Monthly Archives: October 2015

HLHSdad.com Turns 2!

So I’m like 2 weeks late on this (sorry!), but it’s occurred to me that I started this blog in October of 2013.  WOW!  I absolutely cannot believe it’s been going this long…seriously.  When I first had the idea for this blog, I really didn’t think anyone would read it and that most people would think it was childish at best.

Well…it’s definitely childish, but it’s a labor of love for me and my readers have been absolutely awesome!  I’ve had nearly 20,000 unique visitors to this blog and that absolutely blows my mind…it really does.  I want to thank everyone who has taken the time to read this blog, to share this blog, and to comment on the articles.  It means a lot to me and I hope that I’ve been able to help someone along the way.  Here’s to many more years of fun and support!

And because the blog is officially a toddler, here’s a good old-fashioned tantrum:

Tantrum

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I Learned It By Watching You!

This post has the potential to be hilarious because some of you will get this reference and some will have no idea what I’m talking about.  But do you remember that old commercial?  It was a classic anti-drug ad that aired in 1987; and while I was only 5 at the time, I can remember it clear as day:

An oldie but a goodie.  And this commercial has been made fun of countless times, but recently it popped into my head in a more serious capacity.  As a parent to a heart child, you’ve got the immense responsibility of the health of your child, on top of all the other parenting stuff.  But it’s sometimes easy to forget that kids – whether they have health problems or not – are like sponges.  So what behaviors do we want them to absorb from us?

Kindness

Imagine the world we’d live in if we strove to do something kind for someone every day.  These are the kinds of things that will never get you a pat on the back or repayment.  But it’s where you see someone’s need and you meet that need.  Whether it’s financial, an arm around the shoulder, a warm meal, a listening ear…it goes such a long way towards making the world a better place.  It’s also the kind of thing that will lift your spirits when you’re in the doldrums…and come on, you know we’ve all been there.  Now imagine a world where our kids see us doing kind things for others and are compelled to do kind things themselves!  That’s the world I want to live in: where my sons can show care for others who need it.  So start doing kind things: their eyes are on you!

Responsibility

Yup, this means sometimes you just have to do those difficult, grown up things.  It means doing what you say you’re going to do, even if it means passing on something enjoyable for a little bit.  Yeah it’s no fun, but the effects of responsibility can last for so long.  If you do the things you’re supposed to do, you can eventually raise your heart child to be a very responsible patient.  Because like it or not, they’re not going to have (or want) mommy and daddy in their appointments with them.  They’ll grow up and have to learn their diagnoses, their surgeries, their medications, etc.  The same goes for schoolwork, housework, etc…but I promise you: your kid’s doctor will love you if you raise a responsible patient!

Self-Care

Obviously it’s good for your kids to see you taking care of yourself, but it’s also good to teach them to care for themselves mentally and emotionally.  That means giving yourself some grace, taking a break when you need it, taking some deep breaths when things get overwhelming.  While my son is still very young, I can imagine that adult life won’t take it easy on him when he’s grown.  It’ll have all the same challenges with health added in to it.  If I can teach him how to slow down, breathe, and center himself when things get stressful, then I feel like I’ve taught him something valuable.

A Positive Attitude

I mean, do I really need to explain this one?

Empathy

Being a heart parent makes you specially qualified to help people who are struggling along this heart parent journey.  It also gives you a heart (no pun intended) for any parent who is struggling.  It’s unique to understand what people are going through, and you can really make a difference in someone’s life by using that experience to pick someone up when they need it.  As your kids grow up, they can learn this from you and use their own experiences to make a difference!

And the list can go on, and on…

So remember guys, your kids are watching, learning, absorbing…model what you want them to be and I promise that your life will be so much better for it, and your kids will grow up to be amazing too.  So when they say, “I learned it by watching you!” it will lead to more of this:

ProudDad

 

and not this:

ShockedDad

A Lesson From An Old Guitar

Over the last year I’ve spent some of my free time trying to teach myself how to play guitar.  I’ve always loved music, and I find that my time spent with a guitar is relaxing and centering for me – even if the music I make sounds terrible.  Last month I had the opportunity to purchase an old Silvertone guitar made in the 1950s.

Silvertone

It needed some work, but it had lots of character, so off I went to bring it back to playability.  Luckily for me, most of the fixes were simple and affordable but in the end I needed the help of a guitar tech named Henry to help get the bridge in place.  Henry was nice enough to let me hang out in his shop and watch him work on my guitar.  He got the bridge fitted onto the guitar beautifully, but told me that the neck of the guitar – due to its age – was curved just a little, which is going to result in high action on the guitar.  Action refers to the height of the strings over the fretboard (neck) of the guitar.  Lower is usually better and easier on the fingers or else you get some of this:

HighAction

Inside, I was like “NOOOOO, NOT HIGH ACTION!!!” This news was a quite a bit of a bummer because I had high expectations for this amazingly cool guitar that I had some hand in resurrecting back to its former glory.

