Like Monet’s San Giorgio Maggiore at Dusk, our lives are full of small strokes of color that require us to take a step back to see the bigger picture. Heart Dad, Chris Perez, shares how he’s learned to view his family’s journey with CHD this way.
A little over 6 years ago we sat in a Cardiology office, looking at two drawings of a heart: one looked kinda like what I remember seeing in high school biology; the other looked…strange. This was the third doctor we’d seen that day, who began with, “I think I see something in the ultrasound that might be a little concerning,” and ending up with, “Your son has a condition called hypoplastic left heart syndrome.” By that point, I was already scared to death, and once the Cardiologist explained it all, it felt like I was in a fog, and yet my world was just spinning. It was a moment I will never forget: one that altered the course of my life and my family’s as well.
Looking back on this moment got me to thinking about the concept of “moments,” overall. As Nolan wraps up a year of Kindergarten, there’s a lot to reflect on. The more I thought about it, I oddly started to think a lot about the famous impressionist painter Claude Monet. When I was in high school, I was chosen to go on a trip up to Boston to see a collection of Monet’s paintings. Frankly, I knew nothing about him at the time, I was just glad to get out of class! But I’ll never forget stepping into that museum and being blown away by the paintings – big and small – they were beautiful to me.
That day I also learned about impressionism, which is characterized by small, quick, and visible brush strokes. The cool thing was that the closer you got to the painting, it looked just like that – a mish-mash of brush strokes…but when you stepped back – BAM – there was a bridge, or water lilies, or haystacks. Claude Monet became my favorite painter that day, and whenever I’m at a museum that has his works, I always stop to look.
Monet’s paintings remind me a lot of being a Heart Dad because this life is full of moments – scary, sad, happy, uplifting – and each one of those moments are like a small brush stroke in a bigger picture. So maybe that moment in the Cardiologist’s office is a small stroke of red, or seeing Nolan post-Norwood with his chest open and on the ventilator is a stroke of blue. His first steps could be yellow, and his big strong hugs would be orange. And on and on. Our life is full of these moments, and we commit them to memory or photos, and on the grand canvas of our lives they’re individual brush strokes creating something bigger and wonderful.
And yes, when you get up close to some of these moments, they can be unbelievably messy – a mixture of explaining the Fontan to your toddler combined with watching them run and climb on the playground. All the while a bigger picture is being made. I encourage you, fellow Heart Parents, to step back, from time to time, and see the picture that’s being made. It’s not an easy life, not by a mile, but maybe when you step back and evaluate your journey you’ve learned how to be kinder, how to listen better, how to empathize with others. Maybe you’ve learned to be braver than you ever thought possible or bolder in the face of tremendous doubt. Maybe you’ve learned to be a big help to others by simply saying, “Hey, I’ve been there.”
Please enjoy every single moment with your Heart Warrior: celebrate every accomplishment, and never forget how far they’ve come. And when the difficult moments come, I hope you also remember that it’s a moment – a brush stroke – in your larger body of work.
When Nolan was struggling post-Norwood, I remember feeling a little hopeless at one point. His nurse came up to me in the lobby of the hospital as she was leaving for the day and said, “A masterpiece takes time.” And I never forgot it. So as the masterpiece that is your Heart Warrior’s life – and yours – is being created, be strong, be brave, and remember to step back from time to time and see how your work of art is coming along.
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, coffee, and memes. You can visit Chris’ blog at http://hlhsdad.com.