Thursday, September 13, 2012

Top Surreal Moments from DNC 2012

As you can tell, from the lack of posts, the Lihns have been a tad bit busy.

As many of you know, this past week, our family traveled to Charlotte, North Carolina for the Democratic National Convention.  It was an honor to be asked to participate in the convention and share our family story and the importance of the Affordable Care Act on our family.  For those of you following my Facebook posts, there was a bevy of surreal moments throughout the week at the DNC.  In fact, there were so many, I decided to create my own Top 28 (couldn't narrow it to 25) Surreal Moments from DNC 2012, in the order in which they happened. 

1.  Shortly after I learned I would be speaking at the DNC, I was contacted by one of President Obama's speechwriters.  Yeah, one of the President's speechwriters!  We discussed the content of my message and I stressed that I wanted to mention the prevalence of congenital heart defects, to help raise awareness on a national stage.  Fortunately, the speechwriting team, allowed me to craft nearly 100% of my speech, hence the "1 in 100" reference to Congenital Heart Defects! 

2.  As part of the process, I went through a rehearsal, several hours before my speech with Obama's speech team and other campaign officials.  I recited my speech, with the assistance of a teleprompter.  There was a lot of emotion during my run through, so much so, that I started sobbing at the end.  After I regained my composure, I learned that there wasn't a dry eye in the room.  That gave me immediate validation that the speech was powerful and effective.  In fact, one of the lead campaign officials walked up to me, told me about her daughter's heart defect and open heart surgery and asked me for a hug.  A more detailed discussion of the behind the scenes process of my speech can be seen in this Jansing and Co. clip.

3.  After rehearsals, I was taken into the arena and was given an opportunity to view and stand on the convention stage.  This helped me visualize delivering my speech.  At this point in the day, the podium was still in another area, being kept under lock and key.  After some discussion, I was allowed to go even further behind the scenes to see the podium.  Security was very tight!

4.  After rehearsal, I was told to meet back at the Time Warner Arena at 7:15 p.m.  Once there, we were guided to the basement and into the green room to prepare.  One of the first orders of business was to get makeup done.  Caleb went first and in addition to face and neck makeup, had his hair touched up.  I went next, and was seated in a chair next to Kal Penn, who gave a speech after me.  Emerson was brought in next and they put on powder and lip gloss, she was so excited.  Zoe was asleep, in her stroller, during this process, but she woke, on her own, a few minutes before we were summoned backstage.  As we were walking out the door, they threw some quick powder on her face.  

5.  As I entered the makeup room, Kathleen Sebelius, Secretary of Health and Human Services, approached me, gave me a hug and thanked me, prior to my speech.  I still have no idea how she knew who I was!  I, of course, took the opportunity to thank her for all of her efforts in raising CHD awareness and recommending pulse ox screening for all newborns.

6.  Obviously, delivering my speech was the reason we were in Charlotte for the convention.  For those of you who know me, Obamacare is of imperial importance to my family.  Anything we can do to advocate for the law is a civic duty we will fully embrace.  The opportunity to do so, in front of millions of people, was a once in a lifetime opportunity.  We were honored and humbled to be asked to be there. 

7.  While backstage and giving my speech, I felt energy from the far too many heart angels who lost their battle too early.  I've known too many to name, but I kept several of them - Mia, Travis, Gwenyth, Cora, Emma, Hayden - on my mind during my speech and I literally felt their collective spirit on stage with me.   

8.  Immediately after my speech, we went backstage and received hugs and compliments.  I was told we received a standing ovation.  I was definitely a little surprised at the crowd's reaction.  As we were leaving the backstage area, Craig Robinson, Michelle Obama's brother, was entering, as he was about to give his speech.  He looked over at me and said "great speech!"  We went down the steps towards the green room, and Rahm Emmanuel walked out, preparing to head backstage for his speech, shook my hand and complimented me; he also shook Caleb's hand and told him he did a great job as a father "standing there."  Tammy Duckworth, who gave an emotional speech, two speakers before me, congratulated me on my speech.  When Caleb went back into the green room, to get the girls' stroller, as he was walking out, Deval Patrick, the Governor of Massachusetts, approached him, with tears in his eyes, shook his hand, and said "great job out there, your family is amazing."  

9.  After gathering our things, we walked down a long hall and were escorted to a series of tables that contained 25 commemorative DNC posters.  Each speaker is asked to sign the posters.  After I was asked to sign, my first thought, was are you sure you want me to sign these?  It was a bizzare and extremely humbling experience, particularly with many of the names that were already signed to the posters.  I'm not sure what they do with the posters, but I signed all 25.

10.  After signing, we were navigated via my "speaker tracker" through a maze of back stage hallways and guided up to a suite, to watch the remainder of the opening night of the convention.  From the suite, we watched Julian Castro, the mayor of San Antonio, TX, deliver the Keynote speech and Michelle Obama deliver her speech to close out Tuesday night.  While in the suite, Nancy Pelosi and her daughter, Alexandra, who were in the neighboring suite, both shook my hand and complimented me on my speech.  After his Keynote speech, Julian Castro entered the suite and shook Caleb's hand and told him we did a great job.  

