Saturday, September 13, 2008


This past Tuesday morning, my wife and daughter showed up at my work. I knew my daughter wasn't feeling well and might have stayed home from school. Odd they would come all the way to West Bend for anything, though.

Well, they wanted to tell me in person that my brother had passed away.

Two years older than me, my brother, Billy, was born brain damaged. He was also cerebral palsy. One of the only reasons I'm here is that my father wanted a healthy boy.

Billy created many challenges for my parents. But, as the years went on he would grow in to a unique individual. Capable of emotion, desire, friendship, and love.

His mental retardation (I'm sorry. That's what I call it) was severe. He was trainable, but not educable. He couldn't read or write, count money, or tell time. As such, his was a life that would be in need forever.

It was tough for me when we were young. Kids were cruel. Fortunately, those in our neighborhood learned to accept him. He was always part of "the gang". In fact, not much for wanting, all he did want was to be accepted. To be part of everyone else's world.

He enjoyed music. He loved Elvis. Coincidentally, Elvis died on his birthday.

He worked most of his adult life in sheltered workshops. He was a good employee and well liked by the staffs. While he didn't understand the amount of money he earned, he understood what money was. It gave him a real sense of pride to get a paycheck. Little though it was.

In spite of his palsy, he learned to ride a bike before I did. One time when a bully took my teddy bear, Billy clothes lined him off his bike and retrieved my teddy. While I always watched over him, he was protective of me.

While he was easily contented, the fact remained, he would need care for all of his life. When the days came for my sister and I to leave the house, Billy remained.

As everyone aged, it became clear, however, that it would become difficult for my parents to continue his care. My dad had developed Parkinson's and my mom has bad arthritis. My sister, who had moved to Arizona some time ago, decided to take Billy in. She had room and the resources. It was a tough decision for my parents. So much so, they moved to Arizona to be close to him. That was about 12 years ago.

Billy had some behavioral problems. It was difficult on my sister . . . and her husband. Quite a life change. But she and her husband were committed to making it work. It turned out to be the best decision. My parents continued to be with Billy, and Billy got the care and structure he needed to make things easier for him and everyone else.

About a year and a half ago, Billy got sick with a cold. He didn't get sick often, but when he did, it really seemed to take a lot out of him. He would become very lethargic. This time, however, he was virtually catatonic. It made caring for him extremely difficult. So much so, that my sister had no choice but to call 911 and have him taken to a hospital.

What should have been a couple of days in the hospital turned out to be a lengthy stay with Billy in critical condition for a couple of days. Turns out, his red cell count and his oxygen levels were dangerously low. Accounting,we think, for his lethargy in the past. Who knows how long this had been going on? His normal physicals were always fine.

After a couple of weeks in the hospital, Billy got better but couldn't walk. He was transferred to a care facility to undergo physical therapy. Four weeks later and he was able to walk with the aid of a walker.

Tough decision had to be made.

Without the ability for Billy to do the simple things necessary to help take care of himself, another living arrangement would have to be found. It was a tough time for my sister. She badly wanted Billy to stay, but like my parents years ago, found herself unable.

Billy had become virtually deaf. He was blind in one eye. He had arthritis but it's difficult to know how bad. He simply couldn't translate the things that went on in his body to words that one could understand. Much remains a mystery.

Complex ordeal and long story short, she found a group home near her house that would take him. The question now would be . . . would he accept it?

He did. Beautifully. He probably felt the most grown up he ever has. He had his own room, TV, and 5 room mates. He was able to return to work. He was content. My mom would visit about once a week, and my sister would visit every few days.

This past weekend my sister and her husband spent the day with him. They went to dinner at a cowboy type restaurant and he had a great time. The next day, he came down with a cold. My sister spent some time with him, went to the store to pick up some medicines, and tried to make him comfortable. He was alert and responsive. He cried, though. Again, hard to know what his body was telling him. He stayed home from Work on Monday. My sister checked in regularly and left instructions to check Billy regularly and report back to her. All day the news was uneventful.

Tuesday, about 3 in the morning, the staff was at my sister's door step, crying.

Mentally retarded people don't live to be real old. Age had definitely taken it's toll on Billy. Still, this was a shock. To go from one day happy and smiling, to the next day gone is rough. Especially for my mom since my dad passed just 4 months ago.

In his own way, Billy touched a lot of lives. He helped teach tolerance, patience, and humility. His was a life completely untouched by cynicism, greed, preconception, and resentment. I believe much of who I am is a result of Billy being my brother.

I love you, Billy. Rest in peace.


still Unreal... said...

It has been a very, very long time that a story has had such a profound affect on me.
I am so sorry for your loss.
My thoughts and prayers are with you and you family.

Jimi5150 said...

Thank you very much.

Ick said...

I am also sorry for your loss, Our thoughts and prayers are with you and your family...

Anonymous said...

My sympathies and prayers are with you and your family, Jim.

Silent E said...

I so sorry I missed this post. You and your family are in our thoughts and prayers. We'll add a special prayer for Billy on Sunday at church.