MOVING ON with a BIGGER HEART

BY VANESSA B. IRA

After over a quarter of a century of performing various work with Exceptional Parent Magazine, for the past decade editing and writing, I am moving on. The gold watch I take with me is the awesome blessing of having witnessed or read one story after another of individuals with special needs, their families, caregivers and advocates in the act of giving. They all gave more like no other people I've known in this world.

Just recently, after I emailed one of my favorite regular EP writers, Shelly Huhtanen, about my plans to explore new adventures in life, she wrote back, “Here is my column for the month. I am so saddened by the fact that you are leaving. I have never met you in person, but I feel like I know you… Thank you for always allowing me to write and submit a column that reflected how I was feeling at the time. Writing is very therapeutic for me and I appreciate the opportunity of sharing my thoughts and lessons with others.”

Here is a mother of a teenage son with autism, Broden, who’s had to deal with the constant change and stress that comes with being a Military spouse. Yet, she’s never missed a deadline. She also never misses a day of giving the best life possible for her two sons and husband, as chronicled in her articles – articles that, she confessed, have given her the opportunity to share her thoughts and lessons with others. See what I mean by how people in this community give so much of themselves?

About four years ago, EP Magazine put Luke Rosen's daughter, Susannah, on the cover to help bring attention to the rare and degenerative pediatric disorder KIF1A (she was diagnosed in 2016). If you knew the story of Susannah and her crusader "Dadvocate", J you'd know their story had to be told. For me, that was all the "reward" needed – I got to work with Luke and his family to help spread the word. Imagine my joy when I received this heartfelt message from him:

"Remember that the happiest people are not those getting more, but those giving more." ~ H. Jackson Brown, Jr.

“It seems I owe you a bit more than a giant thank you for helping us raise awareness for Susannah's Disease. Yesterday we heard that Early Intervention rejected Susannah’s application for expensive braces that the city is to pay for. We were floored, so were the doctors and therapists. I forwarded them the piece you so kindly did with the title ‘safety for a child with severe movement disorder’ and the caption under a picture of her braces. They amended their response immediately and she was approved without hesitation. They just needed to hear the story, or read it. Again, you have done so much for us.”

“You have done so much for us.” Really? No, it’s the other way around! A former actor, Luke has been devoting most of his time, working tirelessly as founder and head of KIF1A.org, a nonprofit organization seeking to fund research for KIF1A. Recently, I read that Luke has stage 3 colon cancer. Yet again, there he was, relating his latest challenges with listeners of the podcast Once Upon a Gene, talking about his recent medical difficulties, down to his raw thoughts and feelings about what happens when a caregiver dies. Giving.

Through my work as managing editor for EP Magazine, I’ve been fortunate to follow the sage advice my father once gave me – “find something you like to do that will make you want to jump out of bed and eagerly face the world each morning.”

My part through it all has been relatively easy, working with hundreds of authors of extraordinary lives. The ones who gave, at times, even as they were hurting. Because of them, I am moving on from EP with a bigger heart. Thank you. It's been the privilege of a lifetime knowing and working with all of you! •

ABOUT THE AUTHOR:

Vanessa B. Ira has been a member of the Exceptional Parent family for more than half of the magazine's 50 years of publication. She is currently EP's Managing Editor. Previously, she oversaw and managed EP's very first website, served as project manager for several successful healthcare webinars, and contributed to various business development efforts. She previously wrote a nostalgic piece, A Behind-the-Scenes Journey Through Half of EP's 50 Years, for EP's Anniversary edition: reader.mediawiremobile.com/epmagazine/issues/207207/viewer?page=35