JDRF's Children's Congress, Part 2: The Most Amazing 3 Days!!!

One month ago (June 20, 2011), Charlotte and I began the most amazing 3-day journey! After spending our morning strolling around The National Mall, we headed back to the hotel for the official registration for the JDRF 2011 Children's Congress. From the moment we stepped to the registration tables, we were greeted by the friendliest, most enthusiastic people and felt so welcomed! We got ourselves signed in and received a bag with our folder, name badges, shirts, and other goodies...including a Build-A-Bear rabbit that Charlotte named "DC Bunny"!  Charlotte was so excited to see so many other kids checking in with their families...and she made fast friends with two of the sweetest little girls ever (Avery from New Jersey and Sydney from Idaho)!!! And from my perspective, being around so many other D-Moms and D-Dads was incredible...and it was truly amazing to be in a room with around 300 people who all truly "get it"!!!

Sydney, Charlotte & Avery

Our first day was lots of fun! After registration and a quick lunch with Sydney and her mom (Shamae), we were back for song rehearsal, state delegate photos, and then the Welcome dinner! The delegates did a great job rehearsing the "Promise to Remember Me" song with Crystal Bowersox. Charlotte had the opportunity after the song rehearsal to meet Crystal and get a quick picture taken. I have to say, Crystal was really down to earth and so nice with all of the delegates. And it totally made Charlotte's day when she gave Crystal a set of Mardi Gras beads (which we brought to trade with the other delegates attending CC) and she put them on right away and still had them on later when we saw her for the state delegate photo!!!

Charlotte & Crystal Bowersox -
check out the Mardi Gras beads :)

The Welcome dinner was amazing too! We were officially welcomed to the event by Stephany and Ellie Shaheen (Chair Mom and daughter), Jeffrey Brewer (JDRF President & CEO), and Aaron Kowalski, PhD (Assistant Vice President, Treatment Therapies). And while they were all quite impressive, I think I was most moved by the introduction of each of the child delegates...I don't think there are any words that can truly capture how I felt as I watched and listened to over 150 children from across the country (including several international delegates) share their name, state, and age of diagnosis; it was compelling to say the least!

Charlotte & Sydney...and the most AMAZING D-art...
the portrait above was made by a delegate's father from
1 year's worth of her used test strips

Charlotte and I were so pumped up from all of the day's excitement we could hardly sleep! We woke early the next morning and started our day with breakfast followed by the Town Hall: Role Models with Diabetes. Charlotte had the amazing opportunity to hear from Associate Justice of the Supreme Court, Sonia Sotomayor...she spoke candidly about her diagnosis and how living with Type 1 diabetes has influenced her life. The 2nd panel for the Town Hall consisted of celebrity guests Dr. Nat Strand (winner of The Amazing Race), Gary Hall (swimmer & Olympic medalist), Carling Coffing (professional golfer), Kendall Simmons (former NFL player for the Pittsburgh Steelers), and Dr. Aaron Kowalski (JDRF research scientist). Each of these celebrities answered questions about their experiences living with Type 1 diabetes and how it's impacted their lives and how some (who were diagnosed later in life) were told that they would not be able to achieve (what they have now) because of diabetes. It's been interesting listening to Charlotte talk about the Town Hall. I thought at her age she might have gotten fidgety and not really listened, but I was clearly wrong about that! It seems that she did, in fact, listen intently and walked away from the event having learned that, despite her diabetes, she really can do anything she puts her mind to...a great lesson for everyone!

After the Town Hall we attended our Hill Blitz Training session and then enjoyed our Sponsor Luncheon before heading out to Upper Senate Park for the amazing (albeit, incredibly hot) Song Performance! The delegates were joined by Crystal Bowersox as they performed "Promise to Remember Me"...it was a great ending to another incredible day!

A very sweaty Charlotte & Avery
after their song performance

Our final day began very early...but there was no time for being tired! We had a quick breakfast, picked up our scrapbooks to bring to our meetings and headed out to Capitol Hill (with the other Louisiana delegate and her mom) for our meeting with Senator David Vitter. Charlotte's other meetings were with with Congressman Steve Scalise and Senator Mary Landrieu. The focus of the meetings was to encourage our members of Congress to join the Diabetes Caucus if they hadn't already and to get them to sign on a letter urging the FDA to expedite the outpatient research guidelines for the artificial pancreas. Charlotte's meetings with our members of Congress went well and I left each of them feeling satisfied that her story and message were heard!

