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Ethan’s Story

On June 29, 2013, at URJ-Goldman Union Camp Institute, a summer camp near Indianapolis, a sudden burst of lightning struck on the athletic field where Ethan was out enjoying some Ultimate Frisbee with other campers. Everything changed for Ethan in that one moment. He was taken in critical condition to a local Children’s Hospital, where the doctors and nurses worked around the clock to stabilize him and assess his injuries. Ethan suffered a severe brain injury as a result of his injuries.

Updates (100)

July 7, 2018

June 29

I have an annual reminder on my phone calendar on June 29 with the title, “Most awful day of my life.” Not that I need a reminder, as that date is etched in my memory, yet every year it serves as a constant companion of dread.
Scott and I have just returned from our 2nd annual “West Coast Family Tour.” We are especially grateful for the support and care from Ethan’s awesome team of nurses, who all kicked-in to high gear and gave us the time to spread our wings and connect with our extended families. As the years pass, we yearn to spend meaningful times together, and wish that we were all geographically closer.
Being out west as we led up to June 29 provided a brief reprieve from the sadness; however, the awareness of “the date” found us as we waited at the airport for our homebound flight.
Here we are at five years. As we often say in relation to how quickly our kids grow, or how fast each school year passes, I can’t say that these five years have flown by—we have felt the weight of every single day (that’s 1,825 days); in addition, we have also felt the love, the support, and the connections to so many magnificent people—family, friends, neighbors, community members, congregants, strangers. If I were to draw a Venn diagram it would show all these different circles, with the intersection at Ethan.
As heavy as our hearts have been, the amount of gratitude we feel toward everyone who has been a part of our story provides a counterbalance and continues to sustain us to this day. Early on in our first lengthy hospital stay, when the number of supporters was at an all-time high, we were gently encouraged to accept that this level of ongoing support was a fleeting event, a strange and wonderful phenomenon, and that we should prepare ourselves for when the well-wishers returned to their lives.
We’re still waiting.
The wave of Team Ethan has been a tsunami, and is as strong as ever, constantly clearing a path to allow us to remain upright. Granted, our needs today are far different than they were in those initial days, weeks, and months, but we know in our hearts that Team Ethan will continue to rise to the challenge.
We mark this date as an awareness of where we are, and how much we appreciate those who have been alongside us the entire way.

Five years later, we continue to go from strength to strength,
Alexia and Scott

June 22, 2018

Dear Ethan,

How do I even begin to express the emotions that have been pouring through my body, mind and soul this entire school year? Let me begin with a story:

When you were born, on July 19, 2000, we were so excited to welcome you into our growing family. Not long after (I’m not kidding here), I was asked on a number of occasions, “When will you start Ethan in kindergarten?” “Really?” I thought, while looking at my beautiful weeks-, and later, months-old baby. I never thought of your summer birthdate as providing such interesting dialogue. Your dad and I figured we would wait and see. See if you were ready to start a kindergarten program at the age of five and one month, or if you would benefit from waiting until you were six. Regardless, that was years away. Even as a toddler/preschooler, we were barraged with stories of what others had done with their children, and why we should follow the same path; start you “early,” wait an extra year—whatever was recommended was the absolute “best” plan, so we were told. As we had done with your older brother, Zakary, we poured into you our hopes and dreams for a future filled with wonder and exploration. Fast forward a few years and we discovered that, while you were quite inquisitive, you were also able to sit and listen well to your preschool teachers, and, by all accounts, ready to begin kindergarten in the fall of 2005. You thrived in school, loved learning and participating in everything that came your way, and were on track to be part of the Graduating Class of 2018…

Well, life changed. Drastically.

For the first few years after your injury, we were predominately focused on the rehabilitation part of your recovery. School took a place on the back burner. Whatever it would take to help you make the most gains possible, that’s where our attention remained. Nothing could sway us from giving you the best chance at coming back to us. However, your mounting medical challenges kept you returning to the hospital, for weeks, and sometimes months, at a time. Each hospitalization would hinder any positive gains, and, more often, would compound the growing list of challenges. All we could do was continue moving forward, keeping our eye on the goal of helping you achieve “more.” Eventually, the more whittled away. It’s ok if you remain wheelchair-bound, we reasoned, plenty of people lead successful lives without the use of their legs. The same reasoning was used when we thought of your use of your arms. And your ability to speak.

Slowly, painstakingly at times, the days, weeks, months and years passed, with increasing returns to the hospital, bringing us to late-summer 2017. A realization washed over us that this was supposed to be the start of your senior year of high school. That was not going to happen.

How could we make room in our hearts for all that you had missed out on and all that you would be missing from this school year (and beyond)? I can tell you this, it has not been a positive year for me, emotionally. I did not deal with any of it very well. I retreated from friends and social gatherings, I created a cocoon around myself, and I welcomed the quiet space to mourn it all. I “saw” you in every imaginable location; participating in sport teams, theater, show choir, even walking across the school parking lot with friends. Senior pictures, applying and being accepted to college, school dances, youth group events, plans for being a camp counselor, the list goes on and on. I kept a low profile on social media, as it was too painful to see what friends posted regarding their “seniors.”

Loveland High School graduation took place a few days ago. You were not there. Neither were we, nor our extended family. In fact, your dad and I secured extra nursing coverage and took a 24-hour leave from the city. As heartbreaking as missing out on this milestone with you was for us, your dad and I wish great things to all of the Graduating Class of 2018—push yourselves beyond your wildest dreams, find where your passions lie, and take advantage of every opportunity that comes your way.

Our beautiful son, Ethan, you don’t need to worry about us. Do you remember that feeling when you would dive into a pool, and make the descent to the bottom? Once you reached the bottom you would tap out with your hand, turn your body around, and push off with your feet, heading up to the surface of the water. Your dad and I have reached this bottom, and we are making our way back. We have taken measures to strengthen our health, lift our spirits, and find the joy in the tiniest of things. We are emerging from this much-needed period of sadness. We love you and will always take care of you, assuring that you are able to reach as high as possible.

With love and strength, always and forever,
Mom and Dad

Photo Galleries (3)

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Guestbook

July 19, 2018

Happy Birthday Ethan!

Jonah Pesner

July 19, 2018

Happy birthday Ethan!

Patti Levine

July 19, 2018

Happy 18th Birthday Ethan! love, The Smilg's

Jen & Larry Smilg

July 18, 2018

Happy Birthday Ethan!

Matthew Kraus