I Am My Brother's Keeper - Always Have Been, Always Will Be

My brother is visiting for the weekend.

Siblings are curious creatures. You fight, mostly you love one another, sometimes the differences are harsh, bitter things and they lead to insurmountable chasms that end in distrust, dislike or even hatred. But most siblings grow up, leave home, as you do, and when you want to maintain a loving relationship, or avoid the unpleasant one, those ties are easy to either maintain or sever, as you desire.

Sometimes the sibling relationship is not so easy. Sometimes you end up in a sibling relationship that cannot be conformed to your desires. Sometimes fate determines how that relationship will have to be maintained.

I was the first child and six years old when my baby brother Jimmy was born. Both I and the second child, my other brother, were small babies and skinny, bony kids. Jimmy was a round little child with big, startled eyes. I don't remember the day, but I have seen pictures of me holding him in my arms as we came home from the hospital.

The years of my childhood are as snapshots that flash across the screen of my memory, sometimes jolting me, sometimes like a mere whisper of recollection. I do not remember the first years of Jimmy's life and I have no memory of the dire, momentous events that began when he was nearly two and a half.

My mother, a trained nurse, was practical with her kids. I was a smart baby and fast learner and I progressed ahead of the 'schedule' mothers were given for their kids, as did my other brother, though he was eerily quiet and introspective. (Mother says that he didn't speak for three years but suddenly began talking then - in complete sentences.)

When Jimmy failed to move as quickly along the proscribed success-o-meter of baby prowess, she didn't sweat it. He was a happy baby and he was the baby of the family and that was just fine.

Then one day he had an epileptic seizure. My mother has never spoken of how she reacted to what must have been a terrifying episode (if you have never witnessed a grand mal seizure in all its ugly fright, you cannot know how impotent you feel). Immediate medical attention was sought, no doubt from my paternal Grandfather, a doctor and a general family practitioner and the man who had delivered all three of her children. But serious specialists were subsequently consulted and the diagnosis was epilepsy, a bad enough sentence, but they further determined that Jimmy was brain damaged. It was causing the seizures and, far worse, they proclaimed him mentally retarded. He would never be normal. He would always have the mind of a child, no matter the size of his body. No one could say how much he might progress, or how little.

To me as a child, Jimmy was just Jimmy. It was not until I was older and in junior high school that the true enormity of his condition was made evident, particular as how it would impact my life, especially in light of the next upheaval that was thrust upon our family.

In 1968 my Father left the family and demanded a divorce. The months that followed were horrific, emotional, devastating and his family's behavior created a rift that never healed and left me with a deep well of bitterness, resentment and, as so many children of divorce or abandonment, an abiding certainty that I was unworthy and unloveable.

My Mother came through the divorce, as she would say, bloody but unbowed. She learned to drive, learned to type and take dictation, and got a job (her first ever) and went to work every day at a doctor's office, a job she would hold for the next twenty years.

Jimmy was attending a special school run by the AHRC, the Association for Help of Retarded Children. It was an excellent, non-profit operation, with fabulous people all the way around. But when he came home from school, someone needed to be there. So I began to come home from school immediately, every day, to take over the care. My other brother was drafted into this responsibility as well, but he suffered worse reactions and emotional scarring to the divorce and was not good with Jimmy. His bitterness was boundless and it often overflowed onto Jimmy.

I suffered teenage embarrassment when my friends would come over and be awkward around Jimmy, who was outoing, social and quite friendly. But I began to judge my friends and boyfriends based on their reaction to and treatment of Jimmy. It is not surprising that the few who were diffident never reigned long in my heart.

From time to time there were babysitters, as finances allowed. I was able to take part eventually in after-school sports and drama and chorus activities. Jimmy got older, skinny, continued having seizures and learned and we all adapted.

Babysitters began de rigeur when I went away to college in 1973. I'd spent the summer after my senior year of HS as a camp counsel at the summer program Jimmy attended at the AHRC, working with all manner of retarded kids, many of whom had far more serious handicaps than Jimmy, and obviously posed a tougher row to hoe for many families. It put things in perspective that Jimmy could dress himself, feed himself, and make himself understood, if only to us. During these years he achieved the momentous feat of teaching himself to ride a bike. My mother remains chagrined over this fact. She can't ride a bike.

