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!
There is a really amazing writer out there named Jon Acuff. You may have heard of him: he wrote a blog called Stuff Christians Like (still writes it) and it eventually became a book which led to several other great books. I love reading Jon’s stuff because it’s always hilarious and he’s a guy to admire because he’s smart and driven and loves his family to death. Recently while out at speaking engagements, Jon has been holding free mini meet-ups in those cities. I would see pictures of them popping up on facebook and I was all like “Oh snap, I would love it if he would come to Charlotte.” Then LO AND BEHOLD! He announced he was coming to Charlotte….well, not Charlotte exactly, but rather to Gastonia. Gastonia is a city outside of Charlotte and a good 45 minutes from my house…on a good day. And, to top it all off it started at 7:15…AM. While I did sign up for it, it started the battle of “YOLO Chris” vs “Lazy Chris”…but still I dragged my butt outta bed at 5am and drove out to the church in Gastonia. First of all, I was TOTALLY geeked to meet Jon, especially since I’ve been reading his blog since like 2007:
But Jon also had some really great things to say. You see, Jon is all about encouraging people who are “dreamers”…encouraging them to hustle their way to the life/career they were meant to have. And this was what the meetup was about. He spoke about how doing this takes bravery…but where I’m really headed here surrounds his discussion of transitions in life. He drew this like 4 quadrants: Voluntary-Negative, Involuntary-Negative, Voluntary-Positive, and Involuntary-Positive. Each of these transitions requires a “career investment” in order to navigate through it successfully. I had the opportunity to speak about this blog and why I write it, and Jon mentioned how it was a clear example of the Involuntary-Negative transition.
As heart parents you know that none of us chose to have this happen…none of us wanted this to happen…and none of the early stages of the CHD journey are overwhelmingly positive or happy. When these transitions happen, Jon says, you need relationships to make it through. Man, how true is that?! It’s the reason I started this blog: to help people and to connect with people, because those relationships with fellow heart parents is what offers the most support, in my opinion. In fact, it’s often the first bit of advice I give to people who find out they’re having a child with a CHD: connect with other heart families for that support. It’s invaluable.
Being a heart parent is like being part of a club that you don’t ever want to join. But once you’re in it, you meet some really amazing people and I’m forever grateful for them. To all the people who read this blog and offer support and comments, I really thank you guys! It means the world to me that you come and visit my wacky ramblings and find some sort of help. As long as you keep reading, I’ll keep writing: because there will always be a heart dad here who has got your back. Thanks to all our local heart families, who work together to keep one another grounded so we don’t lose our ever loving minds. We celebrate together, we grieve together, and I can’t imagine sharing this journey with a better group of people. And to Camp Luck: thank you for keeping us connected.
Relationships are how we get through this crazy journey. So I encourage you to please continue to reach out to other heart parents…and me as well: you know where to find me! Please remember to share this blog if you feel like it can help someone.
You’ve seen me post about Camp Luck on here before:
It stands for Lucky Unlimited Cardiac Kids, and it’s a great program for our heart warriors. 2014 is an amazing year because the hard-working Camp Luck team worked together to develop a new program called Baby Luck, which provided support for heart babies and toddlers (and their families too!). The kick-off to Baby Luck was an awesome luau on August 2nd and I absolutely wouldn’t WAIT!
When we got there they had food, music, and lots and lots of toys for the kids to play with. All of my kids jumped right in and had a really great time, especially Nolan:
He had his lei and his shopping cart and he was good to go! Even a lot of the heart staff came out to the event, including Nolan’s cardiologist, who said he was happy with Nolan’s walking and our plan to get him off the g-tube. It’s very touching to see doctors, nurses, and nurse practitioners volunteering their time to support heart families…it’s great to know we’re not alone!
