“She has six months to live, maybe nine. You should probably get your family affairs in order; it won’t be long now.”
The doctor stood to leave and said, “I’m sorry.”
I stared into the white barren walls of the hospital room trying to avoid soaking in the news. I stared for what seemed like hours until my older sister Heather broke the silence.
“What are we supposed to do now?”
No one answered her and my eyes quickly found my older brother Michael. Once our eyes met I had the smallest hope of surviving, knowing he would be with me. Heather looked at my father, hoping for some sort of answer but this would be the news that would finally shatter this stoic man. I could see the tears in his hazel eyes as he, too, stared into those same walls, yearning for some response from the white surroundings. The silence was unbearable yet comforting, for there was nothing left to say: my Mom was dying. We had all been here before; her being in the hospital was nothing new. The uncertainty of her health was familiar to all of us, but the doctors had never been so adamant about a time limit before.
The TV rumbled in the background and the usual stale coffee pot was still burning with the no-name brand powder creamer by its side. My eyes darted from Michael to Heather to my Dad and back to Michael again. These were the times when we all shut down and no one would say a thing. There would be deafening silence but an entire exchange was happening beneath the quiet stillness. I hated these moments and always felt such uncertainty and seclusion from the rest of the world. Why couldn’t everything just be normal? There had always been this darkness that chased us around like a pesky fly at a picnic only to be swatted away for brief periods of time.
“Dad, what did the doctor say?” I asked staring at my father.
My father’s face turned ashen but his eyes had an unfailing strength.
“Well honey,” he said and then took a deep breath and let out his familiar sigh, “Mom is not doing well and the doctors are not sure if she is going to make it.”
As the words passed through my ears and into my head, I felt a familiar numbness come over me. It was the comfort of loneliness that would cleverly sneak inside me and I would welcome it every time. The isolation of caring for a sick parent when you are only a child yourself is agonizing. Many days I would come home from school only to find my Mom in bed resting because she did not have the strength to cook and clean or play with us.
“What will we do without her?”
My question was answered with silence. I knew better than to ask; I had asked these questions several times before and never got an answer, so why would this time be any different? Even at the age of nine you begin to realize that some questions simply have no answers.
My older sister Heather, who at the age of ten had already taken on the burden of being the “Mom” of the family, said, “We will all be fine, now let’s go say goodnight to mom and go home and get some sleep.”
I could see the tears she was desperately trying to hold on to and I wondered why I was here. As we walked down the white and gray hallway, I thought how strange it would be to never see my mother again.
“She’ll be fine,” Heather said as she put her arm around me and smiled, as if knowing exactly what my thoughts were.
We walked into the private room in the Critical Care Unit where my mother had been now for fifteen months. I gently pressed open the metal handle on the hospital door leading into her room and could see her sleeping in bed, breathing through an oxygen mask while several medication lines hung from her IV pole. On her nightstand were several Get-Well cards, some beautiful red roses from my Dad, her hairbrush and the plastic pink pitcher filled with water and ice chips that she always wanted nearby. Hearing us approach her bed, she awoke and said softly, “Hi guys, did you get something to eat?”
My Dad kissed her on the forehead and gently stroked her silky black hair.
“Yes,” my father said, “we just came back from the cafeteria; we had the usual. How are you feeling?” my father asked gazing into my mother’s eyes. She was, after all, his soul mate.
My mother, Mary Anne, was born, according to the records, Anna Mae Feldermann on June 21, 1941. Her biological mother developed her own heart condition during her childhood and due to her deteriorating health, could only care for my mother for a few months; my mother then became a ward of the state of Massachusetts at the age of 6 months. May Anne’s first memory was living with an elderly foster family for some time. She recalls coming home one day and her foster parents asked her if she wanted to go live down the street with a nice family who could better care for her. At the age of 5 she had lived with this nice younger family for a year or two until, again, one day she came home and found her bags packed. The social worker was to shuttle her on a train from Massachusetts to a small town outside of Doylestown, PA. Her new family had a wonderful father and a young daughter about Mary Anne’s age. ‘Could this finally be her permanent home?” she thought as she arrived at the new beautiful country house. She was in awe as she gazed at the lavish green grass and rolling hills that seemed to cradle the brick home. Her new foster father took great interest in Mary Anne’s life and she was finally feeling at home somewhere.
As time passed, her foster sister became increasingly jealous of her own father’s interest in Mary Anne and soon she was transferred to another home in the Doylestown area. She was now 10 years old and a woman named Pearl S. Buck had heard of her wearisome childhood experience and took her into her care through her organization known at the time as Welcome House. Then the day finally came at the age of 11 when she was to find a permanent home with Helen Ruth, my grandmother. This was it, she thought, she finally had a home.
