Reflections on Ethan's 12th Birthday

Yesterday, May 20th, was Ethan’s 12th birthday. His birth grabbed me by the shoulders and turned me 180 degrees and said “this way, Jessica you will go this way, you will walk this path”. His birth shoved me in a direction and set my life on an uncharted course. As we walked together I got to know a boy who brought unimaginable joy to this unknown path. 

As his personality developed and blossomed, I met a fiery, joyful, curious child. I met a boy who thrived despite great challenge.

Ethan’s identity was certainly not his heart disease.
Ethan’s identity was Ethan.
He defined himself, he lived on his terms.


He pulled me into a big life. It’s as if he said “mom, go this way, I want you to see this part of life”. His mesmerizing joy captured my heart and gave me strength to do anything. He blossomed me, he stretched me, he grew me. 

My love for him keeps growing, and that’s why I miss him so. I crave knowing my twelve year old Ethan. I imagine he’d be part of plays and performances, he’d have moved beyond the drums to another instrument, he would be a social butterfly and have a slew of the latest and coolest electronic devices. He would be THE BEST big brother. He would keep tugging me and saying “this way mom”. And he still does, now in a different way, he tugs me still. 

In my sadness (yes, deep sadness because of my deep love for him) I have found a spring of gratitude. Gratitude for him, for this path, for the immensity of it all. I’m learning to live in the mystery of life, of Ethan. I suppose I will be learning this for the rest of my days. On this path I have seen parts of life I frankly would rather not know exist. But in these parts, I’ve witnessed unfettered beauty. I’ve tasted a sweetness that cannot be found in other places. And so my heart has learned to hold gratitude and sadness in the same space. 

Happy Birthday Ethan! I love you. I miss you. You are my compass, you are my beacon. You continue to shove me, to push me into more life, more learning, more experiences, more clarity. Thank you for being my son. I will forever be honored you chose me as your mom.