Monthly Archives: July 2015

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!

A Potentially Life-Saving Reminder

Hey friends!  Today I want to keep tings really practical for everyone, whether your a Heart Dad, Heart Mom, Sibling, Friend, etc.

Way back when Nolan was prepping for discharge from the hospital after his Norwood procedure, there were a few requirements we had to meet before he could be sent home.  This included things like putting him in his car seat for 30-40 minutes while attached to the pulse ox reader (to simulate his drive home), giving medications through his tube, etc.  One other requirement was for my wife and I to complete an infant CPR training DVD.  It came in a box with its own CPR dummy and we had to watch the DVD, practice, and display our knowledge to his nurse.  This was important stuff to know because it could save his life in an emergency.  We went home and – thank God – never had to use the things we learned from the DVD.  And – admittedly – over time I really forgot a lot of the things we learned about CPR.  So with that in mind, I wanted to use today’s post to serve as a reminder that you really should know what to do should an emergency arises.  It could be the difference between life and death and I’m not being over dramatic.

CPR for Infants

CPR for Children

CPR & AED Use for Adults

Of course, YouTube videos can never take the place of a class where you can be certified and I really encourage you to look into that as well.  Check out this link for classes through the American Heart Association: http://www.heart.org/HEARTORG/CPRAndECC/FindaCourse/Find-a-Course_UCM_303220_SubHomePage.jsp

This is a skill that is very important to have…let’s just hope we never have to use it!