We walked into the quiet hallway after identifying ourselves and gaining admittance to the building. My mother had visited here before, but my husband, Jeff, and I were newcomers to this facility. We both looked around curiously, trying not to miss anything. Our footsteps echoed as the three of us followed our guide down the linoleum-floored hallway to a bright, cheerful recreation room. Posters adorned the sunshine-yellow walls. Two television sets, in opposite corners of the room, competed for attention. Chairs were positioned throughout the room and most were occupied. When we were finally led to Ricky's chair, my dark-haired younger brother smiled up at us. At his smile, memories flooded my brain . . .
* * *
I recalled the story of how Ricky, two and one-half years my junior, was a beautiful, perfect baby at birth. The often told tale of his suffering three days of unending seizures when he was merely five weeks old ran through my brain. The years of doctor visits spawned in the quest for a diagnosis seemed endless. Although mucopolysaccharidosis was finally diagnosed, the doctors never offered an understandable rationale for Ricky's sudden onset of profound mental retardation. Suddenly I had a vision of the precious 16-mm movie of Ricky, at the age of three, flipping from his back to his stomach. That seemingly simple act elicited cheers and tears from everyone, including his five-year-old sister. Of course, all these memories had been told to me, as I had been too young at the time to remember them. All I really recall was spending much of my early childhood with a kind neighborhood family, playing with my friends. At the time I did not realize or question why my older brother, Howard, and I spent so much time away from home.
* * *
"So, this is Ricky." My husband's voice interrupted my thoughts. "I'm glad to finally meet you, Ricky," Jeff announced as we pulled up three chairs.
My mother and I began to chatter to Ricky, our words falling over one another. We commented on Ricky's hair (long and full of body), his clothes (neat and clean), his chair (shiny and unusually shaped), and even on his socks (thick and pure white). As my mother babbled, Ricky continued to smile, and my attention wandered back in time again. . .
* * *
It was a bright, cloudless, perfect Sunday afternoon in Ohio. Howard and I played in the sprinkler near the grape arbor. Suddenly, a huge clap of thunder rang out like a sonic boom. The skies opened up and the rain began to pour. Scared, I picked up the red metal sprinkler and ran toward our restored Victorian house.
"Drop the sprinkler!" urged Howard as we ran. That proved to be a wise move, since there was now a full-fledged thunderstorm raging around us.
Our parents rushed us to a neighbor's front porch where we watched as the fire engines screamed their way to our house. Ricky was growing so big and heavy that I was worried my dad would not be able to get him from his bed and to safety before the house went up in flames. But he was safe and sound. As it turned out, there were no flames. The 'sonic boom' was a result of lightning striking the modern doorbell system which resulted in only minor damage to the house. However, the experience opened my eyes to many previously unconsidered dangers facing Ricky. If necessary, would I be able to help him meet those dangers?
Jeff's nudge brought me back to the present. We slowly wheeled Ricky out a back door, down a long and sloping ramp, and over to a swing set. It was the largest, most unusual swing set I had ever seen! Ricky's chair was wheeled onto a platform, clamped into place, and gently pushed. While he swung, I gazed around the playground. In addition to the swing set, there were low slides, large sandboxes, colorful teeter-totters, and a huge merry-go-round. The construction of the equipment was so innovative that I was amazed. As Ricky smiled in joy at being swung, I was reminded of the swing sets at Ricky's previous home . . .
* * *
Every Sunday after church we piled into the family car and drove to visit Ricky. We would arrive at Rian Hall, check in, and make our way through what seemed a maze of hallways and elevators to Ward 11. After greeting Ricky, it would be time for lunch. In summer, we wheeled Ricky along the hilly paths. After spreading a blanket in a shady spot, we would eat our picnic lunch. Of course Ricky could not share in our repast, but we ate enough for him, too! The winter routine was different. After lunch in the cafeteria, amid much banging and clanging of silverware and trays, we visited with Ricky in his ward. Regardless of the season, there was usually a parents' group meeting in the hospital after lunch. After returning Ricky to his bed, my parents would go to the meeting. Howard and I would then be on our own. Depending on the weather, we would have many choices of activities on the hospital grounds. Possibilities included playing on the swing set, taking a long walk, ice skating on the frozen pond, feeding the noisy ducks, completing our boring homework, or reading an interesting book. After the meeting, we would say goodbye to Ricky, pile back into the car, and head back home.
