Monthly Archives: September 2014

Attention Heart Dads: You are Mighty

Hey you…Heart Dads.  Yeah, I’m talking to you.  Ever feel like you’re the forgotten one sometimes?  Hey it’s ok, it happens…our kiddos are the stars (and rightly so), Heart Moms are Super-Moms (and rightly so) and Heart Dads?  Well…sometimes we’re viewed as just dads.  Fasten your seat belts, homies, because have I got news for you: Heart Dads are Super-Dads too…and Heart Dads are capable of mighty things!

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Study upon study shows the positive impact a good father has on a child’s life.  In fact, the other day on the radio I heard about a study that showed when dads are involved in a child’s education, the child is much more successful.  File that under “no duh,” but still…we can have a tremendous impact and therefore we have a tremendous responsibility.  And to add to the mix, we have a child with a severe congenital heart defect.  Face it: the minute your heart warrior was born, your life changed forever.  This is a turning point, though…so how do we as Heart Dads avoid looking at our situation as a burden and instead see it as a blessing?  Here’s my thoughts:

1) Get Some Perspective.
Being a parent to a Heart Warrior is hard work, I’ve said it a billion times on this blog and I’ll say it over and over again…and by now you know this to be true in your own life.  But has being a Heart Dad become pure drudgery for you?  Or does it carry purpose?  Maybe you feel like you’re fighting an uphill battle: well don’t give up.  Look at how far you’ve gone.  Sometimes it’s easy for me to get frustrated when it takes Nolan weeks/months to gain even a pound…but then I have to force myself to look back at how tiny he was before his first surgery.  Or sometimes I get frustrated when Nolan only eats two containers of baby food in a day instead of 3 or 4.  But then I need to get perspective and remember that a month or so ago he wasn’t eating anything by mouth.  When I look at it that way, we’re on the right track.  Heart Dads: every hard-fought step is a step in the right direction for your child.  Are you mad because the responsibilities of being a Heart Dad take you away from a game or two or some time out with the homies?  It’s not gonna kill you, man.  Put it this way: every minute you spend fighting along side your heart child is a minute you help them in the fight for their life.  That sounds heavy, but it’s true, and it makes poker night look weak, doesn’t it?  When you work on finding a balance, you’ll see that it’s been there all along.

2) Be a Fighter Alongside Your Fighter
The struggle is real, guys…you know it and I know it.  So what are you gonna do about it?  You see your child struggle to eat/sleep/breathe/live and you do all you can to help him or her through it.  Take it a step further and fight for your heart kid and other heart kids.  Don’t leave that fight up to others or just the Heart Moms.  They need our help too!  Be involved, be a voice, advocate for your kids, advocate for more research!  Maybe you share some facts on social media, maybe you share some information in your community, maybe you too start a blog, or maybe you start an organization that supports heart kids.  Whatever it is, speak out and speak up.  It’s not enough to merely provide or to be there…that stuff is awesome, but your experiences as a heart parent are so powerful and can make such a big difference.  Be your child’s voice…fight when they can’t fight…be the difference.  There are so many strides to be made in the world of Congenital Heart Defects and we’re just scratching the surface…it takes heart families, together, to make this thing happen.  And with the help of some really fired-up Heart Dads, we can really make a difference!

3) Do Good to Others
I am a firm believer that helping others in need will help you when you’re struggling and feeling down.  It kinda ties into that whole perspective thing.  Somewhere out there is a family struggling to stay warm, somewhere out there is a child who is hungry, somewhere out there is a family who lost their heart child…these things really make me think differently about my situation.  At least my family has a home and food and access to good medical care.  At least I get to enjoy my son’s smile day after day after day.  So go out and make a difference: volunteer at a shelter, drop off some items from a charity’s wish list, give to a charity that means a lot to you, write someone a nice note to brighten their day.  If you don’t have the money you can always give of yourself and your time.  You can even make an effort to reach out to other Heart Dads and offer support.  Imagine that!  In February I did 32 acts of kindness for my 32nd birthday, not to bring attention to myself, but rather to bring attention to CHDs AND to do as much as I can to help others in need…and the need is great.  I had a blast doing it and can’t wait to do it again.  Moreover, I want what I do for others to serve as an example for my three sons: that life is about what you do for others.  It’s tremendously uplifting to help others because often it’s a sacrifice to do so.

4) Keep an Open Mind
What a wild journey it’s been to be a Heart Dad.  It’s opened so many opportunities to meet some awesome people, have great discussions, and it even helps me be successful at work, believe it or not.  Heck, I NEVER thought I would write a blog for Heart Dads…never in a million years.  Be open to where the heart journey will take you…you can do some amazing things.  I wanted to share a story I read just today about a dad named John Holter.  He wasn’t a heart dad, but had a son born with a severe form of spina bifida and he contracted meningitis shortly after birth.  This caused a rapid expansion in his head, which could only be relieved by pulling out excess fluid via syringe in the soft spot on his head.   As he got older a shunt was implanted to drain fluids, but it was often faulty due to its valve.  John, who had no college degree and was a tool-maker at a lock company, saw the problem and set to a little bit of tinkering.  He eventually developed a type of silicone valve that would work better than the one used for his son’s shunt.  While his son unfortunately did not survive, John Holter’s initiative, drive, and ultimately his invention would go on to help MILLIONS around the world since the 1950s.   I was floored by that story…here was a dad who wanted more, a dad who wanted better.  Sure, on paper he didn’t have the medical qualifications, but he tried anyway.  Dads, keep an open mind because you won’t know where this journey will take you, but I’m willing to bet it will continue to change your life for the better!

