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A Small Quiet Room

Most things will be okay eventually, but not everything will be. Sometimes you’ll put up a good fight and lose. Sometimes you’ll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room. Cheryl Strayed

“We are going to get that tumor removed from your head, and you are going to be just fine.”

As we raced through the night to the children’s hospital across the river, these are the words I repeated to Jimmy over and over again like a mantra. “We are going to get that tumor removed from your head, and you are going to be just fine.” Dan drove swiftly, deftly maneuvering around cars on the glistening, rain-soaked Portland streets. Jimmy and I were curled up in the back seat, no space between us, his body tucked under my right arm. We were heading to meet the pediatric neurosurgeon who would be removing the malignant tumor from my thirteen-year-old son’s brain.

I was desperate to reassure Jimmy, to reassure myself, but I also believed what I was saying about my power to control the situation. With the best surgeon, the right information, the optimal treatment, I thought I could get the outcome I wanted by sheer will alone. I didn’t yet know that life isn’t fair, that making careful decisions isn’t enough, that sometimes kids die, despite their parents’ Herculean efforts to protect them.

This uncertain pandemic time reminds me of Jimmy’s eight-year cancer odyssey. The unpredictability of our days, the constant worry, the fear, the lack of control. Not knowing when I wake up if a seemingly good day will turn bleak or even terrifying. Headaches, fevers  … no longer benign maladies but worrisome indicators of a more serious illness or a return of the cancer we thought was gone forever. We spent those years living with ambiguity, desperate for something to hang on to, only to realize again and again that the only option was to embrace the life we had.

When we lived in the cancer war zone, we were always on edge. Poised to defend our beloved son against threats, both seen and unseen. Ready to battle anything and anyone that might try to harm him. Yet what the universe taught me over and over is how little control we really have in this life. What will be, will be. That survival depends on doing the best you can with the information you have, redefining and finding hope each time you get knocked down and letting go of the rest. Lessons learned, taught by my children.

We learned to love ordinary words like “stable,” “normal” and “okay.” They meant that we could enjoy our time together free from worry about the next 90-day MRI scan, that Jimmy could get discharged from the hospital, that he felt well enough to go to school.

I discovered that the simplest prayers were the most comforting, just as Anne Lamott says. “Help, help, help.” And “thank you, thank you, thank you.” Grateful for small miracles – the absence of pain, an appetite, more time, still breathing. Blessings were everywhere once I started looking for them.

Try as I might, I couldn’t influence what showed up on Jimmy’s quarterly MRIs. Signs from the universe – ladybugs and dragonflies, magical thinking, wishes, prayers, negotiations with the unseen … nothing worked. The results were good when they were good and scary when they weren’t. Jimmy taught me to breathe deeply between scans instead of obsessing on the possibilities.

During Jimmy’s cancer odyssey, joy and laughter abounded. In conversations with the doctors and nurses we came to love, flowing down the stairs from the bonus room where Jimmy and his friends played pool and video games, bursting from the dance routines and silly videos Molly created with her friends. I learned to slow down, take a breath and soak these moments in instead of paying half attention or missing them all together.

We discovered we had endurance and strength beyond what we could have imagined. Inspired by Jimmy, motivated by Molly, we learned to keep going far longer than what we thought was possible. An infection requiring a week long hospital stay or the urgent need for six weeks of daily radiation treatments could easily derail an already overloaded schedule. Yet we managed to get done what needed to get done, and stay committed to making sure both Jimmy and Molly had as normal a life as possible.

We held together as a family when so many others splinter apart. We fought and snapped and lost our tempers, often over small infractions and unintended criticism, but we never broke. We refused to remain quiet, live in the shadows, focus on the illness, give up, walk away. Embraced by the people who love us, we kept going, even on the hardest days. Putting one foot in front of the other, continuing to breath, finding a way forward. We focused on the day at hand and tried not to spend time imagining what could happen or when.

Life will never be shiny in the same way again once one of the people you love most is diagnosed with or dies from a terminal illness, but you can still find your way back to sweetness and beauty, to grace and laughter. To be in the moment. To appreciate the quiet days at home. To redefine “okay” as so much more than adequate. To focus on who’s here right now, instead of worrying about what might be lurking around the corner. To live in the light, knowing that the darkness is all around you, but that you are safe and warm and together, and that for now, in this moment, that’s enough.

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