Category Archives: life

The Deluge

Last month I took the family on a mini day-trip to see Looking Glass Falls, which is in Western North Carolina.  It was a perfect stop because it’s easy to find and it’s literally located right next to the road inside Pisgah National Forest.  You can park and see it right there, walk down some stairs to a lower viewing area, and even go in the water below if you want.  My wife and I last went there nearly 5 years ago and it was great fun so we wanted the kids to see it.

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We didn’t tell them where we were going, just that we were going to do something fun and we had to drive a little bit to get there.  And you know how it is with kids sometimes: it better be FUN, or you won’t hear the end of it.  As you enter the forest you follow this winding road: it was well into the afternoon and I was just trying to beat the sunset.  We finally arrived and there was pretty much no one there, which was awesome!  So we parked, got out and told the kiddos we were there to see a waterfall.  As we got closer and you could hear the rushing water, the kids got excited.

When they saw this waterfall – no lie – they were in awe.  The twins both took in a breath and their eyes were wide.  Score one for mom and dad!  My wife bravely waded down into the water (which was FREEZING), while I waited at the lower viewing area with the kids, just taking it all in and feeling the spray of the water on our faces.  There were smiles all around…it was glorious.

But you know, it got me thinking.  As I looked up at this rush of water pounding the rocks below, it made me think a little bit about the lives we lead as Heart Parents.  Sometimes – and you all know this – we feel like we’re standing beneath a waterfall…our own personal deluge.  The definition of deluge, according to thefreedictionary.com, is “something that overwhelms as if by a great flood.”  Yeah, we know exactly what that’s like.  The deluge comes when you’re the most tired, the most vulnerable, and the most emotionally spent.  In the deluge you feel like empathy is gone and you can’t find your way out.  For me, it’s those days where I’m 3 cups of coffee in and still can’t remember what day it is…it’s those nights where I silently beg God for my son to eat so we can get rid of his g-tube.  And it’s the times where I’m just plain frustrated and flustered and I don’t even know why.  You’ve had those days, I’m sure.  I also believe those feelings are completely normal.

But as I also looked up at the waterfall, I looked beyond the sheer force of the deluge…and saw that a waterfall is majestic, awe-inspiring, and powerful.  Yes, there are times where we’re right under the deluge…but there’s also times where we can look on in wonder.  I don’t know about you, but for me I often miss the opportunity to reflect during those times.  While having a child with a serious medical condition isn’t something anyone would choose, I can also appreciate the personal growth that’s happened to me during this time.  I’ve learned more about compassion than I ever thought I knew, and I realized that I can use my experiences and my wacky view of life to help other people throughout the world, just by sitting on my couch and typing.  Waterfalls have also been harnessed to create energy…now that’s some power.  Likewise I’ve realized that when I’ve needed to, I’ve been able to harness some kind of strength deep inside to get through…sometimes it’s barely enough…but it’s there.  And you know you’ve been there too.

So I know there will be times where you’re living under the deluge, and it’s tough.  Please know I feel you and you’re not alone in the struggle.  Please reach out to me or any other Heart Parent or support group so we can help get you through: we’re in it together.  But also realize those moments when you’re standing in the viewing area: you can still feel the spray on your face, you can still hear the roar of the water, but everything is ok.  Take some deep breaths in those moments and get some perspective about the waterfall that is your life.  While it can overwhelm, it has also created some beautiful things: a love that you never thought you could have, grace that you never thought you could give, and immense strength that’s hiding deep down inside.  This is where the real power lies, where we realize that the deluge isn’t a 24/7 thing and that I, you, we will get through this and be better for it every day.

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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!

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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!

This is NOT the Trip I Planned For! (Part 3)

This is the 3rd and final entry in my 3-part remix of the “Welcome to Holland” essay (you can check out part 1 here and part 2 here.  I’m really amazed by all the great feedback I’ve received about this series…thanks for reading!

