Hello readers! February 7-14 is Congenital Heart Defect Awareness Week. This is the time (though it’s pretty much year-round for me) where we get everyone’s attention by sharing facts about CHDs, which have no cure. The Pediatric Congenital Heart Association has done a fantastic job creating a graphic that sums up the impact of CHDs:
CHDs are devastating for families. Painful and frightening for kids. Expensive to treat. Grossly underfunded in terms of research.
Please share these facts with the people you know and with the people you don’t know, because everyone needs to know…the more support we get for CHD research, the better chance we have of eliminating it one day.
So this week, give your Heart Kid an extra tight hug and be grateful for them and all that their experiences have taught you. For those who mourn this week because CHDs have taken your loved ones, my heart goes out to you and breaks for you. If there’s one more thing I ask, is that this week you do something kind for someone else, in the name of the kids fighting Heart Defects and those who have passed on.
Hi friends! Guess what: it’s Congenital Heart Defect Awareness Week! During the week of February 7-14, heart families around the globe will be celebrating their heart warriors and raising awareness in their communities. I am going to be posting several entries this week so please make sure to come back often and share this blog with others!
Today’s post is directed towards a group I haven’t really addressed on this blog: friends. Maybe you know someone who has just found out they’re about to have a baby with a congenital heart defect. As they become Heart Parents, you will now become “Heart Friends.” Soooooo…now what? I mean you’ve heard the news, you’re devastated too, but deep down inside you have no idea what to say or do. Well you’ve come to the right place because I want to give you some pointers from a heart parent’s perspective.
You Don’t Need to Know What to Say
I think human beings are wired with this need to say something – anything – when faced with difficult news. This is how we’ve arrived at those wonderful, brilliant phrases like “Well you know…God will never give you more than you can handle!” Mmmhmm. Or how about this one: the Facebook “like” button. How many times have people responded to a serious or sad facebook post with a “like”? I mean you don’t actually like that someone had to put their dog down, right? But we feel like we have to say something, because if we don’t we’re cold-hearted – or at the least – very awkward. I understand: you want to be a good friend, and you want your friend to feel better, so you desperately search for the right thing to say. Most times, however, there never is a right thing to say…sometimes you just need to listen, and sometimes you just need to be there. And don’t forget the hardest part: try to put yourself in people’s shoes, if you can. It can change how you think about a situation. This is what’s called empathy, if you’ve never heard of it. So what is empathy? If you’re tired of reading and prefer learning about things through cartoons, then you’re in luck:
I love this video. The biggest takeaway for you is this: rarely does a response make everything better. What matters is connection. The good news is that you’re already a friend: you already have that connection. So just be there, just listen. Bring tissues…and chocolate.
Your friends are going through emotional and informational overload. As they learn their way through this, it might be helpful for you to do the same. Check out this fact sheet from the Pediatric Congenital Heart Association: CHD Facts. Did you know CHDs are the most common birth defect? Do you know there’s no cure? Do you know about needed surgeries? If you don’t, you can definitely find out more: get online and do some research instead of taking your 57th Buzzfeed quiz of the night (no offense to Buzzfeed, of course!). Listen, you don’t need to become some kind of overnight medical professional: heart parents aren’t either. But what you can do is show how much you care by at least trying to understand what’s going on. It goes back to empathy.
Sometimes Being There For Your Friend Doesn’t Actually Mean Being There
Being a good friend is a great, important thing. You wanna be there during this tough time; you wanna be that rock. You got this. And this is awesome, please keep that attitude going. While your friends are running around to appointments or living in hospitals, though, sometimes the best way for you to be supportive is away from your friends. Listen, your friends aren’t gonna ask for you to help with things like mowing the lawn or cooking meals or playing with their other kids. But think about it: who the heck is gonna do that stuff while they’re at the hospital? Oh yeah…YOU. Go mow the lawn, make a few meals to stash in their freezer. Offer to pick their other kids up for a play date. Go clean their house. Run an errand, pay a bill, anything…you don’t necessarily have to be there to be there. This is so important, friends, because this is something all heart families need, but they won’t often tell you about it. So be a cool friend and just do it!
Be a Good Example: Know When to Stay Away
There will be an exciting time when your friend’s baby comes home and you cannot wait to go over and snuggle that little warrior. But let’s pump the brakes a little, homie. Coming home from the hospital is a crazy time: we crave the assistance and connection from people, but it’s also a time for us to learn the “new normal” and to be scared to death of illness and infection. So we get a little stank and tell people to stay away. It’s alright. Just know that you’ll need to sanitize when you come here, and if you have a cold – well – a call or text will work wonders. It’s a tough time for parents because we desperately want to see people but we also desperately want to avoid going back to the hospital with our little ones. So we spend months fighting off those well-meaning friends and family members who ignore our rules and come over with their coughs and snot-nosed kids. Heck no. Be the best friend you can and know when to stay away. Your friends will greatly appreciate you for it! We have some amazing friends that we never met before they just came to our house to drop off food while Nolan was in recovery. They were new members to our church’s small group and they just signed up to bring us food, and we never even met them before. It was such an immense gesture of kindness and it will always mean so much to us…we’re so glad to call them friends.
Keep it up, Even When Things Seem “Fine”
Surgeries and hospital stays are scary times. Once those have passed, it’s easy to look at things and see that things are “fine.” I say “fine” because nothing’s ever 100% fine. While the surgery might have been successful, and the therapies might be working, that doesn’t mean the child is cured, that doesn’t mean the parents aren’t scared, and it doesn’t mean things will always be in the clear. Things can change overnight, and that’s always on our minds. There are times where we get overwhelmingly sad, there are times where we are exhausted, there are times where we’re just trying our best to get out of bed in the morning…that’s when we need our friends. This is so important! Keep being there!
Things Won’t Always Be the Same
Having a child with a CHD means you’re going to live with a “new normal.” This applies for friends, too! You’ve got your friend’s back and I’m glad you do, but please don’t expect that after a little while things will go back to the way they were. I’m not saying a heart parent will stop being your friend, what I’m saying is that their ability to spend copious amounts of time away from home will be less. Believe me, they want to hang out the way they used to, it’s just not possible. That, and they’re tired…always, always tired. But hey, we can’t help it. Just be flexible, be understanding, and please never stop inviting them to stuff, even if they can’t come over and over. They’re not being mean or messed up or lazy. They just can’t. And when they can, it’s awesome for everyone, especially the heart parent. It’s like freedom. So don’t give up!
I always contend that each heart kid needs a good team around them, whether it’s medical professionals or family. Friends are often the forgotten group in this whole equation. So Heart Friends, I want to tell you that you’re also part of this team…and an important one too! Keep being there, be strong for us: keep listening and keep loving. You mean so much more to us than you’ll ever know!
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!