It’s hard to believe it’s already been two weeks since the Congenital Heart Legislative Conference. There’s still so much to write about and you’ll continue to see some posts related to the conference. Today I’d like to highlight a really important topic for not just heart families, but lots of other people as well. Today I’d like to introduce you to an extraordinary person that I met during the Legislative Conference. After checking in for the Conference, I decided to walk up to a random table and introduce myself. The first person I met was a 19 year old named Jacob Kilby who was from California. As we chatted, I learned that Jacob – like my Nolan – was born with HLHS. At a very young age, however, Jacob needed, and received, a heart transplant.
Now, at 19 years old, Jacob needs another heart transplant to save his life. And this isn’t Amazon.com: you can’t just put in an order for a new heart and just wait for it to arrive. There is a list you’re placed on and then you have to wait for the right heart. So Jacob waits. That’s heavy stuff. What’s awesome, though, is that you wouldn’t know if you got to know him a little bit. He’s got a ton of energy, is a surfer, and has a great sense of humor and adventure. I was really fortunate to spend the two days of the Conference getting to know Jacob a little bit, along with his Aunt Charity, who supports him on his journey.
The really cool thing is that he recently started his own foundation to promote organ donation called Swell Hearts. As I mentioned before, there are no organs on-demand: they have to come from somewhere, specifically from donors. So Jacob is taking the initiative by using his life experience to encourage people to become organ donors. I really have to hand it him: he’s really striving to make a difference, in spite of waiting for a new heart. He could easily sit around and wallow, but he works hard to make the world a better place…and I really believe he’s going to achieve some great things! Check out his video:
According to the Mayo Clinic, there are over 100,000 people in the US awaiting an organ donation. That’s an insanely high number, and sadly many do not get the call that they will be receiving an organ and that’s a real tragedy. I’m an organ donor. Are you? If so, great job! If not, why not? There’s a lot of myths surrounding organ donation. Some people think doctors won’t work as hard on you if you’re in an emergency once they find out you’re a donor. This is completely untrue: doctors will do everything they can to save your life, just ask any physician. Some people worry they can’t have an open-casket funeral if they donate organs, but this also isn’t the case as there will be no visible signs of donation. You can read more myths about organ donation here: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/organ-donation/art-20047529 And no, if you choose to be a donor, no one is gonna grab you in your sleep and remove an organ. C’mon son.
For heart parents, this subject matter is difficult but crucial for us heart families. The reality is that some HLHS kids – like Jacob – will need a heart transplant even if the three surgeries are successful. Obviously I hope Nolan doesn’t need to go through this, but IF he does….then I hope someone chose to be a donor so that there is a higher chance of a heart being available. There are way too many kids – and adults – dying because they’re awaiting hearts and other organs. I implore you to please become an organ donor. PLEASE. Check out Jacob’s website http://www.swellhearts.org/ and read his story and then consider being a donor. You can save lives long after you leave this earth. Somewhere right now I bet there is a boy about Nolan’s age who is struggling to cling to life and his parents are hoping and praying for a heart to become available. What if that was your child? If it was your child, I bet you would want everyone you know to be a donor. So encourage your friends to be donors, then encourage them to encourage their friends to be donors. Let’s make this thing grow…for Jacob, and for all the 100,000 others like him who are awaiting life-saving help.
It was really a pleasure getting to know Jacob during this trip. We had a few adventures like a late-night cold walk to the White House and taking the Metro to the airport in rush hour. I’m glad I got to meet him…he’s doing extraordinary things and I wish the very best for the Swell Hearts Foundation and above all, I hope and pray that he gets the phone call about his new heart very soon. There’s so much left to fight for!
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:
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:
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:
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.
I must note that Congresswoman Adams was wearing a really cool hat…and apparently she’s well known for her hats. She even had a book on her coffee table that was all about women in church hats. So awesome.
Congressman Robert Pittenger
Up next we traveled through the Cannon Office Building (which had a cool dome) to Congressman Robert Pittenger’s Office:
Mr. Pittenger represents the 9th District of NC and if I lived just 2 miles down the road, he would be my Congressman. I have a funny – and totally random – memory involved with Mr. Pittenger. When he was running for office, he was in one of my town’s parades (maybe 4th of July?). Hudson and I were there and happened to both be wearing Yankees shirts. As Mr. Pittenger’s car drove by, he turned to us, pointed, and said “Go Yankees!” He knows the way to my heart. Anyways, we weren’t there to talk baseball, we were there to talk bidness.
We got there a little early but asked if they could see us. Mr. Pittenger wasn’t available, so we met with Michelle, his Senior Legislative Assistant. Much like we did with Ms. Adams, we shared our stories and our asks. This meeting, however, was much more business-like and direct. I’m not saying Michelle wasn’t nice, she was very nice, but I could tell it was a busy office and they had a lot going on so it was much more of a time crunch. We learned Michelle is a Charlotte native and the office was decked out with Carolina Panthers stuff. I noted to her that Greg Olsen from the team is also a CHD Dad. Gotta spread that word (go get ’em, Greg). I think it was still a successful meeting with a different feel from the first one.
