Down Syndrome: A Story Of Unconditional Love

(Originally written in 1998)

Irene in a favourite dress as a young girl

Irene was born on August 26, 1945. Before she celebrated her first birthday, her mother's worst fears had come true. Irene was diagnosed with Down Syndrome.

Down Syndrome is one of the most common chromosome abnormalities in humans. It occurs in about 1 in 1,000 babies born each year. Individuals with Down Syndrome have forty-seven chromosomes instead of the usual forty-six.

At first, Irene's mother hadn't noticed Irene's slanting eyes, fat nose, or small round ears; typical facial features of a person with Down Syndrome. But Irene was not able to sit up on her own or do things that other babies her age were doing.

Irene's mother suspected something might be seriously wrong. Once diagnosed, Irene's doctor recommended that she be placed in an institution immediately. He felt that Irene would never function normally or lead a full life. However, Irene's parents refused to follow this advice.

Studies have shown that, in general, children raised at home have a higher I.Q. and achieve more than those living in institutions.

During the next eleven years, Irene's family and friends taught Irene as many basic skills as time would allow.

Tongue protrusion, drooling, runny nose, and watery eyes are a few conditions associated with Down Syndrome.

Constant reminders helped Irene learn to wipe her own nose and eyes and keep her tongue in her mouth most of the time. She was taught proper table manners and learned how to do simple household chores and her favourite task was dusting.

With a little help, Irene maintained her own personal hygiene and grooming and learned how to speak clearly. She communicated well with her five older siblings, other family members, and close friends.

When her mother became ill, Irene lived in an institution for over a year. When Irene returned home, the family was devastated to see the change in her. She could no longer speak and every skill she had mastered had been erased. The reality of Irene's decline drove her mother to search for a school Irene could attend but there was no such school.

Today, however, public schools have special education classes for children with developmental delays. With supervision and patience, a child with Down Syndrome can thrive in a school setting and learn many social skills from other children.

Irene's mother contacted everyone she could think of for help. The president of the public school council approached the school inspector on Irene's behalf and the inspector agreed to authorize the launching of a new school if ten or more children could be found to attend. A retired teacher volunteered her services and, as word got around, an entire community came together and a school was formed!

Irene's father, a retired truck driver, drove the children in a rented van. The school was named after the retired teacher and, today The Eileen Langley Centre still operates as a workshop for disabled adults.

Many communities offer workshops for disabled adults and some work in regular industries. Irene worked in restaurants setting and clearing tables.

If the attitude of others is appropriate, individuals with Down Syndrome will feel confident, accepted, and independent.

One mother had put the word out in her community that her daughter with Down Syndrome would need extra help at school.

In an article for The Montreal Gazette, she wrote, “I fought the tears as I stood in the hall of the school watching the children arrive. I wasn't upset because no one wanted to be involved with my child. Quite the opposite. I was moved to tears because the children didn't trickle in and reluctantly agree to help, they arrived in large groups eagerly offering their help with math, spelling and on the playground. We weren't paying them. They were not coerced. They were there because they had already discovered one simple unavoidable fact; Valerie is a wonderful individual and since she likes everyone, they cannot help but like her."

(Kristine Nyhout was a freelance writer living in London, Ontario at the time this article was written).

Just as love and acceptance are vital for growth and development, so is a healthy lifestyle.

When Irene was born, medicine such as Penicillin was not available. Her parents were told that Irene would probably live no longer than twenty years.

According to The Mayo Clinic, people with Down Syndrome typically live at least sixty years. About one hundred years ago, however, people with the condition often died before they reached age ten.

At age fifty-two, most of Irene's health problems are similar to those of any other woman her age; arthritis, cataracts, and a thyroid condition. With medication, regular check-ups, and a proper health routine, Irene continues to lead a full, healthy life.

Irene is living in a group home under the supervision of a local association for community living. She is semi-independent and performs daily tasks. Dusting is still her favourite chore! She visits with friends from the Eileen Langley Centre and looks forward to spending time with family.

I treasure visits with Irene in my home. My spirits lift the moment I see her.

"Hello, my dear niece," she exclaims. "It's so nice to see you. What a lovely home you have."

(She has seen my home many times).

When I bring her a snack, she can't thank me enough.

"Oh, thank you, my dear," she says. "What a wonderful niece you are. This is so lovely! You brought me a snack. Thank you so much."

The “over-the-top” gratitude seems ridiculous at times. Then I realize that I, too, can be moved to tears for it is Irene who reminds me to be thankful; thankful for my lovely home and thankful for Ginger Ale!

I think it would be wonderful to see the world through Irene's eyes every day. She taught me to look at my kitchen sink and see a collection of beautiful china rather than a pile of dirty dishes. I realize how precious my visits are with Irene. I value every moment I spend with her. She adds meaning to my life.

I've learned from Irene that I am the lucky one; lucky to have her in my life and lucky to have the privilege of basking in her "Unconditional Love".

Update: Irene lived her remaining years at Spruce Lodge Home For The Aged in her hometown of Stratford, Ontario where she passed away peacefully at the age of sixty-three.

obituary image of Irene

The Down Syndrome Creed

My face may be different But my feelings the same
I laugh and I cry And I take pride in my gains
I was sent here among you To teach you to love
As God in the heavens Looks down from above
To Him I'm no different His love knows no bounds
It's those here among you in cities and towns
That judge me by standards That man has imparted
But this family I've chosen Will help me get started
For I'm one of the children So special and few
That came here to learn The same lessons as you
That love is acceptance it must come from the heart
We all have the same purpose Though not the same start
The Lord gave me Me To live and embrace
And I do it as you do But at my own pace

Author Unknown

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