One day my parents disposed of Stephen. He was my little brother, not quite two years old. We pulled up to the curb in our family car, stopping in front of a strange house. We were out in rural Oregon somewhere. It was quiet. A heavy, overcast day. Dad was in the driver’s seat and Mom was next to him sitting shotgun. She was holding Stephen. My older brother, Bill, and I were in the back seat, we were seven and five respectively. None of us had spoken the entire trip. And no one made a move. It was a harsh stillness. I didn’t understand what we were doing, but I could feel enough to be scared.
Finally, Dad said, “It’s time. Let’s go.” As he climbed out, he looked back at us sadly and said, “Come on boys, out of the car.” Then he walked around to the other side and opened Mom’s door, helping her out, as she held Stephen. Looking over the seat, I could see her eyes were wet. But I knew she wasn’t just sad, she was angry. And it frightened me. The five of us walked up to the front door and were greeted by an older couple. They welcomed us into their house with friendly smiles and polite introductions. We stood uncomfortably in a large living room, with two playpens lined up together against one wall and assorted toys scattered about on the floor. As the adults conversed, I watched Mom inspect the premises. She paid especially close attention to the two other infants, who were both in one of the pens together, moving about, making baby sounds. They were clean and unsoiled, and the rest of the room seemed well cared for.
I wondered if these two babies were damaged like Stephen was. It was hard to tell. My poor little brother had been born healthy, but after a few months, he developed a hernia and had to have surgery. And it was during that operation that a mistake occurred and Stephen was given too much anesthesia. It destroyed his brain. The doctors said it was irreversible damage. But I remember watching my mom struggle day after day, moving little Stephen’s legs and arms, convinced that if she was persistent enough, she could get those muscles working. We were downstairs in the family room, and Mom had brought down a walking board, with a divider in the middle. Picking up one foot of his at a time, she’d move it forward, and then she’d do the same with the other one. Up and down the walking board, back and forth, Mom was determined not to let this tragedy be the truth. Curled up nearby on an old couch, watching TV shows, like Wagon Train, I could hear Mom talking softly to Stephen, repeating encouragements, over and over with every step.
But as weeks and months went by, the gentle tone of Mom’s voice became increasingly the sound of frustration and pain. Her efforts to rehabilitate Stephen were interrupted by cries and tears, and helpless failure. If she remembered that I was nearby and listening, she gave no indication of that. She would pound the table and shout out God’s name for help, and then she would curse that same God for allowing her little boy to suffer. Then, Stephen would start to cry and she would pick him up and hold him close to her heart. He would gradually grow quiet, and she would lay him back down on the table and begin the exercises again. I wanted so badly to walk across the room and be held by her, too. But I didn’t, of course. I was undamaged.
The conversation among the adults seemed to be winding down. My dad shook hands with the other man, said goodbye to his wife, then he walked to the door, indicating for Bill and me to follow. We watched as Mom softly put Stephen down in the unoccupied playpen and covered him gently with his blanket. Then she whispered to him things I couldn’t make out, as she leaned down and kissed his forehead. Standing up, she turned to the couple and said goodbye, and then walked quickly out the front door. The three of us followed her to the car, no one saying a word. When the car doors closed, there was a harsh silence again. And this time, I felt a frightening finality in the silence. There were five of us when we drove up there. Four of us were leaving. Dad and Mom had just given Stephen away. And the thought occurred to me, that if this happened again, I would be next.
stories of mine
Dear Larry, I discovered this blog today through another Palisades elementary friend. The piece about Stephen has me absolutely gutted and moving through my own memories of this very fragile time for your family and my family. This is Kathi from the Williams family, the sister to Billy and little Cheryl. Your neighbors on West View with the little baby girl with cerebral atrophy. Oh my God. Cheryl went to the Mary M home too. My mother always went over and gave Stephen a kiss on the forehead every time we visited which became seldom with time. I remember the same greetings from the older couple at the door. Thank you for your eloquent courage to share this story of loss and sadness. I always hold space for this time and place in our lives. I remember your beautiful mother and your very kind father.
I’m in deep gratitude for you,
Kathi Bowen-Jones
(Williams)
The possible cliffhanger with Mrs Urban was tantalising and appetizing; these emotionally filled words about your brother show not only the pain of abandonment, but with how constantly you must have felt you would be next.
Larry,
Beyond beautiful.
Oh my. I am in tears. Just heartbreaking.
Devastatingly heartbreaking!
Perhaps where you and I (and my husband, Robert) intersect is that in the 1970s, we worked at a place in New York that received children like Stephen. In fact, as coworkers (therapy aides), we met bonded on the fact that we treated the children well and, when necessary, shielded them from abuse perpetrated by less caring personnel.
Whenever we noticed how some children never had visitors or calls to the facility–someone checking on them–we wondered what-on-earth happened to their parents. And how could they do it? How could they leave them like that?
Your heartfelt, riveting story not only gave the other side of the story (the parents) but also the perspective of the siblings, not wholly caught up on the terrible, heartbreaking decision to give up on a severely disabled child, their brother (no matter how he got that way).
And I bet that was the medical recommendation that your parents received.
It’s been 45 years since my husband and I worked in that place. And we’ll never forget the children who were in our care!
What an excellent sharing you rendered!!!
What a vividly poignant and deeply personal piece. Thank you, Larry, for your courage and generosity.
What a sad, terrible memory. And so frightening for a child to live with being sure to be the best little boy in the world. Shattering.
My friends have a child with CP and finally placed him in a school when she couldn’t carry or exercise him any longer. He’s now 49, can’t walk or speak but he gets a visit from his Mom at least once a week. He knows he’s loved. Sounds like Stephen is still a big part of your life. Thanks for touching mine.
A heartache for all of you. I hope he lived with love.
This is a beautiful heartwrenching story. I want to keep reading. Of course I want to know did you see him again. Beautiful writing Larry.
I’m wondering, of course if you ever saw your brother again?
Larry,
You bring me to tears. Excruciatingly profound to experience . Gorgeously written. You are a wonderful writer.
Thanks Jane, I so appreciate you reading my stories and your kind comments. I think the world of you. L.
My son had his tonsils taken out when he was 5 years old at University Hospital in Manhattan. For some reason he was recovering in the I.CU. with little children who were having procedures like open heart surgery.
He was sharing a room with a little boy who had spinal bifada and had already had eleven operations. The boys mother came in and asked him how he felt. He said “It hurts Mommy”. She replied “Have you prayed to God?” He said ” Yes, Mommy, but I don’t think God is listening.” I told my son I’d be right back and left the room. I didn’t want him to see me crying. Children suffering is so unfair and unbearable.
I’m crying now for your brother, Stephen, Larry. I want to take him in my arms and say everything will be alright and that God is listening
I can not imagine going through this. You must have been devastated and terribly frightened.
This is beautifully written, but so heartbreaking at the same time. I love your blog, even though I cry each time I read it.
You really make it seem so easy with your presentation but I find this topic to be actually something that I
think I would never understand. It seems too complex and extremely broad for me.
I’m looking forward for your next post, I’ll try to
get the hang of it!
I understand what transpired as I was that mother. Yes, there is no recovering.
The writing is wonderfully presented.
This has brought me to tears.
So sorry, I never knew. What a terrible memory.
Man, that’s a harsh loss and even harsher reality for a 7 year old to process. Producing a lifelong wonderment. Why, what happened to him, is he still alive, does he remember his brothers, his parents?????
Heartwrenching.
This breaks my heart every time I read it/hear it.
Heart wrenching. So sad…..