Blog Archives

Guest Blogs for Father’s Day Weekend

This is the 4th entry in my series on Fatherhood this month.  Enjoy!

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Hey everyone!  Father’s Day is almost here!  I’ve had the great fortune of having two really wonderful groups reach out to me regarding guest blogging on their sites and I’ve really enjoyed the experience so far.  I’ve featured both of these sites before and both have published a post of mine in time for Father’s Day and I wanted to share them with you:

The Mighty

The Mighty reached out to me again and wanted to publish one of my previously-written blogs from this site.  Of course I agreed, hoping it would be able to provide some help to people.  I encourage you to take the time and read it again and learn about some self-care techniques…and then share, of course!  The article is titled “To the Stressed Dad Worrying About His Child’s Health”:

http://themighty.com/2015/06/to-the-stressed-dad-worried-about-his-childs-health1/

Pediatric Congenital Heart Association

I’ve had a blast working with PCHA as a blogger and an advocate for CHD research.  They work so hard to push for more research and a better future for our kids and I really encourage you to get involved.  Recently they published a guest blog post of mine that has shown to be extremely popular so far and I wanted to share it with you.  It’s titled “5 Things You Shouldn’t Say to a Heart Dad”:

http://conqueringchd.org/5-things-you-shouldnt-say-to-a-heart-dad/

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Have a great Father’s Day!

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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.

Fatherhood in Fragility

This is the 2nd entry in my series on Fatherhood this month.  Enjoy!

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Becoming a dad is a really amazing time: there’s excitement, there’s a little bit of fear, and there’s a whole lot of hope for the future: I’ll have to scare all those boys away or he’ll be the starting center fielder for the Yankees, just watch!  But then things change and instead of just Dad, you become Heart Dad.  Those dreams of your little man roaming the outfield or breaking tackles begin to look like a distant fantasy.  In the words of Kent Nerburn, “It is much easier to become a father than to be one.”  Adding a CHD to the mix doesn’t make it any easier.  Here are some ways that a fragile situation has helped me to continually work on becoming a better dad:

Humanity

When Nolan was born I was working for a Hospice…and in that kind of atmosphere you do indeed start to think about life.  But as Nolan fought through his Norwood recovery and worked so hard to crawl and to walk, the idea that life is precious is so incredibly strong.  I’m pretty sure most healthy people don’t give a second thought to what their heart is up to this very moment…they take it for granted.  In our world, though, the heart – though unseen – is front and center.  But other things – breathing, walking, eating – are things to be so thankful for.  And with that in mind, human touch becomes so important as well: holding a little hand, giving lots of hugs, snuggling up on the couch to watch the same Yo Gabba Gabba episode for the 40th time.  Those are the moments that feel so great to me as a dad, not just from Nolan but all of my kids.  I’m so thankful Nolan is with us that I appreciate every little moment I have with him and therefore every moment I have with all my kids – not just the big, celebratory moments – but every single moment.  So hug your kids more, tell them you love them…and then take that love and share it with others so you can make the world a better place.  There’s lots of people hurting out there – not just heart families – so turn your challenge into something good!

Joy

All of us – both moms and dads – lead some pretty hectic lives.  The weeks are long, the weekends are too short, and there’s never enough sleep to go around.  But sometimes we really have to stop ourselves in the midst of this madness and actually be happy about something, for Pete’s sake.  I remember being happy when both Grant and Hudson crawled and eventually walked…those are really awesome moments for parents.  But I also remember when Nolan crawled a whopping 3 feet on his own, all the while crying out because it was so difficult, I wanted to cry.  I remembered this overwhelming sense of joy, not because Nolan is my favorite or anything like that, it’s because I saw all he had to fight through to get to this moment.  Those are the easy moments to be joyful about…it’s finding joy in frustration that is the challenge.  Maybe there hasn’t been significant weight gain…that’s frustrating…but it could be possible that weight is just slowly creeping upward.  Be happy about that!  There’s moments every day to practice joy, whether it’s through an accomplishment or even a smile or laugh.  If you stay in the doldrums and act so hard on yourself, you’re just slowly rotting yourself from the inside, and I’m pretty sure your kids will notice too.  Yes, your kids feed off your joy…be happy with them and be happy with life, even in the moments when it’s not 100% perfect.  After all, living with half a heart is the only life my son knows…and I can tell you he greets every day with one heck of a smile…and I can learn to do the same.

