This is a short fiction piece I wrote several months ago.  While the events are fictionalized, the facts and information are all too true. 

Barbara smiled as Marge slowly lifted herself from the booth in the Ocean View Bowling Lanes. With her empty cup in hand, Marge headed toward the pot of free coffee. “I can get that,” Susanna said while trying to take Marge’s cup. “I’ll go surfing in that ocean out there before I let anyone begin to wait on me. Thank you very much,” Marge growled in her gritty, stern, lovable way. Barbara’s smile faded as she remembered the cancer that was mercilessly consuming Marge’s liver and spleen. Barbara picked at a broken finger nail as her mind flew back 45 years.

Barbara met Marge and Susanna in the hospital two day after Barbara’s only child, Bradley, was born. Their friendship had begun that cold, dark night as the older women silently sat holding Barb’s hand, sharing her grief. Marge and Susanna were about 15 years older than Barbara and they had shepherd her through those first tough years.

The three mothers belong to an exclusive, virtually unknown club of mothers of mentally challenged (developmentally delayed) children. This mutual bond cemented them together as they lived the next 45 years grieving each unfulfilled dream as their children grew older but remained almost the same. Now Marge at the age of 84 was dying.

Susanna was 86 and healthier than any of her four children, except for Carl. He shared his mother vigor, health and zest for life. Even though he was 50 years old. Carl’s developmental disabilities meant that his intellectual abilities would force him to always have the emotional temperament of a 12 year old. To compensate Carl had developed street smarts and an amazing charm and sense of humor.

Before Marge could return from her journey across the bowling alley, Bradley came running up to the booth and spoke to Barbara. “Mom, Mom, did you see that? Did you see that?” he asked joyfully.

“Yep, I saw that,” Barbara said, as she did every Saturday, following Brad‘s first game.

“My score was 135. I got three strikes,” Bradley informed her as he had done each Saturday for the past 25 years with the exact same words and expression. His red hair and freckles would have made him look younger than 40, even without the child-like enthusiasm that punctuated his every move.

“I know. I saw. Didn’t you hear me cheering?” Barbara repeated her well rehearsed part.

“I am so good. I am the best bowling in the whole county.” Bradley recapped his lines with emphasis in all the appropriate places.

“You brag too much,” Marge corrected, smiling at her offspring as he jumped up and down, clapping his hands with delight.

“You say that every Saturday,” Bradley tenderly scowled his mother.

“You brag too much every Saturday,” Marge said.

“I can’t talk all day,” Bradley concluded the Saturday-end-of-game drama, walking back to the lane. “I have another game.”

Susan came to the booth. She was crying. “Where’s my mom?” Susan was 55 with a stocky frame and straight blond hair. She was beginning the first signs of Alzheimer’s Disease and her tears flowed more frequently these days.

“I’m here. Just went to get a cup of coffee. You’re not an abandoned orphan, yet.” Crusty, Marge slowly maneuvered her way back to the booth, spilling coffee with almost every step. Marge wiped Susan’s eyes with a napkin and listened for a few minutes to her story. Then Marge interrupted Susan. “Get back out there, Girl. They are going to start the next game without you.”

Surprised, Susan instantly stopped crying, put her hands on her hips and marched back to the alley. “Don’t you dare start without me!” she commanded her team mates.

Marge turned her attention to Barbara, “Okay. Susan will need a home soon. Don’t you think I know that? Next you will tell me that De Nile is more that a river in Egypt.”

Barbara placed her hand on Marge’s clinched fists. The memory of the first night the three women met in the hospital flooded her emotions. That night it was Marge who first reached out to her. Now Barbara only wanted to replicate the love Marge had shown to her. “Marge, you can’t continue to live in denial. What are you going to do? Where will Susan live?”

Tears welled up in Marge’s eyes and spilt down her cheeks. “I don’t know. I can’t think about it now. The chemo has made me so sick and weak I can’t think. I’ll have to deal with it when I get better.”

