Friday, October 1, 2010

A Little Down Syndrome

Note: In honor of my brother Ralph's upcoming birthday on October 4, I am posting a piece I'd originally written in 1997, then updated a few years ago. Last year, this amazing human being, son, brother, uncle and friend celebrated a remarkable milestone -- his 50th birthday -- which drew family and friends together for a Hollywood-style gala in Springfield, PA (although he's a big conservative, Ralph is also an avid movie-buff ;).

An inspiration to all, my 2nd oldest brother is just one of many special souls who never fails to demonstrate the very best of human nature. While it's heartening to witness society's evolution in mainstreaming and accepting our brothers and sisters with Down's and other handicaps, one of the most troubling statistics I learned during the 2008 election, thanks to Sarah Palin's beautiful son Trig, is that 90% of unborn babies discovered to have Down syndrome are aborted. I pray for those loving creations of God who never had an opportunity to bless this world with their presence.

Happy Birthday, Ralph!

A Little Down Syndrome

As the youngest child in a family of five children and two wonderful parents, I have never had to look far for role-models. My positioning in the family line-up afforded me the opportunity not only to observe the behavior and personal characteristics of the people around me, but also to learn from their experiences.

Looking back, I realize that we all faced our own unique challenges, as is true today. As a slightly overweight child, adolescent, and young adult (I’ve since toned down to a healthy weight, which I’ve maintained for the most part), there were times when I felt as if I were the only put-upon soul on this earth. During my school years, I came to know and understand through personal experience the validity of the expression, “kids are cruel.”

But what I didn’t appreciate back then was that my elementary and high school angst paled in comparison to the obstacles life threw at one very special family member, someone whom I’ve come to regard as a hero — my brother, Ralph.

Ralph recently celebrated his 49th birthday, surrounded by his adoring nieces and nephews, siblings, and parents. For 23 years he worked in material services at a local hospital, where he was loved and respected by his boss, co-workers, and other hospital personnel.

In his spare time, he enjoys movies, both in the theater and at home (his DVD collection now exceeds 250 titles), attending wrestling matches, swimming, dancing (the guy can cut a rug!), babysitting for his nieces and nephews (characterized by lively rounds of “PlayStation”), and traveling (he often spends time with me at my place in Boca Raton, FL). Ralph is also an active member of the Knights of Columbus—not bad for someone who at birth, was predicted to amount to nothing more than a vegetable.

Ralph arrived on October 4, 1959, the second-born child of my parents, Rose and Al. Despite the trauma of his premature birth and the absence of my father who was working in upstate Pennsylvania as part of his medical residency, Mom was thrilled to have a baby brother for her older child, Mark, then 17 months-old. When she held the beautiful blond-haired, blue-eyed infant in her arms, the young 28 year-old mother felt truly blessed. Ralph was a sight to behold.

Her joy was shattered early the next morning, however, by a visit from Ralph’s pediatrician, who matter-of-factly informed her that her baby had been born with a terrible affliction known as Down syndrome. With clinical certainty, he pronounced that Ralph’s future would indeed be bleak. Pointing to a tree outside the window, he explained that my brother would be just like a tree trunk—unable to do anything but stand there. To say that this guy had no bedside manner would be an understatement. He completed his “professional analysis” by recommending Ralph’s institutionalization since my Dad was a resident doctor, and the presence of a handicapped child would be a “stigma” on the young family.

The more he spoke, the angrier my mother became—after the initial shock. Summoning her courage and faith in God, she ordered the doctor out of her room with the firm admonition to stay away from her baby. As of that moment, he was no longer Ralph’s pediatrician. Filled with an inner strength and supported by my father and close family members, she vowed to do everything in her power to help this special boy reach his full potential. And she would soon discover its scope went far beyond anything the “experts” foresaw.

Under the guidance and tutelage of my determined mother, Ralph crawled early, walked early, ate with no problems, and even toilet-trained early. A loving, affectionate child, he was a source of joy for his parents, grandparents, aunts and uncles, and a wonderful playmate for his big brother. Mom switched to a new pediatrician—a kind, caring man named Dr. John Williams—who applauded her efforts and was amazed at all that Ralph had accomplished.

As he grew, Ralph attended kindergarten, followed by first-grade where he was placed in the special education section. It was there that he flowered under the supervision of a dedicated teacher named Ruth Izumi. Ruth’s patience and caring assisted Ralph in garnering all of the knowledge and skills he would need to live a happy, productive life. Above all, she taught him to believe in himself and his abilities.

Ralph continued his education through the public school system, eventually graduating from Marple-Newtown Senior High in 1978. Though only 11 years-old at the time, I remember watching the ceremony and observing how gratifying it was that the school did not separate these “special” graduates; they processed in line with all of the other seniors. Additionally, Ralph had interacted with everyone during his high school years, attending class trips, parties and other festivities. He’d also been a member of the swim team and a participant in the Special Olympics. It sure was a long way from that dismissive doctor’s ominous prediction the day after his birth!

Growing up, I didn’t truly appreciate Ralph as I do now, though I understood his challenges in being “different.” There were days at the Springfield Swim Club when, standing in line at the snack bar or diving board, we’d hear the taunts of “Retard!” Though visibly shaken and misty-eyed, Ralph maintained his dignity and bravely ignored the ignorant comments of their limited young minds. As a little girl, I wasn’t quite so accommodating. On several occasions, I remember physically pushing the bullies who ridiculed him with the clear admonition to “leave my brother alone!”

Sometimes in the movie theater, Ralph and I would be forced to change our seats when the gawking stares of other people became unbearable. It would be comforting to report that most of this bad behavior originated from immature children; however, many “mature” adults were some of the most-guilty parties. To this day, I find that difficult to accept.

