Note: I am not posting this story looking for sympathy. It details an experience my husband and I had one Christmas long ago. The raw wound of that time is now a gentle ache. I wrote the story a few years ago in hopes of helping others who might be going through similar experiences. A slightly different version was published in MedHunters magazine.|
A Christmas for Julie
Nancy Julien Kopp
Painful Christmases etch themselves into our hearts and minds, never to be forgotten. Difficult holiday times, which cut into the soul, linger in our memories and are brought soaring back when we least expect it. A picture, a song, or phrase triggers that which we thought was locked safely away.
One such Christmas continues to haunt me, while at the same time surrounds me with the love and peace transcended by the Christmas story of Jesus' birth.
Forty-one years ago, we were new parents. Our baby girl was born a few days after Thanksgiving, bringing us both great joy and bottomless sorrow. Unlike today, no sonogram or amniocentesis had prepared us for the news that Julie was a spina bifida baby. Because of a large opening in her spine, she was paralyzed from the waist down—legs, bowel, and bladder. Numb with shock, we agreed to the pediatrician's suggestion to transfer her to a children's hospital in Chicago, an hour from our home. "You can take her there as soon as we get the paperwork done," he told us.
With heavy hearts, we drove on icy roads from our home in a small Illinois town to the center of the big city on Lake Michigan. I held Julie close and gazed at her sweet face peeking out of a soft pink blanket. When we arrived at the hospital, a paperwork snafu in the Admissions Department gave us four more precious hours to hold and feed her. My footsteps echoed in the wide hallway as we finally carried her to the fourth floor. A nurse with a sympathetic smile gently lifted our tiny daughter from my arms and carried her through the nursery door. I will never forget the ache of my empty arms or the slow cracking of my heart at that moment. My husband's hand clasped mine during our walk downstairs as we prepared to face an uncertain future.
It was the first of many trips to the hospital where we spent special moments with our baby girl, consulted with doctors, and attempted to ease our sorrow. We grasped each piece of good news and held on tightly. We crumbled a little more whenever a doctor delivered a grim outlook for our child—multiple surgeries, a life of probable infections, wheelchair, crutches, and other unknowns.
December arrived, and each time we visited I noted more signs of the season. Garland, ribbons and bows were strung through the halls. The waiting rooms had tiny Christmas trees, and some of the nurses wore Christmas pins on their uniforms.
One Sunday afternoon when we arrived at our station outside the nursery window, we could not help but smile. A small doll was tied onto Julie's tiny crib with a cheery red ribbon. No wings, but she reminded me of a guardian angel. We questioned the nurse about the doll. Where had it come from? Who gave it to her? "The auxiliary ladies bring a gift to every child in the hospital at Christmastime," she said. "They're the same wonderful women who come and rock the babies because we don't have time." We were not allowed to be close enough to touch our child, but a stranger had rocked her in our place, and another had brought her first Christmas gift. I could not help but think of Mary in the stable holding her child close and rocking him in her arms as he received the first Christmas gifts from the Wise Men who had followed the star.
Each time we returned during that December, I checked to be sure Julie's gift was still tied to her crib. Was it my imagination, or did that doll glow? We talked to other parents who had children on the same floor. Children with heart problems, severe malformations, muscular weakness and more—our children shared the same home this Christmas. Our hearts were not the only ones breaking during this season of love and joy.
Christmas morning found us on the road to the hospital once more. Again we stood outside the nursery window adoring our daughter with our eyes, while that empty-arms feeling washed over me again. She had been placed on her tummy to protect the surgical site on her spine. Christmas music played softly in the background. Julie lifted her silver-blonde head and turned toward us, one eye open, tiny hands clenched into fists. "Merry Christmas Darling Girl," I whispered. My husband's arm slipped around me. Other parents moved through the halls spending Christmas morning with their little ones, too.
That was Julie's only Christmas, but it was one filled with the love of those who cared for her, family and friends in a small community who prayed for her, and the lifetime of love we bestowed on her during her short life. To me, that's what Christmas is all about. Love and giving and a special glow from a tiny doll with a red ribbon around her tummy remain a part of my memory of that very special Christmas for Julie.