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


  1. Always and forever with you. You are the most incredible parents and grateful to call you my kids. LOVE YOU������

  2. Thank you for the update. You and your family are in my thoughts everyday.


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