her rights, her health, and her life.

We applied to attend Children’s Congress, and were rejected.

Again.

And again.

All the while, she attended meetings with legislators at our State Capitol, worked hard to raise awareness in her community, and made it a point to welcome newly diagnosed kids into her circle of T1 friends. She has defeated stereotypes, overcome challenges, and takes great pride in her ability to manage her diabetes with confidence.

In the fall of 2012, we applied for Children’s Congress a fourth time and cheers erupted from our home when she opened her invitation of acceptance a few months ago. The road to Children’s Congress has been a steady journey of battles and victories, but one thing is for certain:  She’s just getting started!

JDRFcc13: Downtown DC with Hallie

We had a few free hours on Day 2 of JDRF Children’s Congress 2013 to see some sights. It was a small window of opportunity, so I asked Sugar what she wanted to see the most out of everything.
Her answer: The Lincoln Memorial. (And she wanted to ride the Metro.)
As for me, I wanted to take her to the American History Museum, specifically to see the First Ladies Exhibit
That was all we’d be able to do…one “thing” each.  We were excited when Hallie and Sweets decided to join us, and off we went!
First we walked from the hotel to the American History Museum.
I’m a nurse. He’s a helicopter mechanic. We’re pursuing the American Dream together.
Corny, I know.
*BONUS* – Coincidentally, one of Mr. Rose’s sisters happened to be in town for a conference of her own. She Metro’d over to meet us for a quick hug and hello, before needing to get back to her meetings.
Next up, we found some dinner and then hopped the Metro to Foggy Bottom. We didn’t think the Lincoln would be much of a walk…well…at least, not according to the map we had been using…
It was a hike. 
And it was hot.
But we made it.
American History — CHECK!
Metro — CHECK!
Lincoln — CHECK!
Now we had to make it back to the hotel in time to pick up some important information we would need to review before starting Day 3.
We walked.
And we walked.
And we walked.
(Did I mention it was HOT?)
I swear we walked about 154 miles.
For realz.
Okay.
Maybe 156.
But, seriously. It was a really long walk.
All the while, we were testing BGs and Sugar was popping glucose tablets as if her life depended on them. (Ummm…because it did.) I seriously don’t even know how many tablets she chomped through in order to survive our sweaty city escapade.
When we made it to the final home stretch, she hit a wall.
She sat down in the middle of the sidewalk, and declared she couldn’t go any further. She even took her shoe off. 
I could only imagine how she must have been feeling…every time I checked her she was hovering in the low 100’s – literally clinging to that range by the grace of yet another tablet. We were hot. Sweaty. Tired.
But we powered through. She hobbled back to the hotel wearing one shoe, and claimed victory.
We finished strong, my friends!
HI FIVE to Hallie and Sweets!!!!
PS (In case you ever wondered, the U.S. Treasury Building is beautiful. It might or might not resemble the White House after a long, hot, exhausting walk. And you might or might not stop to take pictures of it.  And then you might or might not notice that traffic is whizzing by next to you…and you might remember that cars cannot drive anywhere around the White House. You never know.  You might. Just sayin’.)

PSS (Tonight Hallie and I are chatting it up over at DSMA Live ‘Rents! Be sure to stop by!)
 DSMA Live on BlogTalkRadio


Day 3 – 2013 JDRF Children’s Congress

Checkout.

Breakfast at 7.

Bus to the “The Hill”.

Day 3 was jam packed with meetings with our legislators, a photo op with Vice President Biden, a Senate Hearing, and then a flight to Orlando.

I lived in the DC area for quite a long time, but I never actually visited the Senate and House of Representatives buildings. When Sugar and I participate in advocacy work at our state level, it’s a short jaunt from one building to the next — there’s just a courtyard in between.

But getting between both sides in DC, required a cab ride! This was quite exciting for Sugar, as she hadn’t ever experienced a cab ride before. I’m pretty sure we could have spent the day hailing a cab from one side to the next, and she would have thought it was as exciting as a day at an amusement park. Alas, hailing cabs wasn’t what we were there to do, and so it was time to get down to business.

