Seeing the light: One mother’s story of raising a child with Down syndrome

by Melinda Carstensen from Fox News:
As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.
When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.

But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.

“You just have this sinking feeling of dread,” LeVeque, now 43, told FoxNews.com. “I had this thing in my head— I don’t know where it comes from— maybe it’s pride: ‘I’m healthy. I went to an Ivy League school. I ran a marathon.’”
When LeVeque recounts receiving the prenatal diagnosis, and the days that followed, the word “fear” peppers her description.
She thought she knew about Down syndrome: The physical side effects— from poor muscle tone to upward slanting eyes— plus the learning disabilities and impulsive behavior.
One in every 691 babies in the United States is born with Down syndrome, making it the most common genetic condition in the country, according to the National Down Syndrome Society. The disorder varies in severity, causing lifelong disabilities and developmental delays— and in some— health problems.
About half of children born with Down syndrome have some sort of heart defect, which can be life-threatening, according to the Mayo Clinic. Abnormalities in their immune systems can also put them at greater risk for infectious diseases, like pneumonia. People with Down syndrome are also at an increased risk for conditions like leukemia, dementia, sleep apnea, obesity, gastrointestinal problems and skin conditions.
The hardest decision
Everyone took a side. While LeVeque’s mother and aunt wanted her to keep the baby, her father and boyfriend’s mother pressured her to terminate the pregnancy. LeVeque’s boyfriend also wanted her to have an abortion.
LeVeque recalled her doctor at the time telling her about one of her neighbors who had a daughter with Down syndrome and frequently ran away. Her family regularly had to call the cops in the middle of the night, the doctor said.
LeVeque made two separate appointments for an abortion, but she canceled both.
“It was a time of complete despair in my heart— and chaos around me,” she said.
LeVeque said she couldn’t turn to her family for support. Her mother, who had been married several times and was an alcoholic at the time, abandoned her and her younger half-brother when she was in the fourth grade.
“I think that for a lot of people, if they did come from any kind of brokenness, it’s not unusual as they get older that they develop unusually close friendships or that their friendships become more significant in their lives because they don’t have that closeness with their family,” LeVeque said. “Without question, I would say I fell into that category.”
LeVeque sought advice from friends who directed her to the Sisters of Life, a NYC-based Catholic community aimed at assisting pregnant women in crises. In December, she moved into their convent for six months, severed ties with her boyfriend and considered putting the child up for adoption— until she met with other parents who had once been in her position.
“I spoke to this woman who had put her child up for adoption, and I couldn’t relate to what she was saying,” LeVeque said. “I was still very fearful, but I do remember when I canceled the second appointment and having a phone conversation with [her boyfriend] and saying, ‘I am going to have this child. I remember feeling such lightness for the first time in so long— this freedom, really— just light. I didn’t know what the road was ahead, but difficult as it was, I was making the right choice.”
Seeing the light
Today, LeVeque and her son, Angelo, 6, live in Manhattan, where LeVeque said he continues to emanate that light.
“It sounds like a cliché that God can make good out of all things, but Angelo is a real testament to that,” LeVeque said. “He is this little pure soul. He’s happier and more popular in school than I ever was in my entire career. Children are innocent, but I have to say that a lot of people have approached me, and they do this almost on a weekly basis, in talking about his light.”
Angelo started attending school about a year ago, and LeVeque said he’s fallen into a routine of being greeted by his peers.
“He basically starts running— and he also has arthritis, [so he’s] basically doing his version of a run toward school— and the kids see him and they start going, ‘Oh, it’s Angelo!’ and they all come around. It’s almost like you hear the ‘Rocky’ theme song coming. People push each other out of the way to hug him.”
Christine Hammill-Cregan, a volunteer at Sisters of Life who saw LeVeque through the early days of her pregnancy, recounted the first time she saw her friend with Angelo.
“From the moment he was born, he did it for Gina,” Hammill-Cregan, 48, told FoxNews.com “Everything— all those fears that she had at the diagnosis— it all disappeared, and she was engulfed in the love of a mother.”
Raising a child with special needs often comes with its own set of unique challenges, but LeVeque is Angelo’s biggest advocate.
“She does all the research, does everything she needs to do to get him into the best school for him, and get him the best doctor, and the right diagnosis,” Hammill-Cregan said. “That’s a lot of work. She’s a mom, and that’s what she’s going to do. But that’s really time-consuming. It’s a lot of work.”
One step at a time
While most children start walking at age 2, Angelo did not walk until he was 3 and half years old, LeVeque said. But anytime she would take Angelo to the doctor, they would point to Down syndrome as the cause for his inability to walk.
It wasn’t until LeVeque visited Dr. Joseph Dutkowsky, associate clinical professor of orthopedic surgery at Columbia University College of Physicians and Surgeons in New York City, that Angelo was diagnosed with juvenile rheumatoid arthritis.
“When I first met Angelo, he came in with two or three pairs of braces and wouldn’t walk,” Dutkowsky, also the president of the American Academy for Cerebral Palsy and Developmental Medicine, told FoxNews.com in an email. “Children with Down syndrome do walk at his age, so I blanked his Down syndrome out of my mind and just looked at him as a child.”
Dutkowsky said making the arthritis diagnosis was easy: “He didn’t walk because he couldn’t, he didn’t walk because he was in pain. How normal is that? Once he was treated for [juvenile rheumatoid arthritis], he immediately started walking and running.”
Angelo’s misdiagnosis illustrates a problem that is becoming more common in the medical community, Dutkowsky said.
“Once a diagnosis of Down syndrome, cerebral palsy, etc., is made, doctors have a great tendency to focus on all symptoms relating to that diagnosis,” he said. “In fact, persons with disabilities can and do get the same things (common cold, appendicitis, ovarian cysts) as everyone else. The medical community and educators are simply behind in relating this fact to doctors at all levels of training.”
More challenging than raising a child with special needs, LeVeque said, is dealing with prejudice and remaining patient with people who aren’t educated about Down syndrome.
The biggest lesson LeVeque has learned from her son is to accept others for who they are— and to not try to change them, rework them, or fix them. Seeing the world through the innocent eyes of little Angelo has allowed her to view life from a new perspective.
“… It’s like the way that the world should be is the way that he lives it,” LeVeque said. “There’s not enough love in the world. People are so competitive and edgy and stressed out, but he just enjoys life.”