"Only the God Knows" -Sally Ann Slivinski: A Burden or Blessing?

By Susan Littmann

Only the God Knows is a labor of profound love. Despite what appeared to be an unnecessary burden to many outsiders, caring for Sally provided our family with insight, compassion, and a deep trust in God. In a remarkable parallel to Flowers for Algernon’s main character, Charlie Gordon, Sally defied the predictions of her medical staff by overcoming the debilitation of a genetic disorder and transforming from complete dependence as a child to a productive member of society. Like Charlie, Sally’s life ended tragically—hers the result of a traumatic head injury that occurred during her early adolescence. In addition to a biographical lens that peers deeply into the life of an individual with multiple handicaps, Only the God Knows provides a historical handbook that critically evaluates the ongoing development of the various agencies involved in supporting our nation’s disabled population. Only the God Knows is intended to provide struggling families, experiencing frustrations similar to ours, with knowledge, awareness, and determination in order to independently research and seek the appropriate services that extend beyond the well-intended advice of professionals in the field.

• Language: English
• Publisher: Covenant Books, Inc.
• Release date: Jul 16, 2021
• ISBN: 9781638143024

Book preview

Chapter 1

I Have Arrived!

February 21, 2015, 9:00 p.m.

The agony disfiguring my sister’s suffering face engulfs my soul with despair. A solitary tear rolling slowly down Sally’s cheek tells me that she is apparently as sad about her passing as I am. I’ve heard it said that hearing is the last sense to leave before one’s departure from this earth. Sally, deaf since birth, is at a significant disadvantage even in her dying moments. My decision to attach her cochlear implant sound processor is my final, frail attempt to somehow enable her to hear my last words of love and encouragement. She is on death’s door.

Hospice workers, caregivers, and extended family are gone for the night. Even my husband went to bed, exhausted from the strain of having someone so near to her end of life in our home for so long. Yet we wouldn’t have had it any other way.

Sal and I are alone—the sister I prayed and hoped for during the first ten years of my life and me. The rosary prayed while sitting at Sally’s bedside still hangs from my hand. The only thing left to do is to crawl into her bed and hold her close in an effort to keep her warm just as I did when we shared a bed as children.

Like a precious gemstone, certain people dazzle our hearts with a radiance that lasts a lifetime. My sister held that status from the moment I saw her and as we embarked toward our unimaginable destiny.

Sally Ann Slivinski entered our world on a gloriously sunny, fall Monday, October 13, 1958, at 2:51 p.m., in the Milwaukee Maternity Hospital to our parents, Leo Albert Slivinski and Rita (Buchholtz) Slivinski. Leo, a World War II veteran of the Pacific Theater, worked as a machinist at Cudahy’s Ladish Foundry. Rita, the valedictorian of her high school class, was a stay-at-home mom until Sally’s birth. After ten years as an only child, I received God’s answer to my prayers for a sibling. This beautiful addition to our family arrived two days before my own birthday, which made Sally the best gift ever!

On the surface, Sally’s delivery seemed uneventful. She weighed six pounds, ten ounces and measured twenty inches from head to toe. Sal appeared to be a normal baby except for a two-day incubation period to alleviate some excessive mucus in her lungs. In addition, her sparkling green eyes were crossed—a condition described as lazy eye.

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The medical term for this disorder is amblyopia.

In 1961, when Sally was a toddler, Rita and Leo agreed to have a surgical procedure to correct this defect. After the operation, everyone mistakenly believed that Sally was on her way to a normal life. In the summer of 1962, an abrupt upheaval of those rosy presumptions took place. Our family was gathered in my parents’ living room when a thunderstorm roared through Milwaukee. A powerful explosion shook the house when lightning struck nearby. Everyone in the room shuddered. Sally, just learning to walk, was unfazed by the deafening sound. My parents looked at each other in disbelief as they realized that their beautiful daughter must be deaf. The next day, Mom and Dad phoned Sal’s doctor. Thus, her journey into the world of disabilities began. Dr. Francis Miller, a neurologist at Milwaukee’s Children’s Hospital, ordered immediate testing. He became the first of many specialists to join the ranks of Sally’s future consultants. No one at the time could have guessed how involved her journey would eventually become.

