Russell was my first child. I had no experience of the joys of parenthood before he came. I thought I might have an idea as I went about my day as a special education teacher. Students would finally get a difficult concept, and I’d have a rush of pride for them. “This must be similar to watching your child triumph over hard things.” I’d think to myself. I had no idea how far from reality I actually was.
Because Russell was my first, everything I experienced with him was my normal. My introduction to parenthood. I was surprised to find that every triumph felt dizzying and overwhelming. Parenting had deep, deep, sorrowful lows. But dear God the highs were incredible!! I didn’t realize that most of this was due in part to Russell’s heart condition. It wasn’t until I had my second child, Lucy, over four years later, that I realized what was really going on. Comparing their childhoods opened my eyes.
The triumphs are bigger, y’all! And I’m not even talking about monumental things, I’m talking about all the things. Everything from grabbing your finger, to pooping (first poops after surgery are a party.), to smiling, to rolling over, to taking a bottle, to eating potato chips, to finding their toes, to giggling, to taking those first steps, to just simply breathing on their own. You do not know the high of parenting until you’ve seen a child go from death’s door to…everything you were told they wouldn’t do.
This doesn’t lessen my second child’s life or accomplishments. She is amazing in her own right. Her personality is big and gloriously funny. She already uses punchlines and sarcasm. And when she reaches a milestone, a wave of joy rolls over me as well, but it’s expected. It’s different.
The night after Russell’s first surgery at 10 days old, his heart stopped. Miraculously, amazingly, a rounding cardiologist on anther case happened to be in his room when it happened. Thanks to delayed sternal closure (Read more about delayed sternal closure here.), he was able to peel back the Ioban and administer 10 minutes of cardiac massage to his exposed heart, bringing him back from his flatline. He died. He died and got a second chance. And that was just his first of many.
Even without this harrowing event added on, every child who’s undergone an open heart surgery has experienced a traumatic, near death event. Their hearts are literally stopped, left resting while the surgeon works to save their life. They are tiny miracles, laughing in the face of all the doubters. “Look at me! I’m still here. Bring on your worst.” They seem to quietly, firmly say with their steady gaze from their bassinets in the PICU.
Every milestone they meet is amazing, because they aren’t even supposed to be here. Without modern medicine, these babies, these children, would cease to exist in the world. How can you not be amazed daily by their presence? Every coo, every smile, every tiny grip of your finger. This almost didn’t happen. It’s like living in a parallel universe to the one the doctors warned you about.
If you’re on the outside of the heart parent world, perhaps a friend or acquaintance, don’t be surprised if the shouts of joy in those videos they post on social media are louder than you’re used to.
Yes, it’s completely normal for them to bellow and bawl with joy and disbelief when they see their baby roll over for the first time, months after the “average” child does. And the fact that they posted 50 pictures of their baby’s first foods is probably because their child suffered from an oral aversion and has been gagging on anything in their mouths up until that point.
When their kid enters school, you may roll your eyes at them wallpapering your feed with pictures. But keep in mind that they may have gotten a death sentence at their child’s birth. Each year they progress is unbelievable to them. And yes, quietly weeping with joy at their heart kid’s kindergarten spring concert is totally normal when they didn’t think they’d ever get that far.
Feel free to cheer along just as loudly. You’re witnessing a miracle.