Living With Down Syndrome

Families struggle through a variety of difficulties. Often, this process brings families together and helps them form strong, cohesive units. Two Edmond families were willing to share their stories of triumph over one of their challenges-parenting a child with Down syndrome.

Becky Lidia and her husband Daryl have three boys-eleven-year old Chandler, eight-year old Chaz and three-year old Chaney. Becky found out she was pregnant with Chaney when she was thirty-eight, making her what is considered an older mother.

Becky chose to have a level two ultrasound, which revealed a heart defect. Next, the doctor performed an amniocentesis. After a twenty-four hour wait, the family was informed that their newest addition had Down syndrome and a heart defect, the latter of which could be repaired when the baby was a few months old.

"The news shocked and paralyzed us," Lidia said. "This was the kind of thing that happened to other people, not to us. I now realize that probably every parent of a child with Down syndrome thought the very same thing."

On July 22, 2003, Chaney entered the world weighing eight pounds, four ounces. After two heart surgeries, Chaney finally went home on Labor Day.

Becky said caring for a child with Down syndrome is not all that different from caring for a "typical" child. Chaney attends Bible classes at Memorial Road Church of Christ and is enrolled in the three-year old program at Chisholm Elementary School where he receives speech, occupational and physical therapy. The family makes adjustments but tries to treat Chaney like his brothers.

"Our approach has been from the very beginning to not treat Chaney differently simply because he has Down syndrome," Becky said.

The older boys are accepting and love their little brother and he adores them. Both sets of grandparents have also been very supportive and helpful.

During the past three years, the Lidias have participated in the annual Down Syndrome Association of Central Oklahoma (DSACO) Buddy Walk. In that time, the "Chaney Gang" has raised $15,000 for Down syndrome research, education and advocacy.

"Chaney and our family and countless other families benefit from this organization and we are proud to be able to support its efforts," Becky said.

The Lidias believe parents who have children with Down syndrome benefit by getting to know other parents in the same situation. Sharing thoughts and concerns is beneficial in coping with the diagnosis.

Becky said she truly counts her blessings and has learned the importance of looking toward the positives. The family prays their son will have a great future.

"We hope that Chaney's diagnosis will not define him or us but that we will embrace it and help him to reach his full potential," Becky said.

Cindy and Allen Gould have four children-eleven-year old Tressa, nine-year old Tamra, six-year old Taryn and three-year old Trafford. Cindy said she was at a higher risk of having a child with Down syndrome because she, like Becky Lidia, was an older mom at forty-one years old.

The Goulds had the initial ultrasound performed. At that time, no indicators of Down syndrome were present. Their son was born in November 2003 at thirty-six weeks and weighed four pounds thirteen ounces. While he had some signs of the chromosomal condition, doctors could not say for sure.

One week later, Trafford was in the hospital for jaundice and refusal to eat. He was also seen by a geneticist. Test results revealed the shocking news. At first, Cindy was concerned, confused and overwhelmed. When reality set in, she was ready to learn about Down syndrome in order to deal with it.

"I cannot say that I wasn't sad because I had dreams for my child the moment I learned I was pregnant, and since I had three healthy children, I hadn't had to deal with such a life-changing diagnosis," she said.

Allen, who had dreams of working on "manly" projects with his son, accepted the news in his own way.

"I was numb for a while and initially cried with my wife, but through education and a lot of soul-searching, my sorrow has mellowed into a new vision of Trafford's future," he explained. "At the end of the day, he is my companion and helps me with my chores such as steering the riding mower."

Trafford's big sisters love and support their little brother. Cindy said the girls look at him as their little brother, who just happens to have Down syndrome. Cindy and her daughters have taken Trafford to school where he helps teach other students about Down syndrome.

Cindy said her daughters are now more aware of people with disabilities. She hopes they will show more care and compassion for others, thanks to what they have learned from Trafford. They, along with the whole family, have participated in the last three DSACO Buddy Walks.

Trafford attends the three-year-old program at Cross Timbers twice a week, where he, like Chaney, receives speech, occupational and physical therapy. He also attends the Mother's Day Out program at Waterloo Road Baptist and Sunday school at New Covenant United Methodist.

Cindy advises parents of children with Down syndrome to learn as much as possible about the condition. The ability to correct misconceptions can be a blessing.

"You have the opportunity to be an ambassador for your child, and as such, you have the ability to show others how much your child is the same as other children rather than different," she said. "First and foremost, your child is just that, your child-their diagnosis is just a part of them, but it is not 'all' of them."