After my years of training in the area of handicapping conditions, I now realize that there were early signs of her deafness, which no one at that time fully understood. For instance, Sally would rock her head in bed each night until she fell asleep. This behavior became so pronounced that she actually wore the hair off the back of her head. At the time, my family described this action as another of Sally’s idiosyncrasies. Looking back, I understand that she was using self-stimulation to feed a sensory need, which in my sibling’s case was a hunger for auditory stimulation.

Plunging into Sally’s new world forced our family to discover in no time that raising someone with a disability was a family pursuit; Sally’s handicaps forever altered the lives of those in our immediate family as well as many other individuals who surrounded us in our situation—sometimes for the good and other times for the bad. As an adult, I became aware of a sad consequence of the profound negative effect that Sally’s disability had on our family. My mother confessed that she often contemplated suicide during Sally’s early years. She contemplated whether she had done something wrong during her pregnancy, which resulted in all the physical, emotional, and mental challenges that Sally had to endure throughout her life. Ironically, my parents would never know the real cause of all of her problems. An operation that took place in my sister’s forties eventually revealed her underlying genetic malady.

Thank God that Mom chose to be strong. After Sal’s birth, our stay-at-home mom needed to take on a part time job in the evening in order to pay for the mounting medical bills. This left me, Sal’s older sister, and our father in charge of Sally, Mondays through Friday from 5:00 p.m. until 10:00 p.m. Even though I didn’t understand it at the time, I now realize that my role in Sal’s care became a positive impetus that propelled me throughout my life. Sally’s contagious ability to inspire eventually spread to others, as they became connected to her.

My six years of college and twenty-five years of experience in the field of exceptional education enabled me to finally understand that families with a disabled child often produce caregiving sisters and brothers, like me. This behavior remains a way for siblings to gain the attention of parents who are forced to focus so much of their energy on their handicapped child. The other option is for siblings to act out in a negative manner. Either way, these brothers and sisters find themselves desperately trying to maintain some significant role in their family.

In the 1950s, for the most part, early childhood education was nonexistent. The vast majority of families with children like Sally simply kept their disabled children at home or placed them in facilities such as the Southern Wisconsin Center for the Developmentally Disabled. Originally referred to as Southern Wisconsin Home for the Feeble-minded and Epileptics, this institution was established in 1918 (Southern Wisconsin Center). Another example was St. Coletta Institute for Backward Youth, a Catholic facility founded in 1904, which was eventually renamed St. Coletta School for Exceptional Children (History, Coletta). John F. Kennedy’s family chose the latter institution for his sister Rose’s placement, following a mishandled frontal lobotomy (McNeil 2018).

My parents decided that Sally’s best quality of life would take place at home. Like Rose Kennedy’s siblings, resentment over placing Sally in an institution would have haunted me for the rest of my life if my parents decided upon that route. In the 1950s, there were limited resources and options for individuals like my sister.

Even though Sally received no formal schooling during her early years, she definitely provided the rest of us with a plethora of information. Sally, like other youngsters with disabilities, was more like than unlike what society considered normal. For instance, she loved her family and responded positively to kindness. Sal valued friendships especially with the children next door. The Gresk girls interacted with my sister as if she had no handicap. Her treatment by Sandy, Shari, and Susie certainly contributed to success in Sal’s developmental years. These wonder women remained Sally’s friends throughout her lifetime. Afire with a sense of wonder and adventure, Sally responded to both positive and negative stimuli. Finally, Sally’s basic needs were the same as other children.

Keeping Sally at home with the family resulted in our lives revolving around her needs instead of our own. My peers throughout elementary and secondary school realized that time with me often meant time with Sally. This situation gave me an easy method of sorting through friends who were worth cultivating and those who were not. Even when I began dating, I made it clear to those interested in a relationship with me that Sally was and always would be part of the package. Only a few young men could embrace that concept, so my dating choices were quite limited.

My intelligent and driven mother did not accept the misconception that children like Sally were ineligible for public education. She chose to fight alongside other parents in our situation for some form of schooling for their disabled youngsters. This group of game changers finally opened up a class through Easter Seal in 1964 where Sally received formal instruction. Sal and her peers participated part-time in the program since professionals at the time mistakenly believed that people like Sally were only able to tolerate a few hours of schooling per day.