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So you’re in Finland and you’re starting to get better and better at this new life.  Yes, there’s mountains to climb, but you’re meeting people along the way and you’re finding out maybe this isn’t as bad as you originally thought.  Heck, you’re even taking time to help others who are in the same place as you were.  No before you stumble and go rolling down the mountain, let’s find out the three remaining tips I have for making your new home a great home:

7.  Slow Down and Take Care of Yourself

Appointments!  Appointments everywhere!  And sleep?  What the heck is that?

NoSleep

 

The reality is that Heart Parents: we’re total bosses.  We can totally kick butt at this life once we set our minds to it and have good support.  But just like a muscle that you work out, you will eventually get a little bit fatigued.  Sometimes that fatigue is physical, sometimes mental, and sometimes emotional.  That’s why it’s important to take some time to take care of yourself.  After all, you can’t climb your mountain if you’re falling asleep at red lights.  You can’t welcome someone to Finland if you can’t even get your butt outta bed.  You are allowed to take care of yourself too!  Ignoring your own well-being doesn’t make you some kind of hero…a real hero knows their limits.  Go do something nice for yourself every now and then.  Tell yourself that you’re pretty stinkin’ awesome.  Be proud of the things you’ve accomplished.  Get involved in a hobby.  You’ll find that there are moments (a lot of them free or cheap) that can help you center yourself and make you really happy and focused.  For more tips on self-care, read this post.

8.  DON’T. EVER. GIVE. UP.

Don’t do it!  You can do this…I can do this…we can do this!  When you’re getting worn down, think about how much better things are than yesterday, or a year ago.  Think about your heart warrior: look at how good he’s doing and how strong he’s getting.  Think about every smile, every laugh, every step you’ve fought for.  Grab onto those things, focus on them, dwell on them.  Reach out for the hand of another traveler on this journey.  We can help!  And when that time comes and you’re down, but you start to think on the good things and gain some perspective, you start to realize you have more in the tank than you thought and you can keep going even stronger!

BeastMode

So when the mountain seems too tall, just know you’re not doing it for yourself.  Someone depends on you.  And when you’ve climbed all you can climb, you’ll find that you can climb a whole lot more.

9.  Look Back…and Give Thanks

One day you will get to the top of the mountain you’ve been climbing.  And when you do that I want you to stop and rest.  Even for just a moment.  Then turn around and look…look at how far you came.  Maybe there in the distance you see where your plane landed when you arrived here in Finland.  And maybe if you squint you can see the pile of stuff you thought you’d use for a trip to Hawaii but eventually left there.  And then you can see where the mountain started, or that point where you slipped up and threw a grown-up tantrum, or the times you were scared or felt alone.  And those times you met great people along the way.  How…awesome!

Once you’ve gained that perspective, take some time to actually celebrate!  You kicked that Fontan’s butt?  Throw a party!  You worked your butt off to pay off those medical bills?  Well maybe you can’t afford a party, so – I dunno – throw down a pack of Ho-Hos and dance in your living room.  Whatever it is, party like a boss.  You deserve it!  Live that moment up because you know when you turn around again there’s gonna be another mountain.  But this time you’re armed to defeat it.

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So there you have it.  My remixed, brand new, 2015 version of “Welcome to Holland.”  I really hope that “This is NOT the Trip I Planned For” has meant a lot to you.  I also really hope you share this with your friends and also that sometime in the future you periodically come back to read these 3 entries so that you don’t forget what it’s like to live in Finland.  And no, I’m not knocking Finland at all, I hear it’s a great country…it’s just a random one I picked that seemed like the extreme opposite of Hawaii.   But I do want everyone to realize that we’re currently all living in Finland together…and when you think about it…Finland is awesome, Finland is beautiful, and Finland has probably given us a more meaningful experience than Hawaii ever could have, right?  So let’s enjoy our time here, friends!

 

This is NOT the Trip I Planned For! (Part 2)

This is the 2nd entry in my 3-part remix of the “Welcome to Holland” essay (you can check out part 1 Here).  Happy reading!

