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I never really spoke to her, other than to say hello, and she never said a word to me, not even to call my name. We never made the other laugh or cry, never basked in the other’s successes or comforted each other in times of need. In fact, I hadn’t even seen my sister in over 51 years. Yet I knew she was a sweet and innocent soul without an ounce of guile in her entire being.

Mary never lived in our house. Within days of her birth, she was driven to the home of her new “family,” a small private home for special needs children operating out of a converted old farmhouse, and responsible for the welfare of a dozen or so children. The facility was located in the mountains, 100 miles north of the city. In 1950 pre-turnpike America, that meant a 4-hour drive. Much of the route rambled along winding mountain gullies that served as a no-man’s land between an endless string of nameless hamlets – each resembling the one before, and none possessing much distinction. A one-pump gas station occupied a corner - a family-owned restaurant sat on another. The restaurant would offer a choice of spaghetti and meatballs, Salisbury steak, a breaded fish or a daily meat “au jus” with mashed potatoes. The meal would be completed with a pie a la mode or jello. My parents would take turns behind the wheel while my brother and I amused ourselves by counting the ubiquitous Coca Cola signs that popped up along the dusty shoulder. Those early excursions were sporadic, but always an adventure, and with each passing year became increasingly scarce.

It was my first Visitor’s Day. About a dozen children sat in the living room – some with newly arrived families, others deposited and still waiting for relatives. I glanced around the room, too frightened to attract a return stare. Many of the children had notable physical deformities. My father sensed the visit wasn’t starting off well for me. Wisely, he did his best, in a whisper, to explain the medical conditions that caused their physical anomalies. The fact that he was speaking on an equal plane to a 4 year old didn’t deter him, and his thoughtfulness and patience actually paid off. My father would do that a lot in life, which is why he maintained friendships with people of all ages. Many of my friends and my brother’s friends confided in him with a level of trust not usually reserved for their own parents. That day, he helped me understand that these children were not monsters, but rather, victims of a monstrous injustice, and that a few of the children were gravely ill. I asked him if some were going to die and he said, “yes, I’m afraid so.” I dared to make eye contact with a boy maybe 4 years older than me – about my brother’s age. He suffered from Hydrocephalus; a blockage of the cerebral aqueduct that can cause a permanently enlarged head in a child whose skull is not completely ossified. The unrelieved pressure causes brain damage, and in the 1950s, having the condition was a death sentence. The boy returned my stare with eyes filled with emptiness and sadness. I began to fear more for the children than for myself.

Her caregiver accompanied my sister downstairs a few minutes after we arrived. The caregiver introduced us and asked Mary if she would give us all a hug. One by one she embraced each of us. “Mary, this is your brother, Wally,” my mother offered. I focused on her eyes.  I had seen them before - they were mine. Mary paused and looked at me with an expression of curiosity, then gave me the same bear hug she had extended to her other family members. While she couldn’t speak, other than noises, she loved to hug people - while never letting go of her stuffed doll, “Baby.” As we prepared for the trip earlier that same day, I had held on to my sock monkey with a similar passion. Mary and I were just 2 years apart in age, and but for the physical manifestations of Downs, we would have looked like twins as we grew older. My mother noticed the resemblance, and mentioned it during the quiet drive home. I could see her eyes welling up with tears through the rear view mirror – a reaction she had not revealed before, and I was never to witness again.  

A private and profound sadness would eventually consume my mother, and cruelly define the remainder of her difficult life.

As the gap in time between visits increased, my ability to recognize Mary among the other children seemed to decrease. At that age, a child’s physical appearance can change dramatically in a matter of months. A year’s separation created a brand new face, and I found it difficult to maintain a mental image of my sister between visits. What seemed to increase was the awkwardness of each visit. Like seeing a sick friend in the hospital. You know he’d rather be resting, and there’s little to say until both of you can return to normal life. Yet, this was Mary’s normal life, and we would never get a chance to know her in any other setting. In a sense, we didn’t visit Mary, but rather, paid our respects. As little as we knew her, she had no idea who we were – not me, not my brother, nor her own parents. For the first 8 years of Mary’s life, there had been no other World beyond that dilapidated old Pocono farmhouse. Now, her current caregivers would no longer be able to maintain the assistance Mary required just to survive past her teens. Like a real-life Truman Show, it was time for Mary to discover a larger, and no doubt, frightening World.