Susanna reached her hand over to join Marge and Barbara’s grip. “I am just so grateful to have four other children,” Susanna said. “At least, I don’t have any worry about what will happen to Carl when I’m gone. My oldest, Maria, has already built an extra room for Carl.”

“Oh, yeah,” Marge said sarcastically, removing her hands from the group to dab the tears in her eyes, “and we all know how well those two get along. I give that set up one week before Maria…”

Susanna interrupted, “Maria has promised to be nice and not badger Carl.”

“And when is that going to begin?” Marge asked. “Remember last week at Carl’s birthday party? Why Maria was all over him. That is never going to work and you know it.” Exhausted from the outburst, Marge sank back into the booth and tried unsuccessfully to lift her coffee cup.

The conversation ended tensely. The three friends sat silently waiting for the second bowling game to end. But Susanna and Marge had been through too many concerns during the past decades to let anything destroy the love they shared. Susanna had walked Marge to Barb’s car. Marge leaned heavily on Susanna as they shared a whispered secret. When the car drove across the parking lot , Susanna stood in the sun waving to her friends.

Susan had called Susanna and then Barbara the next morning. “Mommy won’t wake up,” she reported calmly through the phone. An emergency placement was found for Susan that afternoon. There were no openings in a group home in the state . There was a semi-supervised, adult-living facility but it was 150 miles from The Ocean View Bowling Lanes. Susan would be able to have a room in the old motel and three meals would be provided but that was all. No laundry, no helps. No one was able to provide transportation for Susan to attend the funeral. The morning of Marge’s funeral, Barbara and Susanna drove to Clearwater to get Susan. After the service they returned to Clearwater.

Susan’s room contained a bed and a night stand. Someone had come into her room the day before and stolen her TV and her sheets and towels. When they arrived at the apartment, two men lurked in the corners of the hallway, glaring and grinning. Barbara found out that they lived across the hall from Susan. Barbara’s stomach sank as she saw them. “I’m gonna get you,” one of the men said as Barbara and Susan brushed past him.

Susanna and Barb vowed to each other on the way home that they would not let Susan stay in that horrible facility. However, once home reality hit. The new Federal law protecting privacy called HIPPA made any inquiry impossible. Susan had no phone. She was in another district so they did not know her new social worker. Finally, in desperation Barb made the trip back to Clearwater. As she drove into the unpaved parking lot of the old motel, a young attendant with a Jamaican accent stood at the door of the office. “You looking for someone?” the woman inquired leaning into the car window.

“Susan Monica. I’ve tried for weeks to get in touch with her.”

“Won’t find her here. This was a temporary placement. She’s been gone for a while now.”

“Where is she? How can I get in touch with her.”

“Guess you can’t–what with the HIPPA law and all. All I know is that woman wasn’t prepared for the place they sent her,” the Jamaican shook her head in despair.

“Worse than this?” Barb asked in unbelief.

“Lot worse things than dirty sheets. While she was here, I could look after her and see that nobody did nothing to her, if you know what I mean. Where they sent her, no one cares.”

The next morning, Barb made her way to the bowling alley, earlier than usual. Barb hoped she could report to Susanna what she had learned in Clearwater without interruption. But Susanna didn’t come. With her cell phone, Barb called Susanna’s home and only got the answering machine. Then Barb checked her own answering machine. There was a message from Susanna. It was wracked with emotion. “Barb, Carl and I are on the way to Jacksonville. My son, Bob is taking us. My daughter, Maria, and her husband have been killed in an automobile accident. We have to identify the…” Suddenly, Susanna’s voice broke with emotion. “I’ll call you when I can,” she said. The message ended.

It was almost two months before Susanna and Carl were back at The Ocean View Bowling Lanes. Family meetings, the will, probate, selling the house and furniture all tied up Susanna’s time and waning energy. Barb had called almost every day but often Susanna was in a meeting, too busy or too exhausted to talk. As Susanna walked toward Barb at the bowling alley, she looked weak and small.

