Home is the safe warm place where someone feeds you, protects you, coos over you, and wants you to have the best life possible. I just finished assisting on a documentary that is about the opposite…”Not Home.” We investigated the lives of children who had no place to live, but institutions and nursing homes.
Two months ago, I was riveted when one of the young men in “Not Home” died in a nursing facility in Alabama. His single mother had to place him in the institution 11 years ago. Her family was in crisis and she had no other options. This Georgia mother loved her son fiercely, and would drive three and a half hours every other week to hold Zach in her arms. Nola would kiss him, bathe him, stroke his cheek and generally “coo” over him. As hard as she tried to make his surroundings feel like home, Zach lived full-time in an institution. So Nola worked desperately hard to bring Zack out of the sterile nursing facility and back to Georgia. The bureaucracy was overwhelming and time ran out. Zack died at age 25 in the nursing facility.
His story sears my heart. Zach was just two years older than my son, Phillip. They looked alike. Their childhood photos were almost identical. When Phillip was five months old, he had to endure batteries of tests, because of his developmental delays. No diagnosis was conclusive, other than cerebral palsy, like Zach. One neurologist suggested we put Phillip in an institution, because raising him could become too difficult. We knew the road ahead would be different and challenging. Secretly, I lodged in my heart the fear that someday, Phillip may end up in a facility, rather than a “real home.”
I learned to take life with Phillip, “one day at a time.” This was a huge relief for me. I had to dig deep in my soul about the meaning of love and being a parent.
I just read an article by Emily Knapp. (“Taking Care” Vogue, March 2013) She describes her journey of parenting a child with a terminal illness and articulates the gift she discovered. “To love our children wholly and truly, without conditions or strings, while learning to let them go—something which I’d soon come to understand as the deepest most wrenching kind of love.” This kind of love happens in what we know of as “home.”
Like Emily Knapp, I learned to feel like the luckiest mother in the world. It didn’t make any difference what Phillip’s diagnosis was, I loved to cuddle and cradle him. He had the same downy skin and soothing baby smells, regardless of any diagnosis. We felt fortunate again when Phillip started to move and speak around age five.
Phillip went to regular school and started developing a wonderful network of friends. Then when he was 15, Type I diabetes struck, his outlook was bleak and he became more isolated again. Surrounded by the support of his family and life at home, Phillip learned to deal with his diabetes, went on the insulin pump, and surged ahead. Today, he lives and studies on campus at the University of West Georgia, during the week. That is his choice. I remember that despite all the medical complications of his life, and his near death experiences, the day I drove away from the University of West Georgia, was the most difficult day of my life. He was no longer living in the safe nest of home, and I was learning to “let go.” That is also the lesson of what a real family and real home means. It is a haven where we live and sometimes die with dignity and meaning. Letting go is an act of love that is nurtured and fostered inside a family and home. I also have let go of my fear of Phillip having no choice but to live in an institution. I know he will be able to live life on his terms.
Like Emily Knapp’s parenting of her son “Ronan,” the experience of loving Phillip has transformed me. I remember telling my friend who lost his wife to cancer last summer, that I am not afraid of anything. I wasn’t bragging, just revealing how I’ve changed. Phillip has taught me to love fiercely, freely, and without fear. Home is the place where these true lessons are learned.