Wednesday, March 23, 2011

JDRF Government Day: Hittin' the Hill

JDRF's Government Day is actually a four day event. Two days are spent in training and informational sessions. Two days are spent on Capitol Hill meeting with members of Congress.

The days that we spend on Capitol Hill are our chance to meet with our members of Congress. It's our chance to put a face on diabetes. It's our chance to make diabetes personal. It's our chance to tell our stories. It's our chance to stand up for our loved ones (or ourselves) and make our voices heard.

The days on Capitol Hill are what I was MOST looking forward to!

Let me loose and I can talk about diabetes all day long.  And that's just what I did!

Sort of...

Monday morning dawned very early.  Sweets was sleeping in between us and I had to remove an arm and leg that was strewn across my body before I could drag my weary self to the shower.  But before I could even put my feet on the floor.... I felt it.

"NO.  No, no no, no, no!  This is not good...."

I knew right away that I was in trouble.  Two words....

Stomach.  Flu.

SO NOT COOL!

My mom had it the week before and was OUT for days.....  The kids in my class have been passing it around like candy.  Sweets had it a few weeks ago...  I guess it was my turn.

I will spare you the gory details. 

Suffice it to say that I missed my Hill meetings on Monday.  Thank Goodness for the other advocate from Ohio!  He was a life saver!  He had no meeting scheduled on Monday so he took my four.  But I was incredibly disappointed.  I missed out on meeting with the Ohio Senators.

Tuesday morning came... and I was good to go.  I was NOT going to miss out on this experience!  I might have been slightly light headed.... I might have almost passed out in Rayburn building....  but sucked it up and put my game face on!

And it was an INCREDIBLE day!

We decided that it would be nice to take Sweets to my meetings.  SHE is the face of diabetes.  SHE is wearing an insulin pump and cgm.  SHE is the perfect model to really show what the artificial pancreas would look like and what it could do.  Plus.... (if I do say so myself...) She's pretty darn cute.  I might be forgotten... but that cute little gal with bows and the sweet smile and the big blue eyes???  She leaves an impression.

Sweetpea's job was the to be the official business card passer outer.  We had my JDRF business card (I feel so important!) and we had HER Diabetes Dude business card (because every 5 year old needs her own card, right?).  She took her job very seriously.

I started our meetings by introducing us and telling what it's like to live with diabetes 24/7/365.  We showed her little fingers... full of tiny holes after *only* 2 years.  We showed her pump and her cgm.  Sweets told what she thought of shots (Screwed up face... "Shots?  TERRIBLE.").  She was able to tell how long she'd been living with D and how much she hopes for a cure ("a LOT").

I did not cry.  Can you believe it?!?

I talked about the specifics of the APP.  I thanked our Congress men and women for supporting the SDP (or stressed our thankfulness that it was approved).  I explained what we needed from them (NOT MONEY - just a simple signature on the letter to the FDA Commissioner....read more here).

We met with staffers in many of the offices.  Everyone we met with was very kind and very interested in what we had to say.  All were patient with Sweets and interested in what SHE had to say.  All made us feel welcome.

We were lucky enough to meet with two of our actual members of Congress!

The first person we met in person was Representative Jean Schmidt (OH-2).

(You must forgive J's attire... We did not plan on him or Sweetpea attending the meetings!  He was there as a "backup" in case Sweets got antsy.  He was waiting outside the room for us - but Representative Schmidt insisted her come on in and make himself at home!)

She was incredibly kind and gracious.  Sweets had a little cold and she immediately got her a kleenex!  She has grandchildren of her own and showed us their pictures, which fill her office.  I was mortified when Sweets put her feet on the sofa during our talk and crawled across to get a better look at the pictures.  Representative Schmidt was so sweet!  "Don't worry about it!  I've got grandchildren!  And you're a tax payer. You paid for that couch! It's yours!"

She seemed genuinely interested in what we had to say.  She appeared very supportive of this new technology!  I have my fingers crossed that she will sign on to the letter!

The next Congressman we met was Steve Chabot (OH-1). 

When we entered his office, one of his staffers, Adam, greeted us immediately.  He knew exactly who we were and he told us that he had just talked to the Congressman and he was on his way back from a vote.  We waited a few minutes... Then he told us that the Congressman has asked to meet us in the Rayburn Room and he would take us there.

