Category Archives: life

It’s Right There

There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you.  The next cath, the upcoming surgery, the impending birth of your heart baby.  Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling.  It’s during those times where we crave some words of comfort and inspiration.  I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?).  So follow along:

Lately my kids have really been into the Disney movie Moana.  We have the DVD and the soundtrack.  I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head.  Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance.  Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.

AllBlacksHaka

If you haven’t seen it, it’s amazing:

So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning.  So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation.  It’s an amazing thing to see and, yes, very fierce and intimidating.

So what does this have to do with us?  Stay with me…

My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding.  It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others.  The performance was powerful and moved the bride to tears.  What I really wanted to know, though, was what on earth they were saying during the Haka.  I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914.  When I read the words, it blew me away:

What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.

WOW.  Just WOW.  I must’ve read this 20 times and it still moves me.  You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications.  Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you.  Through the tears, the sleepless nights you endure.  You don’t give up and I encourage you never to give up!  The rich, the powerful, the connected – they can’t do what you’ve done so far.  You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.

So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!


I love how much this spoke to me, and to think it all started with a Disney movie.  I really enjoyed learning a little bit about this beautiful culture.  Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):

A Reason to Celebrate

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On Saturday, December 10th I woke up to a now-common sound: “Dad….DAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAD!” I hopped up out of bed and opened the door to our room to see little Mr. Nolan there in the hallway, arms held up, saying, “Take me downstairs?”  I bent down and scooped him into my arms and he put his arms around my neck and rested his head on my right shoulder.  Almost immediately Grant came up and I picked him up too.  It was a very special day.  I whispered, “Happy Birthday, big boys!” and I was immediately overwhelmed.  Here they are…my two little boys…and they’re FOUR!  I remember the mad rush to the hospital at 3am, the C-Section, the NICU stay for both babies.  I remember being happy as Grant did good enough to go home after 5 days, and I remember the fear that grew in the pit of my stomach every day as I knew sometime soon I’d have to hand over Nolan for a major heart surgery in an effort to save his life.

In the years since, Nolan has been through so much and continues to endure quite a bit.  He’s one tough little boy.  And Grant has been a fantastic little (by 2 minutes) brother.  Together they’re a wreck: a destructive force of giggles and tackle-hugs.  There was a time where we didn’t know if Nolan would see 4…but here he is: 3 heart surgeries later and still smiling and still fighting.  Each year at their birthday I reflect on what we’ve all endured.  There’s so much to celebrate…so much to be thankful for.  We’re thankful for our little family, for physicians, nurses, friends, family.

Happy birthday to my sweet Nolan and Grant…I can’t wait to celebrate year 5!

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The Door

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I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it.  You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.”  For you that wish didn’t come true and ushered in a reality that you never expected.

Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday.  As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.

The Door can lead to our greatest fears, but also our greatest hope.  There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous.  Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary.  But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life.  This door also leads the way back home…it says “we made it.”  The Door leads to thanksgiving…to joy…to peace.

The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare.  Because it makes us uncomfortable and carries a negative connotation.  But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear.  There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on.  They suffer, too.

Healthcare workers: you have such a power within your hands to impact suffering.  Sure, if my son hurts you give him something for it.  If I’m cold, you give me a blanket.  That’s what’s considered inherent suffering.  It’s tied to the thing we’re here for.  But what else?  There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school.  What does this look like?  It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.”  It’s the worker that doesn’t make eye contact.  It’s the one who talks down to people.  It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better.  It’s the worker who operates off of a checklist instead of a heartbeat.  It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering.  Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered.  Because human connection and empathy are a powerful way to help heal.  I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump.  When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.

What about those who walk back out the doors and re-enter their lives?  To friends and family: you play a crucial part in alleviating suffering, too!  Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed.  There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to.  We want nothing more than to go back to that, but this is our new reality.  And it’s really, really hard sometimes.  And we need you.  Don’t stop inviting us to stuff: one day we’ll surprise you and say yes.  Don’t stop asking how you can help, even if you don’t know what you’re doing.  Realize that while we might wear a smile, it’s not always that way in our minds.  We’re always going to worry about the future, that’s just how it is.  So text your friend, send a card, cook them a meal…just let them know they’re loved.  And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together.  And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever.  I cannot imagine the pain these families face. Please be there with love and patience and kindness.  If it was you, you’d want the same.

The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door.  If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy.  They can walk into the hospital knowing they’ll be treated like family.  And they’ll walk out knowing they are truly loved.

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?

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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!