Summer Will Come Again

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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.

Continued on page 2: How could I think of summer when there was still winter in my heart? »