In the order of our meetings…

First up, Senator Flake.
Followed by Congressman Gosar.
And, finally, a meeting with Senator McCain’s staffer.

Then we were whisked off through the underground tunnels to meet the rest of our group for a picture with Vice President Biden

Photo courtesy of Camera 1.
Sugar is in the third row; 3rd kiddo in front of the girl wearing an orange sweater.
The VP is hanging with the suits, wearing a purple tie.

No time for lunch…we were off to a Senate Hearing where we would share in the sentiment of testimonies to Congress…pleading our case as to why continued research funding for Type 1 Diabetes is so important. You can see all the testimonies HERE.

From there, it was off to the airport…and time to transition from #JDRFcc13 to #CWDFFL13!

But not until I tell you all about our adventure with Hallie and Sweets first. Stay tuned!

Further JDRF Children’s Congress Reading from CHB:
You’ve Got MailFinding out Sugar was selected to be a 2013 Delegate.
Media BlitzMedia coverage leading up to JDRF Children’s Congress.
14 UnitsThe sinking realization that your child’s life-sustaining insulin is in a fridge 3 hours away.
JDRF CC Day 1

JDRF CC Day 2

JDRF CC Day 3

2013 JDRF Children’s Congress – Day 2 (AND YOU!)

Yes.

YOU.

Today is the day that YOU need to answer the call for help. YOU need to advocate with all your heart. YOU need to stand up and be heard.

But I’ll get to that in a moment.

Day 2 began with breakfast followed by a Town Hall meeting with celebrities who are living with Type 1 Diabetes.

Photo by Camera1
Pictured Left to Right: Aaron Kowalski, Sam Talbot, Leslie Adkins, Charlie Kimball, Mary Mouser
Back: Brian Kenny

It was inspiring to hear their stories of triumph and success while living with Type 1 Diabetes. It was also validating to hear them talk openly about highs, lows, and the same frustrations we all deal with.

At one point, Mary Mouser was feeling low and needed to test while sitting up there. Coincidentally, Sugar came to find me at the same time…she was 70.

I did what any ordinarily awesome dMom does: I gave her a glucose tab, and then tweeted it:

“Treating my daughter with a glucose tablet while @MaryMMouser treats on stage. #twinlows at #JDRFcc13  — Wendy (@MrsCandyHearts) July 9, 2013

After the Town Hall meeting and lunch, it was time to get down to business.

And this, my friend, is where YOU come in.

The delegates were divided into 4 groups to begin the blitz training sessions. Basically, we were learning what to expect during our congressional meetings the following day, and how to make the most of the limited time we would have.

Which means…

**WELCOME TO YOUR BLITZ TRAINING SESSION!!!**

You see, $150M (as in ONE HUNDRED FIFTY *MILLION* DOLLARS) of funding designated specifically for Type 1 Diabetes research is at stake, and YOUR voice can make a difference.

That $150M is called the Special Diabetes Program (SDP), and it’s the reason for a wide variety of advances in what we now know about the T1D disease process, technology for management, and strategies for prevention. There have been a multitude of consortia and clinical trial networks, including the infamous TEDDY study and TrialNet, that receive funding from the SDP…and, if Congress does not renew the funding by the end of *this year*, ALL of it will come to a complete halt.

{Read more about the SDP.}

Here’s a great infographic that talks about the burden of all types of diabetes on the United States. It’s worth a few minutes of your time.  You might be surprised to learn that 1 in 3 children born in 2000 are expected to develop some type of diabetes in their lifetime.  ONE IN THREE!!!!  People!!!

WE. MUST. DO. SOMETHING.

But…what??

I’m glad you asked.

SCHEDULE A PROMISE MEETING WITH YOUR CONGRESSIONAL REPRESENTATIVES!

