Where You Least Expect It

So I learned a lesson from a monkey…and not even a real one at that…

My son Nolan has been into a variety of toys and stuffed animals, but not really anything he’s latched onto.  Until he found the monkey.  You see, the monkey is a not-flashy stuffed animal that was actually part of a diaper cake that was made for us when we had a baby shower for our first son, who is now 5.  Somehow this monkey has traveled with us all these years, looking for the right child to obsess over him.  Enter Nolan.

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Needless to say, Monkey is Nolan’s homeboy.  Well one day things got interesting, because it occurred to us that we hadn’t seen Monkey in awhile.  Was he in the van?  No.  Was he under Nolan’s bed?  Nope.  In the wash?  Nah.  It was a great mystery.  The good news was that Nolan actually hadn’t been asking for Monkey, so we had time to figure it out.  What I was dreading, however, was the thought that Monkey was lost somewhere, like the grocery store or the mall.  Then, out of the blue one day, Nolan started asking for Monkey…and he walked around everywhere with my wife looking for him.  Oh boy.  So I ran upstairs and began looking myself.  I looked in the closets and in all the rooms, behind dressers, etc.  No Monkey.  I was exasperated.  Where the heck was the Monkey?

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Then I looked at the place I would’ve least expected it.  See, the underside of my oldest son’s bed is actually two big drawers that pull out.  Of course, I already looked in those drawers for Monkey with no luck.  Something told me to pull the drawers out and see if, by some CRAZY chance, the Monkey was back there.  I got down on the ground, looked, and there he was!  It was a triumphant moment as I bounded down the stairs and victoriously presented Monkey to my happy little boy.  YESSS.

So what on earth does this have to do with anything?  You see, as a Heart Parent sometimes things get difficult, sometimes they’re frustrating, and sometimes they’re just plain overwhelming.  There’s not enough time, not enough sleep, and not enough good news to go around and make things better.  We know what it’s like aimlessly roaming the hospital halls just waiting, or that nervous feeling in the pit of your stomach when the calendar inches towards the next cardiology appointment.  In those crazy moments, there exist other moments of joy, victory, and confidence.  We always want those things to exist in places where it’s obvious, almost like it fell out of the sky into your lap.  I wish I could say that’s always the case.  You have to find those moments…and often they’re not where you expect them to be.

It can be in the car, stuck in traffic, when the song comes on…you know, the one you haven’t heard in foreeeeever, that makes you smile.  Or it could be that other parent, you know, the one who has it all together while you’re a mess; and they tell you you’re doing an awesome job.  Or maybe it’s on that day you have to leave for work at 5am and you look up at the stars still in the sky and the beauty of it takes your breath away; and you realize that while your world isn’t always perfect, it can still be stunning.  Friends, don’t let those moments pass you by: they’re like little treasures that you stumble across from time to time and if you learn to appreciate them, you won’t be able to help but to smile and get that feeling like “Hey, I’ve got this!”  So don’t forget to look around from time to time, find moments where you can help others, find your “monkey,” and remember that it’s ok to just smile and laugh sometimes!

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 Chris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

Ethan Kolodzinski

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When our twins were born, it wasn’t ideal timing. Labor started at 39 weeks, so we knew they probably wouldn’t need NICU, but we were moving into a new house that day. As we drove to the hospital, friends and family descended on our place to move us, so we figured we’d have the babies, and be home by the next night. We thought we’d leisurely deal with the crazy mess of a move over the next couple weeks. We were very, very wrong.

When the boys were born, Lucas was fine, but Ethan didn’t pink up. We were able to hold him for a total of about 10 minutes before he was rushed up to the NICU. He was found to have a hole in one lung, which they were able to resolve, but his condition didn’t improve. After four hours of trying everything they could, the staff suspected a more serious problem than they could treat, even with a Level III NICU. When he was 8 hours old, he arrived at Children’s Hospital of Wisconsin under suspicion of a heart defect. He went straight to the Cardiac Intensive Care Unit, where he was quickly diagnosed with an obstructed supracardiac total anomalous pulmonary venous return. At 3:30 a.m. and only 11 hours old, our brand new baby was wheeled away for emergency open heart surgery. If he had not undergone the surgery when he did, he only would have survived a few more hours.

Ethan’s defect is rare, and not one that is easily diagnosed before birth, so it was like a bomb going off in the middle of our lives. None of our other children had ever had any kind of serious illness or surgery, so we were completely unprepared for something like this. He spent two weeks in the CICU, and another week and a half on another floor. Those were the hardest three and a half weeks of our lives. It was gut-wrenching to sit next to Ethan, unable to hold him, while snuggling his perfectly healthy twin. His siblings desperately wanted him to come home, and it broke our hearts to tell them over and over, “Not yet.” The moment we walked out of that hospital with both our boys is one we will never forget.

Outside of weighing less than his twin, and scars he totes, you’d never know what a rough start Ethan had. The boys are 18 months old now, and we cannot imagine what our, and especially Lucas’s life would be like without him. It is a miracle how we have gone from being hours shy of losing him, to him being able to live a virtually normal life. Half of our dynamic duo wouldn’t be here, if not for the skills of Drs. Jim Tweddell and Mike Mitchell, and the rest of the amazing cardiac team that Children’s has assembled.

We are so incredibly blessed to live when, and where, there was the knowledge and technology available to save our sweet little boy.