Growth: A Mother, Her Son, and the Brain Tumor They Survived by Karen DeBonis, Excerpt
Editorial Review
“Exquisite vulnerability. DeBonis’s grounded perspective on personal growth helps readers see their own limitations with compassion.”
Rain Taxi Review
Summary:
Growth: A Mother, Her Son, and the Brain Tumor They Survived is a memoir about the collision of medical gaslighting and a mother’s people-pleasing, shattering her expectations of motherhood and threatening the survival of her young son.
Author’s note: This excerpt takes place toward the end of the three-year medical mystery of my son’s decline and the beginning of a month’s-long game of diagnostic dartboard.
Excerpt:
We left the exam room and moved to the child neurologist’s adjacent office. A floor lamp warmly lit the small space, and a dish of dried lavender on her desk released its pungent sweetness. Matthew collapsed into an overstuffed chair, immediately becoming engrossed in his video game. I sank in the other chair so deeply that I felt like a little kid. Dr. Lunig sat behind her throne. She adjusted her round glasses. A small clock on the wall ticked.
“There is definitely something wrong with your son,” she said. “I could see it as soon as you came in. It isn’t like an eleven-year-old boy not to have an interest in what his mom and a doctor are saying about him.”
At first, I felt nothing. Then it hit me. Thank God. She believes me. Then it hit from behind. But what is “definitely wrong?” Relief and dread fought for control until dread made a grab for the jugular.
“It’s probably muscular dystrophy, but don’t worry, it’s not the bad kind—he won’t be in a wheelchair.”
Her announcement flowed so quickly from her lips that it took me a moment to digest the meat of her message. Images of “Jerry’s Kids” flooded my brain.
I realized she was talking again. She wanted blood tests immediately, the results faxed to her that afternoon.
“Of course. We’ll get them done right away.” I stood and waited on wobbly legs while she scribbled at her desk. I couldn’t look at Matthew, fearing I’d collapse.
“I have a new little puppy,” she said. “He’s so cute.”
Wait. What?
I nodded, trying to understand the relevance. As she continued, her eyes ping-ponged between me and her notepad.
“My brother—he’s a brain surgeon…” She paused, as if to be sure I was impressed. “He accidentally let the puppy out.”
Didn’t she just tell me my son might have muscular dystrophy?
“He bought my puppy a yellow ball.”
Don’t I have to get to the lab?
“My puppy had a little accident on the rug, but I couldn’t get mad at him.”
Is this a test? To see if Matthew responds to humor?
I dared not challenge her idiocy, as this woman held my child’s life—wheelchair or not—in her hands. So my face smiled, and my voice chuckled. I tried to understand her purpose. Maybe tomorrow the puppy tales would make sense. Maybe I would figure it out later. Maybe the tooth fairy was real.
When we finally stumbled from the office, I wracked my brain trying to find the positive spin. How could I explain muscular dystrophy? What was I supposed to say—“Don’t worry, Matthew. You won’t need a wheelchair”?
In the car, I gave him the briefest of explanations, to which he didn’t react. Sometimes, his spaciness was a blessing.
Then we rushed to the lab and rushed back home to get ready for the 1997-98 school year beginning the following day.
The next morning, I called Dr. Lunig and left a voicemail. When I had a moment at my school counselor’s desk, I called her again, my final message stating I’d be home in an hour. Then I barreled down the highway to make that deadline. At home, no message. I called again and reached a live person who said the doctor was gone for the day.
“But I’m waiting for some test results,” I groaned, my nerves too frazzled to hide my exasperation. “She wanted them faxed ASAP!”
The next day looked like the first. When I finally got through to a soft-spoken receptionist right before 5 p.m., I was near tears.
“I’m sorry if I seem upset. But Dr. Lunig thinks my son has muscular dystrophy, and I just want to know for sure.”
“She does this all the time,” the girl whispered.
Closing my eyes, I tried to still the hammering in my heart. I rationalized away my outrage. It wasn’t the receptionist’s fault. She was very nice. She was trying to help. Knowing the breach of protocol of her comment, in a weak voice, I thanked her effusively and gently returned the phone to its cradle.
That was Friday. The weekend wait was agonizing, and I hovered by the phone. Shouldn’t a doctor call me at home when so much is at stake? Does it matter that it’s a weekend?
On Monday, my waiting and handwringing continued. When I arrived home, I peeked around the corner at the answering machine, afraid to be disappointed again. The red light blinked urgently. I pounced on it and poked “play.”
“Hello Mrs. DeBonis, this is Dr. Lunig.” Her upbeat voice sounded like she had another puppy story. “The blood tests are negative, so it’s not muscular dystrophy. I guess we’ll see you back in six months.”
The beeeep filled my ears.
I shook—arms, shoulders, knees. My thoughts raged at the disembodied voice. You told me my son definitely had something wrong. Your diagnostic skills were so keen, you could tell just by looking at him that he probably had a debilitating, progressive muscular disorder. Then you didn’t return my calls for a week. And now I’m supposed to wait six months and do nothing?
When my shaking slowed, my face cooled, and my mind calmed, a horrible thought slammed me: If it were bad enough to be muscular dystrophy, but it isn’t muscular dystrophy, for God’s sake, what the hell is it?
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Karen DeBonis writes about motherhood, people-pleasing, and personal growth, inspired by the experience of raising her son, Matthew. Growth: A Mother, Her Son, and the Brain Tumor They Survived, is her 2023 award-winning debut memoir, and her essays have appeared in the New York Times, HuffPost, and numerous other mainstream and literary publications. Don’t expect a second book from Karen, but she’ll continue to write essays as long as she has something to say, which will be forever. Learn more at www.karendebonis.com.
Category: On Writing
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