I could go on and on, but I’ll end it there.  The truth is that Heart Dads could have a really tremendous impact on our world.  We can be mighty!  We are mighty!  This journey has its ups and downs and frustrations, and it’s easy to be caught up.  But the truth is, I force myself to remember that every time I lay Nolan down to sleep it signals another day I was blessed to have him in my life.  And with that in mind, I refuse to just coast through this Heart Dad life…I didn’t choose it, it chose me.  So I’m gonna give it – and Nolan – my best.  After all, why wouldn’t I want to fight to get more of these hugs?

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Stay strong, Heart Dads!

 

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More Than a Song

Anyone who really knows me knows that I’m a music nut: I love all types of music and have really enjoyed discovering new stuff over the last couple years.  In fact, when I transferred to my current job, my commute became much longer…which meant more music in the car!  Score!  So I’m going to take this entry in a little different direction today…

You ever have that song or band that just speaks to you?  I love music from the likes of Santana, Stevie Wonder, and even some Metallica from time to time, but over the last several years one band has really stood out to become one of my absolute favorites: a band from South Carolina called Needtobreathe.  Way back in the day (2007) when I got my first job out of high school, I used to put on the Yahoo Music player as background noise in my cubicle while I worked.  Often I would get a song called “Shine On” by some band I never heard of named Needtobreathe, and I liked it.  Then Christian radio started playing the song that really turned people on to the band: “Washed by the Water.”

I remember going to LifeWay Christian Bookstore one day because they were running some sale where if you pre-ordered a Third Day CD, you’d get a $5 gift card to spend.  Since I’m impatient I wanted to spend it immediately, but couldn’t find just the right thing to by.  Then I saw it by the register: Needtobreathe’s album “The Heat”…for $7 on sale…which meant I got it for $2!  So even if it was wack, it would be no big loss lol.  This album was different from what I was used to, but I loved several songs on it and over time it grew on me.

Needtobreathe’s music began to become very important to me when I lost my job in 2010.  We were down to one income, our first son was only 5 months old, and it seemed impossible to find a new job.  Some days I would wake up hopeful, and other days I’d be in an absolute rut.  What I would do daily, though, was plug my mp3 player into the tv and jam out to some music with Hudson, who loved to dance.  I had this subscription where I could download unlimited music, so I loaded up Needtobreathe’s follow-up album called “The Outsiders”:

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This album…man, this album was perfect for me.  The songs were incredible, catchy, inspiring, and honest.  The one I held to the most during this period in my life was one called “These Hard Times.”  The lyrics simply say:

Give me something brighter
Give me something I can see
Give me something vicious
Give me something I can be
Give me all the love and peace
To end these wars
Give me something sacred
Something worth fighting for

It’s clear enough to me
The ugliness I see
Is evidence of who I need

Give me an answer
Give me a way out
Give me the faith
To believe in these hard times

It was such a clear reminded of how I needed God when things were good, but especially when things were rough: when the rent was due, when I was frustrated, when it was day 9 in a row of not finding a single job to apply to.  I listened to this album – and this song – over and over and over.  Eventually I got the CD and played the mess out of it in my car.  To this day it remains my favorite Needtobreathe album and one of my all-time fav albums.

So fast-forward a couple years: I would play some Needtobreathe for the babies while my wife was pregnant…it always made Nolan kick.  Smart boy!  Now fast-forward a little more to Nolan post-Norwood surgery.  One night in my routine of visiting Nolan after work, I decided to bring in some Needtobreathe CDs to play in the room’s DVD player, which would hopefully remind him of being in the womb.  Mind you, he still had an open chest and was on a ventilator.  The nurse he had that night was a lady I hadn’t seen before…in fact I don’t remember her name, but I asked if it was ok if I played some music for Nolan.  She said yes and asked what the music was…when I told her, she said she loved Needtobreathe, and we talked about their music for awhile.  But mostly I’d let the music do the work.  This time, the song that meant so much was “Something Beautiful,” which is what I often played for him in the womb and the song I’d put on repeat in his hospital room:

The part that always stuck with me says:

And the water is rising quick
And for years I was scared of it
We can’t be sure when it will subside
So I won’t leave your side, no I can’t leave your side

I never wanted to leave that little boy’s side…never ever…and I know, I just know that in spite of his half heart and the surgeries and the g-tube, and the physical therapy, and the speech therapy…that he is going to be special.  That this is going to become something beautiful.  God, I love that song.  The next day as I was entering the hospital, I saw that same nurse leaving her shift.  I said hello and I think she could tell I had a ton on my mind.  She stopped me and said, “I have to tell you: children are God’s work of art…but a masterpiece always takes more time.  He’s going to do great.  And I played him more music today, thanks for bringing it in.”  And that was the last time I ever saw that nurse…

So this year for Father’s Day my wife surprised me with a wonderful gift…tickets to see Needtobreathe in concert!!!  Man I was STOKED!  On August 22nd we had a rare night out without the kids so we can see one of my favorite bands in the world:

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They were INCREDIBLE!  Easily one of the best shows I’ve ever seen.  The highlight for me, of course, was when they announced “This is an older song and I hope you’ll sing along,” and dove right into “Something Beautiful.”  Being there, listening to the band perform this wonderful song, hearing the other fans sing it, and it just brought me back to those times sitting in a hospital room holding Nolan’s little hand, eyes glued to a monitor, praying hard.  It changed my life…and as I watch Nolan grow and progress, he’s clearly something beautiful.

Do you have that song or that band that means so much to you during the tough times?  If so I’m curious to know your story: please share in the comments!