Chapter 1 Sing A New Song II

I felt helpless as I looked back at him, lying in the room at the board-and-care facility in California. I was tired and there was actual pain, heavy in my heart, as I turned to look for the last time.

There he lay, 23 years old, six feet tall, and barely 120 lbs. Heavily sedated to prevent the violent behavior he had previously displayed, his mouth looked extremely dry and cracked, and his breath smelled bad. He was unshaven, his hair was long and unruly, and it was apparent he no longer cared about anything.

“He’s given up,” I thought, “stopped fighting for acceptance in a world which doesn’t understand him.”

He was my son, brain-damaged at birth, diagnosed at the age of 18 months as “mentally retarded, hearing and speech impaired.”

The cloth restrainer, which confined him now to the narrow bed, was very soiled. The worn mattress wreaked of urine from previous patients, and the threadbare blanket, which barely covered his legs, had been laundered so much that it had no color to it. I thought to myself that it must have once been blue…. or maybe gray.

As I watched, he began rolling his head from side to side continuously, while humming in a loud monotone. His eyes were glazed and fixed upward as he rolled his head back and forth to a fast rhythm.

“Goodbye, Chris,” I called from the doorway. He stopped for a brief second without acknowledging my presence, and then resumed humming. I wanted to say, “I love you,” but the lump in my throat hurt too much. I turned and walked slowly through the hall and out of the building.

I was leaving him, having run out of ways to motivate him, ways to encourage him to persevere despite ever-present obstacles. I had become frustrated in my efforts to prove to him that he was born to be an acceptable functioning member of the world. Tired of my lonely mission, I felt discouraged and exhausted. I felt as though I had no tears left to cry as I walked through the parking lot to my car.

There was nowhere else to take him on our limited budget. He had lived in private institutions from the age of 7 until he progressed into private schools for children with mental challenges, and then into residential homes for the semi-independent. He had come back home when he was 15, to live with our family. After his Dad died, a few years later, I found it necessary to place him in a nearby residential program, realizing that he was in the pain of grieving for his Dad, as were all my children. Each one grieved in a different way, mourning and missing their father. Always unhappy and defeated, Chris was constantly moving from one program to another.

His most recent violent and destructive behavior had resulted in his being admitted to the nursing facility where he now lay, incoherent.

My youngest son, Jimmy, suggested that his brother, Chris, had been lashing out at the whole world for the hurt he was feeling.

“I think that when Chris is in his 40’s,” Jimmy once told me, “he’ll be o.k. I think he’ll be normal then.”

He had been placed in this facility by authorities while we, his family, felt helpless and sad. I had explored all options. All I could do was leave him.

I left him there in California with his two oldest brothers living nearby. I returned to Colorado to raise my younger children, who ranged in age from 9 to 16.

Unable to accept seeing Chris in a lethargic and incoherent state at the nursing home, my sons called me often to complain about the conditions. They began taking him out on daily passes whenever possible.

“Mom, he can’t remember anything!” Frank and Paul worried. Chris’s memory had always been exceptional in certain ways. Once he met a person and asked their middle name and birthday, he never forgot that information. His brothers were now concerned about his memory loss.

Sometimes, when they let his medications wear off, Chris begged them to take him out of there. He promised to be good and do whatever he was supposed to do. It was heart wrenching for his brothers when he was pleading for their help. Unable to satisfy his cries, it became more and more difficult for them to return him to the facility after visits.

It wasn’t long before my oldest son, Frank, insisted we could not abandon Chris, not leave him in the nursing facility. We began discussing the few possibilities we could think of, and wondered if we should make one more attempt to help him find his place in the world, a place where he could work and live. It seemed to us that he was entitled to some freedom in life, somehow, somewhere. Should we even dare to hope once more? Should we try again to find some happiness for him? Should we try again because he was willing to?

Chris’s collect calls from the nursing home to his brothers became more frequent and more urgent sounding. He was often sobbing and pleading for their help. Then they wouldn’t hear from him for several days, so they would call or drive there, and find him heavily sedated.

Finally, with the help of his brothers, Chris was released from the facility, and he flew back to Colorado with Frank, who had sold his car to buy two plane tickets. We considered it our last attempt to search for happiness and success for Chris, and worked out a plan with a physician to gradually discontinue the sedatives he had been taking.

As Chris’s memory seemed to return to its original ability, all he wanted to do was to work, to be like his brothers and sisters, to pay his own bills. His Social Security check was barely enough for his survival, so he needed additional income. We were led to a successful community program managed by the state. There were interviews with Chris, Frank, and me, followed by physical and psychological examinations, and extensive planning before we were introduced to Chris’s first caseworker, and he was accepted into the program.

At this time, while Frank and Chris resided with their sister, Donna and her husband, Chris needed constant reminding of the need for good hygiene and neat appearance. With daily prompting, he tried to comply, appearing every morning after shaving, with nicks and scratches from the razor. Slowly, though, there was progress resulting from constant reminders and assistance from his siblings.

His appetite was enormous, and he began eating his sister and brother-in-law “out of house and home.” When he was left alone at all, he found it hard to control his eating, and ate unbelievable amounts of food.

He often let the dog out, despite being told it was an “inside dog.” The police or dogcatcher would then either bring the animal to the door, or call for the dog to be picked up from the humane society’s shelter, for a fee.

The household was in turmoil when Frank decided that he and Chris were ready to rent their own place. After searching through the want ads for something suitable and affordable, Frank rented a trailer in a trailer park not far from the sheltered workshop where Chris would be re-entering the work environment.

Chris was very excited about rooming with Frank, especially when the trailer turned out to be bright pink...

As I read, I was trying to be of "two" minds. While I could relate to a lot of things that were written because of similar things having happened to my own brother, I was also trying to be in the mind of someone who has no knowledge, no experience, in the world of mental retardation. My conclusion of this well written book would have to be "how could anyone, anywhere, read this book and not feel compassion?" "How could anyone lay the book down, and, not feel love from the greatest depths?" The love of the mother for the child, the love of the child for his parents, siblings and friends, pouring forth from each page, made my heart swell with pride for this entire family who, above all else, love unconditionally - the greatest gift we are given by God and the greatest gift we can give each other.

As I read, I couldn't help but feel other emotions as well. Anger at the throngs of people who are given an opportunity to help someone who is so desperately trying to help himself, who turn around and walk away. If only they could know what a blessing they would receive if they could open their hearts just enough to get to know someone as humble and loving as developmentally challenged individuals are. But, no, most usually I believe that people such as this either are of the mind that what they don't know, they don't need to know. Or, they believe that others will judge them by their association. What a sad state of affairs when, in my opinion, we are all put on this earth to help each other. So, yes, I became angry when I read that there were such people in Chris's life who treated him shabbily. But, Chris has become the much better person because he loves everyone, just as God intended. If we could all be as forgiving as Chris, what a much better world this would be.

When I finished the book, I felt an overwhelming desire to hug someone. Thank you, Pat, for sharing your son with the world. And, thank you, Frank, for sharing your life with your brother - your entire life is a symbol of the true meaning of "sibling". God bless all of you now and for always.

Love,
Sally N. Crowe