I had a good time chasing kids, wearing balloon hats, eating lots of ice cream, and mingling with other heart parents. At some point in the day I referred to this meeting as a gathering of superheroes, and that’s so true. There was a room full of kids with their own battles, and the families that love them…and each and every one of them is a superhero because they’ve fought through things that would put us to shame. This was a great time to let our kids be kids, which is so very important. And just as important is the chance to meet other heart parents and support one another.
So a big-time shout out to Camp Luck and the Baby Luck team! So looking forward to more gatherings, more fun, and more friendship!
If you’re in the Charlotte area, go to the camp luck website (http://www.campluck.com) for more information. If you’re not in the area, I hope that there’s something just as awesome where your hero can connect with other heroes. The Avengers got nothin’ on Heart Warriors!
This past Saturday I got a great opportunity to participate in the 4th Annual Camp Luck Parent Education Symposium. Camp Luck is a medically supervised camp for children with heart problems and their families. They do an incredible job in connecting heart families together and supporting them throughout this journey.
While Nolan won’t be old enough to attend Camp Luck for awhile, I still wanted to be a part of the family interaction. And the Symposium, which was held at Levine Children’s Hospital, was pretty awesome. I learned lots of cool stuff about Camp Luck and things they’re trying to do for the future – including BabyLUCK – which will do great things for kids Nolan’s age and younger. There was quite a bit of heart siblings there and they were AMAZING (I’ll blog about that another time) and lots of cool info sessions. I got to take a tour of the cath lab and learn about all they can do there…def interesting. Then the curveball came in…
So Nolan has been having a rough few weeks: it started with a double ear infection, then a stomach bug…and he hadn’t been quite back to normal since and my wife texted me that his o2 sats were lower than usual (low to mid-70s) and that he was VERY fussy. I had her call the on-call cardiologist, Dr Cook, who instructed her to bring Nolan into the ER just to give him a look-over. So once Bekah arrived with Nolan, I excused myself from the Symposium and walked over to the ER. Luckily I was right there. Dr. Cook did an awesome job of notifying the ER that we were coming, so everything went pretty smoothly. Long story short, Nolan got admitted and has ANOTHER ear infection and fever, which caused the low sats. They kept him due to the low sats. As of this writing, he’s on room air and getting antibiotics and should HOPEFULLY go home today. Now back to our regularly scheduled programming…
After Nolan got settled, I went back to the Symposium because I was asked to speak on the Heart Parent Panel, which was a big time honor for me. There are so many parents out there with WAY more experience and knowledge than me, so I treated it as an opportunity to learn and share my experience with Nolan.
We had some really good discussion about our kids and some of the difficulties we may have surrounding our expectations for them. I loved being able to hear different perspectives and interact with the other parents both on the panel and in the audience.
When I agreed to serve on the panel, I was given a list of questions that may be asked during the discussion. We didn’t get to some of them due to time constraints, so I wanted to put them up on here with my answers and hopefully allow other parents to chime in on our comments section:
1. All heart parents worry, but where do you turn when the worry feels overwhelming?
I tell a lot of people that a good support system is key to avoiding losing your ever loving mind during this CHD journey. Seriously. Find a good support system. For me, that is my faith, my church friends (we meet weekly), this blog, other heart parents, my wife, and sometimes even our chaplains at work. A diverse support system is great because it helps you when you just need to approach your worry or concern from a different angle: sometimes I can say a prayer and feel fine; other times I need to write it down or just plain vent to someone. We’re not on an island: there are other people going through struggles and are willing to walk with you through them.
2. Are you the type of parent who handles your child’s CHD by trusting what the cardiologist tells you, or do you need to understand their CHD inside and out?
