A Father’s Anguish for Retarded Son

My boy Raif will be tough like me and smart like his mother. He’ll get an athletic scholarship like I did, but he won’t really need it because he’ll have 700 board scores like his mother did. He’ll go to Berkeley or Stanford because the Ivy League is too far away and I’ll miss him too much.

There is a picture that I keep on my desk at all times. It is a family portrait of my father, at 5 years of age, with his brother, parents, uncles, aunts and grandparents. They were strong and healthy looking, in the lumber business, and for the picture they lined up in front of a small spruce forest in their home town of Prienai, Lithuania. One day, after my father and his nuclear family had moved away, everyone else in the picture was led to the edge of town, told to dig a mass grave, and they were shot by the local Nazi sympathizers. My Uncle Raphael was away on a business trip, and when he returned and heard the horror stories, he went to the edge of town to join his family. He was shot and thrown into the grave with the others. I asked my wife if we could name our first child after Uncle Raphael.

It turned out to be a Raphael rather than a Raphaella, and I went quickly to the telephone to tell the world that we had a healthy new son. It was early Sunday morning, and the Knicks were on television. Suddenly, the obstetrician, a close personal friend, came into the room with another doctor, a pediatrician. The next few minutes were a blur--there was a loud clanging noise in the back of my mind--they were throwing around some scary words--simian crease in the palms, ears set back, Down’s syndrome, mongolism.

The longest walk of my life was the short walk to the recovery room. The worst moment of my life was telling my wife, herself adopted, that her first known blood relative and first child had Down’s syndrome.

We decided to put Raif in a foster care center, where he would get expert care and we could attempt to have a normal life. An old friend from high school called and told me that some friends of his parents had a kid like Raif, and they went to a lake and let him fall off the dock. Nobody saved him. We got anonymous phone calls from a network of other Down’s parents across the country telling us that we had to raise the child at home, that we were committing a sin, and the guilt was pretty intense, but I felt like we were doing the right thing.

I read everything I could get my hands on about Down’s syndrome. The parents of Down’s kids often end up divorced, especially if it’s their first kid. Down’s kids were generally happy and capable of living fulfilling lives. They reach mental ages as high as 10-years-old. One of them even wrote a book that was published.

My boy Raif will be the Einstein of Down’s syndrome kids. He’ll be the Jesse Owens of the Special Olympics.

Raif just couldn’t get off the starting blocks. He had to have an operation to uncross his eyes, tubes put in his ears, and he kept having seizures that constantly sent him to the emergency room. He was so stoned out from all the seizure medicine that he wasn’t developing.

He lived in a foster home run by two guardian angels, a couple in their 50s who had already raised six kids of their own. There were five other handicapped children living with Raif, and most of them were much more severely retarded than he. The saddest cases were the ones who were born normal until their parents beat them or would have been born normal if their mothers hadn’t been junkies. I called them the all-vegetable band.

My boy Raif will be the leader of the all-vegetable band.

Last month, Raif turned 8 years old, and I labored over the annual dilemma of what to get him for his birthday. His two healthy younger brothers are avid ballplayers, so I decided to buy Raif a Nerf ball. He was doing great--walking, feeding himself, happy as ever--very much like any 1-year-old. We sat across from each other on the floor, legs apart, and I rolled the ball to him. It rolled up against his legs. He picked it up, looked at the ball for a moment, looked across to see me imploring him to throw it back. He did. He rolled the ball back between my legs. We rolled it back and forth to each other a few times, and then he lost interest and scampered away. Raif and I actually played a little ball. It was a beginning, and I was glowing.

The other day I got a phone call from my ex-wife that Raif was sick. Very sick. He had gotten pneumonia and his lungs were totally saturated and he was on a respirator and he was paralyzed with drugs so that he wouldn’t pull away from the respirator and die.

I went to the hospital with overwhelmingly mixed emotions. I used to pray that he would die in those first two years, but that was before I got to know his special nature. If he was to die now, did I want to remember him playing ball with me on the floor or hooked up to a life-support system? But I had to see for myself--convince myself that he was getting the best possible treatment and that he wasn’t in any pain. The doctor was waiting in the ICU. She told me that kids that are this sick usually die, but there was a chance that the antibiotics would get rid of the liquid in his lungs and that he could pull through. If he did, she said there would be extensive brain damage because his blood had been very low on oxygen when he came into the hospital.

She led me to a cubicle, where Raif was lying on his back, tubes and IV’s attached to his small body. I looked down at this unique little boy and thought about what a strange little life he’s had. He survived great odds just to be born, and he’s never gotten a break. He looked so peaceful lying there, and I collapsed over him, sobbing heavily. The doctor left me alone with my grief, sending a nurse back in with a box of tissues. When I left, wondering if I would ever see my son again, the doctor told me that it could be a matter of hours or days.

As I wait for the phone to ring, I ask myself all the weighty questions--is he just passing through this life on his way to a better life? Is his life any less worthy or fulfilled? Why him? Why me?--and I come up with absolutely no answers. Except one. I’m not sorry it happened. I hope we can play ball again someday. My boy Raif has enriched my life.