38: Anam Cara

38: Anam Cara

From Chicken Soup for the Soul: Family Caregivers

Anam Cara

The one you love, your anam cara, your soul friend, is the truest mirror to reflect your soul.

~John O’Donohue

The day I first met my soon-to-be stepdaughter, Tiffany, she ran across the room shouting “Mary!” and flung herself into my arms as if I were a long-lost relative back from the dead. The Celts would call this a greeting of anam cara or soul friends. Indeed, as soon as that short, compact, 11-year-old body made contact with mine, I knew we were kin.

Tiffany was one of those “miracle babies” who had a one-in-a-million chance of living after she was born with one non-functioning kidney and one operating at only 10 percent. An early CAT scan revealed the likelihood of mental disabilities too. When I first met Tiffany, more than 18 years ago, her partially functioning kidney was starting to give out, her life energy declining. Although an inherently joyful child, she had dark circles under her eyes and little desire to eat. Right after her father, Richard, and I were married, she went on dialysis and was placed on a transplant list.

About two years later, I was on a business trip when Richard called with the good news. Tiffany was getting a new kidney! He and Tiffany’s mom, Connie, were anxiously awaiting the outcome of the operation in the hospital’s surgical waiting room. The kidney had come from “a large man in Alaska.”

I wondered if Tiff would exhibit any of her donor’s attributes, like other transplant patients have experienced. Would she develop a passion for fishing, for instance, or riding snowmobiles? The juxtaposition of this large, and in my mind, burly man with this fragile 15-year-old girl seemed comical, and yet something about the match seemed right. Time would tell, of course. Meanwhile, she needed to get through the operation.

“Connie and I have been talking here in the waiting room, and I just wanted to warn you about something,” Richard told me over the phone. “The doctors are telling us that Tiff will need supervised, around-the-clock care for about three months after her transplant. Neither Connie nor I can afford to leave our jobs for that long. Since you work at home, you’ll need to be the primary caregiver. Tiff will come live with us full-time.”

“Oh,” I said, stunned. “I see.”

I simply didn’t have the words to express my mix of emotions. On one hand, I felt jubilant about Tiffany’s new kidney. On the other hand, I felt terrified by the thought of three months of caregiving. What sacrifices would be required? Could I even do it? I also felt angry with my husband for giving me this daunting task without asking for my consent.

I returned home, and for the next two weeks, while Tiff recovered from surgery in the hospital, Richard and I were in the thick of what we lovingly refer to as a “process.” Although he felt compassion for me, Richard’s analytical mind saw only one solution to the family dilemma and remained unwavering in his resolve. I saw the same solution and felt trapped in it.

On the eve of Tiffany’s arrival, I still felt resentful. This sweet, vulnerable little girl was coming to live in our home, and here I was with a reluctant heart. I desperately wanted to reach inside myself and turn on the light, but I couldn’t find the switch. That’s when I prayed.

“Please, God, change my heart,” I pleaded, “so that I may welcome this child with open arms.”

Miraculously, conversion was immediate. By the next morning, my heart not only felt lighter, but I felt excited. As Tiffany crossed our threshold with an armload of pills and a list of operating instructions at least a mile long, I felt nothing but boundless joy.

I don’t remember all the details of Tiffany’s care that spring into summer, but there was certainly a pill-taking regimen morning, noon, and night. There must have been a regular change of dressing and inspection of her wound. I clearly remember the incessant reminders for her to drink, as the regimen was four liters a day. She recorded each glass of water on a chart with an X. The running question was, “How many Xs do you have?” usually followed by, “It’s time to gulp!” because she often lagged behind.

Although her condition demanded a lot of attention, these trappings of care only deepened our intimacy with each other. I was still able to get my work done during the day, and Richard took over most of Tiffany’s care at night. In those three amazing months that Tiffany was under my care, I honestly don’t recall a difficult, frustrating or anxious moment. It was all good.

Tiffany experienced her own conversion when she came to live with us. Most likely, it was because “Lefty,” what she called her new kidney, was cleansing toxins from her body like a good kidney should. I liked to think it also had something to do with the large man from Alaska. For the first time in her life, Tiffany loved to eat. In fact, she didn’t just eat—she dined, she relished, she savored, all the while complimenting me for being an “artist of food.” You can’t begin to imagine the incredible joy I felt, preparing meals for a child who hadn’t enjoyed food for years.

One afternoon about a month into her recovery, Tiffany sat at our round, maple table in the kitchen, coloring a mandala in a coloring book, as I stirred relish into that day’s tuna salad. We chatted about all the things she was going to do when she got stronger, like swimming with the Special Olympics and horseback riding. We spoke with the ease of friends who had known each other for years.

All of a sudden, she looked up from her coloring, stared pensively at me with those sparkling brown eyes of hers, and said, “You know, Mary, I came here for you.”

At that moment, time seemed to stop, and I knew what she said was true. Although it looked like I was the one caring for her, she was also caring for me. She came to add to my life, not deplete it, to return my love a thousandfold. Tiffany took my fear away—the fear of giving myself over to another human being, a community or a cause—and I found myself in the giving.

In the summer of 2008, ten years after she received the gift of a kidney, Tiffany passed away. She lived 25 years longer than her first doctors ever expected, and yet we all wished she could have lived, in health, for at least 25 more. There were many challenging times with Tiffany over the years—hospitalizations, procedures, dialysis and surgeries—but to this day, those three months I spent as Tiffany’s caregiver were three of the most joyful months of my life.

~Mary Knight

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