It would be yet another 4-hour drive to the State facility in Selinsgrove.  The journey took us west to the great Susquehanna, and then followed the river north as it narrowed and became shrouded beneath massive, tree-lined bluffs with blue granite fascias. The imposing rock walls girdled the river’s young course before it revealed its full power and grandeur in the flood plains just above the state capital, and finally, yawned its way into the waiting Chesapeake. But our journey would trace the river to its northern origins where the flow became little more than a collection of twisting canals divided by tree-filled islands. An old iron bridge took us across the ford and into the center of the local town. Most of the buildings on Market Street were pre-Civil War construction with early Victorian gingerbread adorning modest brick facades. A once prosperous little farming town just west of the Coal mining region, its innate charm was frozen in a distant time and showing its age.

On the far side of town stood a campus-like collection of brick and wood buildings dotted along a barren clearing in an Allegheny foothill. The structures seemed to cascade into the unkempt valley below, settling at the Administration building, an imposing stone edifice adorned with two trailing wings extending half a city block. At its peak, the facility housed over 3,000 permanent residents and probably employed three times as many workers between caregivers, caretakers and administrators. Most positions had to be filled in triplicate to meet the demands of the three daily shifts required to maintain round-the-clock care. The recently built “Center” had become a burgeoning local industry, destined to breathe new life into the somnolent old town.

Oddly, I remember very little about the actual visit with Mary in her new “home” – all the more painful since it was the last time I would see her.

At the time of her birth in 1950, my sister was diagnosed with Down Syndrome. It was an era when no local or National advocacy organization existed for families of “retarded” children. Additionally, public awareness was dismally poor while medical understanding and care was not much stronger. Even today, mainstreaming is at best a challenge for these children and their families. Depending on the extent of the retardation and quality of the local support network, mainstreaming can still be difficult. Fifty-nine years ago, parents were ill prepared to deal with the enormity of the immediate challenge and inescapable hazards that lay ahead. At the time my sister entered the World, Down Syndrome children rarely survived past their twenties. Congenital heart defects, childhood leukemia, gastrointestinal disorders, respiratory problems, high susceptibility to infections and endocrinal imbalances were just a few of the common killers.
Virtually without support and with far too little information or time, my parents needed to make a decision that would affect all of our lives, forever.

My father was not the type of man who could easily accept such an untenable position. He could acquiesce to the hopelessness of erasing my sister’s condition, but not to the man-made issues that compounded the problem. So my father left his business for two years, and in partnership with my mother, set about raising awareness, along with over a million dollars (in 1950 money), to help start the National Association for Retarded Children. They also founded the local County Chapter of NARC and served as its first two presidents.
But the emotional and financial strain on my father led to a serious emotional breakdown that kept him out of work for an additional year and nearly cost him his career - and our family’s home.  The stress on my mother was even more profound.  She too fell into a deep depression, and suffered from the curses of alcoholism for the remainder of a long and profoundly sad life.

With all of the dedication and personal sacrifice my parents made for the betterment of the lives of these most fragile of children, they would never find peace and acceptance out of their own family tragedy. In a sense, they had lost the same child, twice, and seeing her, as I now understand, was like being haunted by the living. Perhaps they believed the pain of that loss could be diminished by not thinking about it, or simply not facing it in the literal form of their own daughter - or so they may have hoped. My parents knew better, and for all their personal sacrifice, the pain remained excruciating. In the end, nothing – not even their contributions to the greater cause, would ever take the pain away.

After that one and only visit to Selinsgrove, my mother was to be the only family member to see Mary again. The meeting occurred about 15 years ago and after a 35 year absence.  Thanks to a newly installed family outreach program, two of Mary’s caregivers were able to transport her for the 220-mile roundtrip visit to my Mother’s apartment near Philadelphia. It took two trained adults to supervise Mary when she was in unfamiliar and uncertain surroundings. The reunion was short, just 30 minutes, but my Mother was truly happy, and unexpectedly, fulfilled.