(Anyone can do this, by the way. Parents of children with diabetes, grandparents of children with diabetes, aunts and uncles, cousins, friends, neighbors, teachers…ANYONE who has been touched by someone living with T1D, and who wants to send the message to Congress to renew the SDP, can use their voice to advocate for it.)

What is a Promise Meeting?

You ask such great questions!

Established in 2000, JDRF’s Promise to Remember Me Campaign is all about building these relationships. Each campaign has been more successful than the last. During the 2013 campaign, we encourage people with type 1 diabetes (T1D) and their families to visit their lawmakers while they are at home.

JDRF volunteers and staff are here to help you set up meetings with your lawmakers, so that your story can make a difference in support and funding for programs that advance critical T1D research. Through the 2012 Promise Campaign, an amazing 457 meetings took place! This year, we want to touch them all, by completing 536 meetings—that’s one JDRF Promise meeting for every single Member of Congress! 

Step One – Sign up:

CLICK HERE to join the Promise Campaign.

There ya go. Easy peasy! Now someone will be in touch with you about getting a meeting scheduled with your lawmakers.

Step Two – Share it:

Prepare to share your story.

Think about what you want your lawmakers to know about living with Type 1 Diabetes. It might help to gather a few pictures to help guide the talking points you want to share. JDRF had us make a small scrapbook for Children’s Congress, and it was very helpful in keeping the conversation on task to make the most of our time.

Step Three – Sell it:

Review THIS BROCHURE to gain additional insight into why the SDP renewal is so crucial, and gather some facts to share during your meeting.

During our meetings in Washington DC, we tried to focus on a couple key points instead of talking about everything at once:

1) T1D is an autoimmune disease that can affect every organ in the body. In addition to exploring autoimmunity in general, T1D research examines other medical issues such as blindness, kidney disease, heart disease, stroke, and neuropathy. Basically, you get more bang for your buck by supporting T1D funding.

2) The SDP funds $150M research dollars annually, and JDRF funds $110M.  In other words, JDRF nearly matches government funding dollar for dollar. This balance is the direct result of people who are working hard to push T1D research forward through through bake sales, car washes, walks, and other fundraising efforts. A Promise Meeting is more than a meeting between constituents and lawmakers…it is a meeting between partners.

3) In 2012, the annual cost of diabetes to the U.S. economy was $245 BILLION...and that number is expected to TRIPLE in the next 25 years. WE *MUST* finish what we’ve started in research, or face the consequence of impending doom.

So, there ya go.

Sign up.
Share it.
Sell it.

It’s as easy as 1 – 2 – 3, and EVERY voice counts!

The Ordinaries

I’m writing this while sitting in the Orlando Airport.  Our bags are packed, and we’re ready to head home. Home to where reality awaits…laundry, grocery lists, jobs, familiar routines. I can’t help but to feel that I’m returning home a different person. The past two weeks have been a flurry of emotion. Every day seemed to highlight something I didn’t know existed inside my heart. I’ve realized the strength of empowerment and the bruises of heartbreak on the same day – within the same hour – consecutive moments, in fact.

I’d like to say that I could sit down here and pound out a simple recap, but I can’t. I’m still weeding through the intertwined memories in my mind; trying to decide which moments to share, which to hold close, and if such a thing as “in between” actually exists.

Nothing is sacred…yet everything is sacred.

I suppose that, if there isone place to start, it would be here: I am just an ordinary mom.


It’s really important that you understand this truth when you’re visiting me here. Whether perusing old posts or reading new ones, I want you to know that I’m a flawed person who is trying to do the best she can. There is nothing special about our family. We face the same frustrations and challenges as anyone else. I can’t offer you an impressive resume or a fancy book deal to prove to you why reading this blog is worth a shred of your time or hard earned money.  We’re just ordinary, and that has to be “good enough”.

