Published on September 30th, 2019 | by Erin Pushman3
They Point at Her Face and Whisper
This is the first in a three-part series by Erin Pushman, about her daughter Lucille and the benign facial tumor that complicates both of their lives. Reprinted with permission from her blog, The Face of Bravery.
Lucille stood in her room, surrounded by a pile of discarded uniform options, her frustration welling into tears.
“I have to wear a skirt,” she said, kicking a pair of uniform shorts across the wood floor.
“But you love shorts,” I said, trying to hand her a comfy-looking pair. This was only the second week of school, early September in North Carolina, where we are still broiling in summer heat.
“No,” she said batting my hand away.
By now, I was frustrated too. The minutes were ticking down toward eight o’clock, and she still had to eat breakfast, brush her teeth, and find her shoes. Generally, we aren’t a family known for punctuality. But we make an effort to get the kids to school on time. Anyway, I thought, good parents probably don’t let their kids get tardy marks during the second week of second grade.
“We just bought you all these new shorts to wear to school,” I said, my frustration rising. Here the new shorts were, all in the prescribed khaki and navy, piled up on the floor. Lucille attends a public school with a uniform policy, and buying enough pairs of uniform shorts to get through these last weeks of heat had been an end-of-summer-break priority, one I’d tended to between Lucille’s medical appointments.
“I need a skirt,” Lucille insisted, her enlarged chin jutting out, reminding me to be gentle.
“They say I look like a boy.”
So there it was.
“Tell me about it,” I said, pulling my oldest child close, cupping her face in my hand, holding the bone that holds the tumor.
Lucille began to explain about the older kids who were pointing at her face and whisper-talking.
We should have expected this. Hearing people’s comments about Lucille’s face was nothing new. Well-intentioned, ill-intentioned, or innocent, the comments came. A chiropractor asked if Lucille had Lion’s disease and suggested we watch the movie Mask. Two smirking kids at the pool pointed to Lucille’s head, called her “bigmouth,” and asked what she had swallowed. A tiny child in a public restroom simply asked “What happened to your face?” And on. So, too, many, many people, who know and love us have said, “She’s still pretty.”
Lucille has a tumor, specifically a central giant cell granuloma, a CGCG in the medical literature. This tumor is lodged in the middle of her mandible, her lower jaw bone. It is rare. It is aggressive. It is benign. It is not cancer, but it behaves like a cancer in many ways.
Often, this type of tumor is treatable with surgery or steroid injections, or both. Not so for Lucille. When the standard treatment failed, she became a rare case of an already rare disease.
What does the tumor look like? Lucille’s surgeon and her oncologist measure in centimeters and speak of facial disfigurement. I think the tumor looks like a ripe apple, wrapped in skin, right at the place where, a year ago, Lucille had a normal chin.
So here Lucille and I were, facing each other in her room on a busy fall morning. Her tumor stood between us and the rest of the day. If she didn’t get dressed now, she’d be late for school, and I’d be late for work. She turned her head to stare out the window. In profile, I could see so clearly how she looked to the rest of the world. Her pretty, disfigured face. Her elongated apple-chin. She looked like a caricature of herself.
Tardy-shmardy. Oh well.
I put my arms around my daughter and walked with her to the bed. We sat down on her purple comforter and talked about the fact that she doesn’t look like everyone else. This was not a new conversation. We’d had it, in various forms, with the hospital social workers and child life specialists, with the teachers and counselors at Lucille’s school, with each other. It is a conversation we would continue to have—the kind that picks up where it left off, but not when you expect it to, the kind that nuances itself to the occasion.
I wasn’t expecting the conversation today because the school counselor and the hospital social worker had visited Lucille’s classroom to explain why her face looks the way it does. But they could not visit every classroom.
“Do you know the phrase, ‘body diversity,’?” I asked, trying to keep my hands off my own chin and on my daughter.
“I don’t think so,” Lucille said. We talked about all the different body shapes Lucille sees at school. We talked about other ways of being different. We talked about wheelchairs. We talked about skin color. We talked about braces and glasses. We talked about freckles and birthmarks. We talked about acne. We talked about hair.
We all have to deal with a lack of acceptance sometimes. We all face naysayers, about the way we look, the choices we make, the clothing we wear. And the list goes on. We feel the impact of harsh or ridiculing words, but we cannot let those words overpower us.
I had hoped my daughter would not have to learn this lesson at seven. And I had simply not imagined she would have to learn it while battling a disfiguring disease. But what I needed to help my daughter understand this morning was not so different from what other parents help their children understand in the face of teasing and bullying.
I held my daughter and let her cry in the safety of my arms. When the tears passed, I explained that she is beautiful and that we each have our own kind of beauty. I told her there will always be people who don’t look like everyone else, and there will often be people who have something mean to say about it.
“Lucille, not looking like everyone else will always be okay,” I said. “Sometimes, not looking like everyone else will even be a good thing.”
I also told her that there are times when we all have to hear meanly-spoken words, but we do not have to listen to them. I told her that living with this tumor in her jaw was going to help her learn how to ignore bullies and meanies and be a good friend to other people who look different.
It was a tidy end to an honest conversation and not a bad pep talk. Even as I squeezed her shoulders and stood up, though, I did not want to send her off to school—or any place I would not be to defend her or whisper love into her ear.
Another parenting moment when the only way forward was to go on as normally as possible. And this:
“You know what else,” I said. “You are strong. And I have your back.” Lucille smiled and hugged me—hard.
Then I helped my daughter pick out a pretty uniform skirt and a pretty purple necklace and a pretty headband. She went to school, late but present, and willing to face the day.