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So here you are: you packed for Hawaii but you got Finland.  Those surfing lessons did you a whole lot of good, right?  No grass skirts here either.  But rather than throw a tantrum (or maybe you already have), you’ve begun to get the lay of the land, you’ve started learning the local language, and you set off to immerse yourself in the local culture.  What’s next?

4.  Give Yourself Permission to be Homesick

At this point you’re moving along: you start to realize that – while it’s no Hawaii – Finland isn’t such a bad place to be.  The people are nice, the schools are great, you like the food.  You’re growing accustomed to being in this new place.  But then – and this happens to all of us – you get a little “homesick.”  It seems like the train your on has hit the brakes and refuses to budge and you’re one step away from a total meltdown.   You’re frustrated, you’re tired, you’re scared.  Again, this happens to all of us.  And you know what?  It’s ok.  It’s ok to have those moments where you scream out, “I DIDN’T ASK FOR THIS!” or “THIS ISN’T FAIR!!!”  And the big toddler inside your head is just throwing himself all over the place.

TD Jakes

You need to realize that prior to being on this journey, most of us were completely unfamiliar with serious illnesses and what it’s like to be a caregiver.  Instead we focused on having kids, putting them in soccer, cheering them on at graduation, and sending them to an awesome school that hopefully has a fun basketball team to watch.  But instead you got this.  This is different.  And it isn’t what you planned for…but remember: no one can plan for this.  And this…this is an amazing journey when you just open your eyes.  In the meantime, though, if you’re having an “it’s not fair” moment, I just want you to know that it’s ok.  When you move somewhere new, somewhere unfamiliar, it is expected for you to be a little homesick.  And those feelings won’t last forever…so express them and then you’ll be ready to move along…it’s just a bump in the road.

5.  Climb the Mountain

Yes, friends, there’s a mountain there in your own personal Finland.  In fact, it’s a chain of mountains and it’s not regarding the obvious thing like your child’s CHD.  These mountains are all the other stuff.  For you, your mountain might be financial, or emotional, or relationship-based.  For others it might be surrounding education, or feeding, or weight gain.  You can’t avoid these mountains…you must climb them.  Some are tall, some are short.  Some are “easier,” some are long-term.  Sometimes the weather is great, sometimes you can barely hold on:

HoldingOn

But you must be ready to climb: there’s no skating through this journey.  The good news is that while you’re climbing that mountain, you’re going to come across others who are climbing that mountain, too.  Make friends with them, so it’s not a lonely climb.  Which leads to my next point:

6.  Slow Down and Help Other Travelers

Remember when I talked about immersing yourself in the culture?  Remember when I talked about seeing others climbing your same mountain?  Well those people will have helped you along the way, I promise you.  And just like they kept you from losing your ever-loving-mind, you need to pay that forward too.  I think it’s the responsibility of all of us to try to help even one traveler who has just arrived in Finland.  It’s not a race, it’s not a contest…it’s a marathon and we’re all on the same team.  Listen guys, people are arriving in Finland every day, over and over again.  And they’re scared, their confused, their frustrated…just like you used to be.  At this stage in the journey you’re continually seeing how awesome Finland is…so let’s get together and be a welcome party for our new friends!  No, we’re not gonna be like “Welcome to Finland, it’s so much fun!”  nor will we be like “Welcome to Finland dude, it sucks here by the way.”  We need to greet our new arrivals with empathy: “Welcome…I know what it’s like…take my hand and lets go together.”  It’s a powerful thing when you work as a team.  There is a lot of truth in the old African proverb that says, “If you want to go fast, go alone.  If you want to go far, go together.”

Finland

The reason I started this blog was to serve this purpose exactly.  There have been – and continue to be – many people who have helped me when I arrived to Finland, and I felt like it would be a sad thing if I kept that gift to myself.  This blog is a labor of love and I really hope it’s helped many of you along your way!

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We’re almost there, guys!  I hope you’ve enjoyed this series so far: please make sure to share it with others if it’s meant anything positive to you.  As always, I really appreciate comments too.  Stay tuned for the 3rd, and final, installment soon!

