Friday, August 01, 2003
Down syndrome proves to be uplifting experience Family rejoices in disabled son story by Shelly Lawler • photos by Val MazzengaPortrait of a happy family: Emily, left, Kylie and Braden with their parents, Stacy and Corey Graves.
Stacy Graves was thrilled in November 2000 when she heard she was pregnant for the second time. When the ultrasound showed twins, she was overjoyed. She and her husband, Corey, had recently moved to Hoffman Estates. They were making new friends and building the family of their dreams.
At Christmas, their 10-month-old daughter Kylie handed each set of grandparents a copy of the ultrasound in a card Stacy had made: "I'm going to be a big sister and look it's two—a boy and a girl!"
The families celebrated and pledged their support. Little did Stacy and Corey know how much they would need it.
When she was 27 weeks pregnant, Stacy went into labor and was airlifted to Rockford Hospital. There, high-risk specialist Dr. Erik Smith told the expectant parents an amniocentesis showed their daughter would be healthy, but their son would be born with Down syndrome.
Instantly, Stacy and Corey joined some 300,000 American parents with a Down syndrome child. In the two years since the twins, Braden and Emily, were born, the Graves have been on a sometimes painful, sometimes joyous journey of discovery.
"When Dr. Smith first told us that our son had Down syndrome, we were in shock," says Stacy. "I was 27 years old, and thought I was too young to have a Down child. As a teacher, I had worked with special needs kids and was aware of range of abilities, but Corey had no prior experience. We cried for two days and then came to the conclusion: This is what was meant to be, we are going to deal with it."
Down syndrome is a chromosomal disorder that occurs at conception. It results when there is an extra copy of the 21st chromosome, trisomy 21. While the chance of a woman having a baby with Down syndrome increases significantly with age, approximately one baby in every 800 to 1,000 has Down syndrome, says Jennifer Schell Podoll of the National Down Syndrome Society in Washington D.C.
"Children born with Down syndrome have intellectual and physical delays and are at greater risk for certain medical conditions," says Podoll. Because there is a broad range and variation of cognitive delays, there is a broad range of what kids with Down syndrome can or cannot do. The Graves won't know where Braden falls on that continuum until he turns 3 and can be evaluated by a team of therapists. While there are an array of services that can help him developmentally, there is no cure.
"While I was in the hospital, one of the nurses gave me a poem called ‘Welcome to Holland,'" Stacy remembers. "It's all about how you planned a trip to Italy, dreamed of all the places you would visit, packed accordingly and then just before touchdown, the pilot says: ‘Welcome to Holland.' Somehow your direction completely changed and instead of being where you imagined. . . You are in Holland. It's not what you expected, but you discover how beautiful life can be. . . in Holland. That is how we are finding life with Braden and with Down syndrome."
Before he turned 1, Braden underwent four major operations. The first, to correct a condition in which the stomach is not connected to the intestine, occurred when he was just 3 days old. At 5 weeks, doctors inserted a feeding tube into his stomach. Two weeks later, his stomach filled with air and he needed emergency surgery to release the pressure. At 9 months, he had open heart surgery, and at 1 year he had corrective hearing surgery.
The ups and downs "As a parent of a Down syndrome child, I don't look too far ahead; I just take it one day at a time," Stacy says. "I can't live my life in fear of what may happen. I want to live each day to the fullest." At the same time, she is keenly aware of the medical risks facing Braden. In his annual checkup, he is tested for leukemia and hypothyroidism. Every two months, he sees an ear, nose and throat specialist to check his hearing. He is more susceptible to infection and when he does get sick, takes longer to heal.
Stacy and Corey have support from their families, and even more help from "UPS for DownS," [United Parent Support for Down syndrome] a Northwest suburban support group providing information on Down syndrome. Stacy is donations coordinator.
"We have to deal with some very hard issues," says Stacy. "There is so much to learn."
There also is time to celebrate. Just before Braden and Emily turned 2, Braden walked for the first time. "Corey and I were in the dining room on our knees yelling ‘you can do it!,'" Stacy says. "Emily and Kylie were jumping up and down chanting ‘yes you can!' He took 15 steps, and I couldn't wait to tell people," says Stacy, her voice soft, strong and filled with maternal pride. "Especially my UPS for DownS group. I wanted other mothers to know that there is always hope. We aren't just living some bleak story."
She pauses for a beat, adjusting her thoughts. "The challenges Corey and I have faced with Braden have, at times, been overwhelming. But in the end, have made our marriage stronger and have made us re-evaluate what is important."
Stacy and Corey both grew up in northeast Kansas, in small towns just five miles apart. Though they had many friends in common, their paths didn't cross until she was 23 and he was 25. She had just graduated from University of Kansas with an education degree. He was living in Silicon Valley working for Texas Instruments. They met at a wedding back home in Kansas. He asked her to dance and a year later, he proposed.
Says Stacy, "Braden has taught me to see the world differently. I have learned to stop and celebrate each and every victory. Our milestones may be different, but we still have them and we need to celebrate."
Stacy has also created a neighborhood network of support. Linda and Rick Saviano, her next-door neighbors, and Linda's mother, Fran, have opened their hearts and home, and become extended family. Linda watches Kylie and Emily twice a week when Stacy takes Braden to therapy. "Stacy and Corey are amazing parents," says Linda. "They are determined to do all they can for their children and we are grateful to be part of their life."
Today at 2, Braden is walking with more stability. He is learning sign language and can sign 14 words.
"The greatest challenge I face now, like most moms, is to make sure each one of my kids is getting what they need," says Stacy.
Each week, she takes Emily and Kylie to play groups and park district classes where they can can play with kids their own age. She also is careful to make "alone time" with both girls.
"To Emily and Kylie, Braden is just their brother. They sense he needs a little extra help and they are very encouraging. He has affected them like he has affected me; we all have more patience and understanding."
When he turns 3, the team of therapists will evaluate Braden to determine his placement for preschool in the public school system. Children with Down syndrome have been included in regular academic classrooms in schools across the country. Some kids are integrated in specific courses, while others are included in regular classrooms for all subjects. "Our goal for Braden is full inclusion," says Stacy.
This morning Braden sits in the corner of the living room playing with his toys. Each time he fills the basket, Emily dumps it out on the floor. Both are laughing. Emily yells "Out!" while Braden signs words with increasing energy. Kylie is showing her mom the artwork she made at Linda's. "This is my family!" says Kylie. "Braden, Emily, Me, Daddy. . ." The largest figure is in the middle, surrounded by smiling faces and intertwined hands. "And that's you Mommy!" Kylie hands the paper to Stacy, then runs to join her brother and sister in play.
Shelly Lawler is a is a freelance writer and consultant. She lives in Hoffman Estates with her husband, acclaimed photojournalist Val Mazzenga.