Hannah was born October 14, 1996, weighing six pounds two ounces. After two days in the hospital, she came home to the nursery that my husband, Pierce, and I had prepared for her at our house in Dallas.
Hannah was a good sleeper right from the start and took to nursing easily. But she didn't move around and kick like I'd seen other newborns do. At her two-week checkup, our pediatrician expressed concern about her muscle development. Then, a week later, Hannah was diagnosed with spinal muscular atrophy, an incurable genetic neuromuscular disease.
Pierce and I devoted ourselves to caring for her. We exercised her arms and legs, and took her on long walks to stimulate her senses. "What did we do before we had Hannah?" Pierce asked me one morning as she lay in bed between us. "I can't remember," I said, stroking her downy skin. We laughed as Hannah cooed and reached out to grab my finger.
We were encouraged when she still appeared healthy at three months. But as the neurologist expected, by the time she was five months she couldn't swallow or breathe on her own. She went on an oxygen machine, and we had to tube-feed her. Even smiling took more strength than she had to spare.
Hannah slept most of the time, with Pierce and me gazing down at her in bed, ready to comfort her if she seemed restless. The hospice nurses prepared us: Hannah was dying.
One night when she was seven months old, our daughter had an unusually difficult time breathing, waking every hour distressed. We were relieved when she finally fell into a calm sleep. "She looks so peaceful," I whispered. Pierce smoothed Hannah's dark hair, and joy fluttered within me to see her looking so beautiful, even if it was for the last time. Hannah died the next morning.
At the funeral I was amazingly composed, glad to talk to everyone who came. But when had I ever had trouble talking about our precious baby girl? Even now I found joy in telling stories about her.
Back at home Pierce and I stood in the empty foyer. There was nothing more to do. No more feedings, no medicines, no arrangements to be made. There was only silence, and time. Pierce put his arms around me. "Let's go for a drive," he said.
Somehow we wound up at a movie. We walked in and sat way in the back. I stared at the screen, the action passing before me like so many random colors and sounds. I haven't been to the movies since Hannah was born, I thought.
The sun was setting as we got into the car. When Pierce turned onto Greenville Avenue, I knew we were headed for Restland Cemetery, where Hannah was buried.
I'll never know joy again, I thought. I sat down beside Hannah's grave and started to cry. Pierce knelt next to me.
"Lucy, come back!" someone called. I lifted my head just in time to see what looked like an orange rocket coming at me. It was a dog! A short-haired orange dog, legs too short for her body, with pointed ears that stood straight up.
She launched herself at me and licked my face, wagging her tail so her whole body wiggled. Two young blond-haired boys stood near the fence calling, "Lucy! Lucy!" But she just danced around me, licking tears from my face and tripping over her feet. When I reached out to pet her, she kissed me smack on the lips.
"Yuck!" I exclaimed and wiped my mouth on my shirtsleeve. I tried to hold the excited dog at arm's length. Pierce tried to intervene, but she squirmed right out of his hands and got me square on the kisser again. I felt something inside me loosen, and I started to laugh.
"Lucy, leave those people alone!" the boys called. Lucy rolled over for a tummy scratch. Pierce obliged. Her tail waved back and forth, flattening the grass.
"She's not bothering us," I called back. Lucy licked me on the nose and then dashed back to the boys, who joined their family at another grave. A baseball pennant flapped on the fence near them, and I watched Lucy try to catch it. On the way home I shook my head over that spunky little dog. Well, she made me laugh, I thought. I'll give her that.
The respite from my grief didn't last. Without Hannah, I opened my eyes in the mornings aching for some reason to get up. Everyday errands seemed pointless. I moved through the hours on automatic pilot, numb and without any enthusiasm.
One day I was going over a list of recommended books on grief, and one in particular caught my eye. It was written by a counselor I'd met through the hospice chaplain. Reading her book, I could see she truly understood what I was going through. Still, Hannah had been dead only six weeks, and I couldn't bear to think of the lifetime without her that lay ahead.
"Maybe I need to join a support group," I said to Pierce one night. He encouraged me to give it a try. "For me, talking to you is enough, Stephanie. But maybe you need something more," he said.
I had high hopes when I arrived at my first meeting. The group leader talked about common stages of grief so that we would know what to expect and offered suggestions for getting through each one. I returned for the next session. Gradually I got to know the other parents and hear about the children they had lost.