Candy Hearts: A Family's Journey With Type 1 Diabetes and Celiac Disease: jdrfphoenix

Showing posts with label jdrfphoenix. Show all posts

Monday, July 8, 2013

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 Facebook, Twitter, 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.

Tuesday, July 2, 2013

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!

Tuesday, February 5, 2013

You've Got Mail!

She was 480 this morning.

I mean...not this morning when she woke up. She was 480 at school, before PE.

I was in my PJ's, contemplating a bowl of oatmeal for breakfast while pondering dinner. I worked last night, have some emails to return, and an Animas post to write...basically I was just getting my day figured out when the phone rang.

Throw on jeans, tuck hair behind ears, add a little blush and a dab of lip gloss...I'm seriously getting to old to make myself look "spontaneously fresh" first thing in the morning. Anyway, I just got home from changing her site and filling her pump up with new insulin.

And I'm reminded, once again, that insulin is NOT a cure.

But back to the mailbox...

We applied -- for the FOURTH time -- to attend the 2013 JDRF Children's Congress this summer. Okay, technically she was a few measly days shy of the 4-year-old age requirement when we applied in 2007, but whatever.

2007 -- "Thank you for applying."
2009 -- "Thank you for applying."
2011 -- "Thank you for applying."

Which brings us to 2013.

I debated applying over and over in my mind. One day, I was gung-ho, and the next I wondered if it would be better to put it off another couple years. It's been harder to deal with rejection with each passing year, and I honestly just wasn't sure if either of us were up for it right now. I wavered long enough that I was left with three days to make a final decision.

Then Hurricane Sandy hit, forcing JDRF to change the deadline.

Which, basically, gave me more time to oscillate as I watched the horrible after effects of Sandy unfold in the media, while trying to escape the political climate of the 2012 Presidential Election.

Before I knew it, the deadline extension was looming, and I couldn't stagger any longer.

Either apply or don't, Wendy. That's all there is to it.

Period.

So...we sat down together and drafted a letter. We talked about the election and the types of powerful decisions that are made in Washington DC. We talked about where insulin technology has been and where it's going. We talked about the relationship between Celiac and Type 1 Diabetes. Then we filed our application, and agreed that, no matter what, we'll keep our heads held high.

The automated email reply said we should hear confirmation by "early January 2013".

January came...and January went.

Almost.

One day late last week, I sent an email inquiring about the notification letters. The reply informed me that our letter was being mailed soon, mentioned something about the possibility of a phone call, and apologized that more information couldn't be provided.

A call?

That's curious.

Then I read this post by Moira after it popped up on my FB newsfeed yesterday.

The letters were really on their way.

I happened to be outside when the mailman arrived. I walked over to see if he had filled our mailbox, and that's when I saw the blue letter return address peeking out from beneath a circular of store ads. He handed me our mail, and I picked it out immediately.

It was heavier than a single sheet of paper.

I held it up to the light.

Something was different.

I'm very familiar with the JDRF logo, and could tell something about the logo on one of the pages was different.

I handed our pile of mail back to the mailman, and told him my husband would collect it when he got home from work.

He stared at me like I was nuts, but I wanted Mr. Rose to check it out to see what he thought before sitting her down to open it...