What a Difference a Year Makes – Especially this Pivotal Year

What a Difference a Year Makes – Especially this Pivotal Year

(v) to turn or rotate, like a hinge.
(v) to change your opinions, statements, decisions, etc. so that they are different from what they were before
(n) a person or thing that plays a central part in an activity or organization

Here we are, seven years later, changed in so many ways. We find ourselves in a unique position this year, a pivotal one where we simultaneously look backward and forward. Experiences we enjoyed a year ago are not possible at this moment. Our country and world look a lot different today than they did 12 months ago. Gratitude fills our souls in reflection of this past year. We are thankful to so many who have kept us in their hearts and prayers, who check in on us, who assist Ethan financially.

College Graduations
Last spring brought two family graduations—Zakary from Washington University in St. Louis, and our nephew, Patrick, from the University of Southern California. We gathered with the family and celebrated these momentous occasions, not realizing that six months later we would say a sad farewell to Alexia’s dad. As well, we could feel the presence of Alexia’s sister, Suzanne, knowing how much she would be beaming with pride to see her son and her nephew graduate within a week of one another. Graduation events looked a lot different this year, and our hearts felt broken with so many who did not get to experience these events as originally anticipated.

Family-of-four trip to Hawaii June 2019
Years before moving to Cincinnati, and before having children, we were fortunate to vacation several times in Hawaii. It was much closer to California where we previously lived, and we were fortunate to have access to accommodations on Maui. For years we talked about taking the kids to our “favorite playground” and even flagged a potential date as a graduation trip. Due to Ethan’s injuries, that trip could not happen after Zakary’s high school graduation, so we revisited the idea for his college graduation. Taking Zak and Elyse to a place that held so much meaning to us was wonderful, and bittersweet since we could not include Ethan, and we were comforted knowing that Ethan had experienced the beauty and splendor of the islands when he was 10. As with so many things, travel looks vastly different this year, and we are grateful for the experiences we had creating these memories last year.

Losing Alexia’s Dad
In December 2019, we lost Alexia’s father, William Brody. Dad was extremely smart, witty, and humble. He was our go-to person for anything medical and a sounding board regarding Ethan’s care. He was impressed with the excellent attention Ethan received at Cincinnati Children’s Hospital Medical Center, even googling a few of Ethan’s doctors on occasion to read about their areas of expertise. As a Cardiologist himself, he knew exactly what was happening in his body as he struggled with congestive heart failure, and still managed to direct his path until the end. The last 18 months of his life were lived on a high: a much-anticipated family reunion in New York City, where members of his family gathered (for some it was the first time meeting); he witnessed two grandsons graduate from college; and he led a Passover seder! We miss him every day, we speak of him often, and we wonder what he would have thought about our current global situation with the pandemic.

What phenomenal times we are living in—staying home, working, watching, wondering. Receiving updates that seem to change from one moment to the next. During the pandemic of 1918, how did people react and behave that helped guide them through? How can we all make the best decisions that will preserve life and protect the vulnerable? I so wish I could talk with my Dad and bounce these ideas off him; he was always striving for knowledge and would have been all over this. Recognizing our lives had already changed so significantly seven years ago, we were familiar with feeling a lack of control and stability. We have been lucky to maintain all of Ethan’s nursing team, who continue to treat him with the utmost love and professionalism.

Losing Sissy
In what was to be her last Yom Kippur Sermon, Rabbi Sissy Coran taught us amazing lessons. She shared with us the importance of vulnerability—taking off the mask, exposing our true selves, and searching for the best version of ourselves. These lessons, and so many others, will remain imprinted on my heart. Sissy was my friend before she became my rabbi. We shared many beautiful experiences before Ethan’s accident, and then she remained steadfastly by our sides for all these years—as our friend, as a mother of one of Ethan’s friends, as a guide, as a rabbi. We talked at length about the unknowns, we cried, we lived in the moment together. She continues to teach us about embracing vulnerability and stepping into it, rather than running away. Her memory and guidance will always be for a blessing.

National Unrest and Reset
As we watch the events unfolding throughout our city and around the country, we are listening to those personally impacted by systemic racism and we are learning how to be part of the solution. There are so many conversations and steps to be taken, and it is important to move forward. From Rabbi Tarfon in Pirke Avot 2:21 (Ethical Teachings) we hear the wise words, “It is not your responsibility to finish the work of perfecting the world, but you are not free to desist from it either.” We can be so much better, the time is now, let’s get going.

Ethan still pushes the boundaries of staying out of the hospital—we just crossed three years without an emergency hospitalization—and we all recognize how much more living we do when outside those walls. Along with all the other schools, Ethan’s school shut down in mid-March. His summer vacation came early this year and he has spent most days outside enjoying the fresh air within our screened porch (without the hassle of bugs, weather, or too much sun exposure), listening to the sounds of nature, music, and audiobooks. His teachers reached out with weekly check-in phone calls and ZOOM meet-ups—much appreciated! Who knows what the next school year will look like, and we hope that Ethan is able to safely return to his school program that offers so many therapies and brain stimulation.

Living with a brain injured family member is hard, messy, and a lot more than we can truly describe. We do our best to keep ourselves healthy and strong so we can manage Ethan’s daily needs. In whatever capacity you continue to keep up with our journey, thank you for being with us. It makes things less lonely.

***Thanks to the generosity of Children’s Hospital Starshine Group, we took some family photos last year. While a lot has changed these last seven years, we are still a family of five with a lot of love to share.