It’s In Your Hands

Being a heart parent isn’t easy. That’s no news flash. You’ve run the gamut of emotions from scared, to sad, to angry, then rinse and repeat. Oh yeah, and life doesn’t stop and wait for you to get it together either. There are days where you feel like maybe you’re starting to get it together, then comes a week where you’re feeling like the worst parent in the world. Through it all you try your best to hold on, and in this whirlwind of craziness that is our life we find ourselves craving encouragement. Well, Mom and Dad: I’m here to encourage you today.

I want you to take a deep breath, let it out, and then think for a moment about your hands. Think of all the things you use your hands to do. Next look back on this past week or two and remember a time where you used your hands to do some good. Maybe you used them to calm your heart warrior after a fall and a scrape. Maybe you placed a hand on another parent’s shoulder to let them know you’re there with them in their struggle. Maybe you’re making your famous spaghetti and meatballs that your kids love. How do you feel when you think of that moment? Let yourself be filled with that feeling.

Parents, there’s something special in our hands: something that brings joy and peace and safety to others. And that – in turn – makes us better. Let’s face it, we’ve seen a lot of profane things in this world: the tubes, the monitors, the incisions, the open chest and beating heart. We experience real fears and anxieties, real trials and struggles. In the midst of these things, though, is the work of our hands…and that work is sacred.

So when you’re pumping in that last tube feed and you’re tired, or you hammering out a supportive text message to another parent, or you’re shaking the hand of a lawmaker as you advocate for heart kids, or you’re snapping a fussy toddler with a beautiful scar into a car seat, I want you to realize that it’s sacred work you’re doing, in the midst of all the profane things we face. And when you get down and you feel like it’s all for nothing, I want you to close your eyes, take a deep breath, and think about what your hands have done this week. Create a special place in your mind where that feeling resides and make sure you always go back to it. Because you’ll realize that after close inspection, your hands are often busy doing very sacred work. Stay strong, parents.












BlogHeadshotChris 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


Wrapping Paper

I have never been good at surprises.  Keeping anything a secret is nearly impossible for me.  My kids have figured it out, too.  If I leave a gift wrapped present out, they quickly begin guessing and if they are even remotely close, I have to run and hide for fear of giving it away.  Just a thin sheet of paper between the unknown and a great surprise, and I am very capable of spoiling it.wrapped present

Being “in transition” with my advocacy work is a lot like holding a wrapped present – and a bit more difficult than I had expected.   For someone who likes to share (perhaps, too much?) I struggle, daily, with how much to reveal about what this transition process.


But, I can contain my excitement no longer…  I am so excited about a new project I am working on, with an amazing group of people.  Ah, there, I said it.

Here are a few more sketchy clues that I feel comfortable sharing at this point:

  • I am no longer working with the Adult Congenital Heart Association.
  • Yes, I will still be doing CHD advocacy – Are you kidding, I eat sleep and breathe it!
  • There will be a huge educational component, too.
  • The focus will be in the pediatric space, but there will definitely be life-long messaging.  It really is a continuous loop: to ensure that our kiddos grow up to be vibrant adults with CHD (ACHD) we need to understand the adult space in order to improve what we are doing in childhood.
  • We will all need to stand together to make this work!!!

As soon as the basic framework of the project is set in stone, trust me, I will shout it from the mountain tops.

In the meantime, find your inner child and start getting at least a little excited for what’s under the wrapping paper!