Your Daughter has Down Syndrome
Michelle taught our family about love
and generosity

By Laurie Bennie

Our three children eagerly raced to the driveway as my husband. Norm, and I returned from a weekend trip. David and Yvonne both shouted, "Hi! What did you bring me?" Michelle, our teenager with Down Syndrome, hugged us and said, " I MISSED you, Mommy and Daddy!"

For seventeen years, our special needs daughter has been teaching us about love and generosity of spirit. Although the journey has not always been easy or painless, we can only thank God for the growing, learning and blessing.

When Michelle was born, we knew she was floppy, could not suck properly, and had an unusual eye shape, but we did not realize the significance.

I was by myself on the fourth morning when the doctor entered my hospital room and shut the door. "I'm afraid your daughter has Down Syndrome." It was spoken as gently as possible, but I felt my whole future collide with a brick wall.

My world became a black and white existence, having lost all color and joy. All music became noise, all food tasted like chalk; how could there ever be pleasure again?

Giving up Michelle was never considered. I did have thoughts like, "I will move with her to a strange city, and just hide from the world for the rest of my life. It won't be real as long as no-one finds out about it."

Norm chose not to believe the suspected diagnosis, often entering her room at night to look at her and think: "Naa, there is nothing wrong! She is just a normal beautiful little baby."

When genetic testing confirmed she had Down Syndrome, Norm fought fears of how extensive the disability would be. Would she walk, or be paralyzed in a wheelchair? Could we ever have normal kids? What kind of future was there for us? And for her? Norm and I questioned, "Why has this happened? Why did we have to be different? Didn't everyone deserve normal kids?" All we could do was to trust that this was part of God's plan for us. Somehow, the strength we needed would be provided.

In 1979, the understanding was growing that these children could accomplish much and have a full life, so there was some hope. On the other hand, the written information about ''Mongolism" included gloomy predictions of severe mental retardation, a thirty-year life span and recommendations of institutional care.

One surprising mercy was that while my MIND tried to deal with the fact of her handicap, my HEART took care of the baby herself. My sorrow about Michelle's limited chances, plus unfulfilled hopes for my first-born, was all quite unconnected to the reality of the daughter in my arms. Daily routines and small advances helped to keep our thoughts on the present, not on the black void of the future.

Fortunately, we have been blessed with a close family plus a caring church. They made the time to visit, just to be with us, and share our grief. We were surrounded by love and acceptance, and my isolated feelings were soon replaced with the understanding that together we would get through it.

Michelle, with her full head of reddish blond hair and large china blue eyes, was loved for herself. I remember a time before Michelle's release from Hospital. Norm and I were picking up some groceries. I looked at all the shopping carts with children and grieved: "My child will never just normally bounce around in a cart like the others." It turned out that, within two years, we DID take two children shopping just like everyone else, probably without my daughter ever being considered unusual.

I also found help through other people. When Michelle was six weeks old, we joined a weekly exercise/support group for babies with Down Syndrome and their morns. Routines, games and tips were taught that helped their fine and gross motor skills. They even lent us a special chair to help her sit up better. One of the nurses in the support group had a 23-year-old daughter with Down Syndrome, and descriptions of the active life she enjoyed made Michelle's future look much brighter. Also, there was always time for parents to share daily triumphs and struggles. Even today, the bonds formed continue through school and organizations like the Special Olympics.

Michelle attended an integrated day care, then partially integrated schooling, and now has a special class within a regular high school. She reads beginner books, uses a calculator well, and is mastering job skills, independent bus travel, plus appropriate behavioral expectations.

Norm and I have wondered: if our lives could be rewritten to simply omit Michelle, would we choose that? Our honest answer is "No". She has enriched both our lives in too many ways. Norm treasures Michelle's ability to love and forgive. A simple "I'm sorry" is all she needs to forget any wrong, (even practical jokes by her brother, David, age 16). Yvonne, age twelve, says, "I understand a lot about what it is like to have a handicap" (or, in current jargon, 'a mental challenge'). David adds, "She can see the good in anything".

Michelle has enabled me to grow by speaking about my experiences through Down Syndrome associations and the Children's Hospital. There have been many chances to address groups, including medical students, plus attend professional conferences as a delegate.

Also, while I struggle to openly express affection, Michelle teaches lavish empathy. Although it is a cliché to say that people with Down Syndrome are very loving, it is the truth. Many teenagers are too self-centered to greet or converse with adult visitors. She never has more important business than sharing a hug.

Michelle is always trying to help everyone around her. She assists her grandmother out of the car, and once inside, carefully removes Grandma's coat before guiding her into a chair. Michelle then discusses the bulletin-folding that her class does for Grandma's church. Her beloved Barbies are reintroduced, and the cats. (She can't imagine that Grandma isn't terribly fond of cats.) "Can I bring you some tea"" she asks. Soon, with Daddy's help, tea and a plate of cookies are served.

When feeling unloved, Michelle becomes quite difficult, and her social behaviors need some work. However, she thrives on affection and praise, seeking ways to achieve it. She enjoys emptying the dishwasher, tidying her room, and saying grace at dinner (the family is never quite sure of everything that will get mentioned before she reaches "Amen."

At church, Michelle loves helping me care for the pre-schoolers. She helps the little ones cut and paste, and insists, "I want to be a teacher when I grow up."

Michelle loves swimming, especially underwater using a unique up-and-down motion. Puzzled instructors understood her technique after a mention of her passion for Disney's "the Little Mermaid." She participates in both competitive and synchronized swimming with Special Olympics, plus Rhythmic Gymnastics, and Equestrian.

Michelle has always loved to draw pictures in her unique style. Every pencil and eraser in the house keeps finding its way into her bulging pencil case. Christmas 1995 saw her master the last tricky bit of her name in cursive writing - the double 'n'. She is working hard at learning how to read, reminding me: "I can drive the car when I pass the test, right mom?" (And who knows?

The special quality that makes her so unique is very hard to define. Perhaps it is her way of seeing truth because it's not cluttered up with other people's ideas. She is true to herself, while the rest of us are pulled by many different forces.

Michelle does not understand a lot of what goes on in the world, but she has an understanding of people; of how to make them happy again; of what is important in a person; and what is not. We could focus on the negatives, now that our daughter has differences and limitations obvious to the world. I could choose to grieve over them, watching for every inequality that comes her way; or pretend to be oblivious or untroubled by it. The best course is to try focusing on all that God has taught and opened up for us through her.

God continues His plan of growth in all our lives through Michelle's presence. She has carved a very precious difference in the lives of everyone she has touched.


 
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