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Love bears all things,
Believes all things,
Hopes all things,
Endures all things.
Love never fails.
1 Corinthians
Apparently normal at birth, Alexis began having seizures at eight weeks. Months later, doctors predicted that she would never be normal and we would never know why. They were right. In her entire life Alexis never had a diagnosis, and she was never seizure-free.
Developmentally, Alexis was never more than a few months old. As a child, she never sat up or crawled; she never played with a toy or knew she had a birthday. As an adult, she was four-feet tall and weighed fifty pounds. She never stood, walked, sat alone or fed herself. She never said a word. By the time she died, she recognized only four words or phrases, if said in the right tone of voice, in the right context, and on a good day: "head up," "juice," "night-night," and "careful."
Alexis was a mystery her entire life. An unhappy infant, she cried constantly and spit up everything I tried to feed her. As a young child she lived in a haze, often apparently unaware of her surroundings or cognizant of familiar faces. For more than twenty years, I doubted she knew who I was. She confounded doctors and tests. She defied definitions and categories. She drove away her father and complicated her sister's life. She tested my patience, my faith and my identity.
And then just as mysteriously as she had lived, Alexis was gone. I was fifty-eight years old, and I began to search for some kind of perspective to ease the pain of losing part of my soul, of losing the child who, without words, had taught me the gentle humility of unconditional love.
Remembering Alexis, Finding Perspective in Love and Loss is a record of my search for perspective and is, thereby, my memoir. Desperate for understanding, I spent hours and weeks and months alone--remembering, questioning, scouring my heart, and reflecting. Having a special child shakes you to the core and makes you question everything about your life--your parents, your upbringing, your religious beliefs--and influences every action you take, every choice you make. It brings people into your life whom you wish you never knew. More importantly, it opens the heart for profound love. It teaches you grace.
I never knew Alexis's thoughts, how she felt about her life, or what aspect of herself she came to experience, but I loved writing what I could about her. Every day I sat at the computer and shared stories about her, I again felt privileged to be the keeper of the details of her life and was convinced of the importance of recording them to ensure she would always be remembered. Every day I wrote about Alexis, she seemed less far away.
My favorite reaction from readers is, "I feel cheated that I never got to meet Alexis," and I am overjoyed at the thought of her name being repeated over and over as people say the title of the book or tell others about our story. With the protective pride of a mother, I have chosen to share only the best pictures of Alexis. And, yes, the pictures are in chronological order, though it's hard to believe as Alexis gets older and still looks like a child.
Honesty comes naturally to me, but it's not easy sharing your life publically. Fearful voices often threatened to drown out the good intentions of my heart. But the reactions of those people who read the manuscript and said, through tears, that they saw pieces of their stories in ours, that our story made them believe, once again, in miracles, and that the courage of my honesty touched a part of them they had closed away, helped me push back the voices and gave me confidence to believe that nothing is gained by remaining small. I needed to give our story wings.
Each of us is a beautiful strand in God's fabric. Each of us has a story to tell. We learn best from each other's lives. Alexis's and my story is not more important than other people's stories. It's just our story--the only one I have to tell, the one I believe she wants me to tell. It is our hope that sharing our story in Remembering Alexis, Finding Perspective in Love and Loss helps others on their journeys. We offer it in humility.
Margaret and Alexis
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