When Being Thankful Looks Different

I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog.  I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent.  Hopefully for those who have gone through it, this blog shows that you’re not alone. 

I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving.  Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc.  But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.

While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did.  In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared).  There are a lot of babies that are born with congenital heart defects who aren’t so lucky.  They’re born, look normal – just like Nolan – except they go home within a couple days.  And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky.  Many hospitals aren’t equipped to deal with CHD babies, much less recognize them.  Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU!  So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING. 

I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff.  For the bright colors and cheerful decor.  Trust me, when you spend 2 months daily in a place, you notice that kinda stuff.  I’m thankful for their volunteers, the doctors, the nurses, the CNAs.  I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day.  A Children’s Hospital is definitely not a place you want to be by choice.  We had to be there, and I honestly believe LCH is one of the best around. 

I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital.  She continues to be a rock and an amazing mom and wife.  When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis.  Those guys are cowards and they’re weak.  Nothing less.  I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.

Now for the crazy part.  In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort.  I have a job to do and that’s to be a great husband and an awesome dad.  Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective.  Nolan is surviving and thriving and I thank God every day for it!  There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home.  Perspective.  It’s a powerful thing, and I’m thankful for it.  I tell everyone that ever since Nolan was born, my life changed.  I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live.  And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.

Happy Thanksgiving Everyone!

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on November 27, 2013, in faith, family, life, thankfulness and tagged , , , , , , , , , . Bookmark the permalink. Leave a comment.

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