I mention this because I’ll be posting about our experiences at JDRF Children’s Congress 2013 in Washington DC, and the CWD Friends for Life Conference in Orlando. There are pictures with celebrities, “AHA Moments”, and brutal truths to be had. I’m going to ask you to step out of your comfort zone to do something that you may never have thought you were capable of. I’m going to open my vulnerable heart, and tell you about my fears.

When you see those snazzy pictures, and hear about our snazzy experiences, the last thing I want you to think is “Not me.”

YES YOU.

Remember, I’m ordinary. Just like you. Your child CAN apply to attend Children’s Congress just like we did (FOUR times, by the way). You CAN make the FFL conference a personal goal.

But more than that: you CAN make a difference right where you are. You CAN bloom where you’re planted. YOU CAN CHANGE YOUR WORLD by simply sharing your story, and just being YOU. Step out of that corner, my friend. Come on out of your shell. Jump in feet first, throw your heart into it, and shine on!!!

{Cue applause, standing ovation, and climatic music.}


Let’s hear it for The Ordinaries!!! The run-of-the-mill Plain Janes and Average Joes. The ones who keep things in balance for our families. The ones who make managing our children’s diabetes look easy, while counting carbs in a complicated meal that we poured our heart into preparing. The ones who know who needs to be where when at what time while keeping a running tally in our mind about everyone else. 

Stand up and be proud, my ordinary peeps, because we’re a force to be reckoned with!

2013 JDRF Children’s Congress: Day 1

You know you’re at an event for people with Type 1 Diabetes when…

All the sodas are diet.

Randomly standing in line at Starbucks, chatting it up with Crystal Bowersox

Performing the JDRF Promise Song with our old pal, Crystal…

Most of the video is boring stuff…you know…lining up, pictures, blah, blah, blah.
The action with Crystal starts around the 32:40 mark, and they run through the song twice.
Also, yes, I cried.
Meeting long-time bloggy friends…
Hallie and Sweets from The Princess and the Pump!!!

And wearing Miss America 1999‘s crown…

She even put on her glasses for a picture after I thanked her for taking the time to take part in the AMAZING VIDEO our friends organized for Sugar last year.

The day ended with a banquet dinner, and each delegate walked up on stage to introduce themselves. I was overcome with emotion, listening to each of their voices…each individual, each story, each journey.  I looked around the room and saw so many families who live with the same challenges and frustrations…but also the same joys and victories. 
Tonight I’m going to sleep with Addie’s picture beside me. She will never have a chance to attend a Children’s Congress session herself…
I will carry Addie’s memory in my heart forever.

No child should die of diabetes.

Stay up to date on the 2013 session of JDRF Children’s Congress by joining me on FacebookTwitter, and Instagram.  You can also follow #JDRFcc13 on Twitter.  Be sure to tune into the *LIVE* town hall session on Tuesday (7/9/13) from 10am – 11am (EST) via the JDRF Advocacy YouTube Channel. Additionally, you can catch a special committee hearing on Wednesday, 7/10, at 2 pm.

Together we will change the world…let’s cure this thing!

14 Units.

That’s how much insulin was left in her pump when I realized we were on the other side of the country without a vial to refill it.

Wait.

Let me back up for a second…

Last week, Sugar and I flew to DC for the 2013 session of JDRF Children’s Congress (which, by the way, begins TODAY — stay tuned!)  We arrived a few days early to spend time with my two younger brothers on the Delaware shore. I hadn’t seen them since our move in 2006…suffice to say I was anxious to reconnect with them.

Sidenote: That cutie with the dark hair on the left is single.
Okay, he’ll kill me for that, but I’m his big sister and this is my blog.
Also, I’m sure I will delete this once he sees it.

We had a wonderful time. As I write this post, I can honestly say that I truly understand why being “Aunt Wendy” to my brother’s three children is such an awesome blessing. I fell head-over-heals in love with my niece and nephews. I don’t think I can articulate in words the joy I experienced as I witnessed Sugar making memories with her cousins.

And who could forget Artie?