Charlotte and Congressman Steve Scalise

Following our meetings, we attended a Senate Hearing: Transforming Lives Through Diabetes Research. We listened to powerful testimony from Kevin Kline, Griffin Rodgers, MD with the NIDDK/NIH, Charles Zimlicki, PhD with the FDA, as well as 4 amazing Children's Congress delegates (Caroline Jacobs,Jack Schmittlein, Kerry Morgan, and Jonathan Platt). I believe Charlotte was most intrigued by the testimony of Kerry Morgan and her experiences participating in clinical trials, including an inpatient trial with the artificial pancreas. Charlotte has shared with me that she would love to have even one day, as Kerry described, without having to worry about blood sugars and carb counting! I'm hopeful that she'll be able to have many of those days....perhaps not right away, but I'm determined to keep pushing until it happens!

Charlotte and I walked away from our experiences at Children's Congress feeling inspired and empowered! We're excited about our experiences and the impact we made during our visit to Washington DC! Our journey in DC may be over, but we know our work has really just begun! We can't stop now...so we've signed up for the 2011-12 Promise to Remember Me Campaign. We will continue meeting with our Members of Congress and working hard to make a difference! And one day Charlotte (and everyone else living with Type 1 diabetes) can experience carefree days without worries of blood sugars, insulin and carb counting...and one day they'll all be able to say that they had diabetes!


***Disclaimer: Charlotte was selected as a delegate for the 2011 JDRF's Children's Congress. JDRF paid for our air travel as well as our hotel accommodations and some meals during the 3-days of the Children's Congress events. JDRF did not ask for me to blog about Children's Congress...I just chose to since it was such an incredible experience! 

JDRF's Children's Congress, Part 1: Before the Official Events

It's taken me a few days since getting back home from Washington DC to sort through all of my thoughts to try and put this post together. I think I've finally come to the realization that I can't possibly squeeze everything into one post...so I'm splitting it up into a couple of posts. So to start off, here's a recap of our 1st 2 days in DC...the Saturday and Sunday before all of the official Children's Congress events began.

On our way to DC!!!

Last Saturday morning seemed to take forever to arrive and came too quickly all at once....we'd been waiting for this day to arrive for months! Charlotte was so excited to travel to Washington DC for JDRF's Children's Congress!!! She couldn't wait to fly on the plane...the last time she'd flown was just a few months before her diagnosis at the age of 2. I was a little anxious about security and travelling with all of our D-supplies, but everything went really smoothly. Our bag of supplies made it through security without question. Our only "hiccup" was that Charlotte beeped going through the metal detector (both going and coming back home) and ended up getting the official "pat down"...the TSA staff was great with her though and made it as quick and non-stressful as possible. It wasn't until after going through security on our way back home that I finally realized she was beeping because of the metal clip she was wearing on her pump, oops...lesson learned for the next time we travel! Our flight was on time and went smoothly...hardly any turbulence at all! Charlotte really enjoyed flying...and I was glad to have her Dexie on her and working well for our flight to DC. Her blood sugar stayed pretty steady, but did drop at one point and I was able to catch it before it got to be an issue! I'm sure she got tired of me asking "What's Dexie say?", but having never flown with D I just wasn't sure how her blood sugar might be affected.

Charlotte at the Washington Monument

After getting settled in our hotel room, Charlotte and I decided to wander out and explore the area. We walked a few blocks and saw the Washington Monument...and had a bit of an adventure trying to get a glimpse of the White House. It was around 5pm or so and the area behind the South facade of the White House was already being fenced off for the evening...so we got as close as we could and snapped a few pictures. As we started walking back toward 15th Street, we were forced to make our way through a big muddy area in the field. We managed to stay pretty steady and upright, but Charlotte was none too thrilled when she ended up with mud in her sandals and between her toes. So after that adventure we headed straight back to the hotel to wash our feet (and shoes) and then go grab some dinner.

Sunday morning we woke up early and started off on a new adventure. We explored the Newseum for the better part of the morning, then off to the National Gallery of Art and National Museum of American History.  Charlotte was really impressed by the American Flag...and I think she enjoyed the First Ladies exhibit too (one of my favorites)! But even with all of the amazing sights to see and things to do, Charlotte was most eager to get back to the hotel...she knew that one of her new friends, Avery, was supposed to check-in at the hotel on Sunday afternoon and she couldn't wait to finally meet her!

Incredible view from the 6th floor
balcony at the Newseum

By mid-afternoon, I decided we'd done enough sight-seeing and agreed to head back to the hotel. Once we got back and all freshened up, Charlotte insisted that we head down to the hotel lobby to hang out and wait for Avery and her family! I ended up recognizing them on their way in and we finally met in person! The girls were a little shy at first..but we decided to meet up for dinner that evening to give them a chance to get to know each other a little better.

Instant friendship!!!

Charlotte and I had a GREAT time at dinner with Avery and her family! It was so nice to spend time with another mom who "gets it" and a family the "same" as ours! Charlotte and Avery really seemed to hit it off at dinner...they were so cute whispering secrets to one another and just being silly girls! Diabetes was present (as always)...and was what brought our families together...the girls knew they were the "same", but it went unspoken and took a back seat for the night!