This is NOT the Trip I Planned For! (Part 1)

By now I’m sure a lot of you have heard of that very popular essay called “Welcome to Holland.”  If you haven’t, google it.  Basically it was written by a mom as a way to describe what it’s like to have a child with a disability/illness.  At its core, it’s a good essay…but I also felt like it just wasn’t enough.  And the more I thought about it, the more I felt like it needed a good ol’ 2015 REEEEEEEEEEEEMIX!  I thought a good place to test this out was back in February at the Camp LUCK Conference and I think it was pretty well-received and I had the opportunity to do it again this summer.  Now I think it’s a good time to share my version of this with you (the countries have been changed, of course, because why not?) and I call it, “This is NOT the Trip I Planned For!”  There’s a lot of stuff here, so I’m breaking it up into 3 posts.  Please let me know what you think.

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Imagine you’re going on the vacation you’ve always dreamed of…for our sake let’s say that’s Hawaii.  And what types of things do you do to prepare for a trip to Hawaii?  You buy stuff to swim in, pack some sunscreen, maybe a nice hat…maybe you take some surfing lessons and scope out restaurants and coffee shops (if you’re an addict like me).  You get as prepared as you can, because as soon as your feet hit that sand, you’re off to some major fun.

Well the big day arrives and you’re on the plane in your shorts, flip flops, and flowery shirt.  It’s a long flight so you doze off after a couple rounds of Fruit Ninja.  Eventually the plane lands, you wake up, get off the plane and are greeted with “Welcome to Finland!”

NotTheTrip1

And you’re like “What the heck?”  or maybe, “FINLAND?!”   But there you are…and to make things interesting: you can’t go back.  How lovely!  So there you are: in shorts and flip flops…and it’s freezing.  And people speak a language you don’t understand.  Oh shoot.

For most of us, this is what it was like to first find out you were going to have a baby – and all the planning that went around it – and then arriving at something completely different.  Yes, you’re still on a trip…but it’s a little bit different.  And you know what?  While it isn’t what you planned, it can still be awesome.  But first you need to know what the heck to do now that you’re in Finland:

1.  Learn the Lay of the Land

So what’s the deal with this strange place?  What’s out there?  One thing to work on is getting your bearings before plowing ahead.  Do a little bit of research on your child’s CHD, reach out to some support groups and get some questions answered, find a good group on facebook to join.  Know what’s ahead.  The other thing is that you’re going to keep coming back to this step because you will always be adjusting due to age or surgeries or weight gain or even some minor complications.  Things change, so you’ll always have to adjust your map.  A while back I wrote a post about a care map that I made for Nolan.  I sat down and literally mapped out all the things that affect him or will affect him and our family in the future.  And it looked something like this:

Nolans Care Map

I made this probably a year ago and as I look at it I already see some things that need to be changed or even added to his map!  This journey is always changing, so make your map and don’t get lost!

2.  Learn the Local Language

When I first built out this presentation I did a lot of research on what it was like to move to another country.  Obviously if you’re going to live in a country where your language isn’t their language, well…you better learn fast.  And we all remember the day where we had our language lessons: “hy-po-plastic”…I don’t think I’d ever used so many syllables in one word before.  And who is this Norwood guy anyway?  But now those things are an everyday part of my vocabulary.  Am I a medical expert?  No way (you don’t want that anyway), but I am becoming more familiar and more comfortable with the language.  I mean, come on, how many of you guys said “Tetralogy of fallot” before this journey?

3.  Immerse Yourself in the Local Culture

The reality is, you can’t move to another country and just become a hermit.  I mean, I guess you can, but that would be a waste of travel.  Yes, there’s germs and the big bad flu bug, but you don’t have to stay locked up in the house all year long.  Eventually you need to get out, meet people, and for the love of God get yourself some help!  Research says when you move to a new country you need to shop where the locals shop and eat what the locals eat, and this is true for heart parents.  Get out there and meet other heart parents: build a good support system.  You’re going to find out they’re going through the same things you are and they’ve been in the same place…and even better, they want to help you!  Once you get that support you can start to give that same support to others who have just gotten off the plane in Finland with that same bewildered look you used to have.  And you can take them by the hand, say welcome, and let them know that Finland is actually a pretty awesome place and you’re there to help.