As we left the office and waited for the elevator, Adam moved is coat jacket aside for a split second... and I saw it.  Tubing.  At that moment, he asked us if Sweets was the only one who had D.  We said yes.  And he said, "Look what I have!"  And he pulled out his insulin pump!

How cool is that?!?

Adam was wonderful!  He was so kind to us!  We found out that he grew up close to where we live and went to college where I attended grad school.  He escorted us through the tunnels in the basement of the Rayburn building... through security... past the little monorail thing that only Members can use if a vote is going on... up the elevator.. and into the Capitol!  He pointed out the doors that the President enters when he gives the State of the Union address.  And he took us to the Rayburn Room to wait on the Congressman.

Congressman Chabot came in a minute later and sat down to talk with us.  He was incredibly kind.  As it turn out, his niece was diagnosed with Type 1.  So he knew a little about this disease.  At one point, he excused himself to go back onto the floor of the House to make sure he wasn't missing a vote!  When he came back, he told us that he usually does not commit to anything right away but that he could tell us right then that he would sign the letter and support us in this cause!  WONDERFUL!

And if it already wasn't awesome enough.... he took us on a little tour of the Capitol!  We walked down a hallway and he pointed out the view out a window.... a breathtaking sight of the Washington Monument.  He showed us around and told us different stories about the rooms and their history and interesting facts.  He could have gone on longer, but we had to get to our meeting with the Speaker of the House!



I was very impressed with Congressman Chabot.  He took time out of an obviously busy schedule to not only talk to us... but show us around.  His love for his job, history, and this country was obvious.  His kindness made our day... Made our TRIP!  It was a "once in a lifetime" experience that we won't soon forget!

We also had the privilege of meeting with the Speaker of the House, John Boehner (OH-8).  He was busy so we were able to meet with his Deputy Chief of Staff, Stephanie Milburn.  She was also very kind and interested in what we had to say.  She asked good questions and was also curious about what Sweetpea's symptoms were and how I knew she had D.



What an incredible experience!

I feel so honored to have been able to represent not only Ohioans, but ALL people with diabetes.  It truly was my honor and privilege to speak on your behalf.

I believe very strongly that we must make our voices heard.  And that one voice can make a difference.

I am humbled to have had the opportunity to be one of those voices during JDRF's Government Day!

Other Government Day Posts:
JDRF Government Day:  Part One
JDRF Government Day: Blogger Roundtable

**Disclaimer....  I am an Action Team Chair (basically I'm in charge of Government Relations/Grassroots Advocacy) for our local JDRF chapter.  JDRF paid my air travel, hotel, and some meals during Government Day.  J and Sweetpea paid their own way.  I just don't like to be away from my girl... or her Daddy... so I begged them to come!  JDRF did not ask me to blog about this event!  Everything I write is what I personally think.  I'm just telling it like it is... at least to me!**
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8 comments:

  1. It's great to read how receptive and kind everyone was!

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  2. What a great experience for all of you! So glad they are hearing your voice in DC!

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  3. Love that the whole family got in on the action. The thought of Sweets handing out the business cards put a smile on my face.

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  4. Hallie, you were great! I won't even qualify that with "for your first time". Just flat out great!!! It can be intimidating to do those meetings, and you represented JDRF and the T1 community so well. I am so happy to be working with you in the Midwest!

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  5. Again I am so incredibly thankful that you were there to do all of this for us. I am not a political person but I am a letter writer, phone caller, scientifically minded lady - whom is incredibly thankful for patient social people like you and your gal to help with this important aspect of d and our government.
    Thanks a million :)

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  6. Good post !! What cms do you use on your www ?

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  7. Awesome! Love the way all of you were included without hesitation and open arms!
    Thank you for speaking up for all of our T1's. It's people like you that make a difference! Thanks to your whole family including sweets who is so brave and dad who was ready to run interference!

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  8. I am so glad to hear that you're doing this! Sometimes I feel like because of our nation's "obesity epidemic" there is so much focus on type 2 diabetes that type 1 is frequently overlooked. This is something that has significantly changed since I was a kid with D and I really feel that it's had a negative effect on advocacy, research, and awareness. But, in doing what you're doing, you are raising awareness among the right people.

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