Perhaps the taunts of strangers seemed particularly tasteless given the way my parents raised all of us. Ralph was never babied or pampered because of his condition. When he did something worthy of special recognition, he was praised; if he did something bad (like tell a lie), he was disciplined appropriately. Because he was subject to the same rules and treated as one of the family, I never perceived Ralph as being “handicapped.” He was simply one of my older brothers, all of whom I adored.

But it wasn’t long before the world told me differently. And soon, he caught on too. One telling evening, my sister Carolyn, Ralph, and I — ages 9, 12, and 4, respectively — were playing in the finished basement of our house. Amid the merriment, Ralph suddenly became very thoughtful. Looking at the two of us with very serious eyes, he asked if he was “retarded.” After some careful consideration, during which Carolyn and I exchanged worried glances, she finally proclaimed with the wisdom of a 9 year-old, “Just a tiny, tiny bit.” In an effort to emphasize the extent of the insignificance, she brought her thumb and index finger close together. Then she assured Ralph that, no matter what, he was our brother and always would be. Satisfied with that explanation, he resumed his activity.

Over the years, Ralph has been so much more than just an older brother. He’s been a loyal friend, a good listener, a fun-loving companion, and an excellent “hugger.” When there was no one else to play with, Ralph was always a willing participant. From mimicking the dance routine of John Travolta and Olivia Newtown-John to “You’re The One That I Want,” from the movie musical Grease to challenging each other to swimming games in the pool (like trying to determine who could hold their breath longer under water), time spent with Ralph was invaluable and precious.

As a young adult, he faced another challenge: alopecia, a scalp condition that causes irreversible hair loss. Within weeks, it claimed his light-brown hair. To bolster his self-esteem, Mom had him fitted for a wig. Though he continues to wear one to this day, there are times when he must summon the courage to go without. Those first few days at the beach or by the pool were the most difficult, but, like everything else, Ralph took it all in stride.

Inevitably, as time went by, Ralph also had to deal with separation. Perhaps the most difficult was my brother Paul’s departure from the family nest to attend Vanderbilt Medical School in Tennessee, since Paul and Ralph had always shared a room. It marked the end of an era and the beginning of new transitions as eventually, Paul, Mark, and Carolyn married and moved out permanently. Though he felt these changes deeply, Ralph accepted them graciously. He stood up for Paul as best man in his wedding and acted as an usher for both Mark and Carolyn. Today, he enjoys close relationships with his sisters-in-law and brother-in-law, as well as their offspring.

When I decided to move away soon after Carolyn’s wedding, Ralph found himself an only child. Though I’ve never regretted my decisions, I miss Ralph’s “huggies” and taking him to the movies at the spur-of-the-moment. We visit as often as we can, and, in between, I love hearing about his social life and latest escapades. Ralph has a way of endearing himself to people in a way that is difficult to explain yet marvelous to witness. He exudes a combination of honesty and warmth that is as rare as it is irresistible.

Once, my dad went to the movie theater to pick up Ralph at the agreed-upon time. Not finding him in the lobby, Dad then went next door to Pizzeria Uno, knowing it was one of his favorite hangouts. When he described Ralph to the hostess, her face lit up as she pointed to the bar. Sure enough, there he was, having a few beers with the guys. Noticing my father, he promptly introduced him to his friends. As they made their way out of the restaurant, Dad asked if they were people he knew from work. “Oh no, Dad,” he’d replied, “I just met them and started talking to them when I went in for a pizza.”

So it seems Carolyn was correct in her assessment of Ralph’s condition. It is such a small part of who he is that it is nearly insignificant. Viewing it from a spiritual standpoint, I’m convinced that Ralph is an advanced soul, put on the earth to make other people better. He’s been an inspiration and a testament to faith for my entire family, and my siblings and I are more sensitive, considerate human beings as a result of growing up with him.

Several years after Carolyn’s childhood observation, Ralph was solicited for life insurance through the Knights of Columbus. He had just received his 4th degree, which is quite an achievement. The salesman sat down with him and methodically posed a series of health-related questions: “Do you have high blood pressure? Do you get dizzy spells? Do you have diabetes?” After a lengthy period of negative responses, a frustrated Ralph echoed his sister’s long-ago words: “Look, Mister, there is absolutely nothing wrong with me. All I have is a little Down syndrome, that’s it!” As he spoke, he gestured to make his point by bringing his thumb and index finger together, as Carolyn had done. There were no more questions. The next week, Ralph received approval for his life insurance.

Today, Ralph is inspiring the next generation, as his nieces and nephews — ranging in age from four to 16—clamor to spend quality time with “Uncle Ralph.” A particularly proud moment took place recently involving my then eight-year-old nephew Mark. My sister-in-law Lisa had taken a few of them to the movies, and, when one of his friends remarked that Ralph was “funny looking,” young Mark snapped back that insults to his uncle would not be tolerated.

And with my parents aging (though at 77, they are in excellent health), inevitable thoughts of the future pop into my head from time to time, though I absolutely dread the day when they are no longer with us. As devastated as I know I’ll be, Ralph will feel the loss even more deeply when his live-in companions make their transition. It will rattle his feelings of security and call the rest of us to action. I’d already determined countless years ago that any potential mate must be open to the possibility of welcoming Ralph into our home, whether on a permanent or part-time basis. My married siblings are also prepared for that new phase of life, and I pray that their spouses remain understanding when it finally arrives.

It’s the least we can do for a brother who’s taught us that even the worst prognosis can be overcome with a little love, faith, courage, and determination.

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