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Keep an eye out for Part 2 of this series.  And remember: keep your heads up – together we can do this!  I love reading your comments so please share!

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!

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.

A Day in the Life of the HLHS Dad

Hi friends!  One of the highlights of June is Father’s Day.  I wanted to make it a little bigger and celebrate Father’s Month on this blog by highlighting fatherhood-related topics.  I hope you enjoy the first entry.

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When people find out I have 3 kids, including twins and a heart kid, I often hear the same reaction: how do you guys do it?  To be honest, I don’t know, I just do.  But I wanted to take a glimpse into my wacky world and show you a day in my life…

Tuesday

5am: Oh alarm clock, you are the devil.  I am not a morning person and to make matters worse I have to be up particularly early this day for a 7am meeting at work.  So I’m up and looking thrilled:

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Blerrrgh.  Did I mention I’m not a morning person?  But after a shower and some spiffing up, I’m ready to roll to my day:

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6am: Before I go, I need my coffee and a drinkable breakfast, aka the Mean Green Smoothie:

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I can hear the “ewwwww”s from here.

If there’s one good thing about leaving so early is that I beat the typical morning traffic.  Charlotte’s traffic has been getting worse and worse and even though my commute is like a 17 mile drive it sometimes takes an hour or more depending on the – ahem – brain function of other people on the road.  But today the roads were clear.  I needed some jams to get me pumped up for the first important meeting of the day so I chose the album “Suburbia” by House of Heroes.  If you don’t know them, they’re amazing, so check ’em out.  Anyways, I got to work in like 30 minutes (amazing) and even managed to get to my office to check emails before going to the meeting.

7am-2:30pm: So we kicked it off with a 2 hour meeting followed by all sorts of busy stuff including more meetings, lots and lots of walking, tons of emails, long looks at data, and maybe a little lunch.  A little.  This was right after Memorial Day so everyone was ready to roll after the holiday and there was lots to do.

2:30-3:30pm: An early start means an early exit and I got to beat some more traffic headed home.  In fact, I got home with enough time to go pick up my oldest from school, which always makes me happy.  I love to drive up in the car line and see him in his backpack and smiley face.  I can’t believe how big he’s gotten.  When we got home we had enough time to make funny faces once we parked:

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3:30-5:30: It was nice to be home during this time, since I’m usually either still working or on my way home from work around this time of day.  My wife was in the backyard with the twins in our new little inflatable pool.  They were having a ball and our oldest soon joined in:

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I especially liked spending some quality time with my love:

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and, of course, we had time for more funny faces:

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We made some dinner, ate some noms, and then my lovely wife had to head off to work…so it was just me and three little knuckleheads.

5:30-8:00: This is when the house gets turnt.  We played, we read books, we ate fishy crackers.  The kids spilled stuff and I mopped:

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Then we put on the AC/DC pandora station and had our own little rock n roll party.  Nolan even joined in on the drums:

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Finally it was bedtime for the twins.  Fresh diapers, a juice for Grant, and lots of snuggles came next.  Since Nolan has his struggles with eating, he depends upon tube feeds and this would be the first of the evening:

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There’s always been a struggle to get Nolan to gain weight…I wish he could eat by mouth, and we’re working on it…but it’s a struggle.  Sometimes we can put together a string of days where Nolan is gaining weight well and then he’ll either catch a cold or something will happen where he loses it again.  What a roller coaster.  This feed is the first of several tonight for our happy little monster:

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Next it was time to time to get the oldest ready for bed.  He helped me clean up the toys and the rest of the mess he and the twins made.  Then – after a rousing couple games of Candyland – I read him a book and sent him to bed.

