Blog Archives

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.

__________________________________________________________________

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.

________________________________________________________

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!

Advertisements

Sometimes You Just Need a Laugh

Hey fellow heart parents!  Listen, we all know that life is tough with juggling our heart warriors’ needs, work, play, school, etc.  So this post isn’t meant at all to focus on those things…in fact, today’s post is to help us all remember to take a step back and smile and laugh a little bit in spite of some of the challenges in our life.  So let’s take a minute and think about the first time people (whether family, friends, or strangers) met your heart baby.  You know people are well-meaning but at times their responses are….well…a little interesting.  With that in mind I took the time to create something that I hope will make heart parents laugh just a little….behold: Heart….Parent….BINGO!

HeartParentBingo

 

Unless you’re uber-sensitive, I’m hoping this little game at least makes you crack a smile.  Now don’t get me wrong, this isn’t meant to offend the well-meaning, friendly people in our lives: God knows they’re trying their best.  But come on: we’ve all heard some of this stuff, right?

So as you go about your week and you run into people who tell you things like “Oh he’s better now, right?”, instead of sighing, you can think about your BINGO board and check one space off.  I’m a big believer that in spite of our difficulties there’s always a bright side.

Alright Heart Parents…who will win BINGO first this week?

 

 

The Shock

Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him.  It seemed to take forever, but having our friend Marc there to keep us company helped pass the time.  Finally someone came to get us and brought us up to the CVICU to his room.  And what I saw shocked me:

NolanBedPostSurgery

 

My little boy.  My 4 pound baby was hooked up to so many machines.  I was shocked.  Completely numb.  I don’t even think I said anything, I just couldn’t.  In my mind I prayed and prayed, then prayed some more.  Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc.  It was nuts.  I couldn’t believe how swollen Nolan was…it didn’t even look like him.  And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:

NoliOpenChest

 

It was all so scary.  I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah.  Something about them doing an x-ray or an echocardiogram to see how his heart function is.  I was just in complete shock.  I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery.  Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.  

Besides the shock, I felt really exhausted in that moment.  It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead.  We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis.  I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.  

People like to say that “being a man” means being tough.  I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process.  The moment I saw my son like this it sucked the tough outta me.  I had to learn what tough really is.  And how did I learn that?  I looked at that 4 pound baby to lead by example.  THAT’S tough.

Add Jaundice to the Menu

NolanBiliLight

One day I came down to the NICU to see poor Nolan in his little bed, with this bright light shining on him and this weird mask covering his eyes.  The nurse said Nolan had some jaundice, which is typical of babies who are born a little early, and the light was called a Bili Light, which was a treatment to help the jaundice along.  The light had to stay on, and so did the mask, until they were happy with his tests.  Grant had some jaundice too, but not as much as Nolan, because he used the Bili Blanket, which was this funky light blanket that would be the envy of EDM fans worldwide.  And he only needed it for like a day.  Nolan had his for several days.  It was pretty depressing because the mask meant you wouldn’t see his little eyes and it almost made him less human, if that makes sense.  

Day after day, we’d come to the NICU and see Nolan under that light.  Occasionally they’d give us a short break to hold him or just love on him a little bit, but mostly it was hands-off, talking-only stuff.  It sucked.  I knew he needed it, but it felt like he was making zero progress.  I mean heck, isn’t it enough he had a heart defect?  Now he has to be all covered up, just laying there to be poked and prodded.  It made me feel awful for him.  For possibly one of the first times (and definitely not the last), I wanted so badly just to be able to fix him.  I would’ve done anything.  Guys are supposed to want to fix things, and here I was helpless.  Meanwhile, Grant was just a few feet away and he was able to wear clothes and be held.  While Nolan only had our voice…