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Lives Changed Forever: An Essay from the Heart

Friday, August 13, 2004 @ 12:57 AM

I wanted to hold and feed my new baby, but the doctor kept finding excuses to keep him from me. When my husband arrived, we were given the news — our son had Down syndrome. A horrible lump grew in my throat and threatened to choke off my oxygen supply. I knew my life was changed forever.

Looking back, I am sure my fear was based on my ignorance about Down syndrome. I worried about his appearance, his toilet training, his popularity in school and whether or not he would have a date for the prom. I thought too much about the future.

Then the magic took hold. When I held my son, he no longer belonged to a classification of people I didn't understand. He become Jordan; my little boy. Soon he became so much more.

Having had a great deal of academic success in my life, brain power was very important to me. My husband had the same experience and respect for sports. Clearly Jordan would follow in neither of our footsteps. But oh, what a trail he is making! His own little footsteps blaze forth in a way that judges no one and charms everyone. He has taught us to be more patient with our older sons when they get imperfect report cards or search for four leaf clovers during baseball games.

Certainly life has been different, but the irony is this: Life has been better since Jordan than we ever could have imagined. We enjoy all the details. We listen to the wind. We know that neither athletic nor academic success are measures of happiness for any of our children.

When I look back at the early days and the fear we had for our child's future, I wish we had more information that was positive. It was all so pessimistic and clinical, "...your child will never...don't expect him to be able to ... it will take him longer to master..." The book I had been given was filled with charts and graphs predicting doom. The pictures were largely of children who had been institutionalized and had no sparkle in their eyes. But in my Jordan's eyes was not some disappointing syndrome, but true sparkle. This is what drove me to produce Beautiful Faces.

This calendar depicts beautiful children with Down syndrome enjoying everyday activities with their friends. This is who my son and others like him have become. Great kids who giggle and play and get upset when told "no". Kids who run to the door when Grammy comes and sit on Grampy's lap for stories.

I hope Beautiful Faces can get to new parents early and help them to see the great lives ahead for them, for their child with Down syndrome, and for the siblings, aunts, uncles and grandparents blessed with a fresh way of seeing things. All children are created equal. Some just have the difficult task of proving it to us!

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