Category Archives: life

Look Up

So in late September/early October I went to Chicago for a work conference. I brought my staff with me and I think everyone was looking forward to it. I’d never been to Chicago before, so if I had any free time during the conference, I was gonna spend it exploring the city! Of course, I drank lots and lots of coffee and ate some amazing food. I got to see some beautiful art and learn about the city’s history. I visited the Cloud Gate and took the necessary selfie with it:

CP Chicago

It was such a cool city. But here’s the rub: I almost missed a lot of what made it really cool. See, the way I got around the city was either through public transportation or my own two feet. So off I went, armed with my Transit App and the maps on my phone. I was pretty proud of myself getting off one train, then getting on a bus, and making it to one place or another, whether it was the Museum of Mexican Art or to have some amazing Puerto Rican food in Humboldt Park. But I was walking towards dinner one evening after walking around Wrigley Field when it hit me – I’m walking through this city looking down at the map but I’m missing the stuff I’m passing by.

Now don’t get me wrong, this isn’t a post about putting your phone down. Not at all. I had my phone out because I didn’t wanna get lost in a strange city and end up paying a fortune to uber myself out of it. There was nothing wrong with using my map app; rather, I was on a 1.5 mile walk, basically in a straight line! I couldn’t get lost if I tried! So I decided to just hold the phone down at my side and look around a little bit. And then I saw it: a cool mural here, a fun store over there, and hey look at that cool building. I started to notice the details of what makes Chicago – in my opinion – a really cool city. It’s got lots of character in the architecture, the culture, and the people. And if I stayed glued to my map, I would’ve definitely arrived at my destination, but I would’ve missed what was on the way.

So what does this have to do with being a Heart Dad? Hear me out:

How often do we overlook the cool details on this journey? How often do we let this beast that is CHD consume our focus to the point that we miss small victories?

Here’s a recent example: the other day at bedtime Nolan asked me for a drink. At first I thought, “Stall tactic!” of course. So I went downstairs and, grumbling, grabbed his cup with chocolate milk and brought it up to him. I sat there beside his bed as he held the cup in both his little hands and drank all the milk through a straw. And it then occurred to me, much like it did on the streets of Chicago: yo, this kid – the one who at one point couldn’t move his hands or arms, the one who ate or drank nothing by mouth – is sitting here in his bed, holding his cup and DRINKING! What an incredible reminder of the amazing things he’s been through, about how – at this moment in time – he is winning big time! It made me smile outside and I inside I was downright glowing, And to think I could’ve missed it.

And you guys, I also believe it can be easy to merely be focused on the far-away things, like our kids’ CHD itself. I’m not saying don’t ever think about it; frankly that’s impossible. I’m saying don’t make that the only place you choose to look. Check it out, I’ve had plenty of times where my brain is like “OHMYGODWHATIFHENEEDSATRANSPLANTICAN’TAFFORDIT!” And I get it, we’re only human, and we have this incredibly beautiful – and fragile – life to care for. But please, please, please don’t miss the smiles, the laughs, the funny stories, the hand-holding, the head lean on your shoulder, the bedtime stories, the bathtimes, the singing and dancing, the eating, the playing, the running, and the jumping. Your child has been through so much, don’t let the destination be the only thing you watch; there are so many incredible things to see on the journey.

So today, this week, this month, take some time and really look at what cool things you find on your journey. Remember to celebrate those moments that previously may not have been possible. I don’t know what your situation is, but I know it’s not easy, and I’m hoping that this little exercise helps you find some joy, some peace, and some hope along your way.

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Let’s Do It Again!

Do you remember this joke (I use the term joke loosely) from your childhood?

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: *Mauls Person 1*


Repetition

Bruh. I know some of you just read that and came to the crushing realization that this joke has become a lot like your life, because you have small children who – let’s face it – can’t listen to save their lives, or just the daily act of being a Heart Parent is a lot of the same stuff over and over and over again. Ah, repetition. Don’t we love it?