As I heard Ricky grunt, my attention was diverted from my reminiscences. The grunt appeared to be Ricky's signal that he was tired of swinging, so Jeff removed his chair from the swing set platform. The three of us made small talk as we wheeled Ricky up the long ramp and back into the noisy confusion of the recreation room. The bright colors and cheerful voices were in sharp contrast to another, vastly different home we had visited. I looked at Ricky's happy smile and said a prayer of thanks that he had not been forced to live there . . .
* * *
Sunland Center, Tampa. Even the name didn't seem right. Why wasn't it Sunnyland, or SunshineLand? My parents had decided, for my dad's health and some other reasons, to move to Florida. But what about Ricky? Ohio was such a great distance -- it had taken us twenty-four hours to drive down from there. So off we went to Sunland Center to check it out. I was an impressionable thirteen years old. As we walked down the drab, dim hallway, a sense of unpleasantness came over me. When we walked into the next room, unpleasantness was quickly forgotten and disgust took its place. There were wall-to-wall children sitting on the floor. Some were clothed, others were not. Some were wearing diapers, while others were wearing their own feces. The walls were bare, the few windows were dingy. The only noise was that of some children mumbling to themselves and others crying. I turned and ran out of the room and continued out of the building as quickly as I could. My parents and brother followed shortly after me. Needless to say, the decision was made to keep Ricky in his current home, even though it was so far from our new home.
* * *
My thoughts were again interrupted. "Would you like to see Ricky's room?" asked his nurse.
"Yes, of course," we quickly replied.
As we again followed our guide down the short hallway, I wondered what Ricky's room would be like. Would it be a happy, satisfying place? Would it be comfortable? Would we be pleased with it? When we walked in his room, my questions were answered immediately. It was a wonderful double room. Ricky had his own area with a wooden dresser. He had family pictures and cards from us taped to his bed and the wall above. After Ricky was settled in his bed, the nurse left us alone to visit. Ricky smiled up at us, almost as if relieved to finally be back in bed after showing us his new home . . .
The decision to move Ricky to this facility was not easy for our family. My father was recovering from a heart attack. Howard was getting married very soon. I had just obtained my driver's license and had begun working. At sixteen, I was determined that I would make my own decisions for my life. One decision I had made was to pursue a degree in special education. (My insufferable, know-it-all, geologist brother-in-law repeated over and over, "You're too smart to waste your life on teaching!" The arguments that statement caused around our household were infamous.) In the midst of all this confusion in Florida, Ricky's guardian called from Ohio. He informed us that due to the closing of Ricky's current home at Rian Hall, he wanted to move Ricky to a new nursing home called The Raintree. My parents were unable to make a trip to Ohio to view the facility at that time. So, after weighing the options, we took a step of faith and decided to move Ricky to The Raintree. The next year when my parents were finally able to visit Ricky, they were very pleased with the decision. It had been a good move for Ricky.
I was getting ready to voice that thought when my mother declared it was time to leave. "Ricky is extremely tired and we must get back on the road," she explained. We said our goodbyes to the staff, gave Ricky a final kiss, and headed up the hallway to the front door. As we walked outside, I pictured Ricky's smile and knew that it was okay. As much as was possible, he was at peace with his life. Then I thought back to the time spent away from my parents early in my life. I remembered my concern over the caretaking duties I might face. I contemplated my independent spirit, developed through time spent alone. I reflected on the decisions I had made about my life, decisions which were based on the experiences I had. When I squeezed Jeff's hand, he looked at me questioningly. I smiled, letting him know that everything was okay. I, too, was at peace with my life.