Down Syndrome diagnosis: ‘It’s hard to describe unless you’ve lived it’
By ABBY ECKEL, Herald Staff Writer | 10/28/2013
Hearing “I’m sorry” after telling someone you just had a baby wasn’t the response Tanya Lee expected, she said.
Lee, 34, Richmond, said that’s the response — along with what she called a pity stare — she often would get after telling people her baby, Connor, was born with Down Syndrome, a genetic disorder that causes developmental delays and health problems.
“To me, I don’t understand. Why would you tell me you’re sorry? Because he’s my child, and I love him,” Lee said. “‘I’m sorry’ is a strange thing for somebody to say to someone who has had a baby.”
Reactions vary, Lee said, but she tries not to get offended when people offer condolences or stare at now-4-year-old Connor.
“I don’t get judgy with people because I was once in their shoes,” she said. “You don’t have to be sorry — because my life is better with him in it than it would be without him.”
Having experienced some of the same reactions with her 14-month-old Eva, Tara Steward, Ottawa, said, being on the receiving end of those looks can be a hard pill to swallow.
“Most of the time I get ‘She is so beautiful and cute’ and they want to talk to her,” Steward said. “And I get some pity stares, and that’s been really hard for me.”
‘SHOCK AND DEVASTATION’
Screening for Down Syndrome during pregnancy is available, but Steward said she opted out.
“I didn’t want to have the test because I didn’t want to know,” Steward said. “I’m not going to say I didn’t cry, but in the beginning, it was like, ‘So what? We still love her and we’ll take care of her and we’ll learn along the way.’”
Steward and her husband, Nathan, both were at peace with Eva having Down Syndrome, she said, but some heartache remained.
“You still have those moments when you’re kind of grieving the child you expected to have,” Steward said. “It’s conflicting because you have this baby, but it’s not the baby you expected to have, but there’s a lot of positives that have come out of it too.”
Connor’s parents knew there was the potential for him to have Down Syndrome before he was born, Lee said, but later receiving the diagnosis still was surprising.
“We found out Connor had Down Syndrome about 48 hours after he was born,” Lee said. “We had a few sonograms where they thought there was potential, but ruled it out.”
Emotions ran high following the diagnosis, Lee said, simply because she and her husband didn’t know enough about Down Syndrome.
“For us, we had no experience with anybody in our life with any disabilities so it was shock and devastation because you have no experience with it, just preconceived notions,” Lee said. “There was a time when it was just quiet in the hospital room after we got that diagnosis where my husband and I were taking it all in and we looked at each other and said, ‘We’re going to take him home and treat him like any other child.’”
‘I GET IT’
Neither family had experience with Down Syndrome, they said, so educating themselves was the first step.
“We got information from the Down Syndrome Guild of Kansas City,” Lee said. “They are phenomenal. They gave us so much parent education. They’re really great resources to have. I feel lucky because with typical-developing children you don’t have a resource — no one is giving you anything — and with Connor we had that, and it’s really nice.”
Lee and husband Mark already had two children, Regan and Jayden, who were 6 and 8 at the time Connor was born, she said. She and her husband explained Down Syndrome to their kids in different ways.
“My oldest, Jayden, [now 12], really loves science, so we explained the science part and explained the extra chromosome and he was like ‘I get it,’” Lee said. “[Regan], 10, is much more emotional and creative. She couldn’t see any difference between her and Connor, and I appreciated how they reacted.”
For Steward, it was the staff at Children’s Mercy Hospital who helped her and her husband while they were there during Eva’s two-week stay for pulmonary hypertension.
“They were so good,” she said. “They scheduled all these different specialists to come in and we had a list of appointments to go in for through different preventative checks on her heart, her eyes and they set those up for me. I didn’t have to figure out on my own like ‘Where does she need to go to get checked out?’”
Steward’s son, Bryson, was too young when Eva was born to understand that Eva had Down Syndrome and what the diagnosis meant, she said, so she’s let him ask questions in his own time.
“I’ve decided to let him ask the questions when they come up because I don’t want him to see her as anything but his sister,” Steward said of her now 4-year-old son. “He knows she has to have people come in and help her at our house to do different things, but he doesn’t realize that that’s not normal.”
For many people, unless they’ve grown up with someone or know someone who has Down Syndrome, they have preconceived notions of what people with Down Syndrome are like, Lee said. But most of those stereotypes couldn’t be farther from the truth, she added.
“I try to put things into perspective because Connor was born healthy, and we haven’t had huge hardships,” she said. “Yes it is harder than somebody who has a typical developing child and yes things were harder for us, but they could be so much worse.”
Connor attends Swenson Preschool in Osawatomie, Lee said, where he plays, learns and makes friends, just like other kids.
“He has to work a lot harder at things,” Lee said. “He has low muscle tone, so he had friends that were born a year after him that were walking when he was still trying to crawl, and now you could never tell he went through that work.”
For some reason, Steward said, people think that babies and children with Down Syndrome are always happy — a misconception she said she’s heard since Eva was born.
“She is very happy — abnormally happy — but she has her moments,” Steward said. “She cries when Mommy leaves the room and she screams at me when she’s hungry. I’m sure there will be a time — because I’ve heard through other people who have teens with Down Syndrome — that they have those teenage moments where they’re sassy. They’re not always happy.”
Like the word “gay,” the word “retarded” has been taken out of context and used in derogatory ways, Steward said, and she has a problem with its misuse.
“The other day I was driving and I saw a bumper sticker on the back of this car that said ‘TARD’ and had a picture of a goofy looking cartoon with bucked teeth,” Steward said. “I found it extremely offensive. The woman driving the van actually pulled into the same store as me, so I asked what her bumper sticker meant and she said it stood for Travis Alexander Racing Development and it was her son’s racing team. I told her how offensive it was as a mother of a child with Down Syndrome and that she should consider changing it.”
Getting people to break the habit of using the word retarded is equally — if not more — challenging than getting people not to lump all kids with Down Syndrome into the same category, Lee said.
“It drives me crazy when you say ‘Downs kids’ because you’re putting them all in a box they don’t belong in,” Lee said. “They have their own personality. People with Down Syndrome are people first, just like you and I. They have their own personality and quirks and senses of humor, looks — everything.”
To help raise money for Down Syndrome and bring awareness, both Steward and Lee attended the Step Up for Down Syndrome event Saturday at Arrowhead Stadium in Kansas City, Mo., they said. Their hope, they added, is to help educate as many people as possible about Down Syndrome and to help people understand that Down Syndrome isn’t what they might think.
“If you don’t know how [kids with Down Syndrome] can impact your life and how special that is, it’s hard to describe unless you’ve lived it,” Lee said. “I would’ve had no idea that my life would be as rich now as I did the minute I got that diagnosis.”?
“I don’t see Down Syndrome in my life,” Steward said. “She’s Eva and she happens to have Down Syndrome.”