She got a cup of coffee and slipped into their booth. “I’m looking into a special needs trust for Carl. I have to do something,” Susanna sighed as she nervously twisted a napkin. “The two boys have both told me that their wives won’t allow Carl to come and live with them. My youngest daughter can’t take care of herself, forget taking care of Carl. I’m at my wits end.

“I understand about the boys. They live out of state. They say the adjustment of moving Carl from his work, friends and home will be too hard for him. I understand but…what am I to do?

“I’m starting to believe that even a special needs trust is not the complete answer. Who will be the executor of the trust? You, Barb? You’re older than Carl. A bank? Oh, Barb, there are no good answers for us.”

There was a long silence as the two mothers stared at their adult, child-like children congratulating themselves on their bowling prowess. They hardly noticed Rick Staman as he walked into the bowling alley. Rick was carrying his twin brother’s bowling case. The brothers were bantering back and forth until a chorus of “Hi, Rick,” ascended from the occupants of the busy lanes.

Carl and Bradley rushed over to their mother’s booth to announce Rick’s arrival. Rick Staman was the founder of a ministry within the mentally challenged community and a celebrity pastor among all the members of this small cloistered subculture.

After greeting all the bowlers, Rick made his way to the booth occupied by Susanna and Barb. With a comfortable ease, Rick slid into the seat beside Susanna. Over the past months, since Marge’s death, Rick had become an unlikely partner to their trio. Neither Susanna nor Barb were religious and they not had wanted their children to become involved in the ministry Rick founded. But they had lost the battle many years ago. Now they were glad.

Rick was in his early forties, tall and thin with black hair and a quick sarcastic wit. He was not religious but his commitment to Jesus as his Savior and the mentally challenged community was undeniable. Rick had become a research assistant for the two mothers. He had produced a file of lawyers for Susanna to consult for the special needs trust. He helped Susanna with a list of questions she needed to ask. Over the years, he had learned the state systems better than most professionals. Now the mothers were reaping the benefits.

Unknown to them, Rick had taken on the job of looking for an answer to their concerns regarding what would happen to their children, after their death. “What you need is a quazi family member. Someone who can become Mama, after you are gone,” Rick told Barb one Saturday.

“No one should become lost in an uncaring system, like Susan has,” Barb agreed.

Rick grinned at his two comrades who were older than his own mother. “Think I have an answer for you.”

“M and S?” Susanna asked, dejectedly. Parents sometimes felt so bleak about the future prospects for their disabled children that they whispered that murder and suicide could be the only solution. In fact, it was such a common reference that the abbreviation, M and S, were now most commonly used.

Rick smiled and reached for both of Susanna’s hand. “Hard week, huh?” Tears welled up in all of their eyes. Rick pulled a file and a magazine from his case. “Read this. Maybe, just maybe, there is a better answer.”

Rick had found an organization called Disabled and Alone located in New York City. Using the money in a special needs trust, Disabled and Alone pays a personal advocate to campaign for the needs and concerns of the disabled person, after the parents are gone. Avoiding a HIPPA debacle, the personal advocate would assure that our most vulnerable people in society aren’t lost in a bureaucratic system.

When Susanna didn’t seem to show much interest, Marge took the file from Rick. Susan had been a shocking reality of what could happen to her son. Marge was a realist and if help was out there, she wanted it.

Monday morning bright and early, she called Rick’s office. “If this organization is half as good as they looks on paper, I want in. I scolded Marge for years to plan ahead. She refused. Now Susan may be lost to us forever. I think the best bowler in the county deserves the life services of Disabled and Alone.”

Susanna and Carl are still reeling from the uncertainties of an unknown future and Marge understands. But she and Bradley are busy helping Bradley’s new personal advocate learn all about Brad’s interests and concerns. Marge only hopes that she can help guide Susanne into the program that could some day keep Carl out of the deep, cavernous holes of the bureaucratic system.