We published Bonnie Peters’s short story, “A Hole in the Roof,” several weeks ago. Here, she speaks with us about writing and raising a daughter with disabilities.
What was your inspiration for your short story “A Hole in the Roof”?
Years ago, I taught a Sunday school class my daughter Sara attended. Mark 2:1-12 was to be the story for the week and as I read and reread the scripture to prepare, the words bothered me. I knew the story held an important truth, but I was afraid the students and most importantly Sara would only see the literal message – that Sara or her family had sinned and the punishment resulted in Sara’s physical disabilities.
I solved my problem the coward’s way by skimming over Jesus’ words to the paralytic and emphasizing the message of how far we might go to help our friends. The story tells about faithful friends lifting up a full grown man to the roof of a house, and then tearing a hole through this roof to lower him to a place of healing next to Jesus. The tale inspired me. The words sin and forgiveness frightened me.
Not long after the Sunday school incident, Sara and I were shopping. As I pushed my daughter’s wheelchair between racks of clothes in a department store, an employee walked up to us. Without even a greeting first, the man offered what he must have felt was life changing advice. “If you had more faith, she could walk.” He no doubt meant well, but my anger at the man’s insensitivity kept me awake for many nights.
I held these two events inside until I worked them out in a story. As always, the characters took off in their own direction. I never resolved any major spiritual questions, but the scripture is no longer scratching at my heart.
I love the way you link a mother’s desperation for her daughter to be well, whole, healed with the biblical story of the friends who lowered a crippled man through the roof so that Jesus could heal them. The ending of your story has so much pathos, with your main character Anna realizing that she, too, would do whatever it took—anything—if she just knew where to look to find healing for her daughter. Can you talk a little bit about your artistic impulse in leaving this aspect of the story open to so many different possible interpretations?
When we first adopted Sara, I had the arrogance to question how any mother could give up their child. Because I couldn’t understand it, I wrote about it, trying to experience life from the eyes of a mother in a different place than the one I have enjoyed. I wanted to know her emotions, her questions. That is why I read stories. That is why I write stories—not to tell my story, but to feel their story. I didn’t want to tell the reader what decision Anna made; I wanted the reader to feel the pain of having to make such a choice and ask herself what decision she might have made under similar circumstances.
I grew up in a Leave it to Beaver, Father Knows Best, Cosby Show type family. It is easy for me to love God as my Father because I have a fabulous human father that I honor. It was easy for me to adopt and care for a child with severe disabilities because I grew up with a mother that nurtured and loved me. As an adult, I also had support all around me, the support necessary to cope with the not so normal aspects of parenting a child with disabilities. My husband and I had everything we needed to walk, climb, and lift another person to some level of healing and comfort, and that is what Jesus expects us to do.
As a teacher of teenagers with disabilities, and as a mother to a child with similar disabilities as Marah’s, can you talk about the unique challenges a single mother of a child with cerebral palsy and possible mental retardation faces? Are there resources out there to help her?
As a teacher of children with mental and physical disabilities, I knew how difficult parenting a child with many needs would be. And I was quite certain that I would never be up to such a task.
My husband and I gave birth to an adorable little boy and when he was five, decided to adopt a little girl from Korea. God had other plans and led us to Sara. In spite of my reservations, it was love at first sight.
Sara became our daughter when she was three years old and lived with us until she was twenty-four. She has spastic cerebral palsy that involves all four limbs and is also mildly mentally challenged. At first, Sara only had a vocabulary of ten words. But competition with her new brother caused rapid growth in her expressive language abilities. She learned to speak so she could tell her brother what to do or not to do and then tell on him when he wouldn’t comply with her wishes. As with all children, you laugh, you cry, you are amazed, you are sometimes even horrified by the things they do and say. I think these moments are intensified with children who have disabling conditions. Sara has inspired me, energized me, frustrated me, and exhausted me.
With her big hazel eyes, thick brown hair, and a beautiful smile, Sara could and still can charm the most hardened personality. When tickled by something, she laughs from her belly. When Sara is angry, she can scream with a pitch just shy of breaking glass. She is a master manipulator, very observant of details, and has bionic hearing when it comes to things you don’t want her to hear. She loves to know what is going on in everyone’s lives and then tell everyone else. I learned to not skinny dip in my backyard pool ever again if I don’t want Sara’s entire elementary school to hear about it.
I didn’t find the challenges of parenting a special needs child too daunting early on. For one thing, I knew our daughter had cerebral palsy before she was our child, so there weren’t any expectations shattered. I also didn’t carry the guilt many mothers mistakenly feel after giving birth to a child with disabilities. Because Sara was a special needs adoption, financial support had been set up for us even before the adoption took place. If Sara had been born to me, I would have had to seek out and maybe even fight for the financial help.