11.  After Michelle Obama's fantastic speech, a quick interview with USA Today and the close of night 1 of the convention, we were guided out of the arena.  As we made our way through the huge crowd, which wasn't easy with a double stroller, we were stopped by numerous convention attendees, congratulating me on my speech and/or said we did a great job and have a great family.  The positive reaction caught Caleb and I off guard; it was both humbling and rewarding, and validating to know that the speech had such an impact.   

12.  Once outside the arena, we had to navigate the thousands of convention goers, also walking the streets of Uptown Charlotte.  While walking away from the arena, people continued to stop Caleb and I and congratulate us on our journey.   It was almost overwhelming.  One woman ran up to me and yelled "You're trending on Twitter!"

13.  I also met countless strangers, who after seeing my speech, told me, with tears in their eyes, of their children's CHD stories, including a campaign staffer and an AEW union official.

14.  While enjoying our midnight walk through Charlotte, Zoe, understandably, started getting fussy.  In an effort to distract her, Caleb put her up on his shoulders.  After a block or two of Zoe getting a bird's eye view of the crowd, we heard someone jogging, almost out of breath come up behind us and stop us.  He introduced himself as Greg Stanton, the mayor of Phoenix.  "I'm your mayor!"  He complimented me on my speech and wanted to take a picture with our family.

15.  After returning to our hotel room Tuesday night, exhausted and excited, Caleb and I began reading our emails and text messages, of which there were many.  From those messages we learned that my speech was not only well received by the crowd in attendance at the arena, but also the media.  We were informed there was numerous discussion of the impact and importance of the speech on MSNBC.  After later watching a replay, it was surreal to hear my name, and our family discussed, from the mouths of Rachel Maddow, Chris Matthews, Lawrence O'Donnell, Ezra Klein, etc...

16.  While reading the literally hundreds of emails I received, I was touched and brought to tears by so many of them.  One email was from a man who said his family had never seen him cry, ever.  During my speech, he started crying and he thanked me for helping him show his family a different side of him.  I heard many stories as emotionally impactful as this one.  I am slowly doing my best to respond to all of the emails.  

17.  After a few hours of sleep, we woke up Wednesday morning to find countless media reports and photos of our family in publications including USA Today, The Guardian, New York Times, Huffington Post and others.  Very surreal.

18.  Wednesday morning, I received calls from MSNBC, a local Phoenix news station and Glamour Magazine, all requesting interviews.  As long as I can talk about CHDs, I'll give interviews all day.

Doing a satellite interview, at the convention site, with Channel 12 in Phoenix.

19.  One of the most surreal moments, for me, was the invitation to sit in First Lady, Michelle Obama's suite Wednesday night during Bill Clinton's speech.  Um, yes!   

20.  I received a congratulatory email from one of the speechwriters I worked with.  He told me that after my speech, as we were walking offstage, the back of the arena was chanting "Zoe! Zoe! Zoe!" while giving us a standing ovation.  How awesome is that!?

21.  Wednesday night, I nervously went to the second night of the convention, knowing I was sitting in Michelle Obama's suite.  I felt slightly out of place navigating through secret servicemen, but after a glass of wine, I was just fine! 

22.  The seats were assigned in the First Lady's suite.  After glancing at the various name placards, I saw my suite mates, in addition to Michelle Obama, included Julian Castro and his twin brother, Kathleen Sebelius, John Estrada, Lily Ledbetter, US Congressman John Lewis and, in the next suite over, VP Joe and Jill Biden!  

View from Michelle Obama's suite.
President Clinton delivering perhaps the best speech of his career.

23.  While in the suite, I realized I had to go to the bathroom.  I made my way to the suite door, and discovered several secret service agents standing in front of it.  So, I kindly asked them where the bathroom was, they slowly stepped to the side and pointed.  This brief interaction made me realize the enormity of the situation, and how strange life in politics is.  

24.  After sitting in the suite for a bit, Michelle Obama made her way in.  Her Chief of Staff introduced me to the First Lady.  Michelle Obama immediately embraced me, then took both my hands and told me how inspiring and wonderful my speech was; she told me that "we" (I assume she and Barack) talk about the importance of eliminating lifetime caps quite often and how our story is truly inspiring and perfectly illustrates the importance of their work.  Wow, just wow!!  To say it was difficult getting to sleep Wednesday night would be an understatement.  Even Zoe stayed up until 3 a.m. bouncing off the walls!

25.  On Thursday, the third and final day of the convention, we picked up our convention credentials and planned to get to the arena early to meet up with Sierra and Andy - the talented producer and videographer who we originally met in January of 2012 when filming Faces of Change: Life Without Limits.  Even though they were only at our house a few days, when they left we felt like family was leaving.  We've kept in touch with them since then, but were very excited to see them in person again.  The girls were excited too.  We love you Sierra and Andy!