After I graduated from college, when my Mother had difficulty coping with being the breadwinner, and the caretaker, with my other brother's relationship with Jimmy difficult, I came home. The mother/daughter burden we shared with Jimmy was a natural one and it deepened. We both worked, but there were social worker-provided after-school caretakers. When he was older he came home alone, a mentally-challenged latch-key kid, only he couldn't work the key so he came home to an open door and a couple of hours of solitary time until my Mother could arrive home.

At the age of 30, I moved out for 10 years. I pursued an acting career and lived in Manhattan, making frequent trips home, both to visit as well as to assist and support. but then my Grandmother, 95+, moved in, broke her hip, Mother had a couple of falls and broken bones and when I discovered that her 40 years of smoking had left her with emphysema, which had eroded her lungs to the point where she was now going to be medicated, I packed up my greaspaint and sheet music and moved back home.

That was in 1995. October, to be precise.

Today is May 3, 2009. I've been home for 13 1/2 years. The first ten years that passed after I got home were, oddly a blend of the great and the horrific. There were fun times, and there were traumas. My grandmother's mini-strokes eventually put her into a nursing home where she died on April 21, 1999, at the age of 99 and 9 months. Jimmy had been on a regimen of medication for a number of years that had proven disastrous, leading to violent outbursts of temper and three visits from police for intervention. They once removed him and took him to the locked ward at the local hospital. My mother called me and I left work, came home, and we drove and picked him up, signing him out and taking the trembling, sobbing man home. Mother had retired by that time and was in the throes of a deep depression. The burdens of the daily care of Jimmy and her mother left her bitter and unhappy that her retirement was not the stuff of relaxation and the reaping of the rewards of one's years of hard work.

Then came the day that we were notified that, after decades of being on the waiting list, Jimmy had been accepted for a place in an adult group home, one of many sponsored by the AHRC. In a mere two months he was packed and gone. He was, by turns, excited and terrified. The speed with which it happened was beneficial since it was a nightmare of emotion for my Mother. Her baby, at the age of 45, the man for whom she'd cared nearly all her adult life (she was 27 when he was born) was being given over to the care of strangers. While cerebrally she understood how important an opportunity it was, emotionally she was, in short, a wreck.

He's been there for over three years now. But the responsibility for my brother didn't end when he moved out. The house is 5 minutes away. He comes home often (every couple of weeks). We visit him, making special trips on holidays and for the house parties that they throw every so often, as well as parents' meeting nights. In the spring I go over with vegetables, seeds and planting acoutrement and we make a little garden in the house's backyard so Jimmy can have his very own tomatoe plant, beans, lettuce and herbs. He proudly reports on the progress of "his garden" to his sister, the gardener. There are problems in which we are involved, both in the discussions about the problem and the resolution.

Jimmy sometimes calls, crying, the heart-wrenching sound of a man approaching fifty, sobbing unabashedly, about something that has upset him. Or he'll call us to tell us about the basketball game he saw, or the Radio City Music Hall Christmas event or a dance he attened. He comes home with tales of his girlfriend, his teacher, his workshop day program chores or the trials and tribulations of some of his roommates.

I call him, send cards, bring him home for holidays and birthday celebrations and I still buy him the same gifts as always. Fun t-shirts, sports trading cards, action figures and coloring books and crayons. We watch Grease together several times a year. It is his favorite movie and we've been watching it since it's release in 1977. He still hugs me, calls me his "family", gets mad at me, gets stubborn and grumpy when he doesn't get his way. But even as he has adapted to his new home, he never fails to tell me "I love you" and "I miss you". And he always asks, "Do you miss me?" I do.

And I still worry about him, care for him, nurture him, and make my life decisions based on his needs. He's my sibling. My baby brother. He's a good-hearted man with a great sense of humor and a generosity of spirit with those less able than himself.

I have spent my life caring for Jimmy. Fighting battles on his behalf. Seeing to his needs and doing my best to provide for his happiness. I will spend the rest of my life - or his - doing exactly as I have since he was born. How can I do anything else? My mother held him in her arms first. I held him second. No matter our own difficulties we have always been united because of Jimmy. It's been hard. It's been joyous. It has, in large part made my life what it is. But while it might have been difficult, it was never a burden.

Hey, he ain't heavy. He is - and always will be - my brother.