You Were My Worst Nightmare
Photo Courtesy | Alyssa Nutile
BY ALYSSA NUTILE
When I was a girl, I had bunk beds, which might seem inconsequential, except that I was an only child until I graduated high school. But I was desperate for bunk beds because all my friends with siblings had them, and eventually my parents relented and found a secondhand set for me.
For most of my time with those beds, I slept on the bottom, stuffing loveys and pillows next to the edge to cover the seam where bed and wall met and tucking blankets under the mattress of the upper bed to close my bottom bed off from the world. I would keep my current books in the slats that held up the upper mattress, always easily accessible whenever I was ready to settle in. It was my hideaway, my safe place. My retreat.
And retreat I did. I read hundreds of books in that bed, tucked away in a little space of my own creation. I lived in fantasies and stories and sometimes, with my nonfiction books, the realities of others.
In one reality, I read about a little girl who had cystic fibrosis. I hadn’t heard of that disease at the time, but in the book, it was made clear that she was very sick despite her parents best efforts to keep her safe and healthy. They gave up everything to care for her. They changed their whole life for her. They prayed desperately for God to save her. But eventually, the girl died anyway, and her parents mourned her for years.
I understood then, as a middle schooler, that losing a child was the worst thing that could ever happen and something I’d never be strong enough to face. And it became my own personal nightmare.
***
In 2016, I gave birth to my son, a healthy, sweet, energetic baby boy. “He’s perfect,” the doctor said. He was everything a parent hopes for, no illness, no complications. A dream come true. The kind of pregnancy and birth and childhood that made me believe, for just a moment, that nothing so terrifying as having a sick child could happen to us. Relief that perhaps we were exempt from the laws of the universe, and that we’d never fear or suffer or be faced with difficulty or hard decisions.
That hope wasn’t enough to quell all my parental anxieties. It didn’t stop me from checking my son’s breathing in the middle of the night or calling Poison Control when he licked an adult sized allergy medicine tablet or putting up a baby gate in every room of the house. But it was enough to let me drift away every night, knowing he was safe enough from everything that I thought I could shield him from.
That’s one thing about life though, it has a way of making us face the fears that haunt us in our sleep.
***
September 2018, in a small, white OBGYN office: “There’s something wrong with your baby.”
October 2018, in a smaller, darker radiology room: “It all looks the same. We don’t know what it is.”
November 2018, over the phone: “The tests all came back negative. By the way, you’re having a girl.”
December 2018, in an unfamiliar city across a cluttered desk: “She has a significant brain abnormality. We won’t know the extent until she’s born. Here are your options.”
January 2019, in my bed, staring at the ceiling as sleep evades me for another night: “Just let her live. We can manage anything as long as she lives.”
February 2019, in another radiology room: “She’s measuring very small. We might need to schedule her C-section early.”
March 2019, on an operating table as tears stream down my husband’s face: “She’s here. She’s here, and she’s breathing, and she’s looking at us.”
April 2019, at a conference table adjacent to the NICU: “This is her diagnosis. We won’t have a good idea of her prognosis until she’s older, but that’s not necessarily a bad thing. She’ll need brain surgery though.”
And later that same month, “The surgery will need to be redone. And we think her first diagnosis might not be the whole picture.”
And the next month, “We'll have to redo her surgery one more time.”
May 2019, in a quiet NICU room with my sedated daughter recovering from her third brain surgery in a month: “This is her final diagnosis. It comes with a severely shortened lifespan. We’ll try to get her through childhood.”
And suddenly I understand. This is what they mean when writers try to describe hell on earth.
***
I mourned for months. I held my daughter close and let my tears fall on her face and tried to imagine a world that existed without her in it. I never could.
Eventually, we stopped mourning. We stopped fighting reality. We stopped dreaming for a life that looked different than the one we had. I refused to mourn my daughter before she even left us. I refused to let sadness eat me alive. I became more afraid of not giving her the life she deserved than having to say goodbye to her too early.
I accepted this new world that we lived in, and we did, in fact, start living. We started breathing. We played and we sang and we loved and we bonded. All of us, as a family of four, but her and I especially.
And she started blossoming as well.
She grew. And she learned. And she recovered. She loved us as her parents, and she loved her brother as her best friend. She communicated, and she fought for herself.
And she still had her diagnoses and her medical needs and her disabilities and her fragile, finite, precious humanity.
And when I looked at her this morning, in the summer of 2022, I understood one last thing: I will continue to dream of her while she is here with us, and I’ll dream of her long after she is gone, but this sweet girl is not the embodiment of my nightmares. She is my second dream come true.
ALYSSA NUTILE is an artist, writer, mother of two, and advocate living on the shores of Lake Erie in Erie, Pennsylvania. Her daughter Gemma has a debilitating genetic disease, and Alyssa’s work focuses on the emotional, mental, and physical realities of loving, parenting, and advocating for a medically complex child. She’s currently writing a graphic memoir about her pregnancy and first year of life with Gemma. You can see more of her writing and artwork at AlyssaNutile.com and follow our daily life on Instagram @alyssanewt.