8:30: Now that the munchkins are in bed I can allow myself my little centering moment (which I wrote about two posts ago).  Even though there was still a lot to do around the house, I took a moment to treat myself….to COFFEE:

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Ohhhh yeaaaaah.

And for the next 20 minutes or so I allowed myself the time to sip some coffee, relax, and watch some Yankees baseball:

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Then it was time to kick it back into gear.  I did a sinkful of dishes and wiped down the counter tops, swept the floor where my crazy orangutans that I call my twins threw a bunch of crackers.  I even got some laundry done.

9:00: Time for another tube feed for Nolan.  This one was heavy on the calories…gotta chunk him up!

After doing some more laundry and taking out some trash it was time to take a little break for guitar practice:

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This is another hobby I’ve been doing that is good for the ol’ noggin.  It’s really relaxing but makes me concentrate a lot as well.  This particular night I was using my brand new capo, which opened the door to a lot of cool new songs for me.

11:30: Time for Nolan’s final tube feed of the night.  All in all, we’d like him to get about 1000 calories a day and I think we got right there.  The tube feeds are a little bit of a process because occasionally we will mix in some Duocal to add calories, and then you need to pump in his feeds nice and slow so he doesn’t throw up…because throwing up = weight loss.  Usually it’s during this final feed when I take a moment to be thankful that our little boy is doing pretty well, all things considered.  I watch him sleep, watch him breathe, and I am glad he can do both without a problem.  He’s come a long way!

12:00am: My wife is done at work and gets home.  It’s always really awesome to see her and by this point in the day we’re both super exhausted.

12:30-ish: SLEEEEEEEEEEEP….and do it again tomorrow!

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So that’s a day for me, and it’s fairly typical for a workday.  How do I do it?  I just do.  I have a family to help support and I have kids to help raise, and I need to do my best, no matter how tired I might be.  While it might be a wacky life, I’m happy with it since I have my family and I love them.  And I’ve learned so much on this journey, too.

Some of you might be reading this and your life might be different: it might actually be even more difficult.  If that’s you, my heart goes out to you because I really can’t imagine how you do it.  Some of you might have a heart kid on the way: I’m hoping this post doesn’t alarm or concern you: every heart kid is different…please keep that in mind.  Nolan needs a little bit more than a lot of other heart kids and still there are kids who need a ton more than even Nolan does.  Whatever this situation throws at you, I am living proof that parents can summon the energy to make it by…day in, and day out.

While I do stay pretty busy, it would be an epic fail if I didn’t recognize that my wife works 10x as hard as I do.  I mean she gets kids outta bed and ready for the day, she does multiple school drop-offs and pick-ups.  She takes Nolan to all his therapies and appointments.  She handles naptimes and even cooks dinner a lot of the time.  THEN she heads off to work at a bakery for several hours late into the night.  I have no clue where she finds the strength, but there’s no one I’d rather have on my team but her.  I’m very lucky!

Talking Through

I don’t know if this happens to anyone else, or maybe it’s just me due to special circumstances, but there are occasional moments that bring back early memories of this heart journey.  And not like those “Awwww” memories…it’s more of those “Remember how much that sucked? BLAHAHAHAAA.”  You ever have those moments?  Like something: a visual, a sound, a place; that takes you right back to a moment and just messes you right up.  Yeah it happens to me sometimes.

I remember the first time I went back to visit the CVICU when it wasn’t for a patient-related need.  I can’t remember the exact circumstance, but I think we were either dropping off gifts for the staff or care packages for the patients that my wife put together.  Either way, things were just fine as we drove to the Children’s Hospital, got our visitor’s badges, rode the elevator up, got buzzed onto the unit and walked down the all-too-familiar hallway.  We were greeted by all those nurses that had since become like family to us…and it was sweet.  AND THEN.  IT HAPPENED.  In the distance…over the sound of everyone talking…over everything else, I heard it: the beeping of the pulse ox monitor.  The faint ding…ding ding…DING DING DING, that I heard so many times.  And suddenly I felt my temperature rise significantly and my palms got like this:

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I wasn’t full-on Shawn Kemp sweating, but I was close.  And for a brief moment it’s like time stood still while the memories came crashing back: being scared, being tired, being worried…all those days after days after days.  It was very brief but it felt like forever…and I kinda remember going back to the car and commenting how crazy it was to hear all those familiar sounds.  But after that, trips to visit the CVICU were just fine for me.

