Julie’s Essay

For every heart parent, there is a before and an after.

Whether the line is drawn in the darkness of an ultrasound room, in the silence of a NICU nursery, or in the bustle and shock of an ER, it is there for each one of us, dividing what was, and what is.

My line appeared suddenly, seven years ago, when a chatty sonographer stopped talking and started measuring. Humans are supposed to have four heart chambers, apparently. Who knew? Most people like to keep their great arteries untransposed, as well, but my son Malcolm has always done things differently. He doesn’t spend a lot of time stressing about little stuff, like a missing ventricle. There are more important things to think about. Trains. Hot Wheels. Minecraft.

I spend a lot more time considering the minutiae of his strange, weird, wonderfully patched-up circulation than he does, and that’s the way I want it. He doesn’t need to waste any mental energy on Fontan-associated liver disease, or worry about ascites and pleural effusions. He bears the physical burden right now, and I’m holding onto the mental one for him. We heart moms have strong arms and large vocabularies. We have to.

And before? Well, I can’t remember before. All that has happened since that line was drawn has colored everything on the other side anyway. Not in a bad way. It’s just that when your life completely upends and the kaleidoscope finally settles, you start doubting the staying power of that other paradigm anyway. For me, living with the reality of congenital heart disease has been more about reality solidifying than reality crumbling. Life has always been unpredictable, out of my control. Great love and great suffering have always gone hand in hand. I just didn’t know it, yet.

Now I do.

I don’t regret much about the before, either. I like who I am now. I like who I’ve had to become. Before, little things bothered me. Before, I knew I would die if something bad happened to me. Now, I know my own strength. I can survive a lot.

I like who my son is, too. What most people don’t understand is that you cannot separate a person from what they’ve gone through. There is no Malcolm, unless there is also HLHS, and twenty surgeries, and pain.

Almost from conception, his heart has been wonky. That’s part of who he is. His happy temperament and optimistic outlook have been polished and refined by more hardship than most adults experience in a lifetime. His scars are but battle trophies; his soul is whole and beautiful. He is a light that shines for all to see, because suffering has made him transparent and open.

I know how to value a gift like that.

For every heart parent, there is a before and after. Let go of the before. Living with CHD is hard, but it is worth doing.

Embrace your child, as they are. Embrace the after.