Brain Tumors Suck, But Life Is Good
The other night Ava, my ten year old, and I went on a walk to see Christmas lights. And while we were walking she said “Mommy, tell me a story that will make me cry.”
You see, my daughter and I love to happy cry so much that it’s almost shameful. But like Dolly Parton said in Steel Magnolias “Laughter through tears is my favorite emotion.” Same girl, same.
And because I share Ava’s need to shed a tear over something that makes our hearts burst with love, I dig into my memory to deliver those tears. It only takes a moment, really. But first the story I tell her has a backstory I must tell you.
It’s funny how time works. I can’t remember what I ate for breakfast yesterday, but I can remember getting Sophia (my niece) and Ava’s (my daughter) pictures taken with my mom at Kmart nine years ago. They were three and one year old, respectively, and my mother loved getting them matching outfits for pictures. This time the girls wore matching black cardigans with silky plaid skirts. They were only babies, but they were already best friends- inseparable, really.
Because Sophia had been nodding her head a lot while watching TV and had trouble going down steps, her mother, Jodi, had made her an eye doctor appointment after the picture appointment. We all thought the nodding was a tick, but were glad Jodi was getting it checked out.
Sophia and Ava- the day we found out
Later that night, while in the parking lot at Costco, I got a text message from Jodi saying something was wrong and they were being sent to emergency.
There was a collective panic that spread between my mother, grandmother and me. Let me stop here and say that, Sophia was our everything. I was in the room when she was born, I witnessed the first time mother and daughter saw each other. My mom and grandmother babysat her every day and I would rush to my mom’s after work so I could see her. I remember my other grandmother saying something at my baby shower about Sophia. “That child’s feet never touches the ground.” And it was true. She was always in our arms. Sophia was Jodi’s baby, but Sophia was OUR baby too.
There was no question about it, we went to the emergency room. When we got there, Sophia’s father, her grandparents and aunts were there. Ava had fallen asleep so I enclosed her in her stroller. I can still see where I was sitting, looking at my one year old baby sleeping in her stroller, sick to my stomach with worry, for Sophia, for Jodi, for my family, and for me. Jodi and Sophia’s father were in the back talking to doctors while Sophia sat in the waiting room with us. I can’t tell you how much time passed. But I can tell you that the look of agony on Jodi’s face as she walked out of the emergency room doors broke my soul into a million pieces and is tattooed on my mind.
“It’s a brain tumor,” she cried through heaving breaths. And my head collapsed into my lap. There was darkness there, where my arms created a box around my head and that’s where my sobs found me. Lost in a despair I had never felt before, I peered up at Ava, still asleep in her stroller and my chest pulled into a ball of fear. My baby was in front of me, safe and healthy and Jodi’s baby, had a brain tumor. How would we get through this?
“Why is everyone crying?” Sophia had asked from her aunt’s arms. We were shattered and we were a spectacle in the emergency room. A family filled with sorrow from life altering news.
More appointments followed. We found out that Sophia’s tumor was benign, but that it was growing and affecting her vision and consuming her pituitary gland. It had to come out. There was going to be a life filled with concerns and medications and testing, but the best part, the most important part was that Sophia was expected to survive. Our little three year old would make it.
Taken the night before Sophia’s surgery.
Two weeks later on December 8th, Sophia underwent brain surgery for eight hours. The tumor was removed, cell by cell and it was the longest day of our lives. There was relief when the surgeons came out and told our large group that the surgery was a success, the tumor was gone.
It was a long recovery, a long road. We had to get to know the new Sophia. The one that had been through a horrible trauma. Who was scared and fragile. If I were to write about post-surgery we would simply be here for weeks, because our girl is still dealing with issues and probably will for the rest of her life.
And so, when Ava wanted a story that pulled on her heartstrings, this is what I told her. I told her that Sophia and her were always the best of friends even for a little one and three year old. I told her that she couldn’t see Sophia for two whole weeks while she recovered in the hospital. And that was the longest they had ever been separated. That once Sophia came home, we were worried that Ava wouldn’t recognize her. Her head had been shaved. Her eye was swollen and bruised. The new medication had made her gain weight immediately. Her voice had even changed into a higher pitch. I worried that to Ava, Sophia would be unrecognizable.
Yet, when Ava came into my aunt’s house, she walked right up to the couch that Sophia was laying on and wrapped her arms around her big cousin. She knew exactly who she was on the spot and was giddy to have her best friend back.
Probably a couple months after surgery.
Sometimes, the weight of the world is heavy, yes? Yes! Sometimes I feel I cannot do hard things. I don’t want to show up. I want to go to bed. I don’t want to hear about the fires or the hurricanes. The famines and the shootings. It’s hard on my soul. I get too emotional.
But then, I’m reminded of times like these, nine years ago this very month. How I had no choice but to deal with life. How I thought our family might never be the same. How my child shared an unconditional love and bond with another child at only one year old. And I’m reminded what this life is about. Showing up. Doing our best. Making it through. And doing it all over again.
That night Ava and I walked home, hand in hand. And she got her tears, I got some too. What weirdos we are.
Ava, Vivienne and Sophia.