I’d say a little bit of both. The fact is these cardiologists don’t get their knowledge off craigslist: they work hard to learn their field and their trade. They know their stuff. And while I am no medical expert and certain things are just over my head, I think it’s foolish not to at least try to familiarize yourself with your child’s condition. The cardio team isn’t there with your child the whole time, you are…
3. How do you deal with the anxiety you feel before your child’s doctor appointments, etc.?
I think this changes with time and type of appointment. Early on in this blog I talked about how utterly TERRIFIED I was before Nolan went for the Norwood Procedure. Heck, it still freaks me out sometimes just thinking back on it. Surprisingly I wasn’t too worried for his first cath and I was a tiny bit worried before his Glenn Procedure. Either way, whether you completely melt down before each appointment or you’re stoic, this is where your support system comes in. Tell people what’s coming so they can talk with you, check up on you, and give you an opportunity to voice your anxieties. Usually I’m working when Nolan has 99% of his appointments, but in January I got to go to a cardiology appointment with him and while I was confident that everything was fine, there’s still that sliver of anxiety that always exists in the very recesses of my mind. It’s like “Ok ok ok ok ok don’t find anything new, please nothing new, pleasepleasepleaseplease!”
4. When your child has been hospitalized, are there any special items you bring to make the hospital seem more “home-like” and comfortable?
For Nolan we try to bring a few toys or stuffed animals. The hospital does a great job of providing toys if we ask for them, but I also like to give him familiar stuff as well. One thing I try NEVER to forget is his little sound machine: he has this giraffe that plays different types of white noise and that’s what he sleeps with every night.
5. How do you deal with well-meaning family and friends who want to help in some way?
Oh people…what are we gonna do with them, right? The average friend/family member, no matter how well-meaning, doesn’t quite understand the complexities of having a heart baby. They demand to be around for everything, they want to be over all the time, or be all up in your bidness. Parents, however, are the ultimate gatekeeper, and you need to put your foot down and set boundaries: not just for your child’s health but your own mental health. People will nag and whine and moan, but they’ll get over it. Sometimes you want to keep the germs away and you don’t want Aunt Pookie and her 14 boogery kids coming over and snotting up your house…so you can play nice and say, “Right now we’re keeping visitors to a minimum to avoid illness. I’ll let you know when is a good time.” OR you can give people options: if people offer a meal, let them bring it and (key) drop it off and leave. Or they can make phone calls or skype or whatever. You can set the boundaries. And people have to respect those boundaries. And if they don’t like it, too bad.
6. Your children are all different ages, but how did you answer their questions about their CHD, while not creating undue anxiety?
This one doesn’t directly apply to me, but I’d love to see readers’ input on this. How did you explain it to your kids when they are old enough? Our oldest son is 3 and we tell him Nolan has a “boo-boo heart” and he understands this simple concept, which we can expand on as he gets older. Dr. Herlong – one of the cardiologists at the symposium – made a great point that parents NEED to teach their kids about their CHD, so they know how to pronounce it, know what it is, and will eventually become grown up, independent patients.
7. Do you emotionally cope with your child’s CHD the same way your partner does? If not, does this create tension or add a different perspective?
The answer to this is the reason I write this blog: guys are just different. There are things associated with Nolan’s CHD that I feel like we can all push through together. Sometimes it just leaves me feeling deflated. I want him to walk, and eat by mouth, and not have to struggle with feeds or a cleft palate. I do. Somedays I’m super-duper confident dad because I want to tell him “You can do this, I know you can!” and some days it’s like “What NOW?!” you just wanna put your head through a wall. I will say that my wife and I make a great team. And that’s what it takes to win: teamwork.
So let’s hear your answers to some of these questions in the comments section, I’d love to read your opinions! I had a really fun time at the Symposium, even though I missed some of it. I learned a lot about the cath lab, helping kids through anxiety, and even the care provided to CHD kids once they grow into adulthood. I’m looking forward to the next Symposium and continuing to be involved with Camp Luck! To read more about Camp Luck, check out their website: http://www.campluck.com/
Oh yeah, and one more thing: I did run into a couple people there who have read this blog and you have no idea how exciting that is for me. It makes me feel like all this is worth it, so A BIG SHOUT OUT TO ALL MY READERS!