Special note: In honor of Mother’s Day 2018, we’re recycling this post that was originally published in 2012. This inspirational post is as relevant as when first written 6 years ago.
by Sue Friedman
We were late. The last hint of twilight faded and although we were close to home, I was nervous. It was already 9:30, way past Beau’s bedtime, and instead of being snug in bed we were still two blocks from home. By that time I was almost running, hurrying my son when he stopped.
“Mommy, what was that?” he pointed to a neighbor’s yard.
“C’mon Beau, we’re late,” I pleaded but he wouldn’t budge.
“No, Mommy, what is that?” he insisted, “It’s green!”
At 5 years old, Beau was in the habit of pointing out every pebble, plant, and piece of litter and dirt along the way. A walk around the block with him could turn into an hourlong adventure. But tonight we had already walked a couple of miles to the store and back; I was tired and still had work to do. Our sleepy Florida neighborhood was generally safe, but it was still a source of anxiety for me after dark.
I was anxious a lot. And certainly I wasn’t as patient as I used to be. Putting off parenting as I pursued my veterinary career, I was 31 when Beau was born. But it seemed I had waited too long to have the family I had dreamed of when I was diagnosed two years later with breast cancer. Before my diagnosis, I was at the peak of my veterinary career. My health had never been better, and I no reason to think my life would be forever changed by a cancer diagnosis. I had no advance warning that I had inherited a BRCA mutation and was at such high risk. My diagnosis was followed by two years of dealing with my cancer, initially with surgeries, then—when my cancer recurred—more treatment that included chemotherapy, and radiation. On May 15, 1998, after learning of my BRCA 2 mutation, I underwent a risk-reducing oophorectomy and hysterectomy at 35, abruptly ending my plan to have more children. A prophylactic mastectomy and reconstruction on my other breast followed. During treatment for the recurrence, my family relocated to Houston. All I could think about there was the time when I would finally be done and could reclaim my previous life and career.
Yet when I finished treatment and returned home, fear of another recurrence was my constant companion. It consumed almost every waking moment, sometimes leaving me frenzied to achieve all I hoped to do in a compressed moment of time. Trying to balance my veterinary career with my new role running FORCE, (back then a very new and small nonprofit organization), and still be there for my son and husband while battling constant anxiety was taking its toll. I was struggling to keep my head above water professionally and personally, and failing. Two years since returning home to Florida, after all the treatments and prophylactic steps I had taken to survive, I wasn’t really living. And my husband and son, the two people who needed me the most, shouldered much of the collateral damage from my unhappiness.
Tonight walking with Beau seemed no different. As I tried to hurry my son, I was oblivious to his world. I grabbed his hand and pulled him along.
“Beau, it’s probably just a piece of garbage!”
“Mommy it’s a green light!” he insisted. “YOU HAVE TO STOP!” Beau didn’t often defy me, and his insistence took my by surprise. There were so many things pressing down on me; yet, for one moment I considered what my son was saying. For the first time in a while I thought about things from his perspective. I took a breath and I stopped with him.
“I don’t see anything.”
“There it is again!”
I studied the darkness of our neighbor’s yard for a glimpse of Beau’s mysterious light. There. And there. What had been invisible a moment ago was suddenly revealed. A firefly, several, actually. Bright green flashes, blinking intermittently in the dark.
I was amazed. “I don’t believe it Beau, those are fireflies!” I told him about the fireflies in New York when I was a child. During my 11 years living in Florida never once had I seen a firefly here. The hurry for bedtime and my weariness now forgotten, we watched Nature’s lightshow together for the next 30 minutes.
The following evening we could hardly wait for dark. It didn’t take long for the show to begin. We chased after the flying lights, then caught one and studied it. It flashed and tickled in our hands.This firefly was different than others I had seen; the light came from its head. A beetle with glowing eyes! Later, the Internet informed us our flying friend was Pyrophorus, the only bioluminescent click beetle.
We chased the fireflies for the next few weeks, even relocating some to our own yard. I spent many happy moments reconnecting and sharing joyful times with Beau. How long it had been since I had felt that. That spring, along with the flowers and the fireflies, hope and happiness were emerging; emotions that I had suppressed since my recurrence. From then on, every May, watching for the fireflies became a sacred ritual shared between Beau and I.
Sometimes it’s the small moments that emerge from the large and scary events in life to define us. That night, seeing the world from my small son’s perspective opened me up to the joy and wonder I had been missing. Sometimes a tiny dose of joy reminds us how attainable it can be. Since my oophorectomy, May had been a time of grief for me. That spring night restored many gifts that cancer had taken and helped me to recapture and hold on to the connections that had made all my treatments worthwhile.
Several years later, I gave up my veterinary career to dedicate more attention to FORCE and my family. I still think of that night as a pivotal moment when I was reminded what was really important. I still get stressed and anxious and I still sometimes feel there is not enough time to accomplish all that I hope to in life. But I have gained more perspective-more ability to see the world through the eyes of a child.
Although I have heard the glowing beetles can be found here in Tampa, where we moved eight years ago, I have yet to see them. But it is May, and I haven’t looked for over a year. Tonight I will make time to see if I can find one.Tags: brca, BRCA 1, BRCA 2, brca research, brca testing, BRCA1, BRCA2, breast cancer, BSO, facingourrisk, FORCE, gene testing, genetics, HBOC, hereditary cancer, oophorectomy, previvor;pre-vivor;high-risk;breast cancer risk;ovarian, prophylactic mastectomy, prophylactic surgery, survivor