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Prologue

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Leigh Ann came quietly. My husband, Jim, was the first to touch her as she arrived fully into our world. He literally glowed as he laid Leigh Ann in my arms, this small creature with lots of dark hair and big eyes that were already fixed on mine. We held our baby close and said nothing for a long time as though our feelings escaped any attempt we could ever make to express them in words. It was one of those rare moments in my life when I would have gladly stopped time and stayed forever. What a sense of relief and joy to see the baby that had kept me company for almost a year. But in what seemed to be the very next moment my world did stop, but not for me to enjoy. It’s hard for me to think about, let alone write about, the memory of Leigh Ann’s seizures and the doctor who described all the possible reasons for them. I learned the true meaning of inconsolable that day, especially as the doctor took Leigh Ann from my arms and told me that I would not be taking her home as I had planned. Instead she would be taken to the Neonatal Intensive Care Unit (NICU) for diagnostic procedures and medical interventions.  Jim followed, determined to stay close to the little girl who had instantly become the center of our universe. I stayed behind and cried in my room for hours, waiting for any news Jim might bring. Eventually he came back, looking pale but composed, obviously worn down by the events unfolding in the NICU. I could tell he was trying his best to keep me calm, but the words “brain hemorrhage” have a way of inflicting terror despite the gentle tone in which they are spoken.

 

Leigh Ann remained in the NICU for a full week obtaining the care she needed for a brain hemorrhage that had spontaneously occurred during her birth. But by week’s end we were home with our daughter and ready for the life we had imagined apart from the regimen of medications that had to be administered in the right amounts at the right times. Unfortunately, though, things didn’t go quite as we anticipated. Leigh Ann had a few setbacks that prevented her from keeping food (and medicine) down. She was described as “failing to thrive” somewhere in her third month, which landed her in The Children’s Hospital of Philadelphia. After days of examinations and tests, we left Philadelphia with Leigh Ann, once again en route toward the life we had dreamed of having with our baby. This time the dream was fulfilled.  

 

Leigh Ann made a full recovery and was as precious a baby as babies come. She filled our lives with gratitude, wonder, and extraordinary love as she evolved from baby to active toddler. Jim had long since returned to work and Leigh Ann and I went about our lives discovering every back road, park, and activity designed for children. We passed the days with books, chores, and every neighborhood toddler with mom in tow. From the outside life looked great, but slowly and unimaginably the dream of living happily with a healthy baby faded as reality took hold: Life with a toddler is demanding. The dream I had once envisioned never included the physical care, housekeeping, patience, chores, sacrifice, mental focus, and discipline a child needs on a daily basis. The dream left out how my friendships would wane and my self-esteem would falter. For this, and so much more, I was not prepared. Nor was I prepared for the onslaught of conflicting feelings and angst that grew greater, though intermittently, with each day I spent at home with my daughter, and more noticeably in the years that followed when my family grew to include two more children, Laura and Daniel. I was overwhelmed with work and frozen in a place that excluded me. In an indeterminable moment I must have let go of my “self” to fully assume the role of mother and all that it entails. However, for years I grieved the sense of self that I lost. I grieved deeply, unsuspectingly, and alone. 

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