Resilience

 Dads: fight for something that matters…and don’t give up.  The life of a Heart Dad isn’t about cars or salary or houses or stuff.  It’s about taking your kids’ hands and fighting through it all as a family.  There are days where I feel pretty bone-tired, but Nolan still needs a late-night tube feed…or he throws up in the middle of the night and it needs to be cleaned.  Usually those things occur on weeks where I have to be up at 5am for work.  But Nolan needs me…so I push through.  I do it for him.  But one day I hope my kids realize that my wife and I have done everything we could for all of them, sick or healthy.  And even more, I hope they learn to never quit because of the example we set.  But don’t forget to tell them you’ve got their back…encourage your kids and tell them when they’re doing well at something.  When my wife was pregnant with the twins I would talk to them all the time in her belly.  To Nolan I would always say “Keep fighting!” and even when I did my first Heart Walk and wore a band-aid across my chest, it said “Keep fighting!”  Encouragement from a father goes a very long way, I believe, so encourage your kids to be resilient and set that example for them too.

Time

This sums it up:

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Slow down.  Don’t work so much.  Before you know it your kids will be grown and may not like you so much because you weren’t there.  Ouch…but it’s true.  You know by now that life is precious…and time is precious.  Don’t waste it…instead invest it in love, hugs, smiles, laughter, memories, etc.  You can’t ever go back and fix it, so make it right the first time.  I really enjoy my job, but when I envision my kids turning 18 and graduating from high school I would be sad if they were like, “You know, Dad…you were a really great Manager.”  PFFT.  I want to be a great dad….period.  And for me that means taking a little PTO to be at Donuts with Dad at the kids’ preschool or attending an end-of-year Pre-K party.  The work will be there when I get back.  I remember those long days and nights in the hospital: hoping and praying that my son would get better and that he could go home.  Now that he’s home I better not waste my time and make those hopes merely a fantasy.

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Listen fellas, I’m not the perfect Dad…far from it.  This is like a marathon where you’re training as you run it.  I’m sure there are Dads out there with way better advice than mine (please share in the comments).  But what I do know is that being a Heart Dad changes the way I parent.  I’ve seen how fragile life can be…and I’m going to put everything I have into giving my kids – and my family – the very best of me.  Dads, I hope that’s the same for you too…and don’t just say it…do it.  

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!

Fatherhood1

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!

 

Best Job Ever

When I started this blog I wanted it to be a place where heart dads could come and get information from and connect with a fellow heart dad.  Today, though, I want to actually step away from the “heart” piece and focus on the “dad” part.  It’s Father’s Day and I wanted to wish a happy Father’s Day to all my readers!  I hope it’s an awesome day for you and your families, and I know that with your experience, every holiday becomes a big one when you can spend more time with your heart child and they’re doing well.

I remember back in college whenever I’d be asked the typical “Where do you see yourself in x years?” question in a group setting, I’d often be the only one who would ever mention anything about having a family.  I thought that was interesting.  To be honest, I haven’t had a good relationship with my father and I think that fueled me towards becoming the best dad I could be one day.  Since then, God’s blessed me with 3 awesome boys to help protect and mold into fine young men.  And also to be honest, I haven’t the slightest idea how to do that.  Not the foggiest.  I don’t necessarily have an example to go by so I’m pretty much winging it and learning new things all the time.  Am I the perfect dad? No. Will I ever be?  Unfortunately not.  What I will do, however, is try my very best with every bone in my body. 

