Published on February 18th, 2021 | by Maria Kefalas



The essay below is an excerpt from Maria Kefalas’ book, Harnessing Grief: A Mother’s Quest for Meaning and Miracles (Beacon Press, 2021). Not long after her husband, father, and father-in-law received cancer diagnoses, Maria was told that her then two-year-old daughter Cal would die from metachromatic leukodystrophy, a degenerative genetic disease. The book follows her journey to turn the “superpower of grief” into a force that would improve the lives of other children with Cal’s disease.  

Those first days home I felt like I was dying, and years later, I would realize that I was. The person I once was, the person who looked forward to sending her daughter to kindergarten or teaching her to swim in the ocean, ceased to exist. A mother’s dreams for the future are inextricably linked to her sense of self, and human beings who have nothing to look forward to become zombies stumbling through life and missing the defin- ing feature of their humanity: hope.

When we got home from the hospital I did not want to be around Pat and my older children because I didn’t know how to shield them from my anguish. The only thing that made sense to me, the only thing that kept me alive, was holding Cal for hours. We would watch movies and read books and go to the pool. For a very long time it seemed to me that I needed to be with her every waking hour because the doctors had told us we had just three years. I was convinced that a good mother could never leave Cal’s side. It was a sin to spend time with friends or selfish to go to the gym or work on a new book because she needed me. Years later I would learn that what I felt was something called anticipatory grief. In extreme cases, parents who have been told their child is dying stop going to work or bathing or eating because all they can do is stand watch and wait for the child to die.

Anticipatory grief is grief in three time zones simultaneously: your past, your present, and your future. For me this meant mourning the way Cal had been, so all the artifacts of her old life, her toys and shoes and the photos of how she used to be, were sources of agony. I had asked Pat to take down all the photos of her when she was a baby. It was my daughter Camille who asked me to give away Cal’s toys to our beloved preschool because the sight of them brought her such heartache. All of us, especially Camille and my son PJ, struggled—and still struggle— with how to mourn our old life before Daddy and Cal got sick.

Image by Mylene2401 from Pixabay

In the present we needed to accept that we were now a family with a medically complex child with a life-limiting illness. Our life of music lessons and soccer practice and school had to make room for hospice nurses and doctors and medical equipment and hospital beds. We now lived in a constant state of alert, wondering if this was the day we would need an ambulance to take us to the emergency room.

And the future was no longer about anticipating graduations and birthdays and summer vacations to Cape Cod. All of us understood that a terrifying inevitability was heading toward us and there was nothing any of us could do to change it.

The pool gave me the most comfort. Each day, as soon as we could get Cal fed and dressed, we would go there. In the water, the Cal from before her diagnosis returned. I am sure the neurologists, with all their jargon about how enzyme deficiency damages the sheath of the myelin, could explain why water helped her brain to function better than it could on the land. They might say it had to do with the way the water helped her body process the messages her brain was sending. But I preferred to see it as proof that Cal was a magical creature. It was during aqua therapy that a young occupational therapist named Kristy Pucci nicknamed Cal the Mermaid.

Indeed, it was comforting to think of Cal being transformed into a beautiful creature rather than dwelling on the medical explanations for a degenerative disease. In my grief I came to believe that Cal was not like other children because she was the Mermaid, too special and rare and pure to live among humans.

And in the water her essence came through.

Whenever Cal and I were in the water in the days and weeks after she was diagnosed, in these trancelike moments I would pray. It was not a prayer to God but rather the expression of a feeling that would engulf me when I was in the water with her. Just staying in the water with my Mermaid was my idea of perfection, my heaven.

Photo by Annette Batista Day on Unsplash

In the water my prayer was this phrase over and over again, a whispered song: “Mommy loves her Cal. Mommy loves her Cal.” I would say that dozens of time each day. Then I would say, “Mommy knows you are not going to stay for long, but try to hold on for as long as you can and let me know when Mommy has to let you go.” In these perfect moments with Cal, I would try to be careful in my words with her. How I longed to say, “Mommy will make it better” and “Mommy isn’t going to leave,” but these things were not true. The Mermaid seemed to understand that better than I could. But in the water it was impossible to hide the truth with sweet, false words. Mommy could not make it better and, far too soon, our Cal would be gone.

What I describe as prayer can be more accurately described as unfettered access to my love for Cal. My love for her was otherworldly and divine, and yet I never prayed to God after he had answered my prayers in the hospital chapel asking that he not give Cal cancer. My relationship with God is complex. I see God in the perfection of my daughter. I understand, with all my heart, how God’s love is not possible without suffering. And humanity requires suffering, grief, and pain to experience joy and love, and to find wisdom and purpose. Yet my rage at God comes from the simple fact that losing Cal is too high a price to pay. Those days right after Cal was diagnosed I was already able to see the paradox of how suffering would make me a better human being. The rage over losing my Mermaid made me gag and choke, but even then the truth of this was clear to me.

The bathing suit I wore in the pool was ripped and faded. It was astounding how grief had given me more than a passing resemblance to the gruesome sea witch from The Little Mermaid. The realization made me laugh. Grief had transformed me into this numinous creature. Like my Mermaid, it seemed I lived with the humans but was no longer one of them. When I watched parents ignore their perfect children who could walk and play, or when I overheard a parent become impatient with a child for falling down, I pitied the humans for the tiny way they lived. Each day that passed it was harder to remember how I could ever have been like them. I wondered how they could not go to the sea and ache with joy at the sight of the beautiful and healthy children.

Photo by Sharosh Rajasekher on Unsplash

That summer I would have visions or dreams; I couldn’t be sure if I was awake or not when these images came to me. Cal would be floating in some sort of blue netherworld—it could have been the sky or the sea. There would be a light in the distance and Cal’s curly hair would be floating above her in waves. She would never speak, but she would gaze at me, never sad, never frightened, never happy; this was a place where such emotions did not exist. And there would be shimmering light reflecting around her. I would try to speak but no words would come out. There was no need for words in this place.

It was not heaven, but it was the place in my dreams that felt divine and supernatural. Even if Cal was still living among the humans, this was the place where my Mermaid actually dwelled. Cal could not mourn the life I expected her to have, and she lived in a place that humans could not understand. She was the Mermaid watching all of us, fascinated and curious, longing to be a part of this world but separated—misunderstood, silent, and coming to life only in the water, unable to live among the rest of us.

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About the Author

Maria J. Kefalas is a professor at Saint Joseph’s University in Philadelphia and the author or coauthor of three books, including Hollowing Out the Middle, Working-Class Heroes, and Promises I Can Keep. Dr. Kefalas is also an advocate, a philanthropist, a blogger, and the cofounder of the Calliope Joy Foundation, which in 2015 helped fund the nation’s first Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia. She lives with her three children, Camille, PJ, and Cal, and her dog, Brody, outside Philadelphia.

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