Easter Seal’s operational history in Southern Wisconsin dates all the way back to the 1930s. Their vision was always to create a community that promotes health, happiness, independence, and safety by providing individuals with disabilities increased opportunities for access, inclusion and choice (History, Easterseals). Parents during that time period would have been utterly lost without Easter Seal’s guidance and support.

When Sally was ten years old, I married Richard (Spike) Littmann on February 24, 1968. Spike stood by his commitment throughout our years to protect not only to me but also my sister.

Several months following our wedding, while playing on an aluminum slide on our parish playground, Sal’s foot became stuck at the top of the slide. She tumbled over the edge and landed headfirst onto the hard surface of the playground. An ambulance rushed my unconscious sister and frightened mother to Trinity Hospital in Cudahy, Wisconsin, where an MRI of Sally’s brain revealed hemorrhaging and swelling in the lining of her brain. Her neurosurgeon performed an emergency craniotomy to relieve the pressure from the rapidly pooling blood.

Sally’s prognosis was grim, and we were warned of her impending death.

The presence of our Lord is a magnificent feeling. My time in the hospital’s chapel during Sally’s brain surgery proved to be one of those moments when His serene presence settled upon my soul. At first, I didn’t understand how God could take away the sister for whom I prayed so desperately. We had only been together for ten short years. I was angry with Him. I begged and pleaded with Him to save her life. Suddenly, I found myself engulfed in peace knowing that Sally would pull through this very dangerous surgery. After this revelation, I nearly galloped from the hospital chapel, eager to tell my parents the wonderful news: Sally will survive! After telling them my revelation, they looked at me as if I were out of my mind, but I knew that He was watching over her as He would be the rest of her life.

Little did any of us realize at the time that, along with blessings, Sally’s survival would provide more challenges and stress than our family could have ever imagined. Trust in our Lord carried us through the days and years to come.

Ours was and remains a faith-based family. All of us attended Sunday Mass as part of our weekly ritual with no questions and no complaining. Thinking back, going to church never felt like a chore. St. Fred’s (St. Frederick Parish) was a place to meet family and friends, a place where we celebrated life through baptisms, First Communions, confirmations, weddings, funerals, and the usual parish fundraisers and parties. Since my grandparents were founding fathers of this parish, our roots there ran deep. A stained-glass window that they donated to this church still bears their names etched within the glass.

Franciscan sister affiliated with St. Fred’s dedicated their lives to serving others. They gifted me and my classmates with a Catholic elementary education. It still angers me when I hear people making crude jokes about these dedicated women. Having taught school for twenty-five years, I don’t know how our nuns survived in overloaded classrooms, wearing cumbersome habits with minimal supplies. The Catholic Church owes them a great debt of gratitude.

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Like today, handicapped children in the 1960s did not have much of a presence in our country’s religious educational systems. Wonderful lay people, however, stepped up to the plate to teach and nurture them in their faith. Sally was baptized on November 2, 1958, less than a month after her birth. She celebrated her First Communion on May 31, 1970, at the age of twelve and received confirmation on April 4, 1979, when she turned twenty-one.

An amazing God incident occurred immediately following Sally’s death. A religious instructor from her early years saw Sally’s obituary in the Appleton Post Crescent published a hundred miles from where we grew up. This wonderful woman reached out to our family to tell me about my sister’s time in her religious education program. Her words brought me great comfort. God certainly works in wondrous ways—meeting our needs when we need Him the most.

Chapter 2

Life Is a Rollercoaster!

February 21, 2015, 9:05 p.m.

The house is silent except for the labored and congested breathing of my beloved sister. Sal’s extremities are dripping wet because of a cold sweat that I continue to wipe dry. How very odd that her hands and feet could be so icy when her body core and temple appear to be burning up with fever. I’m not certain if I should try to give her morphine since I can no longer decipher if she is in any pain. Sally cannot tell me if she is hurting since her voice was silenced many months ago—a side effect of a medication called haloperidol, which was prescribed to deal with her behavioral outbursts. I will never forgive myself for lacking vigilance, trusting that her neurologist would only prescribe medications without the adverse side effects we witnessed during Sally’s final years.

Sally spent months recovering from her brain surgery. Physically, she seemed to be doing fine. Emotionally, Sally