Your Daughter has Down Syndrome
Michelle taught our
family about love
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!"
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.
Michelle was born, we knew she was floppy, could not suck
properly, and had an unusual eye shape, but we did not realize
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
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?
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."
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
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.
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
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.
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.
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.
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
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
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
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.
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
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."
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."
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.
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?
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
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.
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.