Born with cardiac abnormalities, Janelle’s been in and out of hospitals since she was born. While she’s been blessed with successful surgeries, she’s also had to confront some pretty big truths from a very young age. Here’s how living alongside death has shaped her into the person she is today.
“Miss Kitty, you’re my favorite to snuggle with at night under the covers. You fit perfectly under my arm. I love you very much.” I kissed the top of my stuffed kitten’s head and proceeded to move along to my teddy bear.
“Mr. Bear, I like that you can wear my hats. You also look so handsome for teatime. I love you very much.” I proceeded to give Mr. Bear a big hug.
From the doorway, my mom watched each of these tender moments between my eight-year-old self and all my stuffed animals lined up neatly along my bed.
“I think it is sweet that you are telling each of your animals how much they mean to you.”
“Mom, if I don’t come back from the hospital, I want them to know how much I loved them.”
According to my mom, there are few moments from my childhood more burned into her memory than this one.
At birth, I had several cardiac abnormalities, with varying degrees of severity. My first open-heart surgery was when I was 10 days old. My chance of survival was so poor that the cardiologist spared my parents the statistics. There would be other surgeries following in the years ahead. I remained no stranger to hospitals throughout my childhood. I was extremely fortunate to be part of the first generation of pediatric patients for whom there were successful surgical solutions.
The surgery when I was eight was the first one that I really remember. As evidenced by time with the stuffed animals, I already had some awareness of death. I remember my grandmother pressing a rosary into my hand as they wheeled my gurney toward the operating room. I remember praying and not feeling scared. Death as I vaguely understood it, had something to do with being reunited with God, which didn’t sound half bad.
Fast forward to college, I had borrowed my roommate’s bike and had agreed to meet another friend for a ride. After a few miles, I began to grow tired and called to my friend to slow her pace. She turned around and playfully grinned back at me, “Out of shape, huh?”
Suddenly annoyed, I shouted out to her. “Leave the heart patient alone.”
“What are you talking about?!?” By this time, she had turned around and was pedaling back toward me where we met in the middle.
“Are you sick and I don’t know about it?” Concern and confusion flashed across her face.
My mind whirled. I didn’t go out of my way to tell people about my medical history nor did I purposely avoid the topic. At a recent pool party my surgical scar was visible through the top of my swimsuit, and I had shared my history with everyone present. Though when I recalled that party, this particular friend hadn’t been there. Was it possible that this seemingly critical part of my identity hadn’t come up during our couple of years of friendship?
Having ditched the bikes in favor of tacos by this point, we sat down at a table. I began to explain my story to her. Carefully, I assured her that I was relatively strong and healthy.
“I feel like I should apologize, I thought I had told you all of this.”
She chewed her taco thoughtfully, “It makes a lot of sense.” Surprised by her comment, I asked her to clarify.
“There is something about you that has always felt different, maybe more mature somehow. You don’t get bogged down too much by grades or relationship drama. You volunteer frequently and stay deeply connected to your faith, your family and your friends.” I still wasn’t following her train of thought.
She paused again. “Maybe living alongside death means you have a better appreciation of what matters in life.”
My friend’s words still reverberate for me. I don’t wish ongoing medical trauma on myself and my body. Yet, I have found that those periods of uncertainty lent themselves to a certain kind of clarity.
As a newlywed, I had to choose whether to have yet another open-heart surgery. My pulmonary valve was leaking under the strain of scar tissue from prior surgeries. The surgery wasn’t imminently critical for my health, but the cardiologists believed it would give my heart its best possible functioning during future pregnancies. My husband and I opted for the long game and pursued the surgery. Death was alongside us in that process as we drew up wills, powers of attorney, and advance directives. Since that last surgery, I have been blessed with two healthy sons.
The average human lifespan offers us approximately four thousand weeks. Death is always alongside us. We can try to ignore it, many people do. Yet, living within the finite can be empowering. It forces a more honest discernment about how to spend those very same weeks.
There are many days when I live my life far removed from an awareness of death. Trust me, I am as likely as any other parent to spin into a state when the open-face peanut butter sandwich that flips PB side down. I freely admit that I sweat a lot of the small stuff these days.
In my calmer and more reflective moments, I think about the 8-year-old that understood that death was a return to God. I think about the college student who had a particular sense of purpose. I hope to be the adult who recognizes that death can enhance how I decide to live my life.
