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.