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When You Can’t Be Vanilla Ice

You’re probably sitting there reading this and wondering why this post has a reference to the great philosopher Vanilla Ice. Now that I’ve got you hooked in, and before I explain myself, first allow me to set the stage a little bit:

Have you ever had a time – maybe late at night – where you’re giving a dosage of a med to your Heart Kid, or just doing the “are you still breathing” check, and you just get overwhelmed with a feeling of helplessness when it comes to your child’s heart defect? Every once in awhile it happens to me: I sit there and I watch Nolan sleep and it all looks and feels so peaceful. But then there’s all those surgeries he’s been through, and the pain, and the fear, and the monthly blood draws, and all the appointments…and I just get so upset….because I can’t be Vanilla Ice.

But why Vanilla Ice? Unless this is the first time you’ve been on the interweb – or in the world, for that matter – you should know about Vanilla Ice’s 1990 smash hit “Ice Ice Baby,” which features the following line:

Vanilla Ice

All jokes aside, yeah it does get really frustrating that there are days where I look at my son and I feel helpless because there’s nothing that I can do to fix it. I’m not a surgeon, not a doctor, not a nurse. If I could snap my fingers to make the CHD go away, I would…heck, if I could trade places, I would. But this is not something that I – myself – can fix. And it’s a struggle, you guys, because as human beings we are fixers and problem-solvers. We hold problem-solvers in high regard! But this, this tends to bog us down. Do you ever feel that way?

So what do we do, then? Wallow? Nah. For me, I try to get a little bit reflective and look back on how far this kid has come.

Example: the other day I was in the kitchen making dinner and Nolan was looking for a particular book. He asked me where it was and I told him I thought I saw it on his bed, and he replied with, “Well I have to go get it!” and proceeded to run up the stairs. Ok so that doesn’t seem like much, but in that moment I’m reminded about the early days of weekly physical therapy, where he had to learn to sit, crawl, and eventually walk. And a big thing was getting him up and down the stairs safely. And he was so small that it seemed like such a struggle for him. Now he’s running up the stairs. Or climbing on trees at the beach. Definitely a moment to be thankful for.

Nolan Driftwood Beach

Or there’s also the time where we were at a farm near our house and Nolan asked me to push him on the horse swing. The same kid who was cut open 3 times in an effort to give him a life to live, was now smiling, laughing, and screaming with joy. The same kid, who as a baby was on a vent and couldn’t even cry, was now shouting, “Push me higher, dad!”

Nolan Horse Swing

Or those times where he asks me to make him “fly like an owl.” I can’t help for those moments of joy, love, and laughter.

Nolan flying

So yeah…as a Heart Dad, I can’t fix his CHD. But what I can fix is my perspective. If I focus on what Nolan has overcome, and especially those wonderful, everyday moments, I can find myself not so down-in-the-dumps. And yeah, I know it’s not easy to do all the time; sometimes you need to link up with other heart parents to help you through…stop, collaborate, and listen, if you will. See? In a way, you can still be Vanilla Ice.

Five Powerful Words

Happy Heart Month, friends! Today’s post is something I hope everyone reads, however it’s really aimed at care providers. I’ve seen a lot of discussion floating around social media lately that’s centered around how care providers can better connect with or listen to patients and families. Obviously this caught my attention and it’s been really interesting to see what patients, families, and even other providers have to say. There are a lot of really great ideas, including taking more time to listen, brushing up on empathy skills, ask different questions, write things down, follow up, etc. All of these things are really awesome and important to do, but if I may, I’d love to suggest 5 simple words that you could say to a Heart Parent that could make a big impact.

“You’re doing a great job.”

Sometimes (or more often than sometimes) we feel like an absolute wreck. There’s the worrying, the googling, the “are you still breathing?” nighttime check (times 10). Before we step foot in the office for our kid’s appointment, we’ve already gone through the stress of trying to find the one pair of jeans that hasn’t been puked on or tried to remember whether the cardiology appointment was at 9 or 9:45 (“or was that G.I.?”). Then we show up, prepared to bombard you with our questions and our concerns and our cares…and you graciously answer those for us.

We don’t take for granted your knowledge and experience. You’re our expert and we need you. You’ve worked hard to be where you are and we couldn’t do this without you. And I know you’re always thinking about listening more or you have managers breathing down your neck about satisfaction scores. But if after you’ve just heard me rain down all my concerns upon you, you ended an appointment with, “Hey…I just want you to know that I understand this is difficult, but you’re doing a great job,” I guarantee it will change the dynamic in the room. Why?

Because I often have no idea what I’m doing. There are small moments where I feel like I’ve got this thing figured out and then others where I feel like I flat-out suck as a parent. Sometimes you miss the dose of a med and you’re killing yourself over it or you forgot to check his O2 sats this time and you never ever ever forget, and the groceries need done, and the sink is leaking, and I have to give my kids their gold stars so they know they’re doing a great job, and everyone everywhere is riddled with flu, and I just can’t…

Maybe…just maybe…a parent needs a figurative gold star and a pat on the back…just to let them know it’s going to be ok. And that you see them (even in their stained clothes) and you acknowledge the challenge…and that they’re not alone. A little encouragement goes a long way.

SpongebobThumbsUp


To all of our care providers: thank you, from the bottom of our heart! You are loved and appreciated and we’re so thankful to have you as guides on this crazy journey.

What’s the HLHS Dad Up to for Heart Month?

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

CampLuckConference

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

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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!