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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!”


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!

Christmastime is Here…Cue the Traveling Fear

Now that our twins celebrated their first birthday, it was time to look ahead to even bigger things: Christmas.  But no no no, this wasn’t going to be Christmas all snuggled up at home just the 5 of us and the dog; we were going to pack everyone up and drive down to Florida to be with my wife’s family for a week.  Before we get to that, let’s talk about home.  Last Christmas was spent half at home and half at the hospital with Nolan, who was still intubated with his chest open.  I gotta tell you, spending Christmas in the hospital is surreal, and while he was getting awesome care as always, it just kinda sucks the joy and wonder out of Christmas, since the only wish I had was to have Nolan home.  Now that he was home, we had the chance to really enjoy Christmas as a whole family.  As Hudson gets older, he absolutely loves Christmas and the twins seemed to enjoy the tree and festivities:


Now onto the travel part of our tour.  We’ve made the trip plenty of times: when it was just my wife and I, it would take us somewhere around 7 hours to make the drive.  When Hudson was born and we brought him, it was a little bit longer, but we were still able just to pack up the car and go.  This time, preparations were just bonkers.  Not only did we have to take the van, but most of the seats in the van would be filled with people.  Me and Bekah in the front, Grant and Nolan in the next 2 seats, then Hudson in the back with the other half folded down.  And we loaded the mess outta that van.  We had a suitcase for me and Bekah, a suitcase for Hudson, and one for the twins.  Then we had to pack snacks, formula, feed supplies for Nolan…ugh, just thinking back on it makes me itch. 

For me, though, the worst part wasn’t so much the packing or preparation…it was the growing paranoia I had as our departure date got closer.  I started to focus a whole lot on all the “what if’s”: What if Nolan’s feed pump stops working?  What if something happens while we’re driving?  Will we be able to find a decent hospital?  Will that hospital know how to treat Nolan?  I know, I know…paranoid.  But for me they were legit concerns: we’d been through so much with this kid, that I didn’t want anything to go wrong.  If I forgot to pack socks or something, that’s one thing, but medical problems are another.  My father-in-law is a Doctor, but he was still 7+ hours away.  We just had to GET there.

We made the decision to (potentially) make the ride easier on ourselves by splitting up the trip both ways and staying in a hotel for a night.  We decided on Savannah as a good stopping point.  I priceline’d a hotel (love me some Priceline) and it seemed we were all set to go.  As they say in infomercials, though, “BUT WAIT!”  As we were starting to load up the car, Nolan was taking a nap in the swing.  I walked over to check on him for a quick minute and noticed that his feet and nail beds were a little on the bluish side.  Not full-blown Smurf, just a little bit.  Sometimes that would happen to Nolan if he’s got a stuffy nose or gets super fussy.  Usually we’ll calm him down or get him sitting up for a bit and he’s fine.  This worried me a bit.  We hooked him up to the sat reader and believe it or not they were reading in the mid-80’s, so it was a little weird.  Eventually, though, it settled down and he was just fine.  Turns out he had some horribly bad diahrrea, which made the first part of our trip a BLAST (lol get it?).  Sorry, that was bad.

Anyways, off we went…and our drive went well: we had Hudson entertained in the back and the twins were relatively happy and we were making good time.  We were working our way through South Carolina, maybe 90 minutes or so from Savannah, when we hit traffic.  I HATE traffic.  I know everyone does, but I can’t stand it.  The 90 minute drive took seemingly forever, and when we finally got to Savannah we were all tired, hungry, and cranky.  Luckily, though, we managed to have a good night’s sleep.  After that we hit up Tybee Island for some winter beach fun before hitting the road again:


When we got to Florida, the kids had a lot of fun.  My wife is from a HUGE family, so there were lots of people to play with the kids.  Nolan got over the squirts and was back to his happy self again.  We even got to go to LegoLand as a family.  Hudson loved that, but even in the winter, Florida proved to be a little too hot for Nolan.  He was sweaty and cranky and we knew we couldn’t have him outside much longer.  Luckily LegoLand has what’s called the Baby Depot: it’s an air conditioned building with a changing/feeding station and a play area for little ones.  Grant crawled off to play legos with Hudson, and we laid Nolan down on a big bean bag chair in the corner.  As soon as he hit that chair he zonked out.  Poor little guy.  Yes, extreme weather is difficult for heart babies, you have to be really careful of the heat as well as the cold.  I have a feeling most of our family trips will be in the Spring and Fall. 

We eventually made our way back – with another Savannah stop in between.  It was a really good trip: no major issues with Nolan aside from the early tummy troubles.  None of my paranoia came true, which is great.  I can’t lie, I was expecting it to be a trip of horrors, full of screaming kids and an extreme lack of sleep.  But I was pleasantly surprised.  I know we won’t be able to make tons of trips with our little ones, particularly Nolan (it’ll be easier once he’s eating by mouth, hopefully)…but we got the most out of this one and I will cherish the memories.