The Pathway Back

The opposite of grief is not joy or happiness or laughter. It is love. It is love. It is love. Akif Kichloo

I couldn’t meet anyone’s eyes the first time we returned to the pediatric neuro-oncology clinic at Doernbecher Children’s Hospital after Jimmy’s brain cancer recurred. As the aide led us down the brightly decorated hallway to an examination room, I stared straight ahead, hoping we wouldn’t see a family we recognized or a nurse we knew. The six new tumors on Jimmy’s latest MRI had shown up a year after we had thought he was cured, and I was shattered.

The day after we got this news from a devastated Dr. Nicholson and a teary Dr. Marquez, I’d launched into action, collecting second opinions, researching treatment options and coordinating conversations with Dr. Nicholson so that we could choose the very best path forward. But inside, I felt humiliated, embarrassed, ashamed. I had failed my son. Instead of insuring he would have a long, full life, I had let the monster back into his brain. Smug and arrogant about our expected success, I had surrounded myself with parents whose children had remained cancer free. And now I was alone, unable to meet my own eyes in the mirror.

Three hundred fifty children a year are diagnosed in the United States with Jimmy’s form of pediatric brain cancer. If the initial protocol fails, there are a number of treatment options to try but no clear optimal choice. The more I researched and the more I talked to other pediatric neuro-oncologists, the more I realized how much I needed the perspective of those in the trenches. So late one night, I crafted a post for the parents of kids with brain tumors support group I’d joined two years earlier. Typing the words “Jimmy has relapsed” was agonizing, but moments after the post went live, responses began appearing. Anne, Alicia, Nancy, Marguerite, Rhonda. Like lights in the darkness, they shared their children’s treatment protocols, lists of side effects, doctors they consulted, outcomes they’d achieved. They offered hope, informed advice, connection. Most importantly, they made me realize that Jimmy’s recurrence wasn’t my fault. I wasn’t a doctor, neurobiologist or clinical trial researcher. I was a mom. A mom who had done her best to leave no perspective ignored and no treatment option unexplored. But as our beloved friend and physician, Howard, had pointed out just after the new growth lit up on Jimmy’s scan, “It only takes one cell, Margo …”

Over the next six years, as Jimmy endured one drug cocktail after another, I clung hard to those kind, loving women. I continued to believe that the research I did; the clinical trials I found; the third, fourth, fifth opinions I insisted on helped extend Jimmy’s life, but I stopped holding myself accountable for curing him. Seeing how hard every one of these mothers was fighting for her child’s life, helped me realize that love and determination weren’t enough to stop the fast moving freight train of malignant cells in Jimmy’s brain. I also began to understand why connecting with other terrified or grieving parents might just be the best way to navigate the terrifying outcome I was facing.

an image of two middle aged women hugging and comforting each otherLosing one of your essential people strips away the need for small talk and pleasantries. Politics, religion, geography become less consequential. Instead, you bond over your brokenness and your search for a way to reassemble the pieces of your life without offering platitudes or false promises of time as healer. It’s as if the image in the mirror has extended a hand and reassured you that you’re no longer alone.

Until I created Salt Water, I didn’t understand how many ways our beloveds can die or how complicated the connections can be. Ex-husband. Stepdaughter. Grandmother who raised you. Former brother-in-law. First love. Best friend from high school. Favorite boss. Loss, like love, comes in all shapes and sizes. I learned to stop judging, comparing or ranking other people’s grief and to respect those who made space for everyone else’s losses, whether human, furred or feathered. Some deaths are more agonizing than others, but minimizing another person’s pain helps neither person heal.

Deep down inside each of us, there’s a place where trauma, fragility and grief become wisdom. It’s the pathway back to life and the incentive to help others heal. A spot where strength is born out of weakness, joy emerges from sorrow and resilience rises from vulnerability. A place where even the shattered are whole and unbroken. What helps us return to the land of the living are the brave, shiny souls who have walked through fire and turned back to help those coming behind them. It is love. It is love. It is love.

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