So far two meetings down but no one’s been like “Well shoot, sign me up!” Not that it’s a bad thing…better to think things through.
We had some time to kill before the next meeting so we made our way closer to the Senators’ offices and hung out in the cafeteria (no pics allowed in the cafeteria, apparently!). Outside the building we met a guard whose name tag simply said “Big Dooky”…part of me was REALLY curious how he got that name…the other part of me didn’t wanna know. On the way to the cafeteria we passed a gift shop, complete with a call of political power ties (hilarious), a sign for a hair salon, a buffet, and…mmm..a coffee shop. But alas, I did not stop for coffee. It was a good chance to stop for a breather and a drink of water. We’d been on the go since very early that morning so a chill out break was in order. After awhile we set out for our next visit.
Senator Thom Tillis
Senator Tillis is our newly-elected Senator so his staff was in a small, temporary office. Upon entering I noticed two things: one of his staffers had a GINORMOUS Apple monitor (this thing was insane) and there was also a small conference room that had a big taxidermied possum hanging from a branch on the wall. Randomest thing ever, and I’m glad we didn’t meet in there since it would’ve distracted me to no end. Anyhow, our schedule indicated that Senator Tillis might join us for this meeting but that we were scheduled to meet with one of his assistants named Joe Nolan. I mean come on…can’t get a better name than that. In fact when I told my story he was like “Man that’s a perfect name!” Anyways, Joe was very friendly and down-to-earth, I think we all felt really comfortable chatting with him. And even though I’m sure – like everyone else – he was very busy, he actually made quite a bit of time to speak with us. He listened to our stories and showed some real compassion for us and our kids. You could really tell our stories impacted him. He definitely wanted to pass along our stories and try to schedule some time at a later date for us to interact with a fellow staffer who dealt with healthcare matters.
This dude was really awesome, I think we all enjoyed our time with him. Kind, compassionate…the world needs more Joe Nolans!
Now it was time for our group to split up since there were two meetings scheduled for the same time. 3 members of the group went to meet with Congresswoman Virginia Foxx and I went with another group member to see Congressman Richard Hudson. So back to the Cannon building we went. I was a little nervous about this meeting since we had a very experienced group member leading the way but now it was two newbies on the case. I wanted to be sure to have an impact and not screw everything up.
Congressman Richard Hudson
This was the meeting I was waiting all day for: Congressman Richard Hudson represents NC’s 8th District, which is my district! Represent! He is also an alum of UNC Charlotte, just like me. This meeting was very important to me because I wanted to make the biggest impact for my own district. My schedule said I was meeting with one of his staffers, Curtis, so earlier that morning I emailed him to ask if Mr. Hudson was available for even just a quick photo op. Curtis replied quickly and said he will do his best to make it happen. We got to Mr. Hudson’s office and had a seat…and man that is a BUSY office. They had people coming in from a gardening club, a group talking about rural water…people were coming in and out of that place like crazy. Finally Curtis came out to greet us and take us back to his work area. Honestly I felt much more relaxed in this meeting, possibly because it was just two of us meeting with Curtis. After our introductions and stories, Curtis told us he has a really good friend who just had a baby with a CHD. I could tell that as we told our stories and explained the need for more research, the wheels were turning in his head as this became much more real and understandable for him. He took lots of notes and asked lots of great questions. I asked if Mr. Hudson would please consider joining the Congressional Congenital Heart Caucus, since Levine Children’s Hospital – a PHENOMINAL heart center – is right in his backyard and it would be so powerful to have him supporting local heart programs and families. Curtis asked a lot of questions about the hospital and I gave him my card to contact me and I can put him in touch with the right person to possibly arrange a visit for Mr. Hudson. By this point in the day I was really comfortable speaking to our asks and whereas I was nervous before, now I was like:
I think we absolutely killed it at this meeting. Curtis had several people waiting to meet with him, but he made them wait while he took the time to hear our story. That meant so much to me, you have no idea. The Congressman was still in a meeting so it looked like we wouldn’t get our photo op with him, but that was ok. Curtis offered one better: he let me sit at the Congressman’s desk, complete with the UNCC jersey in the background (go Niners!):
Like. A. Boss.
On the way out, we saw Congressman Hudson in the hallway. He was obviously really busy but took the time to say hello and asked me a couple quick questions about CHDs. I gave him a quick 30-second rundown and told him the ever-so-awesome Curtis had all the info for him. He took a photo with us using the office’s camera, so hopefully I can get a copy of that soon. As soon as I do, I will post it. Before I let the Congressman leave, though, I told him a story about when he first ran for office 2 years ago. My oldest son, Hudson, would see signs everywhere that said “Hudson Congress” and he was excited to see his name everywhere. So for kicks we got a sign for him and took a picture of him with it. Fast forward two years and I’m showing the actual Congressman Hudson that sign. He got a kick out of it. He asked if Hudson still had the sign and I said yes, and he said “Wait here a minute.” And then he went to his office and came back with a Hudson Congress hat for me to give to my Hudson. Dude…AWESOME.
