HLHS Dad goes to Washington D.C.; Part 2

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

Read the first part of his story here.

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

CapitolHill1

After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

CapitolHill2

Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

jj-jameson CHD

Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

The fun doesn’t stop there, read the entire post here.

 

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