Last year I had the opportunity to visit the NICU for a purely work-related matter.  There are safety checks that several of us on staff are assigned to do and I was covering someone’s assignment, which happened to be the NICU.  I was like, “Yeah I’ll do it, no problem.”  And I walked around with the Nurse Manager, looking at fire extinguishers and gas tanks and whatnot.  Then the time came, and honestly I didn’t think anything of it: the Nurse Manager badged us in to the very nursery where both Grant and Nolan were.  The door swung open to the dim light of the NICU and I immediately saw the spot where they both used to be, since they were right there in front of the doorway.  While the NICU is very quiet, the sound of my heart beating was deafening.  I remember that familiar feeling of sweaty palms and the thoughts that came rushing back…back to those moments where we didn’t know what would happen.  The Nurse Manager was talking but all I heard were those Charlie Brown-style wah wah wahs.  As before, it lasted a brief moment and I turned to the Nurse Manager and said, “You know it’s amazing being back here…my twins were right in this spot after they were born and I haven’t been back since then.”  And we chatted about that briefly and I felt much better and we continued on with our work

The last instance of this was very recent: I was with my co-workers doing a very fun video project and we were going throughout the hospital filming staff doing fun stuff.  We eventually made our way to the OR floor.  As their Nurse Manager wrangled up some staff for our video, I saw it.  Straight ahead of me was this little pre-op holding area…the very area where we made the long walk to bring Nolan before he went in for his Norwood procedure.  That moment was seared into my mind because it was the most scared I’ve ever been in my life because I didn’t know if that kiss I planted on his little head would be the last.  Being there was very intense for me because – let’s face it – I would’ve never in a million years thought I’d be hanging around the OR floor.  I mean come on.  But here I was, and the feels were real, man.  I stood and stared, and stood and stared.  Finally a co-worker came up to ask me a question, which I sorta half-answered.  Then I turned to him and was like “Man, this is crazy being down here,” and I pointed to this little holding area and told him all about it.  He thanked me for sharing the experience and said it’s a good one to share since it can help clinical staff understand the level of anxiety our patients and families go through.  I was thankful for that and it honestly helped me feel better.  From there I was fine, the video was awesome and the OR staff were hilarious.

I’ve written before on this blog how I do think Heart Parents suffer from PTSD.  I firmly believe it.  I also believe that it’s different for everyone: I’m sure some people have it in extreme forms and some people will just get these flashes of it.  Either way, I’m sure as you’re reading this you’re remembering a moment where this has happened to you.  And it’s ok, it doesn’t make you weird or defective.  And it doesn’t necessarily mean you need to seek any kind of professional help (though I’m not the person who should help you decide that).  In my experiences above the one thing that was a common thread in these “Raging Remembrances” was the act of calling out what I was experiencing and talking about it.  I’ve found that if I say “Hey this reminds me of such-and-such” it allows me to acknowledge the feels are real and that I understand them.

I’m not saying you have to be all touchy-feely or whatnot…I’m saying I hope that you get comfortable with sharing your momentary Raging Remembrances…that at least brings someone into the ring to be on your side.  Heck you don’t even have to share it with a fellow heart parent, just share.  If you talk about it, you avoid packing it away.  Sure you can get away with packing one or two or three of these memories…but over time you’re gonna run out of room…and when you try to stuff one more thing down it’s going to come bursting out and it’s gonna be U.G.L.Y.

While it does take some bravery to talk things out, remember that you don’t have to go into the WHOLE story.  Just a dab will do you.  Give it a try the next time something sets off your Raging Remembrance.