Andy & Sierra

Together again!

Sierra got to hold Lambsie.

26.  After letting Sierra and Andy get back to work, we found some seats and settled in for the final night of the convention, excited to listen to Barack Obama address the nation.  We knew it would be a long night for the girls, since we sat down at 5:00 p.m. and President Obama wasn't scheduled to speak until 10:15 p.m.  Fortunately, James Taylor lulliby'd Zoe to sleep for an hour-long nap.  The girls did great and seemed to be soaking up the atmosphere.  Then, it happened.  President Obama, in his speech, said:  "You're the reason there's a little girl with a heart disorder in Phoenix who will get the surgery she needs because an insurance company can't limit her coverage."  What a fantastic moment, to hear him refer to Zoe, not by name, but it was unequivocal who he was talking about.  He continued to refer to her on the campaign trail, the days following, in Iowa and Florida.  It is so awesome that Zoe is helping to make the world a better place and do her part to better healthcare for families with sick children.  

27.  Following President Obama's speech, we made our way out of the arena, still in a daze from President Obama referring to Zoe.  On the way out, we were stopped by many convention attendees who wanted to take pictures of our family or with our family.  What an honor!  Oh, and I got a good chuckle that I "look much taller on stage."

28.  When we arrived home Friday evening, while watching the Daily Show, we saw Jon Stewart discussing Obama's speech Thursday night.  He talked about the portion of the speech where Obama gives the public credit for making a difference.  Then, after playing the clip where Obama refers to Zoe, the camera flashes back to Jon Stewart, who in a sarcastic tone, says "You're welcome!?"  We love the Daily Show, so it was pretty cool to have him include the subtle reference to Zoe.

As amazing as the whole week in Charlotte was, and how surreal the whole experience was, the most inspiring and monumental part of this entire experience was delivering the message of the importance of Obamacare to a large audience and raising awareness, to the general public of the prevalence of congenital heart defects.   It was such an honor to learn afterwards the effect and impact of the speech. 

Hopefully, last week's events brings us closer to two of my biggest wishes - that one day no families will have to deal with congenital heart defects, as there will be a cure, and that one day every American will have access to adequate healthcare.

Thank you all for your love and inspiration.  Thank you to those who support me and my message, even if they sit on the "other side of the aisle." 

And, as I've been so inspired these past few weeks, let me inspire you with one of my favorite quotes:



  1. I could not possibly love this more. I am beyond proud of you, and honored to call you now just a heart mom in the trenches alongside me, but also my dear friend. Love you and am SO proud of you!!!

    1. It touches my heart too. I'm too proud of you. Please stay the same.

      Christine Eubanks

  2. YOU are a hero to us all ;] So happy to see what you are doing in the CHD community.

  3. You know that feeling in your chest...that feeling of pride welling up and wanting to burst from it. Where your chest actually aches from the pressure of trying to contain such immense feelings! That's how I felt reading this. You are simply amazing! So happy for you, so happy for your family, so super thrilled for what you have done for our community of special little loves! Thank you! <3

  4. So awesome! You did a fantastic job and are an amazing voice for our babies!!

  5. It was wonderful reading all that you got to be part of the past week. Great job in spreading awareness for CHD Stacey! So very proud of all that you have accomplished!

  6. Wow! Reading the top 28 brought tears again to my eyes. I am so happy for you, proud of how amazing you did and grateful for the message you spoke!

  7. I always thought I'd be famous before you, I guess u beat me to it ;). Love you and all ur drive to make a difference!

  8. I got chills reading this! What an inspiration! You are making such a difference and spreading such awareness! Way to go!!!

  9. I am SO SO proud of you. Ya know.. before I became a "heart mom" 5 years ago I had no idea who anyone was, what could be done (if anything) about CHDs, and just plugged forward with life, totally unaware of the enormous possibilities out there. I am so lucky to be part of a club (even if just standing off to the sidelines, anonymous but cheering where moms like you are making such an awesome difference in the crazy world of CHDs. Thank you so much. xo

  10. Thank you so much, Stacey, for bringing awareness to the insurance company's dirty little cap secret. Ours was 1 million. We were floored that we might reach that by the time our Chloe is 3. We also do not qualify for government aid and have SO many deductibles and random things to pay for.

    You are brave.

    Thanks again,
    Molly Breedlove
    Chloe's Mommy (almost 3, 2 open hearts down and 1 to go, HLHS)

  11. And I'm in tears again. Thank you for spreading CHD awareness, for standing up for the Affordable Care Act, and for being an advocate for CHD families everywhere.

  12. What an amazing story. Thank you for all you do!

    Melissa Andrew - mom to Elaine HRHS, PA, PDA
    Executive Director,
    Intermountain Healing Hearts

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