WE'RE JUST VISITING
Love, fear, and the slow opening of the heart. Plus: writing workshop on 4/21!
Thank you for reading and supporting Resilience. After the essay, please find info on the next Writing Workshop for Paid Subscribers on Sunday, April 21st 3-4pm EST, as well as an opportunity to help pediatric brain cancer patients and their families. Thanks again!
Years ago, when my son, Lou was first hospitalized for cancer, we shared a room with a mother and her ten-year-old daughter, who braided plastic lanyards all day. She seemed to have an endless supply of florescent colored string. As she made necklaces and key chains, her mother proudly told me that her daughter had survived twenty-four surgeries; they had been in and out of the hospital every year of her life.
This terrified me.
Instead of opening my heart, I quickly closed it up. I wanted to get as far away from these people and their misfortunes as I could, which wasn’t easy as we were sharing what felt like the world’s tiniest room.
“Can you please move us?” I begged Jean-Marie, the nurse manager.
Jean-Marie had a fake tan but smelled like Banana Boat suntan lotion. I knew she was coming when the bleach-filled halls suddenly reeked of coconut. “Carol and Becky are regulars, they practically live here,” she said in her Jersey accent. That’s just the problem, I wanted to say. “You’ll learn a lot from them,” she insisted, pushing past me with a stack of clean linens.
But I didn’t want to learn from Carol and Becky. I didn’t want anything to do with them! Peacefully entwined on the recliner chair, they reminded me of a Madonna and Child, back when babies were painted as miniature adults, all arms and legs in their mother’s laps. I was afraid if I got too close or agreed to make a lanyard with them, Lou and I would be braided into their nightmare for good.
“We’re just visiting,” I said under my breath, wiping down the crib, the table, the plastic toys, anything to keep busy, to protect my broken heart.
Months later, when our ordeal had finally come to an end, Jean-Marie and the nurses threw a party in honor of our departure. While I hungrily waited for the discharge papers, Megan, the music therapist serenaded us one last time with “The Lion Sleeps Tonight.” There was a parade in the hallway, complete with the hospital clown and therapy dog. Becky gave me a handful of lanyards, and Carol joked, “It’s one of the world’s great mysteries why it takes all day to be discharged from a hospital!” When Jean-Marie finally showed up with the papers, I couldn’t sign fast enough at the X. While I was of course grateful to be leaving with my child declared cancer-free, I wanted to get home as quickly as possible, to my husband, to Lou’s twin, West. I wanted to shower, I didn’t want Jean-Marie to hug me, I didn’t want to smell like coconuts.
I wanted this all to be over.
Yet, during the four years of Lou’s remission, I often thought of Carol and Becky. I had no idea how to be out in the world with parents suffering over normal things, like whether or not to give their child antibiotics for an ear infection, or if Mommy and Me was sold out at the Y. At the playground, at the pre-school, I was afraid if I opened my mouth, a-whim-bah-whey would come out, or some nonsensical story about coconuts and lanyards.
I realized I had missed an opportunity with Carol and Becky. Would it have killed me to have made a lanyard or two? At the time it had felt like a solid yes. But now, I wished I had someone to call.
Those moments at the park, at the pre-school, I could feel my face flush with feelings I could not name. I longed for a handful of plastic string to braid a lifeline back to Carol and Becky. I hoped with my whole heart that they were okay, too.
When Lou was six, his cancer returned, and we were plucked from the park and back to the hospital so fast I didn’t even pack a suitcase. I half expected to find Carol and Becky back in Room 906, but the hospital had been renovated, we all had our own rooms now. How I would have killed for that luxury way back when! Yet, I missed the companionship.
This time around, I was the veteran Cancer Mom, peacefully enmeshed with her child, our reality. While I hated that Lou had relapsed, coming back to the ninth floor felt like a homecoming, though it wasn’t the same without Jean-Marie. I could smell the new moms on the hall like I once smelled coconuts amidst the bleach. I watched them stalk the nurses’ station, asking the harried new nurse manager for ear plugs, housekeeping, bleach wipes, anything to keep moving. I knew the new moms stayed up nights Googling their child’s diagnosis, as if they alone were going to find a cure. And I knew I perplexed them, with my calm, my surrender.
“Are you a yoga teacher or something?” the mom with the running sneakers asked me, eyeing me suspiciously, not wanting to get too close.
One night, the beeps woke me up, and I took a walk in the hallway. Sneaker Mom was in an oversized armchair by the window, crying. I asked her if she was okay. “Get the fuck away from me!” she screamed. I knew her heart was closed, as mine had once been, too. Standing there, I felt an imaginary cord, like a braided lanyard, connecting my heart to hers. Her screaming turned to tears, to a whisper. I extended my hand and she pulled me down into the chair beside her. I could feel her pulse in my palm, her heart synching up with mine. We held each other as the sun rose pink and yellow, florescent like Becky’s plastic strings.
Not Mother and Child, but Mother and Mother.
She smelled like coconuts.
A MEDITATION
May I open my heart. May I not be afraid. May I forgive myself for the times my heart was closed.
Think of a time you were too scared to open your heart. Be gentle with yourself. It’s never too late to try again. Feel free to share some thoughts or a snippet of your story in the comments. I love reading your words, too.
Much love. Tend to your hearts and others.
Alexa xx
Friends, last month’s writing workshop for paid subscribers was such a treat! I loved meeting a handful of you. We did a brief grounding mediation, wrote from one of my favorite prompts, and shared our work. I love teaching, and I urge you to join us on April 21st from 3-4pm EST. I will send the Zoom link closer to.
Consider upgrading to a paid subscription to join! Share with friends, or give a gift subscription to a friend who might benefit. (If you would like to join but funds are tight right now, email me alexa@alexawilding.com and I’ll gift you a paid subscription, believe me, I get it.)
Thank you for supporting my work in whatever way works for you. I love writing to you every week and reading your comments and messages. I look forward to writing together, too. Email me with questions or requests!
xx Alexa
HELP KIDS WITH BRAIN CANCER
PS. When I share these stories, I think it’s important to share ways to help families who have been in the same boat. Consider making a contribution to our beloved Making Headway Foundation, an organization that supports pediatric brain and spinal cord cancer patients, their families, and much needed research and advancements in treatment and care. Thank you!
I relate too much to your experience. My son is disabled and has countless hospitalizations behind him. Back when he was a small boy I was encouraged to join a support group for parents of children with his disability - Spina Bifida. The stories of children who were doing better than my son upset me, the stories of those doing worse even more so. I couldn’t connect with these mothers, didn’t want to connect with them, and much later wished that I had because no one understands like someone who is going through the same experience. That was many years ago, he turned 53 last fall. The challenges continue, the hospitalizations occur with less regularity and it’s been a difficult but such a rewarding journey. Thank you for your beautiful and inspiring essay.
So freaking visceral and beautiful, your words💕💕💕