A Family’s 5-Fold Blessing of Down Syndrome

Commentary

Although it’s not quite as rare as a lightning bolt, to parents receiving the news that their child has Down syndrome, it can feel like one, searing through expectations and dreams.

About 6,000 of the 3.6 million babies born in the United States each year are diagnosed with the genetic disorder.

Down syndrome comes with a lifetime of challenges and a host of cognitive and health issues such as heart defects and respiratory and hearing problems. Most people with Down syndrome have Trisomy 21, an extra copy of chromosome 21 that affects every cell of their bodies and every aspect of their development.

What happens when lightning strikes not once, not twice, but over and over? That’s what happened to one family that sees Down syndrome not as a curse but as a gift to be celebrated.

In a world where an estimated 60 percent to 90 percent of babies with the diagnosis are aborted, they said yes to Down syndrome five times over two generations. And the blessings, they say, are compounded.

‘I Knew the Secret’

Peter and Andrew Daub still tear up when they think of their younger brother Paul—the first lightning strike in their big Catholic family.

Paul, Mary Ann and Frank Daub’s eighth child, lived just six months before a heart defect took his life, but that was long enough for him to capture hearts. Paul’s siblings remember the beauty of their short time with him: holding him, helping feed him, applauding his tentative smiles.

So when Peter and his wife, Erin, found out that Rose, their third child, had Down syndrome, the memory of Paul was sobering.

“I knew the issues that Paul had, and that scared me a little,” Peter said.

“On the other hand, I saw throughout my childhood how special people with Down syndrome were. They were always happy, and I saw how much they loved and were loved. I didn’t fear raising a child with [Down syndrome].”

His mom was supportive. There would be hard things, she told Peter and Erin, but the good would definitely outweigh the bad.

Rose was 6 years old when Andrew and Cathy Daub got the news that their eighth child had Down syndrome.

Cathy cried at first, but she told The Epoch Times in 2022: “I was OK with this news. I really was.”

“I knew the secret,” she said, because of Rose and Paul.

Will—affectionately known as “Iron Will”—and his cousin soon became stars among the Daub grandkids.

‘What a Gift’

One might think that this story ends there, but it doesn’t.

Just four days before Will’s birth, Meg Giovannini, Andrew and Peter’s first cousin, got the news during a busy morning at work: “Your baby has an 84 percent chance of having Trisomy 21.”

“There was never a doubt I wanted this baby,” Meg said, but she said she grieved.

“I had plans for him or her,” she said. “And suddenly those plans and that life no longer felt possible.”

The tears fell, until she told a friend about the diagnosis.

“His face lit up and he said, ‘What a gift,’” she recalled.

“That was it for me. So many more tears, but looking back, I think that was the first time they were tears of joy. And I think that was really when I stopped grieving and started planning again for the gift we were being given.”

At the time, two states away from her cousins in Missouri, Meg didn’t really think about the fact that “others in the family … were also on this journey.” Today, Eden is a bouncy, dark-haired 5-year-old who loves ballet. And her mom said she’s grateful for their unique family because “hopefully she won’t ever have to feel alone.”

Two years after Meg and her husband Michael welcomed Eden, lightning struck again, as yet another cousin embraced a diagnosis of Down syndrome. This time, the story, like Paul’s, ended in heartache. That’s enough said; it’s still too raw.

An uncle and four cousins with Down syndrome—what are the chances? They’re very small indeed—a tiny fraction of 1 percent. Down syndrome doesn’t generally run in families. There is a variant of Trisomy 21, known as translocation Down syndrome, that can be inherited, but genetic testing has ruled that out for Rose, Will, and Eden.

The rare circumstance makes this family uniquely qualified to talk about Down syndrome.

The Daubs and their cousins have become experts and advocates as they deal with the health and learning challenges that come with the condition. They have a priceless advantage: the support of close family members who know Down syndrome firsthand.

Unconditional Love

And the gift far outweighs the challenges, they say.

The biggest blessing of raising a child with Down syndrome, Peter says without hesitation, is unconditional love.

The list grows as the parents enumerate how their children enrich the lives around them: authenticity, compassion, contagious joy, a huge capacity to love and be loved.

“I would also say the effect our kids have on others,” Erin said.

At a recent mother-daughter dance, she said, Rose “danced with every mom and kid there.”

“And every single one of them took her outstretched hand without a thought and danced their hearts out right along with her,” Erin said.

For Frank Daub, the gift goes back to that first yes. In Paul’s short life, Frank said, he taught his other children compassion “without ever having the opportunity to communicate with them.”

“I am incredibly certain of this: Their ability to love and treasure a person with serious disabilities grew with them as they became adults,” he said.

“Most people have no idea,” Cathy said. “When they have a child with Down syndrome, they are totally surprised by the joy and unconditional love.”

Today, Rose is thriving as a fifth grader in the Catholic grade school where she’s the only child with Down syndrome, and she is fully mainstreamed—thanks to her parents’ advocacy. She’s “really into changing into cute outfits and making sure her hair looks good,” her dad said.

Will, 5, is the face of Team Iron Will, a nonprofit that provides resources, education, and support for Down syndrome families.

“We immediately understood—at a personal level—how much work remains in helping the rest of the world understand the blessing,” Andrew said.

“We realized we had to advocate relentlessly and share a message of hope to give people with [Down syndrome] a chance to be fully seen and heard.”

Experiencing Down syndrome through two generations is less like lightning and more like “having the rarest flowers bloom unexpectedly and repeatedly” in rich soil.

The next generation knows they, too, may hear the words “Your child has Down syndrome.” If that happens, they’ll be ready. They’ll know the secret, just as Andrew and Cathy did when they got Will’s diagnosis.

“I knew the magic that was about to enter our lives,” Cathy said.

March 21 is World Down Syndrome Day.

Views expressed in this article are the opinions of the author and do not necessarily reflect the views of The Epoch Times.