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December 10, 2003

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Publication Date: Wednesday, December 10, 2003

Living the life of Riley Living the life of Riley (December 10, 2003)

Menlo Park mom tells her story about a special child

By Andi Dehne

I learned that I was pregnant with my first child in August 2001. I was 33 years old. As a kindergarten teacher, I had eagerly anticipated having a child of my own for years. I dreamed of soccer games, school field trips, class plays, high school dances, first crushes, driver's licenses, college, marriage, grandkids, and more.

Eighteen weeks into the pregnancy my obstetrician called with the results of a screening test that brought all those dreams to a screeching halt.

"There is a 1 in 14 chance that your child has Down syndrome," she said.

Deep down, my maternal instincts were telling me that my baby was fine. Nonetheless, my husband, Jeremy, and I decided to go ahead with an amniocentesis for peace of mind. Two weeks later, we learned that our baby boy did indeed have an extra 21st chromosome in each one of his cells. He had Down syndrome. On that day, November 27, 2001, I felt as if I would never smile or laugh again.

The medical community offered us the "choice" of termination. In a state of emotional stress, unbearable sadness, and fear of a lifestyle we hadn't expected or wanted, we found ourselves trying to justify such a choice.

After searching our hearts, we ultimately decided that our son deserved the chance to show us, and the world, who he was and who he was meant to be.

In the months preceding the birth, we learned that our baby had a serious heart defect that would need repairing before he was six months old. In those months, I also did lots of research. I learned that people with Down syndrome are mildly to moderately mentally retarded, that they have low muscle tone, may be more prone to ear infections, respiratory issues, digestive problems, hearing and vision loss, early onset Alzheimer's, and the list went on.

Suddenly I didn't want to know any more about Down syndrome. All I wanted was to meet my son. I yearned to hold him and tell him that I loved him and that everything would be OK.
Meeting Riley

On April 4, 2002, this yearning was satisfied as our son, Riley Dehne, entered the world at Lucile Packard Children's Hospital at Stanford. Even with his heart defect, his Apgar scores (assessment of how well a child is doing at birth) were good, and we took him home 48 hours later.

Three months later, the surgeons at Packard repaired his heart. Handing my 3-month-old off to the anesthesiologist with the knowledge that, over the next five hours, his chest would be opened and his walnut-sized heart would be paralyzed and repaired, was one of the hardest things I have ever done. Luckily, the surgery went smoothly and Riley's heart is working great.

Today, Riley is 18 months old and the light of my life. He attends weekly speech, physical, and occupational therapies at CAR (Community Association for Rehabilitation) in Palo Alto, and is developing wonderfully. gymnastics and music classes also keep him quite busy. He has a great sense of humor and gives his daddy a special smile when he comes home each day.

Riley's favorite activities lately are opening all the cabinets and drawers in the house, rolling balls and watching "The Wiggles" on TV. He is learning sign language to communicate with us, and he just started learning to walk. Like any 18-month-old, he is starting to develop quite the toddler's attitude! Could the terrible twos really be right around the corner?
Attainable dreams

While pregnant with Riley, I was so scared of all the things the doctors told me about Down syndrome. What they didn't tell me is how Riley would bring so much goodness into my life. They didn't tell me that I would become a more compassionate and accepting person just from knowing him. They didn't tell me of the amazing people I would meet because of him, and how he would open hearts and minds just by being who he is. They never told me how grateful I would be to be his mommy.

When I first learned that Riley had Down syndrome, I thought my world had ended. I was so wrong. This boy fills my heart with more love than I imagined was possible. I look at him and I see perfection. I hold him close and my heart feels peaceful. His kisses are pure joy. I want to shout from the rooftops his every accomplishment. He owns my heart.

And yes, I believe those dreams that I had for Riley are still attainable. I also dream that he will have friends and people in his life who will see him as an individual, not as a condition. I dream that he will be treated fairly and kindly by others. I dream that he will get a good education and have a job that he loves. I dream of him finding love with a special someone and living a good life.

When I was expecting Riley, I had a feeling that he was "fine." At that time, I thought "fine" meant that he wouldn't have Down syndrome. As it turns out, Riley is fine! He is exactly the person he was meant to be. And I cannot imagine life without him.
About Down syndrome

To learn more about Down syndrome and find referrals to local and national resources, visit the National Down Syndrome Society Web site, www.ndss.org, or call the NDSS Helpline at 800-221-4602.
More personal stories

Ten families tell their personal stories in the recent book, "Family Makers: Joyful Lives With Down Syndrome," compiled by Janette MacDonell Mandema of Atherton, with photographs by Kimberly Wassenberg. Copies are available for $24.95 at Kepler's Books and Magazines in Menlo Park. Proceeds from the book's sales will go toward Down syndrome research.


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