"Who will take care of me if you die?" Caroline Wright's oldest son asked. Then her new book "spilled out of me," she writes in a first-person essay.

By Caroline Wright
August 23, 2019

PHOTO: ADAIR FREEMAN RUTLEDGE

Caroline Wright is a 35-year-old cook and author who lives in Seattle with her husband Garth and their two sons, Henry and Theodore. Inspired by her terminal brain cancer diagnosis in February 2017, she wrote a new children’s book, Lasting Love, to help kids cope with the loss of a parent.

My role as Mom to two little, sensitive boys was already one of emotional translation: I read their faces and reflected what was inside their hearts, hoping to smooth out the wrinkles of confusion and emotional development. Ever since their births, I keenly understood that being Mom to them was to make them feel safe and secure, to give them fertile ground from which to grow. But when I was diagnosed with a rare and aggressive brain cancer in the winter before their second and fifth birthdays in 2017, the soil where their roots had begun to sprawl suffered a devastating earthquake.

“The median survival rate for glioblastoma is 12 to 15 months,” my surgeon said to the three of us — my husband, mom and I — while I sat on paper in his treatment room, the staples from my skull in a bag next to me on the table. His previously friendly nurse practitioner who had joked with me about post-op hairstyles leaned against the wall in the corner, facing away from us as we all began to cry.

I didn’t imagine those words at all.

The optimist in me, the one I felt wither the moment “glioblastoma” was first uttered, had prevented me from considering it. I was 32 and living my dream. I’d married the first love of my life, whom I’d met during college in Paris. We had two wild boys together. I wrote books from our yellow cottage on a hill in Seattle in my dream job as a cook, writer and cookbook author. I had so many plans, so much to look forward to.

This was our 2016 Christmas card photo, which was sent out just months before my diagnosis. It was the last family photos of ours when I had hair.

This was our 2016 Christmas card photo, which was sent out just months before my diagnosis. It was the last family photos of ours when I had hair. PHOTO: ADAIR FREEMAN RUTLEDGE

I remembered, though, my first tinge of fear from the ICU, a moment in which I realized I wasn’t special and that nice people die — something I hadn’t allowed myself to believe until then. I read it on the face of my night nurse after saying I would bring her cookies, when I thought we were friends but realized she was just doing her job, trying to make a suffering patient comfortable after brain surgery.

On the ride home from the hospital that day, I imagined what I would say to my boys. I knew I had to say something, to do something, to create some kind of safety for them. I had to help them understand what they could about my diagnosis, to convince them (and my husband Garth) that their lives wouldn’t fall apart if I died. The trick was that I had to believe it, too.

We told the boys — mostly my oldest son, now 6½-years-old, as our younger boy, now 3½-years-old, was still a babbling toddler — everything, lifted from a parenting book given to us by a friend just after I learned the results of my first MRI. How to Help Children Through a Parent’s Serious Illness by Kathleen McCue shared that the truth, though scary, protects the bond between parent and child, while any attempt to hide or augment it can destroy that same bond without the hope of resolution after the parent dies. That was how I came to search for beautiful truths everywhere I could, so I could share them with my sons. Part of me knew that if I only had a year to live and any hope of settling into their relentlessly evolving memories, I wanted them to see me fight as I had lived all my years, especially those spent with them: with sincere gratitude and in constant search of joy.

 

At the pre-op appointment two days before my brain surgery, the nurse practitioner told me that the team would shave part of my head in surgery prep. Instead, I went straight to my hairstylist to get my head shaved alongside Garth and Henry.

At the pre-op appointment two days before my brain surgery, the nurse practitioner told me that the team would shave part of my head in surgery prep. Instead, I went straight to my hairstylist to get my head shaved alongside Garth and Henry. PHOTO: ADAIR FREEMAN RUTLEDGE

 

I was feeling in control of my hair loss before surgery and bringing Henry into that experience in a positive way, as opposed to waiting for the doctors to shave my head or losing hair because of chemotherapy.

