Raising a Child with Down Syndrome

By Amy Tracy
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While plenty of parents seem eager to avoid the prospect entirely, talking to those in the throes of raising a child with Down syndrome reveals a much different perspective.

Perhaps you’ve already heard: As prenatal tests have become nearly as routine as a simple blood test, the number of babies born with Down syndrome have significantly decreased. Parents who receive a positive test are choosing abortion. In Iceland, close to 100 percent of those women terminate the pregnancy. As a result, Iceland is on its way to eradicating Down syndrome. Other European countries like Demark have followed suit, and the U.S. is not far behind.

While plenty of parents seem eager to avoid the prospect entirely, talking to those in the throes of raising a child with Down syndrome reveals a much different perspective. Brian Kuiper and Janet Stafford, both parents of kids with Down syndrome, acknowledge the challenges, but nothing prepared them for how these little ones would actually change their lives for the better.

In their late teens, Janet Stafford and her husband Shawn welcomed a blond-haired, blue-eyed baby girl named Kaydence. At age 20, Janet became pregnant again and expected to add a similar baby to their family.

“We thought we’d have another Kaydence,” she says. “But when Kirsten was born, no one said a word to me. Then the doctor came into the room and gave me the Wikipedia version of everything that was going to be wrong with her, everything she wouldn’t be able to do and everything we as parents were going to have to face. He spoke of a plethora of health issues and a low quality of life.

“Those first 24 hours were hard. We even thought, ‘Should we give her the same name we picked out? She’s not who we though she’d be.’ There was tremendous grief.”

It took their daughter Kaydence, who is 19 months older, to turn things around the next day.

“She came in and looked at Kirsten and pointed out her eyes, and her nose and her fingers and her toes,” Janet recalls, “and Shawn and I just looked at each other. Through the eyes of a child we were able to see this person as simply a baby. We had a total turnaround.”

Brian and Treshia Kuiper knew from an ultrasound at 10 weeks that their baby boy would be born with Down syndrome. Treshia had an otherwise normal pregnancy until her blood pressure spiked at seven months. She was hospitalized and told she’d be on bedrest for two months, but days later another ultrasound revealed the umbilical cord had switched directions, and instead of bringing the baby (Timmy) nutrients and taking out waste, it did the opposite.

Timmy was delivered by emergency C-section, and would spend three months in the Neonatal Intensive Care Unit.

“For the first two-and-a-half years of his life we were in crisis mode,” Brian says. “There were so many surgeries. At some point we got to the place where we decided to start living again.”

A Different Way of Seeing the World

Stephanie Hubach, author of Same Lake, Different Boat: Coming Alongside People Touched by Disability, and mother of a Tim, a 25-year-old living with Down syndrome, knows why societies encourage women to eliminate babies with Down syndrome while still in the womb.

“We decide that people who don’t have certain a capacity don’t have lives worth living,” Stephanie says. “People who don’t make the cut are not worthy of society’s resources.”

Stephanie notes that Down syndrome is often presented to parents as too difficult to bear.

“People ask, ‘What kind of suffering is this going to create for me?’ ” she says. “It is difficult, but in some ways we need to look behind this statement. People feel utterly unsupported in their communities. This is where the church can be God’s agents.”

Christians, Stephanie says, can help demonstrate what it looks like to care for the vulnerable living among us, and in doing so reflect God’s character.

“We can also show people a different way of looking at the world. When we eliminate suffering at any cost, we end up losing access to blessings we don’t even know are attached.”

Rather than focus on Tim’s limitations, Stephanie points out her son’s gifts.

“He had this strong ability to communicate early on,” she says. “In school he was able to articulate his ideas, he was very social, very musically inclined, and very determined. Now he has two jobs, one of which is working five nights a week at a grocery store. Even in the middle of February, when it’s 10 degrees, he never complains.”

“I love how Tim sees his work as mission. He does it wholeheartedly for the glory of God. And he has this collection of elderly customers in particular and has an amazing rapport with them. Here’s one person with a diagnosable disability ministering to someone else who is dealing with their own degenerative disabilities happening later in life. God is using Tim to be a source of His love and encouragement.”

“Tim has been God’s most transforming influence in my life,” Stephanie continues. And Tim would tell you he has a great life. What would life be like without people with Down syndrome? Less love, less joy, less acceptance. And why is that a good thing? I don’t say, ‘Shame on you’ to the people of Iceland; it breaks my heart to know what they will miss.”

‘My Heart has Completely Changed’

No one ever said raising a child with Down syndrome was easy.

“There’s a grief that comes and goes,” says Janet Stafford. “I sometimes feel jealous that my friends are having ‘normal,’ easy babies who are perfectly healthy. However, the joy far outweighs those come and go moments.”

Her daughter Kirsten is 9 now, and Janet has learned to adjust her expectations when it comes to everyday childhood milestones.

“I feel like I’m able to appreciate milestones so much more with her, because it’s such a big deal and she worked 10 times harder than her older sister and younger brother,” Janet says. “That’s something huge to celebrate. Most of us don’t have the courage to keep at it when it’s so hard!”

Janet says Kirsten’s challenges tend to be more physical or mental as opposed to some of the emotional challenges the Staffords deal with their other two children. “But the positives far outweigh anything. I feel like she understands on far, far greater level what true joy is, and how to really slow down and enjoy life and the people around her.

“Kirsten is in tune with what people are feeling and thinking and needing. She can walk into a room and know who needs a hug, a smile or a high-five. Every moment is just an opportunity for Kirsten—that’s my biggest takeaway from her. She’s just a really, really beautiful soul.”

While Brian Kuiper’s son Timmy, now 3, still has a feeding tube, he recently learned to walk and use sign language to communicate.

“With kids with Down syndrome, you take the rule book and throw it out the door,” Brian says. “He’s going to walk and talk, but it’s going to take time. When he started walking it was enormous. We celebrated. We cried. We’re experiencing the joy of life and capturing those little moments. We’re choosing to live above survival.

“Timmy has changed my passion and what I care about and what I want to focus on my life on. I started a few different projects for our local Down syndrome organization. I started a dad’s group, too. My heart has completely changed; it’s now toward the underprivileged and the unspoken for, the people who have no voice, the people society overlooks or degrades, especially those in the disabled community. Before Timmy, I just focused on my own tribe. But God has used him to change me, to open my eyes to beauty in all of its forms.”

For all of these parents, raising a child with Down syndrome has altered their perspectives as they watch their kids love deeply, accept others unconditionally, express great joy, show genuine concern, and generally think the best of people and situations. What’s more, they’ve all discovered a group of like-minded parents who know just what they’re going through.

“What would I say to parents who just gave birth to a child with Down syndrome?” asks Janet. “Congratulations—and welcome to the most amazing community.”

© 2017 Amy Tracy.

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