Mary would not only beat her survival odds, but also remain a resident of the Center for another 51 years. My Father died 34 years ago, and after my Mother’s passing about 7 years ago, I assumed Mary’s legal guardianship. I began to receive the same updates from the Center that my Mother had received for the last 50 years, the notes about the holiday parties, an occasional photograph or the 20 page reports concerning Mary’s perpetually deteriorating health. Every update my mother received, good or bad, had a predictable result - another losing battle with depression and another vodka bottle emptied. To her dying day, she never shared the bad news with my brother and me. It was only after my mother’s passing that I learned of Mary’s degenerative heart disease, her worsening Alzheimer’s, and failing everything else. During the last few years, Mary had been confined to a wheelchair. She could no longer feed herself and eventually required a permanent breathing tube. Finally, the hospital’s oxygen took over the task abandoned by Mary’s lungs. The untenable choices my parents had faced so many years ago now belonged to my brother and me.

Late in November, at the amazing age of 59, Mary, my dear sister, died.

My daughter and I attended Mary’s memorial service at the Center. My brother’s chemotherapy treatments left him too ill to join us. We retraced much of the long drive I had remembered from so many years ago. Halfway across the State, this time by way of the turnpike, then back up the same river road etched out of the blue granite cliffs of the Susquehanna, and finally, across the enduring old iron bridge.  The ancient brick and gingerbread town had not changed. Its 5,000 plus residents had been reduced in number by just one person in the last decade, and with the exception of a handful of trendy boutiques, it was the same sleepy town from so long ago. As we made our way to the end of Market Street and turned down the valley road, I could make out the familiar structures on the hill. The buildings were mostly as I remembered them, but they seemed oddly still and in need of something far more than a coat of paint. As I soon discovered, the only building still in service was the Administration building. A ghost town now haunted the old ancient foothills, and the myriad brick and wood buildings were now corroding blemishes on it face. The permanent population of the once bustling Center had dwindled from 3,000 residents to just 300 - all of them now housed in Administration building’s wings. As residents passed on, few took their place, thanks largely to advancements in early fetal testing. There was also better pregnancy care, vastly improved early and ongoing medical oversight and greatly expanded mainstreaming opportunities. Many of these life extending and life-improving advancements were a direct result of my own parents’ dedication and sacrifice. They helped turn bedlams into caring hospices and science labs.

The chapel was filled with caregivers, some who had known Mary for decades, and many who came in on their day off to pay their respects. The room was peppered with a dozen or more of the remaining residents, all of who are free to roam the halls and encouraged to be part of a larger community. Being involved in the service seemed as important to them as it was for me, and we cried separately and together.

Had Mary’s life been extended by science but diminished in quality? Had my parents (and by proxy, my brother and I), wrongfully abandoned our own flesh and blood? After the service, my daughter and I were invited to join the staff for cake and coffee.  While everyone was still present, I wasted no time and rattled off a series of blunt questions, and demanded honest answers. After 50 years, I heard the truth, and the truth brought a peace that I wish my parents had been blessed with before they died. They had no choice at the time, and had the network my parents helped build been available to our family, it would have made no difference.  Mary would never have achieved the mental acuity necessary to be “mainstreamed,” nor even sustain herself in any limited capacity - and without full-time medical assistance, she probably would not have lived beyond her twenties. My parents’ decision bought their daughter a life, and it was the best life she could have lived. Even with high quality, round-the-clock care, Mary’s vocabulary over the last 50 years consisted of just one word – “baby.”

These exceptional, dedicated caregivers, the administrators and residents alike were Mary’s real family, and through them, I had an opportunity to learn so much - and resolve a lifetime of anguish, doubt and pain
For the first time, I saw the years of photographic memories.
For the first time, I claimed my role as a caring brother.
For the first time, I had the chance to cry over her, if not with her.
For the first time, I had met my own sister.
xxx

Update: A quick thank you to all who have shared your own stories, for your kindnesses and for sending this diary to the Recommended list. I am truly humbled. - wbramh

Originally posted to wbramh on Sun Feb 14, 2010 at 05:27 AM PST.

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