In the Moment
Jorden Herberlain’s Journey of Fatherhood, Advocacy and the Lessons of Down Syndrome…
Life with Down syndrome wasn’t the future that Jordan and Caitlin Heberlein envisioned when they learned they were expecting their first child, but the arrival of their daughter, Brooklynn, has become a profound teacher. Heberlein’s fatherhood journey has not just pulled him deeply into their own three children’s lives, but it’s led him to help lead a community for other dads as they embrace the extraordinary lessons that children with Down syndrome bring.
Heberlein was 25 years old when he and his wife discovered she was pregnant. “It’s our first kid. We’re all excited,” he says. “We went and got the sonogram done, and our doctor called.” The nuchal fold on the back of the baby’s neck was measuring a little thick, so they went for an amniocentesis at UC Davis.
“I’ll never forget the look of fear in my wife’s eyes,” he says. “I just had to sit there and hold her hand and tell her it was going to be OK, but I didn’t know.” The test confirmed that their baby girl had Down syndrome. Soon thereafter, a cardiologist discovered she had a heart defect that would require surgical repair.
Brooklynn Renee Heberlein was born Feb. 16, 2016, at UC Davis Medical Center, with an army of supportive family at the Heberleins’ side. Brooklynn spent six weeks in the pediatric intensive care unit, and after she was released, she endured seemingly endless out-of-town medical appointments. “My wife is a saint,” Heberlein says. While he had to return to work to ensure the bills were paid, “she had to go three or four times a week to Sacramento with a screaming baby who hates car seats.”
In July 2016, Brooklynn had open-heart surgery, and she started getting better.
Until she wasn’t.
“They started preparing us for her not making it,” says Heberlein, a Shasta County native. “As a dad, you want to fix it, but you can’t. I’ve been through a lot in my life, but those moments are the hardest because that’s my baby that’s in there.”
One of the adjectives that Heberlein uses with great affection to describe his daughter is “stubborn,” and true to form, she was finally able to go home, with an oxygen tank and a G-tube for continuous feedings. Nine years later, Brooklynn is a smart, social, funny and empathetic girl. “She’s excelling. She’s succeeding. She has genuine friendships. She plays baseball. She dances. She’s a cheerleader,” he says. She’s still a “metalhead” who loves the band Atreyu, which was often the only music that would soothe her when she was a baby. She’s a big sister to Brylee, 7, and Isaac, 5.
But life with Down syndrome is a rollercoaster. In 1980, the life expectancy for a person with Down syndrome was 20. Today, it’s over 65. “I may outlive her. On the flip side, she may outlive me,” Heberlein says. “And I don’t know what’s better.”
And Heberlein wants to ensure that no parent has to go through it alone. Shortly after Brooklynn’s birth, the Heberleins connected with the national Down Syndrome Diagnosis Network, and after a few years, Heberlein attended the organization’s Rockin’ Dad Retreat for the first time. “My first time there, I shared within the first two hours of my plane landing more than I shared with anybody,” he says. “In the middle of it, it’s heavy, and you never feel like you’re going to get out of it.”
In 2021, he became a co-organizer of the retreat, which brought 66 men together last year from all over the country. There’s still room for growth, as the mom’s retreat draws more than 400 attendees, but Heberlein is proud that more dads are realizing its value.
“We’re dads who are active in their kids’ lives and get it. We get that struggle and that fear,” he says. “We’ve shared the tears and the memories and the celebrations and the struggles. We all advocate for acceptance of our kids.”
Joe Scott met Heberlein in 2018 through the Down Syndrome Diagnosis Network. “Not only is he an amazing family man and friend, he is a strong advocate for those who need a voice or support,” Scott says. “He is a voice of reason and compassion. You can see it in how he plans the Rockin’ Dads Retreat, where he makes meaningful connections with every guy there. He is an inspiring and truly valued presence in my life, despite being over 2,000 miles away.”
Ben Hughes, who plans the annual retreat with Heberlein, says, “Jordan is the kind of person who makes anyone and everyone feel welcome instantly. He always knows the right thing to say to help encourage and motivate not only myself, but our entire group of dads. He puts his heart and soul into every retreat. Even though I only get to see Jordan once a year, we’re able to pick up like we’ve seen each other every day – I couldn’t ask for a better friend.”
Getting connected with people who have been down the same road has been a blessing for Heberlein, as they navigate feelings that many families don’t have to face. “It’s easier to be vulnerable with people who have a child with a disability,” Heberlein says. “There’s an unspoken understanding of what you’re going through. It helped shape my understanding that it’s OK to be scared and to grieve. There are so many different types of individuals from all walks of life, yet we all share one common thing that brings us together. We get it.”
Working through big emotions is part of that process. “There’s times I hate my daughter’s diagnosis, and that’s OK,” he says. “I love my daughter. I don’t love the fact that she has a lower life expectancy. I don’t love the fact that she has to try harder than her typical peers. I don’t love the fact that things don’t come naturally for her. She’s well loved at her school, but her peers can climb on the bars and she can’t. They take off running and she’s not as fast. I see the defeat when she tries something and she’s not succeeding yet, simple tasks that my younger kids are doing.”
While life is incredibly busy for this family of five, they’re grateful for the opportunity to be fully immersed in their kids’ lives. Jordan and Caitlin have run the Challengers Little League program for children with disabilities for three years. Heberlein serves on the Shasta Dam Little League Board of Directors, and he coaches both of his younger children’s baseball teams. That’s all on top of working full time as a family and community engagement supervisor at the Shasta County Office of Education.
And sometimes, he wonders who’s teaching whom. “That little girl has taught me more than I could ever explain,” he says about Brooklynn. “The advocating so hard for people. The loving each and every moment. Tomorrow is not promised. She’s really taught me to be in the moment, and to love people for who they are. I’ve gained so much more empathy and understanding for everybody.”•
