By Susan McGee Bailey
For years, mornings with my daughter, Amy, began with shouting.
“Don’t you dare come in here, Mom!”
“Mom, I need you!”
“Mother! Where are you?”
Most mornings a familiar uneasiness in my stomach had already pulled me awake. My body learned long ago to hear Amy’s cries before any sound registered consciously. Since her birth more than forty years ago, she has survived complicated surgeries, spent endless months in rehab centers, and endured painful therapies. Her father and I made different choices when she was young. We divorced. I made a life with Amy on my own. I long for answers, for solutions to the difficulties my child confronts. But as is the case for most people with developmental and physical challenges, there is no single diagnosis. There is no silver bullet that can address all my daughter’s medical, emotional, and intellectual needs.
Years ago Amy moved from home to a more independent living situation in a group house, then home again when the anxiety of rotating staff became too overwhelming. We tried other group situations with similar results. Now she lives in a shared living situation with a young couple. Together we celebrate each new aspect of her independence: carrying her own house key, presenting her CVS gift card to the clerk, laying out her clothes for the next day. But I still jump up in the dark, half out of bed before remembering the sounds that awakened me are no more than the rustle of a birch branch or a breeze stirring the porch rocker. Some nights I fall back on the mattress and sleep. Other nights, I’ve fallen too far awake. Amy is not here. The house is empty and silent. A passing car breaks the stillness, a dog barks in response—daytime sounds out of place in the lonely night. I rock on the porch, hug my knees, and try to banish images of Amy calling for me.
One memorable weekday morning when Amy was in her late twenties, her voice was unusually loud. “Mother, I need help! Now! Right now!”
“I … am… coming…Amy. I…am…here!” I hoped my voice was both audible and calm. Without her hearing aids, Amy hears only loud voices, words spoken a beat slower than normal.
Amy’s bowel problems, the ones that first developed when she was fifteen, had been worsening for several years. The many surgeries designed to help, instead weakened the muscles in her rectum. Controlling her bowels required constant vigilance to avoid daytime accidents. This success consumed her energy, increased her severe constipation, and worsened the nighttime situation. Four or five mornings a week she woke up with her body, her bed, often her walls, a smelly, smeared mess.
That morning I was glad it was winter. Every window was shut. Her agonized sobs, angry words, and slamming of doors would not disturb the neighbors. I would open the windows in her room and the bathroom before we left for her day program, never mind what it would do to the heating bill. The new deodorizer I’d paid twenty dollars for barely made a dent in the stench.
Once Amy was showered, shampooed, dressed, medications taken, bedroom and bathroom clean, her bedding in the washing machine, it often required the bribe of a store breakfast to get her out the door. By the time we’d reached the car that morning I was exhausted and close to tears. How would I make it through the workday?
The meeting of the project directors’ group at the feminist research center I directed hovered uneasily in my head. I needed time to think, to go over my planned remarks, but at this rate everyone would be assembled and waiting before I arrived. They would understand. Many had children. Those who didn’t were equally committed to a work environment that provided space for children, for families, for emergencies. Still, I didn’t want to take advantage of my position. The mornings when things went smoothly with Amy were fewer and fewer. She was not improving. New rounds of medical appointments would need to be scheduled.
I took a deep breath and started the car, trying to focus on the moment, not my meeting or Amy’s medical problems. “Where should we go for breakfast this morning, Amy?”
“I don’t care, I hate you! You are an ugly, stinky mother! I hate stinky!”
“It’s okay, Amy. What about Vidalia’s?”
“No, I say the Coffee Mug!”
The Coffee Mug was actually named The Clever Monk, but Amy’s hearing loss makes fine distinctions difficult. She often misunderstands words she does not know or has not heard before. She has always insisted the little shop was The Coffee Mug. When a couple of attempts to correct her resulted in angry shouts of “No, you are not right! I am right!” I surrendered to her certainty.
Two men on a ladder were putting up a new sign with the name “The Clever Monk” in large gold letters as we arrived. Amy was distracted from her anger, her blueberry eyes intent on this new activity. She rarely failed to embrace the excitement of the unexpected.
“Mother, look. They don’t know how to spell Coffee Mug! It should be C-O-F- E-E space M-U-G, right? They have C-L-E-V-E-R space M-O-N-K! That is silly! Can I tell them?”
My hopelessness faded. I was struck by her self-confidence, her persistence. Her designation was a more accurate description. Should I try to explain again that her version of the name was wrong? Should I use this opportunity to correct her spelling of coffee? I did neither. She was happy and had regained a sense of control, why spoil it?
“Amy, let’s just get some breakfast. You don’t like me to correct you….”
“Okay, Mom, I love you so much!”
She ran into the shop, her bad leg trailing a bit, her blond hair all higgily-piggily and still uncombed—my energy had failed at that final morning step. Her smile was broad, confident. “Besides, Mom, the sign looks really good anyway!”
“Yes, it does, Amy.” My smile was almost as wide as hers.
We lingered, ordered juice, coffee, warm, sweet muffins. We watched the painters. Amy’s day program and my office could wait.
Moments of joy must not be wasted. They are luxuries to be savored.
Susan McGee Bailey is a writer and a feminist. She directed the Wellesley College Centers for Women for 25 years before retiring to spend more time with her daughter and study creative nonfiction at Grub Street in Boston. Her non fiction has appeared in MS Magazine, The Boston Globe, and Gulf Stream. She is working on a memoir, “The Education of a Feminist.”
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Susan, I had no idea this was your life. You handled it with such grace ! I worked at the center for 12 years from 1989 / 2001. It was such an amazing place to work – we were all supported and valued ! I miss it every day /