One Year with a Warrior

One year ago, we didn’t know if we would ever actually get to meet him.


The prognosis was grim.

We knew that *if* he survived delivery that he would have to immediately go into open heart surgery.

We knew he was far too small. He needed to wait at least 3 more weeks to be born.

We knew the presence of 17 nurses and doctors in the delivery room was not a good sign.

One year ago, I held his dad’s hand and fed him the lines while he baptized him before they rushed him off to the NICU.

One year ago, we met Aaron James Wheeler. Miracle’s baby, the miracle baby.

I remember waiting until my mom arrived before sneaking down to the NICU to look at him. I remember seeing the monitors and tubes hooked into him for the first time and breaking down. I remember being glad that my sister wasn’t there when I did because she needed us to be strong. Because what she would endure the next year was a pain and grief unlike any I can imagine. She would have to watch the baby boy she brought into the world survive two open heart surgeries, a punctured lung, and dozens of other procedures. She would fall to the ground in the hallway outside his room one night last August when he stopped breathing for 3 minutes as the nurses scrambled to resuscitate him and finally succeeded. She would be at the hospital every day. Every day for 5 months. Waiting. Telling him she loved him. I was there by her side, but I couldn’t carry that burden. That was her alone.

The Wheeler family has had a tumultuous year, and through it all Miracle and Deangelo (and DJ, who was just a year old himself when his brother was born) have remained steadfast. There is still one more heart surgery looming in the next year.

But we are here. One year later. And Aaron is most joyful, calm, sweet, loving little boy.

He and I have a secret sign from the long days in the hospital when he was under sedation and/or comatose. So he would know I was there. I place my finger on the center of his forehead and trace a heart around his face and tell him he’s my heart.

One year later, he is able to look me in the eyes and smile at me when I do it.  He remembers.

Happy Birthday, to my Warrior Baby. My inspiration. My heart.


About planecrush

I am a freelance theatre director and world traveler based in Milwaukee, USA. I am passionate and slightly irrational about the following: classic literature, film, and theatre; travel, aviation, wine, shoes, fascinating people and places, beauty, art, my dogs, and peanut butter.
This entry was posted in Hypoplastic Left Heart Syndrome, Warrior Baby and tagged , , , , . Bookmark the permalink.

2 Responses to One Year with a Warrior

  1. Judy Eggers says:

    Beautiful…beautiful boy, beautiful family, beautiful blogger.

  2. Sharon Patterson says:

    What a heartfelt and inspiring tribute, to a precious baby boy and his beautiful family, from a wonderful and remarkable young women. This tribute brought me to tears remembering what transpired, but in the remembrance I found joy in how Jesus has brought all of you through that to get to this 1 year celebration of our mighty warrior Aaron! Thank you for sharing . . . and Happy Birthday to Aaron!

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