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How to be a Great Sidekick (A Father’s Day Post)

Hello out there, fellow Heart Dads! As we roll into Father’s Day weekend I didn’t want to let time fly by without dropping a post specifically for all the amazing Heart Dads out there.  You’re the reason for this blog and the reason it stays going!

We all know by now that our Heart Warriors are amazing: brave, courageous, fearless, strong, tough, etc.  They’re nothing short of superheroes:

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I don’t know about you, but Nolan inspires me on the regular with what he’s been able to accomplish in spite of all the challenges he’s had to face.  He’s a generally happy kid (when he’s getting his way), he’s extremely loving (like, face-crushingly loving), and he’s super smart.  But you know what they say: every good superhero needs a good sidekick.

Think about it…Batman had Robin:

Robin

Sherlock Holmes (ok, ok, he’s more protagonist than superhero but whatevs) had Watson:

Watson

And who can’t forget my fav sidekick Chewbacca?

Chewbacca

So then, who plays sidekick to the Heart Warriors? Guess what: it’s YOU, Heart Dad!  So how can you be an epic-level sidekick? Let’s check it out:

Be Brave

Let’s face it – and you know this by now – the Heart Dad’s job is not for the weak or the cowardly.  Is it hard?  Absolutely…really, really hard.  But you know what else is hard? Being on the receiving end of all those surgeries.  I can’t imagine what it’s like for our kiddos…they go through so much and a lot of times the best thing we can do for them is to just summon every ounce of bravery we have and be strong for them.  Tell them it’s going to be ok, tell them you’re there.  Being brave doesn’t mean a lack of fear, it’s facing the fear and pressing forward.  Yes, being brave is hard…but if your kid can do it, so can you: let them be your inspiration.  Being brave doesn’t mean to have a lack of emotion, rather I think it’s more brave to admit that you’re afraid or to admit when things are difficult, so don’t be ashamed!  The bravery you need is right there inside of you!

Be Strong

The famous sidekicks we all know and love are strong in a variety of ways: some are physically strong, some are smart, etc.  The strength I’m talking about here has nothing to do with how much you can bench press.  Rather, I’m talking about being strong in mind: take care of yourself during this long, difficult journey.  Know when you’re struggling.  Practice mindfulness and don’t be afraid to seek help…please take the time to read my post on mental health to find out how to take care of your mind as a heart parent.  You also need to be strong in spirit. I don’t think this is necessarily a religious thing, though I do recognize that faith and spirituality are very important to many of your and is important to being strong in spirit.  But I would also encourage you to be empathetic: put yourself in others’ shoes, or reach out to help those who are where you have already been.  Practice kindness: it’s so impactful to do something for others when you’re going through a tough time yourself.  Be grateful: when times get tough, write down the things you’re grateful for.  Find something you love to do, whether it’s writing, playing music, cooking, fishing, whatever.  Let that feed your spirit.

And, ok, yes…sometimes you do need to be physically strong too:

2015HeartWalk4

Have a Catchphrase

You know which sidekick we’re talking about here, right?  Robin, the boy wonder. Dude was totally known for his catchphrases back in the day: “Holy ______, Batman!” Can you believe there’s an entire wikipedia article entitled “List of Exclamations by Robin”?!  Hilarious stuff, read it here on your own.  My favorite? “Holy unrefillable prescriptions, Batman!” Ah…so relate-able.

But no, I’m not saying you actually have to have a catchphrase (though I don’t discourage it). What I’m saying here is that to be a good sidekick for your superhero, you’ll need to speak up whenever it’s necessary.  Got questions when you’re in the hospital? Ask. Something doesn’t feel/look/seem right? Say something.  Think your kid’s doctor isn’t cutting it? Ask for another one. The voice of a Heart Parent is a powerful one, because while the clinicians are the expert in care, you’re the expert in your own child.  You do have a say.

Do you want to see CHDs eradicated in the future? Speak up – be an advocate?  Don’t know how? Visit the Pediatric Congenital Heart Association to learn how: while you can visit DC and speak with your representatives, calls and emails/letters are just as powerful.  If you’re one of my readers and you live in the U.S., you know that healthcare coverage is a massive issue right now, and no matter what you believe politically, you know that you have a critically-ill child that needs good coverage, not coverage that will be dropped due to a pre-existing condition.  If you want to fight for that, then speak up!  Use your powerful, Heart Dad voice to support your Heart Warrior!

Always Be There

A superhero isn’t gonna drag along a sidekick if they’re a burden.  They keep them on the team because they’re dependable, strong, and always willing to help.  That’s exactly what you need to be.  Yes, the journey is long and tough and it’s filled with bouts of confusion and anger and frustration, but at the end of the day your hero cannot fight this fight alone.  He or she needs their sidekick…they need you.  And they don’t just need you at the hospital or in the doctor’s office…they need you at home.  Get on the floor and play, eat dinner together, give lots and lots of hugs and positive affirmation.  They need you at school: read to/with them, be invested in their education, go to the freakin’ school plays…ALL OF THEM.  They need you out in the world: take them to see the world, do stuff with them, smile and run and laugh, make memories!

At the end of the day, when your Heart Warrior grows up, you’re not going to want them to look at you and say, “You know what Dad, you were a great {insert job title here}”….what I want to hear is, “You know what Dad…you’re always there for me.  You’re a great sidekick.”

Sidekick


I want to wish all the Heart Dads out there a very happy Father’s Day!  I hope you have a really special day with your families, with lots of hugs and love.

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The HLHS Dad on The Mighty!

This is the third entry in my series on Fatherhood this month.  Enjoy!

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I’ve had the great honor of having a post I wrote featured on the website The Mighty (themighty.com).  For those of you who are unfamiliar with the site, it’s a really fantastic website where powerful stories are shared about/by individuals or families facing disabilities, disorders, or chronic health conditions.  It’s updated very regularly and I can’t say enough about how amazing these stories are.  There are even several stories on there about CHDs, even before this knucklehead showed up.

To stick with the theme of Fatherhood this month, I wrote about how Nolan’s battle with HLHS has made me a better man.  I would be really thankful if you took a moment to read it here (and share!):

http://themighty.com/2015/06/4-ways-my-sons-medical-condition-has-made-me-a-better-man/

As a man, as a husband, and as a father, I will forever be a work in progress…so by no means does this article mean I have it all figured out.  Far from it.  In fact, I would love it if a couple years down the line I would look back at this and think about how far I’ve come even since then.  It’s a marathon, friends…let’s no forget it.  But we’re running together and the goal of it is for all of us to win it…together.

Nom Nom Nom…for Dad

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Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU.  This will always be an awesome moment for me and I’ll tell you why.  Nolan wasn’t the best at bottle-feeding after birth.  The nurses would give him about 15-20 minutes to complete a feed.  If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds.  As you can see in the photos, he had an NG tube in by the time these were taken.  They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed.  One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout.  That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.

It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses.  None of them.  Sometimes, though, he would eat pretty well for me.  And just me.  I was definitely feeling the Dad love there!  So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy.  The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin.  At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me!  I tried to feed him as much as I possibly could because I absolutely loved that bonding time.  I held him and he’d drink quietly and it seemed like all the problems would go away.  It was a sweet time to be with my boy.  And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…

My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down.  So he knew me…we bonded…and it was awesome.

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