About ten years ago, at our home in Estes Park, I woke up at five AM, my typical time for rising. I went to Phyllis’ room, expecting her to be asleep. She was sitting up in bed, crying, tears running down her cheeks. Must have been crying since about two AM, three hours ago, when I scolded her for continuing to make paper loops, rather than getting ready for bed.
Showing a bit of anger, I had taken away her scissors, her newspapers, her strips of cut newspaper, her glue stick, and her completed loops. “You must stop making loops. 2 a.m. is too late, and you have to go to sleep!”
Phyllis just sat there on her bed, in that night’s hand-selected loose pajamas. Holding her hands out in despair, pleading, “I have to! I have to!” I did not give in.
Phyllis has Down syndrome. At the time, she was in her late forties, about four feet tall, of a moderate build, with blondish-red hair, and as cute as can be and a sweet darling. She has always been great at smiling and hugging, and melting everyone’s hearts. Everyone has always succumbed to her simple, loving attention.
Phyllis has made loops at night for years that we might use for decorations or hang on the Christmas tree. True, she wasn’t perfect. She sometimes would leave the cap off the glue bottle or stick, and it would dry up. Colored paper and glue were her favorite birthday or Christmas gifts.
We all felt that Phyllis was not getting enough sleep. She would drop off to sleep when riding in the car, sitting in a comfortable living room padded chair, or watching TV.
Her older sister, Christine, had given her a large screen display of fish swimming underwater. We set the timer to shut off at 1 a.m. It would sound a soft ending tone when it stopped. Phyllis was supposed to stop making loops when the display turned off. Then she was to go down to the kitchen and eat her nighttime snack, a diabetes related guard against low blood sugar during the night. Then she would come upstairs, brush her teeth, and go to bed.
But no, that didn’t work. Phyllis would ignore the display shutdown, continue making loops until three or four in the morning, and finally go down for her snack.
I had decided to be more forceful. And so, I got a little angry. I didn’t yell, but I spoke loudly and firmly. Phyllis is adept at picking up the mood in a room, and she sensed I was angry, but she could not respond.
So, here I was at five in the morning, staring at Phyllis, my lovely daughter, crying, evidently, since I had scolded her several hours before. And I was crushed. And the tears were flowing. Barbara and I do not recall ever seeing Phyllis cry.
My thoughts were rapid fire. How could I have done this to her, this shy, simple person who always wanted to please you, who had her own simple understanding of the world, who ignored complications? She loved us all and couldn’t understand why anyone would be mean to her. It was a moment of profound realization for me.
I thought of how Phyllis enjoys using her hands and being touched on her hands, having her palms rubbed gently. This is a common trait on Barbara’s side of the family. Barbara is a dental hygienist and an artist who especially loves working with clay.
We used to say that if Phyllis had not been born with a disability, she would probably be a famous artist, or a successful surgeon, or maybe a really good pickpocket. While Phyllis is far below average in traditional intelligence, she is above average in grasping basic feelings.
And when Phyllis said “I have to!” she was expressing her deepest emotions. She didn’t know how to present a logical argument, how to go into convincing detail, or how to say, “Can’t you understand? Nighttime is my time alone. Using my hands to make these loops is a fundamental pleasure. Personal fulfillment. No way will I give this up. Don’t even think about asking me to stop making loops!”
I fully understood the situation, and I felt extremely guilty about having treated her so thoughtlessly. I wanted to get on my knees and say, “I’m so sorry. Please tell me that you understand. That you’re not mad at me.”
I did the next best thing. I sat on the bed close to her, hugged her, felt her tears on my own cheek, tasted the salt. “I am so sorry. Daddy’s not mad at you. You can make loops. You are a good girl. Daddy loves you. Yes, I love you.”
The tears dried up. Phyllis began breathing normally. I laid her down, head on her pillow, and covered her. She was asleep.
Phyllis is now 62. She is rather old for someone with Down syndrome. She continues to make loops at night in a sort of haphazard fashion. She cuts the newspaper into strips but doesn’t glue them into loops anymore. Her bag of last night’s creations consists of a bunch of unglued strips. As has been done for years, they are emptied into a larger bag in the garage and eventually taken to recycling.
She is happy in her old age, more than many of us. I have never again scolded her so strongly, and she has never cried again.
Down syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is also known as trisomy 21. This extra genetic material alters development and can cause both physical and intellectual challenges. The prevalence of Down syndrome varies slightly depending on factors such as age of the mother and geographic location. In the U.S. Down syndrom occurs in approximately 1 in 700 live births, or approximately 5,300 new cases per year.
Phil Zwart, 89, is retired from being a developer of computer software. For a while, Phil did portrait drawings at a flea market outside of Dallas, TX. He and his wife, Barbara, and his daughter, Phyllis, have been Estes Park residents for over 20 years.