About two years ago Real Simple, a favorite magazine of mine, had a writing contest. The prompt for the essay was "When did you first understand the meaning of love?" I thought for about a minute and realized I had to write about supporting my sister through the life and loss of her son. It took a year to write and it wasn't until I shared this with her that I really felt that this piece was ready. I am still not sure, but I felt compelled to share this today, in memory of this time with my sister and the life of my nephew, Cale. I love them both and hope you find hope and love in this story.
Love is a complex and beautiful thing. It is one word that describes an emotion, a physical act, and an idea. There are many instances of losing love. One can fall in and out of love, both romantically and platonically. Someone else may mistake love for something more passionate and empty. Still others may have it taken away in tragedy. Whatever the catalyst for the loss, it will always leave a gaping chasm of emptiness in your heart at first. And this was the experience that led me to realize what love really means.
In the winter of 2004, my newlywed sister, Annie, was expecting her first child. We were all so excited for her and her husband. She was entering a sorority I myself was eager to join (and still am). There was a tinge of jealousy only overshadowed by the pure joy of going through the experience with her. I was going to be an aunt and my best friend was having a baby! There were no two people more deserving of this experience in my opinion than my dearest sister and her wonderful husband.
On January 8, 2005, Annie prepared to deliver her first child. We were all asked to allow the couple some privacy, give them some breathing room, and they would call us all when they were ready for the descent into madness that was their respective family and friends. Unfortunately, my aunt and I were the only ones who honored this request. It was about three in the afternoon when I got a call from the hospital to hurry up and get there. We dropped everything, unprepared for what we were getting into. No one had answers. All we knew was there was something terribly wrong.
When we arrived, Annie had not yet held her son, Cale. The miasma of panic was dense as we all waited to find out what the next step was, or even awaited word of what the diagnosis for was him. The only word we received was when CareFlight took my nephew to the children’s hospital in Fort Worth. My brother-in-law left my sister’s side to be with their son overnight. I made sure Annie was well taken care of. That night, no one slept.
Because the nurse told her she could be released as soon as she could walk, Annie’s mission was accepted and less than 24 hours after her C-Section birth, my strong willed sibling was checked out of the hospital and we drove like mad to see her son. When we got there, we received the diagnosis, followed by the grim prognosis: Cale was born with Trisomy-18; it was a miracle he was born at all, not to mention lived through to the next day. Startlingly numb, I left my sister’s side to tend to her home and care for her four-legged children. While there, I Googled this new addition to my vocabulary. The results were bleak. I clicked link after link to understand this genetic mutation, much like Trisomy-21-- better known as Down’s syndrome-- but with a much higher mortality rate. While a person with Downs may live to middle age, the average life expectancy for Cale was eight weeks at best.
The first week of his life is a triangular blur of back and forth from Lewisville to the small college town of Denton to Fort Worth, daily, sometimes twice. The distance killed me, but I was there for my sister as she was there for her baby and husband. The support I gave her felt negligible. To this day she valiantly praises my deeds, which I brush off and remind her she would have done the same. But through that time only one thing drove me: to ease the gripping emotional pain my sister felt over the imminent loss of her child. We celebrated with them each day they were able to spend with my sweetest nephew.
When he came home after the first week of his life, we rallied around my sister. As that
second week passed, the house became emptier as everyone went back to their lives. The drama was over for them, the newness worn off. But Annie sat every day with her son, knowing each moment may be their last together, and singing sweetly to him. To this day, I can’t hear You Are My Sunshine without picturing her rocking him and hearing his tiny grunts of contentment and her wavering voice as she struggles to keep the emotion under control. They were the picture of perfection, my sister and her son. There were moments where her façade would crack and she would break down, but most of the time, she remained strong for her fragile little one.
I always grew anxious as the night fell. Annie had disclosed the overnight hours were the worst time for Cale, so it became the worst time for her. This trickle down emotion connected us through many sleepless nights. Where I could go home to my nice cocoon of an apartment, she would face the challenges of motherhood she didn’t expect and no one had prepared her for. In the wee hours of the morning, February 25, 2005, I knew Cale was gone before my phone even rang. I answered and a hollow voice simply stated, “Sarah, he’s gone,” to which my reply was just as simple, “I’ll be right there.” Every mile that separated us felt like a vast canyon, which could not be scaled quickly enough. In record time I arrived at her door. She would not let me hug her, afraid that in a moment of weakness her resolve to take care of business would break before she was ready; instead she issued duties like a drill sergeant at boot camp while her husband sat almost comatose in a corner of the living room. The boundaries were set: his and hers guests. I took the orders like a champ, and the rest of the night is a blur.
We spent an incredible eight weeks with my nephew; through his short life I realized what is important and what can take a back seat. We celebrated each week as one would a birthday, giving a new perspective on living each day to the fullest. I spent as much time with my sweet nephew as I possibly could. Both parents liberally allowed everyone to spend time holding his tiny form for as long as they wanted even though we all knew they longed for nothing more than to spend each moment by his side.
Parents should outlive their offspring. It is the natural order of things. When that order is disrupted, the emotional pain is excruciating and not rivaled. It seems there are only two paths that to follow after the experience: a road and a cliff. Annie took the path of strength and carries on Cale’s memory in her ability to always overcome the adversity of a situation. True love is facing that suffering from the beginning and still moving forward. In my opinion, her strength is unparalleled. Her message of hope and love is conveyed to the world each day she wakes up and chooses to honor my nephew’s memory by creating a happy home for her other three beautiful children. This is the apex of love, unparalleled by any emotion. This is the ultimate meaning of love