Happy National Down Syndrome Day

This is a story I wrote some years ago, about my wonderful Down Syndrome son, Brian. Brian is almost 39 years old now. I wish everyone a beautiful, perfect, happy National Down Syndrome Day. I love you, Brian. I'll see you tonight at the Marquette National Down Syndrome Celebration.

Blue Baby

Last week my son, Brian, went to the prom. He asked me a week earlier and I said, “Yes, you can go,” and “I’ll take care of everything.” That was the last word said about the prom until Friday afternoon at 4:00. I asked Brian if he was going to his grandparents’ house that night or in the morning. He looked at me wonderingly and said, “I’m going to the prom tonight.”
“Brian! I hate it when you do this! Why didn’t you remind me?”
“I did,” he answered. “I told you about it last week. You said it was okay.” He trusted me enough that when he asked me once and I said yes, that was the word and he didn’t have to think about it again. I apologized.

At 6:00 we stood in the entryway of a supper club in Marquette. I surveyed my boy in the hurriedly pressed dress clothes, holding the purple corsage we made in the car because no florist could make one on such short notice, for a girl who never even came that night. I looked at him and asked in a silly voice like I had a pinched nose, “Who are you?” He laughed and answered, “You know me, Mom. I’m Blue Baby.”
“Oh yeah,” I said, “Now I remember.”

I remember a tomb in St. Luke’s Hospital in the broiling August of 1972, when everything was not groovy. A sixteen year old girl lay curled in bed in a fetal position in a room where the other occupant had been hastily removed so she could be alone. There were sinister monsters dressed in white in the hallway that crept past the door and peered in to look at her, and whispered unspeakable things like mongoloid, retarded, Down’s Syndrome. A Catholic priest asked her parents, “Is she going to keep him?”

“Is she going to keep him?” she repeated incredulously. She looked at the strange, bald creature who rested by her swollen stomach. The baby with the small, round head, tiny ears, stubby fingers and slanty eyes never cried. He didn’t cry because his world was perfect and she didn’t know it. Besides, she cried enough for both of them. Keep him? Of course she would keep him! He looked like a baby to her. He had so many things to teach her.

Her devout, Catholic parents had their own adjustments to make. They had to face a small town of judgmental spectators and defend their daughter who had broken all the rules. People talked. People whispered. People shook their heads.

Two weeks after the baby was born, she began her senior year of high school. She walked carefully down the crowded hallway with a pillow to sit on, because it still hurt ~ this girl, this rebel who was the first pregnant girl in Marquette Senior High School to say, “I stay and I finish.” It was a different time. Girls quietly left school when things like that happened.

The Home Economics teacher who had befriended her throughout her pregnant, junior year, stopped her in the hallway on that first day of school. She excited said, “Did you have a pink baby or a blue baby?”
“I had a blue baby,” was all I could say.

Brian followed the sounds of the music to the banquet room that had been festively decorated for this Special Education Prom. His friends crowded around him when he walked in and they hugged each other affectionately, like long last friends, forgetting that they had been together in school all day. Like Brian, they all had sweet faces that looked like a child you would see on the outside of a can, asking people to donate their loose change.

I watched them laugh and twirl around in their party clothes and clap for each other. I think they come from another place, where everything is good and beautiful and always happy. Brian is different than everyone else in our family. He loves to write letters to everyone he knows that include a mixture of television advertisements, Bible Scriptures he has memorized, and the country and western songs he loves. After raising two ‘normal’ daughters, I have come to the conclusion that Brian is the smart one. I say that with a heart full of love for each of my children.

Pandemonium pervaded the room in the supper club when a particular song began to play. Some kids had partners, some were in wheelchairs, some were alone, and others were escorted by Staff. Everyone in unison began doing hand motions and touching themselves all over as they turned, twisted and shook their hips. I felt lightheaded. What was this, and more importantly, how did my son know it?

Someone next to me, whom I couldn’t understand very well, told me it was the ‘Macaroni Dance.’ I stood on a chair to watch Brian, who maintained unabated synchronization with his beautiful, brunette partner. I strained to discern her face. It was Wendy, whose last name I never knew, but someone I’d never forget. I hadn’t seen her in years.

It was the Christmas classroom party during Brian’s last year in the high school special education program, before he moved to the Jacobetti Skill Center. I was eating a Christmas cookie and opening the angel ornament Brian had made for me when a dark-haired, soft-spoken girl sat down beside me. “Are you Brian’s mom?” she asked me, and I said that I was. “My name is Wendy. Do you remember me?” I said that I was sorry, I didn’t. “Actually we never met,” she said, “but I’m Wendy from Brian’s first year here. Wendy ... from the pool.”

The blood drained from my face. “Ohhhhh,” I answered. I was recollecting. Brian had only been in the high school program for a few weeks, far from the cocoon that protected him, and his social behaviors, in middle school. He didn’t know all the games or the rules yet. Swimming was one of the regular education classes he was mainstreamed into.

One day as he sat on the pool side bench with his class, a girl approached Coach Carr and told him she would not be swimming that day. She was fully dressed in school clothes, shoes, a Redman jacket, and she carried a backpack full of text books on her shoulder. Some regular education boys sitting close to Brian dared him to push her into the pool. He said he didn’t know, and they assured him it was a good idea, and everybody would think it was funny. Whatever went through Brian’s mind at that moment will never be known to anyone but him, but he did it. He pushed her in ~ school clothes, shoes, Redman jacket, backpack and all. Her name was Wendy.

A stern teacher from the principal’s office called, explained what had happened, and asked me to pick Brian up immediately. He was expelled from school for two days, with the intention that when he returned, he would have a clearer understanding of appropriate behavior and decision-making. I was too distraught to ask what happened to the boys who told him to do it.

Brian lost his allowance for a month in order to buy Wendy a bouquet of flowers, a box of candy and a card, which he drew a hundred sad faces on. When I dropped him off at school two days later, I believed that how we treat girls was a lesson indelibly imprinted upon him. When he got home that night I said, “Did you take care of that today?” He said he did, and we never talked about it again.

I looked at Wendy in the Christmas classroom, and smiled painfully. “I’m glad to meet you, Wendy,” I croaked. She said something to me that I will remember for always. She said, “What happened to me with Brian changed my life. When he came back to school after his suspension, he walked into the pool area carrying flowers and a present. Everybody, even Coach Carr, stopped breathing. I was standing by my girlfriends, and he walked over to me and never looked me in the eye. He set the flowers and the present on the floor in front of my feet and whispered, ‘I’m sorry, Wendy,’ and walked out of the room. All the girls cried, all the boys pretended they weren’t crying, and no one looked at anybody else or said a word. I thought about that for a long time, and I decided I wanted to spend my life helping and working with people like Brian. I graduated from high school last year, and I’m at Northern now in the Special Education Program. I just wanted you to know.”

The lascivious dance ended, and Wendy and I waved to each other as she was pulled in another direction by one of her students. That was our Wendy ~ Brian’s Wendy. I stood face to face with my boy. Who would I be today if I had never been part of Brian’s world? I don’t think I’d be working in a group home where 16 mentally disabled adults call me mom, and I don’t think I would have learned enough love to be able to take someone else’s infant who would never walk, speak or be toilet trained, and raise her as my own. Much of who I am today is because of what I learned from my son.

“Well, well, well,” I said to Brian with mock sternness. “A smart mother knows when it’s better not to ask questions, because you might find something out, if you know what I mean. Let me just say one thing here ... when we get home, how about you teach me that dance?”
Blue Baby smiled and took my hand and said, “Rrrright.”