That could have been you.

I have a confession.

I have cursed at a baby.

Said four letter words, thrown the “bird”, and wanted to raise fist to cuffs to an infant.

Ok…maybe in my head.

But, I have…yes.

I’m not proud of it.

It came from a place of anger.  Jealousy.


When I found out about Evan’s diagnosis, I was 22 weeks pregnant.

For the next 16 weeks, I also cursed out pregnant women and newborns.

I would silently say mean things.  I would cry in rage about how they got to enjoy the pregnancy glow and be blissful while I waited in anticipation for my baby to arrive.  My baby who had a heart that was broken.

While those women longed to hear their baby cry…

I wondered if mine would.

While those new moms sent their newborns to the nursery for an hour or two of rest…

I prayed and prayed for just a moment to hold mine.

Then, I looked at my beautiful boy with the wide smile, newly scarred chest…and feeding tube shoved in his nose…feeding pump beeping incessantly for some phantom problem…and I cursed nursing babies, babies taking bottles, babies being normal.


I found anger in places I didn’t know existed.  Anger as I looked at fresh, healthy babies…unmarked and unscarred and would say to my little boy, “That could have been you.”

And I cursed at God next…wondering why it wasn’t him.  Why my son had to suffer.  Why my son had to endure pain.  Why my family had to spend days, upon weeks, upon months apart.

Fast forward to today.

Eighteen months later.

Eighteen months old today.  My Evan that is.  The boy I happily, joyfully call my heart hero.  My warrior. My best boy.

All that anger seems like a distant memory.

I realize, today, that all those feeling were – are – just.  I was scared.  I am scared.  Fearful that Evan wouldn’t ever get the normal he deserved.  Fearful our family would only know a life of hospital stays, feeding tubes, therapy, doctor visits.

But today…eighteen months later…I sit here…in awe.

In awe and find myself cursing out the ringing pain in my foot because I just stepped on a Lego Evan left on the ground.

Then…like a mad woman…I find myself laughing at the mess of my house.

The sippy cup of milk left on our bedroom floor.  The pile of laundry that mainly consists of blankies that have gotten “pre-washed” in the toilet…pantries stuffed and bursting at the seams with cookies, crackers, snacks of all shapes, sizes and colors….

I look at the sad, tired eyes of the my Golden Oldies…who have endured countless rounds of abuse from the tiny toddler terror…as he pulls tails, steps on paws.

My Evan.

All the things…the things I prayed about…have come to fruition.

And I, ask for forgiveness from the babies…the mommas…that I silently cursed.  Because, it wasn’t their fault my Evan endured what he did.

He had to.  It was a part of his story.  His heart.  His wide smile.  His journey.

All of it…chapters of riveting and harrowing stories of faith and prayer and strength.  Of love.

Of hope.

A lot has happened since the day he came into this world to now.  I have been welcomed into the Heartland where I have prayed for babies like they were my own, I have mourned with mothers as they have lost their children. I have encouraged.  I have supported.  I have been a distant friend…who was once a stranger.

And as I stand witness to those mothers who lost their children…

And as I stand witness to those children who have suffered delays as a result of surgeries…

And as I stand witness to those children are still battling and struggling…

I find myself looking at my sippy cup holding, furniture climbing, toilet bowl playing, Goldfish eating, Cheerio loving, tantrum throwing, hair pulling, sister annoying, blankie loving, cuddly little monkey…who in all respects…is a normal 18 month old boy and say to him as I stand witness to the sadness of  the Heartland and say,

“That could have been you.”

But, for whatever reason…it’s not.

Evan’s story has suddenly become mundane.  Normal.

And its in this time of normal that I find the greatest of joys.  Because, I know his next open heart surgery is just breaths away.

And I don’t know how his story will unfold at that time.

I just know now that the next few chapters of his life will be filled with laughter, love, and the everyday that so many take for granted…but we capture and hold onto as if we’ve received the greatest treasures.

Happy 18 months to my hero.




  1. What a beautiful story you share with everyone.Just a thought I would like to pass on to you.Please don’t let children play in or around the toilet.I worked with a woman whose 2 y
    ear old child was playing in the water, she fell in and couldn’t get out and no-one heard her on time, and now has severe brain damage.

  2. Lauren R says:

    That was so beautiful! It made me cry huge tears. Love to you and yours.

  3. Your journey is beautiful. You take us all in with your words. I too have a “heart hero” who is eight years old. I could relate to everything you so eloquently shared. I still have moments when my own heart feels like it is being ripped out of my chest with sadness for my boy who is not always able to keep up with the other boys. When his own anxiety takes over and doesn’t allow him to do all the things he so wants to do. But most of the time all is “normal” now. My fears have turned now. They are more for him. More about the teasing and bullying that kids experience. Not so much about my feelings anymore. I love him more and more and know it is all part of our journey, but it doesn’t mean it is easy. Thanks for sharing your raw emotions. And happy 18 months to Evan! Thoughts and prayers for your next surgery. All the best, Kristen @ One in 1 Hundred