Shelley Moore’s day is filled with the duties of a caring mother.
A single mom, she changes her son’s diaper, feeds him and talks to him in a loving language that only the two of them fully understand.
Her story is much like that of many other moms, except that she is 53, her son is 20 and her daily care includes feeding and hydrating her son and shaving his beard.
Conner David Moore has Down syndrome, a chromosomal anomaly. Many people born with Down syndrome have medical problems all their lives, including a much higher risk of hypothyroidism and Alzheimer’s disease.
Conner’s challenges include heart issues and autism.
“By the grace of God, we will celebrate his 21st birthday next May,” Moore said, adding that through the years she has seen “the medical miracles” in her son, whom she calls “differently abled.”
Moore, who was interviewed by the Star-Telegram when Conner was 3, wanted to share her family’s experiences again, knowing that other families are discovering challenges associated with the condition every day.
“The reason I wanted to do the story on Conner 17 years later is to help other parents, single or not, to be encouraged about the job you have been given and the reward that comes with that job,” Moore said from their north Fort Worth home. “Parenting a special-needs child is not an easy task. It takes every ounce of your being.
“… What this precious boy gives to me is far beyond anything I could have dreamed of. For the most part, I have forfeited my social life to be Conner’s everything — simply because he is my everything. My only child, the circle of life ends here for us.”
Moore, an American Airlines flight attendant for nearly three decades, said she is thankful that her job — which may have her flying to Frankfurt, London, Madrid or Paris three weekends every month — allows her to be with her son more than most jobs might.
“I am blessed to have a job with such flexibility,” she said.
Moore was 33 when Conner was born in 1995 and hadn’t considered the possibility that her baby might have Down syndrome. He was 6 weeks old when his pediatrician heard a heart murmur and referred him to the heart specialists at Cook Children’s Medical Center in Fort Worth.
There, tests showed that he not only had multiple heart defects, which required immediate and extensive surgery, but also had Down syndrome.
“I have never, ever regretted that he was born with an extra chromosome. He’s exactly the way he is,” Moore said. “If I could wave a wand and make Conner different, I would not even consider it.”
Conner is nonverbal but makes his needs known, Moore said. He loves music of all kinds, especially Springsteen and the Stones. He enjoys watching Barney the purple dinosaur — a lifelong passion — and shopping. He uses a wheelchair but won’t let it slow him down.
“We are unbelievably connected by our thoughts,” Moore said. “He says nothing, yet in his eyes I can see everything he is thinking. He is the sweetest soul anyone would have ever imagined.”
Before her mother died of cancer in 2006, they were a team that provided for “this special boy,” Moore said. Moore and her husband divorced in 2012, and Conner often stays with him while she travels for work.
Juggling a job and the duties of a full-time mom is hard, but Moore considers it a blessing, not a hardship.
But their world is far from rosy.
‘Joy is easy!’
Challenges as a single parent to a son who needs constant supervision include earning a living, running her home and paying bills.
Drawing from her two decades of experience, she said she hoped others would find inspiration in her story.
“For the many families who struggle just as we do here in our home, stay upbeat,” Moore said. “Make friends with others walking the same road. Find your faith, stay in your faith. Make your own happiness. It won’t look any different from those around you. Just make your happiness in the small things. Joy is easy!”
As she sees other parents who take for granted that their children are healthy and may not devote as much attention to them as she would, Moore said, they might learn from a family where “our best day ever is one when we are not admitted to a hospital room.”
Conner suffers from Shone’s complex, a rare congenital heart condition that involves multiple valve problems.
Conner’s last open-heart surgery was in 2004. It left him with third-degree heart blockage, requiring constant pacing from a pacemaker planted deep in his chest. His last pacemaker “change-out,” his mother said, was in 2013.
“His life is sustained by a lead wire providing electrical shock to his lower chamber, the right ventricle,” Conner’s mother said. “No underlying heart rhythm is present and should the lead fracture or dislodge, Conner would no longer be with us.”
‘Like normal children’
Dr. Frank McGehee, a pediatrician at Cook Children’s, shares her enthusiasm.
For him, treating more than 200 families that have at least one child with Down syndrome, his practice hits close to home — literally.
The second of his six children, Brigid, 19, has Down syndrome. She also suffers from seizures, low thyroid and celiac disease — she cannot eat gluten.
Joking that his and wife Pam’s other five children might be offended, he said Brigid is his favorite child.
“People with Down syndrome are like normal children — even more so,” said McGehee, 63. “They grow up slower, but keep their imagination longer.”
Since reliable tests were developed, the cultural norm is to terminate the pregnancy if the fetus is determined to have Down syndrome. He said that nationally about 90 percent of fetuses are aborted when prenatal testing detects Down early enough.
With Brigid, as well as their other children, the McGehees decided to forgo prenatal testing, or amniocentesis, which helps determine the presence of chromosomal defects including Down.
McGehee said his wife told him, “I’ll take what I get.”
But he said that if they had done so and seen the challenges ahead, they would have been no less thrilled to welcome their daughter into the world.
“Brigid is a blessing,” he said proudly.
‘This boy is beautiful’
Most people with Down syndrome score in the mild to moderate range of mental retardation on standard IQ tests. Many have low muscle tone, which can delay walking and other physical activities such as holding a pencil.
“The severely afflicted have low IQs in the 30s and 40s,” McGehee said. “On the other end of the spectrum, one of my patients is taking 10th-grade biology.”
Moore said that although her son has a high intellectual disability, “Conner never ceases to amaze me. Every day, I am honored to be his mommy.
“This boy is beautiful,” Moore said. “I see God in him every single day. How many parents have been this lucky?”
Moore won’t be with Conner on Christmas because her job has her traveling to Hawaii and not returning until Sunday.
Then Conner, who loves Santa Claus, will get to play with the toys — many of which make fun sounds — placed in a circle beneath the Christmas tree in their living room.
Delaying their Christmas for two days will be fine, she said, because “Every day is Christmas with Conner.”
Marty Sabota, 817-390-7367