If you’re anything like me, repetition is a struggle. My grandparents, at points throughout their lives, worked at factories and sometimes I think about that and can’t imagine doing that kind of work – standing in one spot, doing a repetitive task over and over again until I can go home. I would lose my mind. But hey guess what…Heart Dad life can sometimes be like it too. My struggle is often with the pharmacy: I use the pharmacy here at work because of the convenience and since the cardiology office is right next door in case I need any questions answered. But eeeeeeeeeevery month it’s the same thing for one particular med, and it goes like this:

Me: Hi I’d like to call in a refill for my son’s medicine *gives name and birthdate*

Pharmacy: Ok, which med?

Me: Sildenafil

Pharmacy: Um…it says here you’ll need to use the mail order pharmacy for that.

Me: Yes, I know, but I’ve talked to them and they can’t do this med, so I need you guys to do it.

Pharmacy: Are you sure?

Me: Yes, I’m sure…been doing this same call for months.

Pharmacy: Well let me call them and find out and I’ll call you back.

Me: *screaming internally* ok

*15 minutes later*

Pharmacy: Ok, we’ll have it ready at 2.

Dude.  Same thing.  EVERY. SINGLE. MONTH. It really used to make me go guano as I have to repeat the same thing over and over every single month. Whenever I pick up the phone to call in this med, I know exactly what will happen. But repetition is everywhere: every month call in new feeding supplies, keep track of meds to call in refills in time since they’re closed on weekends, give meds at 6:30 then 2:30 then 10:30. On and on. Repetition is everywhere in our lives!

Why does repetition make us nuts? Well it’s because it can be monotonous,  it’s the opposite of spontaneity and sometimes feels a bit confining. We want to spread our wings and do whatever, whenever…right? Right? But check it out: nature…the very universe itself…is repetitive, and no one freaks out. The sun rises, the sun sets, Earth turns, the seasons change, etc. And this repetition is important to us…if it didn’t happen, we’d freak out and it’d be pandemonium in the streets!

Let’s face it, friends…for a lot of us, the repetitive nature of being a Heart Parent won’t go away anytime soon. There will be meds to give, tube feeds to do, treatments to complete, appointments to go to, refills to call in. I think we can all make an effort to change the way we view these repetitive tasks:

Add Something Positive to the Experience: so if you gotta do it, make it purposeful and a win for everyone. When I give Nolan his feeds at night, it’s easy to see it as just part of the daily routine, but I’ve started using that time to just look at him and – even though he’s asleep – whisper to him that I’m proud of all he’s accomplished. For those couple minutes I can celebrate who he is, and that always makes me feel good, as opposed to “Lemme finish this so I can move on.” Or when I go pick up his meds from the pharmacy: I try to chat up the team if they don’t have a long line. A smile, a “hello,” and a “how’s everything going today?” goes a long way towards helping you not become the “here he comes again” guy.

Remember The “Why” Behind the “What”: as mind-numbing as this can sometimes be, it’s all for a purpose. Your kiddo needs the meds, needs the feeds, needs the appointments. It’s all part of the job of protecting them and giving them the best shot at a great life!

Pat Yourself on the Back Sometimes: don’t get a big head about it, but you know what? You’re doing a really good job…tell yourself that every now and then. You’re playing your part in making this happen and keeping your kiddo as healthy as possible, so give yourself a little bit of grace. You’ll always be ready to go back for more when you feel good about what you’re doing.

Embrace it, Don’t be Resigned to it: there’s a huge difference between “this is my life and I’m gonna learn to work with it” and “*sigh* I GUESS THIS IS MY LIFE NOW.” I get it, sometimes you can feel both, depending on the week or how much you’d have to deal with the kids smearing mystery goo all over the house. But if you can embrace the repetition more than you just get resigned to it, you’ll find it much less of an inconvenience. It’s the new normal, remember? I know it’s not easy, but just try!


Keep your head up, friends. I know sometimes the repetition gets crazy and I know it’s turned your life upside down. You can’t go out like you used to, can’t just get up and go, and your calendar is full of reminders about meds and dr appts and whatnot. I’m not trying to say “just deal,” that would be callous of me…we gotta work with what we got, but we also have to change the way we look at what we’ve got. You can do this.

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

2016bday6

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!

2016bday3

2016bday1

 

The Door

thedoor

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.

LookingGlassFalls1

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.

LookingGlassFalls2

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!