Thankfulness pt. 3: My Heart Warrior

This is part 3 in a series about thankfulness.

My Dear Nolan,

This Thanksgiving, and as we approach your 2nd birthday, I can’t help but reflect constantly on how far you’ve come.  This year you’ve crawled for the first time, you walked for the first time, climbed for the first time, ate multiple feeds by mouth for the first time.  You are an amazing little boy!  I remember the fear that gripped me when we found out about your special heart and the even stronger fear when we left you in pre-op for your first heart surgery.  I worry about the struggle to get you off your g-tube, it saddens me that you can’t eat the snacks the other kids eat at church daycare, and it used to pain me to hear your screams and cries when we’d practice physical therapy just to get you walking.  I wish your life could be toys and games, not appointments and therapies.

I wish I could understand what it feels like to have a single ventricle…does it feel funny/weird?  Is it exhausting?  There have been many times that I thought – if I could – I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it meant you could have a whole heart.

But you know what?  You wake up daily with a smile and joy that dwarfs those of us with complete hearts.  You survived two serious heart surgeries and everything involved with them.  You went from a kid who couldn’t even sit up to a little ball of energy who walks around the house and throws tupperware around.  Every day you wake up you beat the odds and show me what toughness and bravery really mean.  You teach me to look on the bright side, to find the important things…and to be joyful.  You’ve taught me not to say “Woe is me, this is too hard,” and instead say, “Look how far you’ve come!”  You have one heart surgery left, and I have no idea how I’m supposed to explain it to you, how I’m supposed to explain that it will hurt but will help you live a great life.  But you know what?  We’re gonna get there and get through it together…as a family.  There will be lots of questions that I may not be able to answer, but I promise I will work hard to find those answers.  You’re not at a disadvantage, rather you’ve been given the chance to be extraordinary!  I want you to grow up and just love people, and care just as much for those who are going through tough times.  Show them how you’ve kicked CHD’s butt and be an example for never giving up.

So now, instead, I think I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it means you’re going to have the best life possible, in spite of your special heart.  I love being your dad…it’s an honor to be your dad.  It’s hard work, but your smiles, your laughs, and your gibberish make it all worth it!  Your mom and I will continue to fight to get you the best life, the best care, and all the love a little boy – CHD or not – could possibly get.

So this Thanksgiving season, I want to thank you – Nolan – for teaching your old man how to be brave, for teaching me how to fight for you, for teaching me never ever to give up.  Thank you for giving me real perspective on life.  Thank you for the opportunity to meet and help families just like ours.  Thank you for being – pound for pound – the toughest human being on earth.  I can’t wait to see the places you’re going to go!

Love,

Dad

UggaMugga

Ugga mugga!

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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 24, 2014, in thankfulness and tagged , , , , , , , . Bookmark the permalink. 3 Comments.

  1. Beautiful post. These little heart warriors are so amazing. So glad that Nolan is doing so well

  2. Thank u soo much for sharing….your post was beautiful..i cried…my son has hlhs also.. these last few months have been difficult for my fiance and i, but we are soo happy about our baby….as a mother, its comforting knowing my fiance and I aren’t the only ones going through the same thing as other parents…..for a long time, I felt no one could understand us and what we were going through and feeling…

    • Hi Linda, thanks for reading! I’m glad you were able to find some comfort and support in the blog: there’s lots of great people out here who are going through this HLHS journey too and having those connections is so very important. Please don’t hesitate to reach out if you ever have any questions and I wish your baby the very best!

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