Helen was very active with Welcome House and always had foster children living in her home. Helen had three biological children as well as five foster children when Mary Anne arrived. My mother often wondered why she was not adopted until the age of 21 even though she had arrived at Helen’s house when she was 11. She initially thought she couldn’t be adopted because the state required consent of a biological parent. Many years later while talking to one of her brothers she would discover the real reason.
“Mom always kept the foster children as long as possible because she received a significant stipend for each of you,” her brother said.
“What do you mean?” my mother shuddered.
“Well, if she adopted you guys, she would lose the monthly income.” Her bemused look revealed she did not fully understand. He continued, “The rules required her to adopt any foster child by the age of 21 because that’s when the stipend for foster children ran out. You never knew that?”
It was information like this that would compound her feelings of insecurity and continue to plague her throughout her life. The remaining details of my mothers’ childhood are etched on several social workers notepads in the state of Massachusetts. Several attempts have been made to try to uncover more details of her childhood without avail.
Mary Anne managed to maintain a somewhat normal life for several years. She found love, completed her nursing degree, and would have three children. It was in her mid 20’s that she began to feel like something was wrong. One day while riding her bike, she noticed that she was unable to ride more than a few blocks without having to stop and catch her breath. She had noticed this shortness of breath off and on for the past few years but was reluctant to complain and assumed she was just “out of shape.” Eventually my father began to notice that something was wrong and urged her to see a doctor. It was several years later that she was finally diagnosed with a rare congenital heart condition. Many doctors had misdiagnosed her and told her she had a rare lung disease or bad asthma. She was in her mid 30’s when the doctors realized what was finally wrong with her. She would be admitted to the hospital off and on for several years as her condition worsened until now when her heart could no longer function on its own.
“I’m doing fine,” my mother said as she reached for my father’s hand.
“Are you sure you all had enough to eat?” she persisted.
“Yeah, mom, we are fine; don’t worry about us,” my older brother Michael said in his calming and comforting way.
“So what did the doctor say?” my Mom asked, looking intently at my father.
“He said you are getting worse and that things do not look to good right now, but we all know you will be fine.”
My mother had already outlived the doctor’s predictions, and we knew she was not going down without a fight. She turned her head and stared out the large window into the dark and rainy night and she said in a low and soft voice, almost to herself, “They don’t know what they’re talking about.”
We all remained silent; not one of us ever questioned her will to live.
It’s now six years later and I’m in this god-forsaken hospital room again, staring at my mother with her labored breathing, oxygen mask and IV lines. It’s like Ground Hog Day all over again; I’ve skipped another day of school only to find myself at my mother’s bedside, although this time she is really dying, or so they say. We were told the other day that her placement on the organ donor list has been moved up to Status One, and if she does not receive a donor heart soon she will most certainly die; that’s what they always say.
I am now old enough to realize that my mother’s health is deteriorating and I have never seen her look this bad. She is frail and weak and the task of sitting up in bed clearly exhausts her. She has been here now in the Critical Care Unit for what seems like an eternity, waiting for an organ donor match and I often wonder what it’s like to have a normal mother who cooks for you, does your laundry, and takes you shopping for school clothes. Then immediately the guilt sets in and I feel ashamed for thinking these thoughts. Shouldn’t I be grateful that she is still alive? She has managed to outlive this disease and yet I often feel jealous of other kids who have a “normal” healthy Mom. As much as her condition has been a burden to our family, it has brought us all together and made us that much closer. The threat of losing something valuable undoubtedly leads to deeper appreciation.
“Hi, honey, how are you?” my mother says to me as she tries to catch her breath.
My mother looks at me in that way and says, “Shouldn’t you be in school? You can’t keep skipping class and coming here to visit with me.”
“I know, Mom, but it doesn’t seem right for me to be in class when you’re here all alone, day after day.”
I can’t tell her that I hate every minute of it and that it’s torture to go to school. The isolation is unbearable and my thoughts are always concerned with whether my mother will be alive on any given day that I walk into this hospital room. It’s as if my visits to the hospital are somehow keeping her alive.
We spend our time together doing crossword puzzles and reading magazines and I am secretly grateful for this escape from the world.
As I watch my mother lying there struggling to breath, it occurs to me that I have been both saddled and blessed with this burden for as long as I can remember.
I ask my mother, “Which puzzle should we do?”
For at the moment I am happy to be with her and quite comfortable in this hospital room.
-Heidi Doheny Jay
“When Will I Get My Answer?” is about the uncertainty that a young girl faces regarding her mother’s health. She is both blessed and cursed with an ailing mother as her struggle to find peace and balance continues to elude her. As she grows to understand the complexity of her mother’s illness, she begins to appreciate that although she may have many questions, there simply may be no answers in store for her. This piece is a reflection on her childhood and how her family manages to remain intact over the years, despite the uncertainty that plagues them.