Being Different from Everyone Else: Living Every Day with a Childhood Tumor

Lucille writes encouraging notes to herself. I found this one tacked to her bulletin board.

This morning Lucille went to school twenty minutes late and limping. After talking her through the nausea, feeding her a toaster waffle along with some homeopathic tablets that sometimes help, and asking her to down her other meds with a cup of water, I watched Lucille support herself on the railing to make it down our back steps.  

Watching her struggle out the door to go to school, I had the same thought I do every time I let myself question what is happening to my daughter.  How did we get here?

Lucille is not late for school every day, but she does spend every day limping, and some days, she rides the school wheel chair to cross long distances.  To get from the third-grade hallway in the back of the school to, say, the art room in a trailer behind the school is more than she can pull off most days.

The wheel chair is new this year, but being fundamentally different from everyone else is not. Battling a childhood tumor is like that. The child with the tumor and the family she belongs to become somehow other from everyone else.

Here is an example: Right before the end of the school year in June, a friend called to tell me what a great time she had volunteering for a PTA event. That’s a pretty reasonable thing to say to a friend, but I hung up the phone and cried. Lucille had just gotten out of the hospital, after a frightening 5-day stay brought on by side-effects from her drug therapy. I’d been focused on making sure Lucille drank enough fluids, ate enough calories, and took enough footsteps each day.  A PTA event? Volunteering? I could not make sense of it.

But sometimes, I forget how different we are.  A childhood tumor is part of the ebb and flow our lives now. But we are still a family of five with all the attendant housekeeping, school attending, and activity managing.  Lucille is still the older sister to her two little brothers. She is still our smart, sassy girl. And yet. And yet…

I can’t speak for other families with kids battling childhood tumors, but I see them enough to be pretty sure it is like this for most of us. Your child gets a diagnosis, you enter the unsettling world of pediatric oncology.  You manage medications and nausea and appointments. Your family gets a new normal, but the rest of your life doesn’t stop. You know how different you and your child are, but most of the time, you don’t think about it in those terms.

Then, in the midst of a busy morning trying to get everyone off to work and school, these moments of startle. Seeing your child struggle through the tumor battle.  Seeing the way it has changed your family, almost is if looking in from the window. Look: what they are doing? There is vomit on the floor. Prescription bottles falling from the cabinet. The toddler has climbed up the table again. The kindergartener is trying to find his left shoe. It’s time to leave for school. Where are the parents? Oh, they are in the turquoise bedroom with the sick one.

First, how did we get here? Then, here we are. In this place of being different. “How are you?,” our kind friends ask. I don’t know how we are. Only that we are here.

It has been two years since Lucille’s face started to change as the tumor grew and almost twenty months since her diagnosis.  I don’t know how long it has been since we realized we were different.

I can say I wrote my first post about Lucille’s changed life one year ago.  Mutha Magazine is running that post as the first in a serial of adapted posts from The Face of Bravery.  The post as it appears on Mutha is expanded from the post that originally appeared here.  I hope you will read it on Mutha.  While you are there, take a look at some of the other real-life parenting stories written by moms, mothers and muthas!  Some of them are about other families who, for whatever reason, find themselves in a place few others seem to be.

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They Say She Looks Like a Boy

 

Lucille on her first day of second grade and seven months into her battle against the tumor.

 

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.

“Lucille,” I countered, my voice rising in my own frustration. “We just bought you all these new shorts to wear to school.” And here they 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.

“I need a skirt,” Lucille insisted, her enlarged chin jutting out, reminding me to be gentle.

“Why?”

“They say I look like a boy.”

So there it was. And here we were.

“Tell me about it,” I said, cupping her face in my hand, holding the bone that holds the tumor.                                                                 

It hadn’t happened in second grade yet, but hearing people’s comments about her 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 had pointed to Lucille’s face, 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.”

Still. Right. Here we are.

Lucille has a tumor, specifically a central giant cell reparative granuloma. It is lodged in the middle of 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.

What does it 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 face to look out the window. In profile, and 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. We talked about body diversity and all the different body shapes Lucille sees at school. We talked about wheel chairs. We talked about skin color. We talked about braces and glasses. We talked about freckles and birthmarks. 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 face the naysayers, and we cannot let their words have power over 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 there will always be people who don’t look like everyone else.

“Lucille, not looking like everyone else will always be okay,” I said. “Sometimes, not looking like everyone else is even a good thing.” I also told her that there are times when we all have to face someone who says something mean. 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. I told her she was strong and that I had her back.

Then I helped her 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.