Because it’s not a party without Artie!
But, alas, all good things must come to an end. We said our tearful good-byes, and my single brother drove us back to our old stomping ground, about 45 minutes south of Washington DC. 
Did I mention Artie?
We stopped to grab some lunch, and decided to have a little picnic under a tree so Artie could walk around a bit…and that’s when reality came tumbling down.
I left all of Sugar’s insulin in my other brother’s 
refrigerator 3 hours away.
No biggie. We’ll be surrounded by people who are also living with T1D in less than 24 hours. My pal Hallie is coming, and she’ll bring a vial for us. I just know she will, because she gets it, and she’s awesome like that.
Don’t freak out, Wendy. Everything is fine.
FINE FINE FINE!!!!!
“Mom? I only have 14 units left.”
Or so I thought.
Fourteen units wouldn’t be enough to make it another 24 hours.
We needed to find some insulin ASAP…on a Sunday…far away from home.
We could do this.
We headed to the local Walgreens to see about an emergency refill. Which sounds like a perfect plan until they advise you that they don’t have Apidra in stock. 
And neither did the next closest store.  Or the one after that.  Or any of the CVS stores, the Rite Aid stores, or the local Target.
I posted about our dilemma on Facebook, and the DOC sprung into action.  Offers from people who would drive as far as it would take to meet us half way, phone numbers from strangers offering to help, a million messages of love and support, calls for help on other status updates, twitter cries for insulin…
Suddenly I didn’t feel so alone and so far away from home.
We found what seemed like the only 2 vials of Apidra within a 75 mile radius, so we hightailed it up there.
But they were closed for lunch.
By this time, poor Artie was struggling in the heat, not to mention that he recently had a knee reconstruction and his leg was bothering him after several hours in the car.  I had no idea how long he would end up sitting in the parking lot waiting, so I called an old friend who said she’d come pick us up and hopped in her car without a second thought.  
(Sidenote: THANK YOU, JACKIE AND BRENDAN!!!!)
Another tearful good-bye, luggage moved to her car, and inside Target we went…
“Mom…I’m low.”
47.
Could this catastrophe get any worse?
Well, I mean aside from the fact that my phone battery showed less than 20% by this time.
The pharmacy reopened, and I handed over her insurance card…
“This card is expired, Ma’am.”
Apparently I never put our new cards in my wallet.
Awesome.
But it worked out, and an hour later, we walked out with 2 fresh vials of insulin.
CAN I GET A HALLELUJAH?!?!?!?!?!?!?
And the people said AMEN!
We’re in DC now with a pump full of insulin, and ready to get Children’s Congress started!
Stay up to date by joining me on Facebook, Twitter, and Instagram.  You can also follow #JDRFcc13 on Twitter.  There are a few opportunities to watch the events LIVE via the JDRF Advocacy YouTube Channel and you can catch a special committee hearing on Wednesday, 7/10, at 2 pm.

Media Blitz

She’s an ordinary girl.

Go ahead. Ask her.

She’ll rattle off a list of ordinary things she likes to do…and today’s list may not be the same as tomorrow’s list.  She’s a free spirit in that way — each day holds it’s own joy.

When the press releases started flying about her selection as a delegate for the 2013 session of JDRF Children’s Congress, she wasn’t sure what to do with the energy.

“People want me to tell them about my diabetes?” she asked, tilting her head. In her world, pricking her fingertips, counting carbs, and wearing an insulin pump is ordinary.

“Well…they really want to hear more about Children’s Congress, and talking about your diabetes is part of the story.” I replied.

“Oh. Well, okay. I guess that makes sense, then.”

Here’s the Fox10 segment she did… You’ll find her News Channel 12 interview here, and the 3TV spot here.

(FYI — I will embed those videos if/when I find a code.)

This time next week, Children’s Congress will be in full swing.  You can stay up-to-date by following hashtag #JDRFcc2013 on twitter, or keeping up with all the fun on Facebook.  Be sure to follow the JDRF Advocacy page!

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