I don’t want to sound like it was an easy twenty- one years while Sara lived with us. It wasn’t. The stress of constant care-giving built over time. Sara was tiny for her age, yet the necessary tasks of diapering, dressing, bathing, and lifting her from one position to another quickly became exhausting even with the help of her father. At ages three, four, five, even six – it wasn’t much of an issue. By the time Sara was a teenager, I was building up some muscles and tired of wiping her butt.
When I worked, I had a part-time helper assist me in the afternoons. Still, I had to take time off to drive Sara to appointments at orthopedic clinics, neurology clinics, and wheelchair clinics. Sara had physical therapy, occupational therapy, and speech therapy. So far she has needed six major surgeries with week -long hospital stays and two or three outpatient surgeries. The home care after the surgeries was often brutal. I found myself sobbing uncontrollably after spending too many nights of getting up every two hours to change her position and/or to clean diarrhea out of the half-body cast the doctors had bound her in.
Sara became the major focus of our lives. She had to be. We made time for our son, but probably not as much time as we would have had his sister been more physically able to do things. Family vacations had to be limited to ones that didn’t include hiking, biking, kayaking, or going anyplace lacking in wheelchair accessibility. Otherwise, one of us needed to be left behind, making the vacation a little less family oriented.
Wherever we went, Sara was given plenty of positive attention. A cute little girl in a pink wheelchair is not a threat or scary to even young children. People were very accepting, accommodating, and helpful the majority of places we went. They often went out of their way to speak to her, tell her how cute she looked.
I still remember the time we attended a county fair. Alden wanted to win one of the huge stuffed animals and tried many times at various booths—penny toss, shooting range, balloon busting, etc.—but only managed to win a tiny plastic toy. My husband and I gave him the “you can’t win them all”, “the fun is in the playing, not the winning” talk and he was buying it until one of the carnies took pity on Sara. She had also been playing the games with a lot of help from her dad, but still hadn’t come close to winning even the smallest of prizes. The man at the penny tossing booth gave Sara one of the coveted bears, a brown teddy as big as she was. Alden smiled, but I could see how invisible he felt.
Life is much easier now. Sara moved to a group home four years ago at the age of 24. Her home is next to the school where I teach and we see each other a couple of times a week. She manages to text or call me a couple of times a day, and attends all family and holiday gatherings.
We—myself, Sara’s father, step father, brother, step siblings, and the extended family- are all so thankful to have Sara woven tightly within our lives. The difficulties have only made the fabric of our existence richer, rarer, and more luxurious. But I am well aware of how much easier our journey with Sara has been because of the support system we have been graced with.
Do I understand how Sara’s mom could make the decision to give her up? Yes, I believe I do. My heart breaks for all the Annas out there living in circumstances that require them to even consider giving up their child. I applaud their bravery and their sacrifice for making a selfless choice, either direction they take.
Did you worry about how Alden might have responded to your choice to adopt a child with disabilities, given how that rearranged the focus of your family?
I worried about Alden feeling slighted until he showed me a paper he had written his senior year in high school. Alden was asked to write about the most important year of his life. He wrote about the year we adopted Sara, 1987.
In his paper, Alden told about some of the frustrating times. “If I felt like jumping right into something and Sara was with me, I couldn’t because of her needs.” He mentioned the disappointing times. “They (friends and their siblings) could play on the swings or go swimming in the pool and play basketball outside, but I wasn’t able to enjoy those things with my sister.” But he concluded on a positive note. “Even though there have been tough times, I wouldn’t trade it for anything. Sara has made me a better person, and I thank her for the things she has taught me. ”
Do you have any regrets about how your family responded to the challenges of raising a child with disabilities and a child with no disabilities?
Giving birth to my son and adopting Sara are two of my greatest blessings. I didn’t and don’t always appreciate those blessings. When Alden became a teen, I had regrets about giving birth to such a mean, disrespectful, ungrateful human being. I questioned the sanity of anyone who even thought about having a child. Why give birth to someone who hates you? Sara to this day can become so frustrated and angry that she takes it out on anyone close enough to scratch or be deafened by her piercing screams. Those are times I daydream about life without a disabled child. But my moments of regret are fleeting. I thank God for both of them, 99% of the time.
What stories are you working on now?
Two months ago, my husband (Sara’s step father) and I were given the opportunity to share our home with a young man who didn’t have one. It has already been an emotional ride, full of ups and downs and swift turns. John and I are old enough for AARP cards and having a teenager living with us brings back feelings and fears we had long forgotten.
Our new charge has seen plenty of difficulties in his seventeen years, and his life story has motivated me to write. I don’t know where his character will lead me. I’m not sure if we will stick close to the truth or if a new story will appear in the writing.
I am also revising and updating a couple of young adult books I wrote years ago.