I was floating on air after that visit…I felt like I really made a difference and I really believe Curtis understood our message since CHDs are very close to his heart via his friend. I have already reached out to him in the hopes we can continue the conversation and maybe even schedule a follow-up meeting whenever Congressman Hudson is in his local office.
Believe it or not, though, there was one meeting left!
Senator Richard Burr
Senator Burr has been in his role since 2005 and had a very fast-paced and busy office. We met with Anna, one of his staffers whose specialty is healthcare policy. We all told our stories and shared our big asks. Anna spoke a lot about the future of healthcare and policy and what Senator Burr typically does and doesn’t do. All in all, she was extremely knowledgeable and welcoming. Much like the meeting with Mr. Pittenger’s office, though, this one was very much businesslike (again, that’s not bad) and to the point. We didn’t even get a photo op, but that’s ok too. To be honest, it was hard to top the wave of my previous meeting with Mr. Hudson. And when I thought about it, I was suddenly really tired. It was about 2:30pm and I was hungry and wiped out. It had been a whirlwind day.
After lunch I went back to the hotel to retrieve my bags, get some much-needed coffee, plug in my phone and fill out some reports on our meetings. I had a blast talking with some other people who had some really positive meetings. In all, I felt like we had a really successful day and were able to make a really big impact. There were about 130 total advocates this trip and every voice mattered…with follow up and getting people involved, we can really continue to make a difference.
While everyone was going to gather up to share more experiences at 6, I needed to leave by 5 to get to the airport for my flight home. I said my goodbyes, took the metro to the airport and eventually made it home by 9:30pm. It was a great, whirlwind adventure and while I was exhausted, I was so glad I went. What a fantastic experience!
What does it mean for you?
This Conference was an incredible experience…in the future you should try to participate if you can. If you can’t, though, you can still make a difference. Here’s how:
- Don’t forget your local government: Mayors, Governors, Representatives, etc. Go get ’em! Reach out to them and try to set up a meeting. Let them know why it’s important for them to know about Congenital Heart Defects and their impact on our kids and families. If you have a fantastic hospital in your area, encourage them to go visit and support that program.
- Share your story! Write a blog, join an advisory council at your local hospital, be a part of a CHD support group.
- Learn more. Look up CHD research, ask your child’s cardiologist about any important issues or studies related to CHDs.
- You can still reach out to your legislators in Washington. Every one of them is on twitter and has their own website where you can send them an email. I promise you, someone will read it.
- Remember that each voice is crucial to the chorus. You may feel like your one voice doesn’t matter but that’s not true. You are fighting for your son or daughter…NO ONE will deny you that and no one can deny the power of a parent who is fighting for their child, especially in the face of something deadly like CHDs.
- Never…Ever…Give up. This is a marathon and I do believe we will make a difference: day by day, little by little.
Hey friends, I hope you are all enjoying a superb new year so far! It continues to be a good one for us! So February is right around the corner and you know that means Congenital Heart Defect Awareness Week (7th-14th) and Heart Months as a whole. Last year was a blast as I got to do the #32for32 Project and this year there’s a lot of good stuff going on too:
Camp Luck Conference
On February 7th I will be participating in the 5th annual Camp Luck Conference! This is an all-day, interactive event here in Charlotte where we’ll talk about the CHD Program at Levine Children’s Hospital, sports for heart kids, dental work for heart kids, yoga/relaxation, transplants, heart mom/dad-related subjects…it’s going to be awesome. And I am also very honored to add that I’ve been added as a guest speaker as well….ohhhh if they only knew what was coming! I kid, I kid…it’s gonna be great and I’m looking forward to connecting with other heart families and caregivers. I will promise that we’ll laugh and there will definitely be memes involved. If you’re in the area and want to attend the conference you still have some time! Oh, and it’s FREE! And for the college kid in you, that includes free breakfast and lunch…WHAT? So what are you waiting for? Sign up now: http://www.campluck.com/news-and-events/2015/2/7/5th-annual-camp-luck-conference
The HLHS Dad Goes to Washington
So part of the reason I started this blog was to connect with other heart dads (and moms too) and to hopefully play a role in making a better world for Nolan and his fellow heart warriors. I’ve been blessed with the chance to talk to many people about this, including fellow heart parents, medical professionals, the media, etc. This time I get to take Nolan’s story to the next level: on February 25-26 I have the amazing opportunity to participate in the Congenital Heart Legislative Conference in Washington DC! Thanks to an generous opportunity from the Pediatric Congenital Heart Association I will join up with other heart families to advocate for more CHD research and funding on Capitol Hill. I will get the chance to share a small portion of Nolan’s journey with my member of Congress and hope to inspire some change. It is going to be a whirlwind 2 days but man I am SO excited….I plan to pack my red bow tie and my blue shoes to represent CHD Awareness colors on Capitol Hill and make sure everyone who will listen hears about our heart warriors!
I’d love to know what my readers are doing for CHD Awareness Week and Heart Month: please share in the comments!