Photo by Ranier Ridao on Unsplash
By Jen DeGregorio
In 2019, my goal was to get really good at one thing. Maybe I would learn French, or improve my knitting skills. As resolutions often go, I didn’t do either of those things. However, when the summer came, I decided to take a huge career leap.
After years of doing freelance PR and marketing for various local non-profits, I joined The ChadTough Foundation as the Director of Communications. In my new position, I’d be interviewing families that have had or currently have a child fighting pediatric brain cancer. It was scary and exciting to have an opportunity to honor each child fighting such a horrible disease, but also to continue to raise awareness and maybe even effect real change.
Six years ago, like many other people across the country, I followed Chad Carr’s 14-month journey through his mother’s voice on social media. Tammi Carr articulated her profound heartache in such a raw and authentic way; it made people want to step up and do something. To this day, it was one of the most powerful things I’ve ever witnessed, and her voice helped pave the way for major advances in the research of brain cancer.
I thought that, having witnessed Chad’s journey, I would be prepared to interact with other families going through the same thing. I realize now that when it comes to the impending loss of a child, each story is its own unique nightmare.
My first interview was over the phone with a mother from northern California named Chrissy Rodart. I spent hours preparing for our call by scouring her social media. I learned that her five-year-old son Wyatt had recently been diagnosed with an inoperable brain tumor. While the prognosis was dire, Chrissy was determined to do everything in her power to help Wyatt and ensure her family lived each day to its fullest, enjoying every second they had together.
When our conversation began, she walked me through Wyatt’s diagnosis and treatment plan. The family would be traveling to Michigan every nine weeks for a clinical trial at the University of Michigan. I learned from our talk that Chrissy was a teacher, that she was planning numerous family trips and birthday parties, and highly involved with her older child’s extracurricular activities, all while being told her youngest son had only a matter of months to live.
She was strong and determined as we spoke, ready to do whatever she had to do to save her child. She took deep breaths and stayed focussed on the facts. It wasn’t until she began to talk about Wyatt’s older brother and the deep bond the two shared that she broke down. Then I broke down, too. It took us some time to get our composure back. We were discussing something so heartbreaking that there was no point in trying to hide the pain.
Shortly after, I spoke with a woman from Ohio named Lisa Taylor who had lost her son Charlie the year before. As a single mother, she adopted Charlie from infancy. For five blissful years, Charlie was her entire world. And then he was diagnosed with brain cancer. Together, the two fought the disease for 12 months before Charlie succumbed.
When I spoke with Lisa, she was grateful for the opportunity to talk about her son. She was happy to send me pictures and tell me stories about the things they did together. That was a profound moment for me, realizing just how much someone going through grief still wants to talk about and remember their loved one.
By now, I’ve spoken to about a dozen mothers who have either lost a child to brain cancer or have a child currently fighting the battle. In every single case, I’ve been overwhelmingly awed by their strength. I often think of what I might be like if my child was faced with cancer. When I do this, I’m hit with such a wave of terror that I feel certain I wouldn’t even be able to get out of bed. They tell me you don’t know your own strength until you’re not given a choice; I hope that I’ll never have to know.
Now that we’ve entered a new decade, someone recently asked me what my goals are for 2020. Thinking about it, I realized that the way I look at life has changed in the last six months. While I’d still like to develop a skill (maybe take my writing to the next level), it feels more important to me to wake up each day with gratitude. These warrior mothers I’ve gotten to know have shown me how important it is to be present and love intensely — to live each day to its absolute fullest. I will honor them by doing just that.
In addition to serving The ChadTough Foundation as the Director of Communications, Jen DeGregorio manages PR/marketing and events for several non-profits across Washtenaw County. She began her career in newspapers in 1995 as a means to cover college expenses. After completing her degree at the University of Michigan-Dearborn in English, she continued to build a career in advertising with the Ann Arbor News.
She was one of the first hires at AnnArbor.com and became an integral part of the management team. In 2012, Jen decided to start her own businesses, with a focus on helping small businesses and non-profits.
She splits her time between her home in Dexter, Mi and an apartment in NYC where her husband has worked for almost a decade.