Living with an angel

It is about 10 o’clock in the morning. I am at my desk, a large, cluttered drafting table at our home in Estes Park. Reading news on the computer screen. Either standing or partially resting on the tall drafting stool. She quietly approaches behind me. Gently puts her arm around my waist. Her head against my shoulder. It’s our daughter, Phyllis, our resident angel.

Phyllis has Down syndrome. She barely reads or writes. She likes to talk and ask questions but tends to say the same things. She loves and hugs a lot.

I look down, kiss her head, smell her hair from last night’s bath, say, “Hi, my girl. How’re you doing?” 

She steps back. Places her hands on her chest. Signalling that I should look at what she has chosen to wear this day. “Oh! I like the rainbow on your top. And the pink shirt underneath. And the red pants and purple shoes.”

She grins. “What’s daddy gonna do today?” A frequent question throughout the day. I tell her my planned activities, emphasizing anything that will involve her. Like bowling, her doctor appointment, a snack at breaktime, exercising, eating out. She laughs at all that includes her. Easy to make her laugh.

Phyllis, 61 years old, stands four feet tall, has strawberry blond hair, and medium build. She always wants to do things herself, especially, choosing her clothes, cooking, cleaning her room. She is a bit weak at that last one. She is a good worker. Loves to help with dishes, vacuuming, wash, cooking. She makes good pancakes, after her mom has mixed the batter. And good at making cookies. You’ll need to be on guard when she makes you a sandwich. Her love of mustard leads to excess. Be prepared to scrape off much of the yellow.

Reaching 61 is pretty old for someone with Down syndrome. Years ago, doctors warned my wife, Barbara, and me that she would not make it to 50. Age is beginning to show on Phyllis. We’ve restricted her vacuuming. She would keep going at it even though it hurts her back and shoulders. Fifteen years ago, she developed diabetes which has required extra attention and doctor visits, and even some trips to the emergency room.

When Phyllis was born, the obstetrician warned us that certain physical traits indicated that she would be slower than normal and cautioned that we should be suspicious of anyone offering some kind of cure.

Searching in the library, I learned that her condition was called “mongoloid,” a term used at that time because people born with Down syndrome appear to have almond shaped eyes. I found disturbing pictures of young and old inmates in state institutions. This was hard for me.

Barbara was unfazed. She was content with her newborn, warmly holding her, feeding her, kissing her, offering a mother’s love and care. Within a month or so, we attended a meeting of the Handicapped Children’s Guild in Florissant, Missouri, where our home was located.

We met wonderful parents and their beautiful children, some who also had Down syndrome. Apparently, Phyllis would be a challenge and a reward. Over the years, we have come to think of her as a gift, our angel.

A parent’s greatest joy is seeing their child happy. We have that in abundance. Phyllis is easily pleased. She enjoys the simple things, like batting a beach ball back and forth, and seeing others talk and smile. While sitting with a group and listening to the conversation, she will look at each person and smile, she and will join in the laughing even when not getting the joke. For a while, she would notice someone who seemed a bit glum and would go to them and say “You O.K.? Something wrong?”

If you sit on the couch, Phyllis will plop down next to you. Same with sitting on the floor. She loves to be near people. Always. And she will never step away from a hug from someone she knows. My mother used to dote on Leo Buscaglia, a motivational speaker on TV. He would say that everyone needs at least four hugs a day and preferably ten hugs. With Phyllis, I get my ten hugs.

Phyllis is keen on anything related to food. Once, Barbara gave Phyllis the grocery list. Phyllis somehow recognized the words and went through the store filling the basket and rejoining Barbara at checkout. Even today, she loves pushing the basket through the grocery store, helping to pick fruit and other items. She jumps at joining me when driving to a restaurant for takeout.

In her high school years, she loved dancing. We all enjoyed her school sock hops. After a musical at the movies, Phyllis was good at mimicking the dance moves as we left the theatre.

If Phyllis had something interesting to say, then she was going to say it. Which meant that she could not keep a secret. Our youngest, Donna, had a hard time getting away with anything. Phyllis relentlessly tattled on her.

I tend to be a bit silly. Phyllis welcomes it. Even now, at 61, Phyllis will sometimes enjoy watching me shave, like in younger times. After lathering, I say “I’m Santa Claus. Come here little girl. Kiss Santa Claus.” She shies away, “Daaaddee!” “I’m not your daddy. I’m Santa Claus. Now Dasher. Now Dancer. Now . . .  And Rudolf….,” and so on.

Phyllis never rushes. If you try to hurry her, she moves half as fast. No getting around it. At her first special Olympics, we were laughing as she stood at the starting line. “Look at her. She’s not going to move. She’ll just stand there and watch the others.” The starting gun went off, and Phyllis took off like she had been shot out of a cannon. She won that race, and others. We were amazed. She has medals and ribbons on her bedroom wall.

At times, Phyllis will be grouchy and uncooperative. And she’ll speak up, “No. Don’t bother me. Leave me alone.” And she will regularly make up things like “Mom wants to get ice cream.” “Mom says I can have some cake.” Or, when talking to Barbara, it’ll be “Daddy says . . .,” whatever she wants it to be.

She loves doing things with her hands. She scribbles meaningless marks on all the days on her calendar. At night, when we are sleeping, she makes long chains of paper loops. They are very well done. One Christmas, we used them on the tree.

As we age and slowly go downhill, it is more of a struggle dealing with Phyllis’ increasing health needs. Her diabetes requires extra care. She has a few hairline fractures in her neck and her posture is somewhat bent over with her head down. Physical therapy, chiropractor visits, and calcium pills all help, but do not fix the problem.

The future is not bright. Our bodies are gradually wearing out.

I have seen relatives fall into deep grief after caring night and day for a dying loved one. After the loss, they do not care that a burden has been lifted from their shoulders. It seems that the more someone needs us, the more we love them.

That is how we are with Phyllis. Phyllis cannot handle life’s demands. Her total dependence on us magnifies our love. We will be heartbroken when our angel moves on to the next life. I will miss everything about her. Those many smiles, those laughs at my silliness and all those hugs that come from living with an angel.

Down syndrome is a genetic disorder caused by the presence of an extra copy of chromosome 21. The condition can affect how the brain and body develop. An estimated 5,000 babies are born with the condition in the U.S. every year, which equals about 1 in every 775 babies. There are about 200,000 people in the U.S. diagnosed with Down syndrome. For more information about Down syndrome, click here to be directed to the National Down Syndrome Society website.

Phil Zwart is a participant in Elisabeth Sherwin’s memoir class at the Estes Valley Rec Center.