An Unexpected Gift
“Crazy, right?” whispered the mother standing next to me in “Nursery A,” the room in the NICU for the smallest and sickest newborns. I noticed her baby in the next isolette. With his eyes still fused shut, oversized wool cap, and probes adhering to his translucent skin, he looked like my triplets. Tiny but mighty. I learned that her name was Crystal, and her baby was also born four months too early. As one of the few mothers of “micro-preemies,” we quickly formed our own little club.
I would see her in the “Family Room,” where parents slipped away from their child’s bedside for a few minutes to make calls, to cry, or to stare blankly at the television, lost in their own thoughts. Sometimes we’d sit on the purple vinyl couches, sip coffee out of small styrofoam cups and share news about medical procedures our babies underwent. There were surgeries to close a valve in the heart around Christmas and laser treatments for tiny eyes where blood vessels were growing abnormally.
There were also the milestones, too, like when our babies grew big enough to cradle their tiny heads and feet with our hands, or to fit into newborn-sized clothes. Over time, my infant sons started to move through the myriad of preemie challenges in a linear path. They fought off infections and learned to drink from a bottle and breathe simultaneously. They were finally cleared to come home with us, weighing no more than 5lb each and trailing tanks of oxygen. This was success in the NICU.
But for our daughter Julia and Crystal’s son, with their chronic lung disease, it was a different story. They would show weeks of improvement only to fall apart. One of our favorite doctors, once a physician for the military, would tell us in his straightforward and encouraging way, “Good things happen slowly, bad things happen quickly.” While meant to be a pep talk, these words haunted me.
Not long after our conversation, as I was holding Julia wrapped in a blanket of miniature pink roses, I felt her quick breathing in my arms, and noticed she would not open her eyes. X – rays and blood tests confirmed that her lungs, scarred and inflamed, were failing her yet again. In a brief conversation in the hallway, Crystal shared similar news about her son. For both of us doctors began discussing inserting a tube in the trachea, for “longterm ventilator support.”
One early morning I sat by Julia’s isolette feeling helpless and afraid. Across the room there were a group of doctors and nurses in a huddle, and in the center was Crystal. I noticed the wires connecting her son to another machine, but what stood out more was how she was dressed–in a lilac suit, maybe silk, her hair coiled upwards in braids. It was Palm Sunday; I had forgotten. She walked over to me and held out a long green object which she placed in my hands–a cross formed of palm leaves. She stood silently by Julia for a minute, perhaps praying, while I tucked the cross into Julia’s isolette, next to the rosary from her grandfather.
I did not see Crystal much after that day. My mornings became filled with therapy sessions for my boys who showed signs of developmental delays. When I would arrive at the hospital in the afternoon, I felt late and all business.
But on the evening before my son was to have another eye surgery, my husband took a call outside. I convinced myself that his silence was due to our chronic anxiety over yet another medical issue for our children, but that was only part of the story. Waiting in the cafeteria, my husband gently began to tell me what I knew in my gut to be true: the night before, Crystal’s son had passed away.
My head could process what my heart would not. I had shaped an image after first meeting this other preemie mom in which we were standing in a playground, talking about those “crazy NICU days” while our children ran around together in front of us. We’d make plans to meet the same time next year before hugging goodbye. It was an image that allowed me to cope all these months; I wasn’t ready to let it go. It became much harder to leave Julia at the hospital now, as much as my boys, left in the care of my mother, needed me at home. I would leave the t.v. on overnight because the quiet terrified me. I’d wake at 2:00 am every night to call the hospital.
But I was bracing for something that never came. Julia, slowly and steadily, started to improve. After five months, she was transferred to a rehabilitation hospital a few minutes from our home. Crystal’s cross travelled with her. Eventually, her lungs improved enough that she could be off the ventilator for half the day. She received special education services (“Baby School” as I called it), and learned to sit up by herself. On the day she came home, a few days short of 18 months, the nurses applauded. I could have sworn an image of Crystal in her lilac suit flashed before me.
Ten years have passed now, and I think about Crystal almost daily. When I see Julia running outside with her awkward gait and laughing brown eyes, it strikes me. Over time, I’ve befriended other women whose children have special needs. There are times I’m tempted to share what I’ve learned–that good things can happen slowly, that miracles are real. But life has taught me that this is all a mystery, and sometimes the best way to pass on that cross is to be quiet and listen.
Anne Marie Cellante is the mother of four children- a spirited set of 11 year old triplets with special needs (two boys and a girl), as well as a lovely, “neurotypical” eight year old daughter. I was an elementary teacher for ten years, but my personal journey has shifted my passion towards special education. I’m moving at a snail’s pace to obtain this new certification, but going forward nonetheless. I reside with my family in Tarrytown, NY.