After getting back to the hotel, I asked Charlotte if she enjoyed our dinner with Avery and her family. She looked at me as if I was crazy and told me "Of course, mom!" and followed that up by telling me that it felt "awesome" to not be the only one checking her blood sugar before dinner! The delight in her voice and in her eyes when she shared those words warmed my heart! Words can't begin to express how much something as simple as that means to me! I'd been told that our trip to JDRF's Children's Congress would be an amazing experience...little did I know! This opportunity gave both Charlotte and I so much more than I could have ever imagined!

Stay tuned....Part 2 of our Children's Congress experience to come later this week!


***Disclaimer: Charlotte was selected as a delegate for the 2011 JDRF's Children's Congress. JDRF paid for our air travel as well as our hotel accommodations and some meals during the 3-days of the Children's Congress events. JDRF did not ask for me to blog about Children's Congress...I just chose to since it was such an incredible experience! 

Beauty Shop "Small Talk"

This morning I spent some time at the salon getting my hair cut and highlighted for our upcoming trip to JDRF's Children's Congress. I figured it was just going to be some nice, quiet "me" time...no kids and no D to worry about. Little did I know...

I settled into the chair and started chit-chatting with stylist...just a little small-talk to pass the time. I mentioned that Charlotte and I would be leaving for Washington DC next weekend and she asked if the trip was for anything in particular...so I explained that Charlotte is one of 2 delegates chosen to represent our state for JDRF's Children's Congress and a talked a little bit about what we will be doing during out time there. She seemed genuinely interested in learning more about Charlotte and how her life is impacted by Type 1 diabetes...so I explained about her insulin pump, blood sugar checks and carb counting. She asked about Charlotte's diagnosis and how we knew...so I explained. I told her that Charlotte was 2 years old when she was diagnosed and that we had noticed that she had been going potty A LOT, having more potty accidents, and soaking through her Pull-Ups to the point that they would literally drip urine. I also told her how thinking back we now realize that she was drinking A LOT too.

Charlotte - 3 months before diagnosis

After listening to the story she mentioned that she has a 2-year old little girl who has been drinking a lot and soaking through her diapers. She said she had mentioned her concerns to her daughter's pediatrician who told her it was probably nothing to worry about and that toddlers go through phases where they do things like that. But she said she still can't shake the feeling that it's something more than "just a phase". I try hard to not be an alarmist...I realize that not every child who pees a lot has Type 1 diabetes. BUT...I would hate for anyone to go undiagnosed until its too late because they didn't know the signs to look for or what to do! So I shared with her some of the warning signs of Type 1 diabetes: extreme thirst, frequent urination, increased appetite, sudden weight loss, drowsiness/lethargy, and fruity smelling breath. I told her that I truly hope the pediatrician is right about her daughter's drinking a lot being a toddler phase...I hate to think about another child being diagnosed! BUT...I also encouraged her to not ignore her concerns and to have her daughter's blood sugar checked if it hadn't been already. She seemed to be truly appreciative of the information and said she is going to have her daughter's blood sugar checked.

Funny how what I thought would be a couple hours of "me" time, turned in to so much more...and how a little "small-talk" in a beauty shop might have saved a little girl's life!

Charlotte's Awesome Adventure -- Diabetes Blog Week - Day 5

It's Day 5 of the 2nd Annual Diabetes Blog Week! I realize I'm getting this in right under the wire, but between the Blogger issues yesterday and Charlotte being sick the past few days I'm honestly surprised I'm getting this in at all...whew!

Today's official topic is "Awesome things": What awesome thing have you (or your child) done BECAUSE of diabetes? 

For this topic, I (again) deferred to Charlotte to get her thoughts on this. Her response made me laugh...she initially asked me, "Do I have to come up with 10 things....cause I don't think I can!". She was relieved when I let her know that she only had to think of one...and she told me, "Well, that's easy....it's Children's Congress"!

I guess technically she hasn't done it yet, but...

Charlotte is one of 150 children throughout the U.S. selected to represent her state on Capitol Hill this summer to remind Congress and the Administration of the critical need to find better treatments and a cure for a disease they live with every day -- type 1 diabetes.

These children -- ages 4 to 17, representing all 50 states and the District of Columbia -- will converge on Washington, D.C., to talk about the challenges of living with type 1 diabetes to lawmakers during the Juvenile Diabetes Research Foundation (JDRF) Children's Congress 2011, from June 20 to 22.

Check out what Charlotte has to say about Children's Congress and click over to learn more about Charlotte and the other 2011 delegates.

Charlotte is really excited about this opportunity to meet travel to Washington to advocate for herself and all the other people (children and adults) living with type 1 diabetes. We're hopeful that our visit will make an impact and help to bring us another step closer to the cure. She's also excited to meet and make friends with other children who are the "same" as her...and I have to say that I'm especially excited that opportunity for her too!