Our Land: For Ava, in Treatment

Today’s Our Land was authored by the fabulous and wonderful Emily, of Oh Boy Mom.  I’ve recently mentioned her, but really, I cannot say enough amazing things about one of my first ever blog friends. She’s warm, funny, brilliant, gifted, and real. She writes about maintaing humor through motherhood, raising three boys, and, most recently, about her 9-year old Little Dude, who was diagnosed with a rare type of pediatric tumor. Emily realized that no matter what challenges each of us are going through, that laughter – and writing about it – is key to happiness.  If you don’t know her, go meet her. I promise that you won’t regret it. I’m honored to have her as a friend.

Our Land: For Ava, in Treatment

Moments after we arrived at our temporary apartment at Christopher’s Haven, a little girl with a blonde bob poked her head out of the door to see who was moving in. Seconds later, she bopped down the hall to meet us and seconds after that, she asked my son if he wanted to play with her in the communal playroom. Her mother immediately apologized for her assertiveness, explaining that they had been the only family living on the hallway for the past two weeks. Her daughter was starved for interaction with another kid.

Playing hard to get, my son declined and said, “maybe later.” He didn’t dare tell her that the real reason he didn’t want to play was because his uncle was already inside the apartment hooking up the used XBox machine that he managed to purchase at a bargain price. My son and I both knew that the XBox was going to be a key component to saving our sanity over the next six weeks living away from the usual comforts of home.

As we quickly discovered, the girl who lived next door to us on the hallway was named Ava [name changed to protect identity]. I knew Ava was there to receive proton radiation just like my son because that was why families stayed at Christopher’s Haven, an organization that provided housing to out-of-town families receiving this treatment at Massachusetts General Hospital. I didn’t know what her diagnosis was, but to me she looked healthy, strong, and completely un-phased by her illness. And she had more energy than five girls combined. I guessed she was about the same age as my son, around 8 or 9. I also assumed that she was in the early stages of treatment or perhaps she was wearing a wig or else maybe she did not have to endure as extensive a treatment regimen as my son.

I was wrong.

During our first few days of living there, we’d bump into Ava in the hallway or at treatment and she was always happy and ready to engage with whomever was around. A few days before her treatment ended, her younger sister arrived. Their sisterly bond was palpable and sweet as they went everywhere hand in hand.

One day, I bumped into Ava’s mom in the laundry room of the building. On our way up on the elevator, I asked her if the weeks they had been there seemed to go fast or slow. I knew their treatment was coming to an end, while ours had just begun. Instead of answering my question, she replied a bit cryptically with, “well, we’re not having a good day today.” Ava’s mom looked tired and emotionally spent. I did not press any further, and wished her a good afternoon.

I was somewhat surprised by her reply, because I had seen Ava earlier and she was her usual bouncy self, bounding up and down the hallway with her sister. I couldn’t or maybe I didn’t want to understand why they had a bad day.

In the waiting room at the treatment center the next day, Ava’s father sat down to chat with me. Usually, families didn’t discuss specifics of their child’s illness. But Ava’s dad was different. He point blank asked me about my son’s situation. I felt awkward, but thought it would be rude if I didn’t ask in return about Ava’s illness.

“Brain stem,” he murmured.

I nodded, as if I knew what he was talking about. He told me she wasn’t able to have surgery and that she had been initially diagnosed when she was three.

I couldn’t believe that spunky Ava had been battling with this for at least five years.

When I got home later, I decided to Google “brain stem tumors” and I did not like what I read. Suddenly, I understood why Ava’s mother said they were having a bad day. And then I realized that although we were all living on the same floor for similar reasons, each child’s situation could be vastly different.

On Ava’s second to last day, she and her sister knocked on our apartment door. She asked if my son was home and if he wanted a rubber ball that lit up when you bounced it. The two girls were holding a box of balls and handing them out to kids on the hall.

“Sure, I bet he would,” I answered.

I invited the two girls in so they could hand the ball directly to my son. He thanked them, thought it was cool, bounced it a few times, and then went back to playing XBox.

I had this urge to hug Ava good-bye, but I restrained myself. I thanked the two girls for visiting and watched them skip out the door in their jeans and matching cowboy boots. We never saw Ava again because they left for their home in Minnesota while we were at our hospital appointment the next day.

However, I know I’ll always remember Ava, because she was more than a little girl with a fighting spirit.

Ava was hope.

And perhaps that’s why even though I barely knew Ava, I felt an attachment to her as if she was a niece or a cousin. People always say the same thing when referring to children who fight serious illnesses: “Kids are resilient.” I completely agree.

And kids like Ava? Ava is exceptional.

—

Originally on Brain, Child. See? I told you Emily is amazing.

Emily Cappo is a writer and blogger at Oh Boy Mom. She is a regular contributor at Huffington Post and has also appeared in a Huff Post Live segment. She has recently completed a memoir, “Hope All Is Well” which chronicles mid-life loss, re-connection, and revelation.