I was feeling in control of my hair loss before surgery and bringing Henry into that experience in a positive way, as opposed to waiting for the doctors to shave my head or losing hair because of chemotherapy. PHOTO: ADAIR FREEMAN RUTLEDGE

My days were devoted to going through the motions of a sick person — maintaining a weekly schedule of blood draws, daily radiation appointments, going to bed after swallowing a series of pills that asked my body to kill or quiet itself in a specific order — while attempting to live out a vibrant life to its end. My spirit was actively searching for a similar strength and security I was attempting to create for my kids. I knew that no matter what I did or believed, whether I survived my diagnosis or not was out of my control. The only way to remain in a hopeful and positive place, as was my usual landscape, was to orient myself in relation to my sons, like a needle finding due north on a compass.

I felt split in two, holding two opposing thoughts with equal weight in my mind with every action: one in which I died, the other in which I lived. It was how I maintained a responsible relationship with hope because it was being ingested by my oldest son.

 

My dear friend Dan took me wig shopping during his visit to focus on the funny perks of being a bald lady.

My dear friend Dan took me wig shopping during his visit to focus on the funny perks of being a bald lady. PHOTO: ADAIR FREEMAN RUTLEDGE

The only release from the tension between living and dying was to stay present, to focus on the needs of my family. I cooked for them as I always had, eating a strange new diet that abandoned any hopes or plans for my beloved career as a cookbook author, of my former life. I wrote, finding solace in a space where my words spilled out onto vast expanses of imagination and possibility, seeding my hopeful landscape with language that bloomed stories, answers to questions my sons hadn’t yet formed. My love for my boys, for my motherhood, shifted how I saw my cancer from within. I had enacted a kind of love for myself and my family that felt far bigger than my body or my cancer. Love, in all its great power, became the answer to all the unanswerable questions.

“Who will take care of me if you die?” I remember my son Henry asking one day at the breakfast table.

“…The same people if I live,” I responded, listing relatives and close friends. “Your life will be filled with love, mine and others, whether it comes from my body or not.”

 

During my treatment, Henry and I found hope everywhere, even on our walks home from preschool.

During my treatment, Henry and I found hope everywhere, even on our walks home from preschool. PHOTO: ADAIR FREEMAN RUTLEDGE

It was from this conversation that I began to imagine love as a tangible, inextinguishable force. After all, I knew that energy cannot be created nor destroyed, and I was living it. It was from this conversation that I was inspired to write yet another book for my boys, a children’s book about a creature that came to me one night in a dream. It spilled out of me one sleepless night in its entirety. Writing it down, seeing the creature materialize over tea with my friend, illustrator Willow Heath, gave me peace and freedom. I knew that I had made a concrete representation of the loving philosophy I had only otherwise held in my heart and spoken to my boys — something that couldn’t shift or evaporate over time. With the help of Rodale Kids books from Random House, those pages turned into a book titled Lasting Love.

 

Lasting Love cover

Lasting Love cover PHOTO: RANDOM HOUSE CHILDREN’S BOOKS

A few months ago I tried to read an advance copy of it to Henry, who could now read it to himself if he chose, but it was something like torture for both of us, not quite the picture I had in my mind; for us, the story is too real. I read it only once, and we both cried silently through it. I said to him as I closed the book, “You know this is only a story right now, right, and not our story?” And then I just hugged him and told him I would always love him, like I had so many times before. Our feet hit the ground again and I went to make dinner. As I shuffled to the kitchen, it occurred to me the most beautiful part of the book remains unwritten: what this book will mean to the future versions of ourselves, the symbol it has created for us and other families like ours. The thought of a grown Henry and a wrinkled version of me, crying over it again with gratitude, is the most comforting thought of all.

 

This photo was taken after my husband Garth and I renewed our vows in front of our friends and family who supported us, celebrating life together rather than worrying about my death.

This photo was taken after my husband Garth and I renewed our vows in front of our friends and family who supported us, celebrating life together rather than worrying about my death. PHOTO: ADAIR FREEMAN RUTLEDGE

Now, midway through my second year that surprised my doctors with success, my scans remain clean and the word “miracle” has slipped out of my doctor’s mouth more than once. Hope abounds, though I remain as focused as I was during treatment. I take nothing for granted.

Lasting Love is out today, a new kind of waking dream nested in a series, each as unbelievable as the next, held within the miracle of my being alive to read it.

For more from Caroline Wright, visit her website here.

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