A dad’s life is an interesting one.  TV and movies portray dads as typically dumb and lazy, Father’s Day sometimes gets the “meh” treatment (if you compare advertising and whatnot), and I remember all the weird looks I’d get when I was staying home with my oldest son and I’d take him grocery shopping during the day.  Thus far, though, I can honestly say the most important part of being a dad is being there.  No, I don’t mean “being there” as in “Hey, I’ve been on the couch all day everyday,” I mean it as really being there for your kids.  Support them, make memories with them, take lots of pictures, act silly, laugh a lot…because even if they don’t remember it, you always will.  It’s not enough to simply pay the bills and put food on the table, you need to invest in your kids.  And that’s easy to forget, especially when I’m determined to wash a mountain of dishes but my oldest wants me to sit next to him and watch Backyardigans.  Can the dishes wait 20 more minutes til he goes to bed?  They always can.  The world ain’t gonna explode over a little cleanup in the kitchen.  But you know what, sometimes I have to stop and remind myself of that.  And you know what else?  I always feel relaxed and happy after watching Backyardigans with my 4 year old, as opposed to washing dishes, which can be exhausting sometimes.  Why is this important?  Lemme drop some knowledge on you: about 95% of the inmates in prison in the United States right now are males, and about 85% of those men had no father involved in their life.  Yeah.  Whoa.  This is serious business.

I’ve started reading a book called “Father Fiction” by Donald Miller (I’ve mentioned him on this blog before, his books are great), which is about his growing up without a dad and learning what manhood and fatherhood really is.  I think ALL guys should read this book (You’ll sometimes find it published as “To Own a Dragon”…same book). 

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One part that has struck me about this book is his discussion of Dwight D. Eisenhower’s book “At Ease: Stories I tell to Friends.”  Eisenhower notes that through his childhood, his parents taught him that his very existence was important to their family and the the world as well.  Discussing this, Donald Miller writes, “Eisenhower’s parents assumed, and taught their children, that if their children weren’t alive, their family couldn’t function…I mean, can you imagine growing up believing that if you didn’t exist, your family would fall apart?  Can you imagine how different the world would be if all children were taught this idea?   I found the sentiment striking, and I wondered what it would have been like if, as a kid, I had felt completely needed by my family.  My mother needed me, it’s true, and she was certainly loving, but she was also burdened with paying bills, working late hours to pay those bills, and managing life as a single parent…She mothered herself into exhaustion…I knew, somehow, that my mother’s long working hours were because of my sister and me.  But I never thought to ascribe my mother’s emotional and physical exhaustion to the lack of a husband and father; rather, I ascribed it to my existence.  In other words, I grew up learning the exact opposite of what Eisenhower was taught.  I learned that if I didn’t exist, the family would be better off.  I grew up believing that if I had never been born, things would be easier for the people I lived.  A thought like this can cripple a kid…If a kid grows up feeling he is burdening the people around him, he is going to operate as though the world doesn’t want him.”

Makes you think, doesn’t it?

Donald Miller has done an amazing job of opening himself up to people about his childhood and has even developed The Mentoring Project, which wants to equip faith communities to mentor fatherless boys.  I really commend him for that and think it’s an awesome project. 

So dads…will you join me in working harder to invest in our kids?  Give them your time…their childhood won’t last forever.  I love to tell my kids that I love being their dad…and it’s true.  Yes, it can be exhausting and life can be hectic and busy.  But in the end, I love those kids with every fiber of my being and I want to always show them that, whether it’s horseplay on the living room floor, being at every game, or telling them I love them.  Let your kids know they’re crucial to you, your family, and the world.

Again, Happy Father’s Day to all the dads out there…keep being awesome, keep being involved!  For those dads who may be in a hospital today with their heart child, I send especially warm wishes to you: keep fighting for your little one…never ever give up.  Be strong…for them.

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