All was not lost, though: Henry said that by using a slide on one of my fingers, I could still play the guitar and discover some really cool sounds, especially old-school Delta blues.

SlideGuitar

This caught my attention, not just because there was still hope for my guitar, but because of how it related to my situation as a father to a child with a congenital heart defect.  When we’re welcoming a child into the world, we have all sorts of expectations: school, sports, roughhousing with dad and the brothers.  But then it all changed.  Or did it?

Just because my guitar couldn’t be played like a brand new one didn’t mean I couldn’t play it at all.  I just needed to change how I looked at it.  Just because my son may never be a marathon runner doesn’t mean he can’t play and have fun.  Sure, football won’t be in his future, but he is smart, funny, loves to sing, and gives some of the best hugs.  It’s not all easy, though: I still have to learn how to play this guitar, much like we have to learn how to be parents to a superhero.  I had to buy a slide, I had to look for music to learn to play, and I have to practice.  Sometimes it sounds pretty good, and sometimes it sounds like the angriest cat in the world.  With time it will get better and maybe a little easier.  I remember when I brought my son home from the hospital: I had to learn how to give medications, administer tube feeds, and properly take pulse ox readings.  This was all new to me and it took some getting used to.  Now it’s just part of our routine.

Parents: all we need is some perspective.  Yes, we wanted the guitar with perfect action, but we got the guitar with the curved neck.  You can still play it…and perspective is the slide you’ll need to do it.  A curved neck doesn’t make it any less of a guitar.  An illness doesn’t make your child anything short of awesome.   There are lots of smiles and joy ahead.  I’m currently having a blast learning how to play this guitar a new way.  In that same manner you need to keep your eyes open to realize your child has the potential to still be amazingly incredible!

IMG_2929


 

As a side note, if you live in the Charlotte area and are looking for a great guy to do a guitar setup or repair, give Henry a visit: Guitar Worx.  He’s a really awesome guy and does great work!

The 2015 Heart Walk

Is it just me or did September barely seem like it existed?  Goodness, it just flew by.  Anyways, September was here, and with it came the annual American Heart Association Heart Walk in Charlotte.  It’s hard to believe this year would be my 4th year doing the Heart Walk and our 3rd together as a complete family.  How quickly time goes by, right?

In the past we tried to put together an “official” Heart Walk team and a bunch of people signed up but for various reasons, only one of them actually came that morning.  Last year we just did it as a family and it was really great.  This year we wanted to do something a little different and invite our close friends to join us: these are folks that really stuck with us from the beginning of our journey with Nolan and even friends we met during the journey.  Some we knew already from church when we found out we were having twins, and some of them we met for the first time when they came to our house to drop off food while Nolan was home from the hospital, others were our friends for even longer than that.  Either way, these people have played such an important and supportive role in our lives, we wanted to do this year’s walk together with them.  I texted everyone and we had a plan together.

The weather the morning of the Heart Walk was a little cooler than usual, though it quickly warmed up.  The start area was also in a new location in Uptown Charlotte, so that took a little getting used to…it was super crowded.  We met up with everyone, some of who were rockin’ their Team Nolan shirts, and off we went!

2015HeartWalk2

Once we managed to get past the start line, the crowd thinned up a bit…we had like 18 people walking on our team so we kept a nice pace and it was great to spend it with my family and chatting everyone up too.  Early on, though, there was quite a bit of excitement…because I saw Hugo!

2015HeartWalk1

Hugo is the mascot of the Charlotte Hornets and he’s one of my favorite mascots ever.  Even though I grew up in Connecticut, the Charlotte Hornets were crazy popular back home when they entered the NBA, and I thought Hugo was the absolute coolest.  I loved watching him in those mascot dunk contests (as Super Hugo) and I also knew the code to play as Hugo in the old school game NBA Jam (yeah, you remember that, right?).  So yeah…I was totally geeked to meet Hugo, and I held everyone up so I could take a picture with him and Hudson.

2015HeartWalk3

My buddy Robert carried this torch with Nolan’s name on it.  He said he was preparing for the Olympics…good form, my man!

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About halfway through the walk, I carried Nolan on my shoulders, and I just love this picture because it makes me so happy he can join us on this walk and even if I had to drag myself, I would walk in his honor.  Almost all of the people on our team wore these signs with his name and people kept coming up saying hi to Nolan and saying they were just dying to meet him because of all the signs.  Of course, Nolan ate it all up.

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Possibly one of my fav pics ever.

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We managed to finally get to the finish line, as the day started to really heat up.  This is always such a great part for me because we do it as a family.  It’s so moving.

And last, but not least, here’s Team Nolan representing:

2015HeartWalk8

I love these people.  They’ve done so much for us and we’ll never ever be able to repay them, no matter how hard we try.  I was honored they joined us on this day.  I remember 3 years ago when I did the first Heart Walk all by myself, 3 days after we found out that Nolan would be born with HLHS.  I remember that it was so emotional and at points I was just pushing along to finish.  Fast forward a few years and we’re 18 strong.  This year was so amazing!