- Rebekah Lyons has two children with Down syndrome, one of whom she adopted.
- She's also struggled with anxiety and panic attacks.
This as-told-to essay is based on a conversation with Rebekah Lyons. It has been edited for length and clarity.
When I was 39 weeks pregnant with my oldest child, I felt something might be wrong. I requested a routine ultrasound, after which doctors immediately sent me to deliver by emergency C-section. Nearly all my amniotic fluid had drained. My son wasn't growing and hadn't been for about 12 weeks, doctors said.
During the Cesarian, I felt like I couldn't breathe. I thought I was dying, but I didn't want to distract the medical team from taking care of Cade. Finally, I croaked a plea for help as they delivered Cade and whisked him off to the neonatal intensive care unit.
At that moment, we were just worried about keeping Cade alive. But that night — at about 1 a.m. — we would get earth-shattering news: Cade had Down syndrome.
When the nurse first told us, I was too exhausted and numb to process what she was saying. But the next day, when I held my baby for the first time, a tsunami of grief and fear washed over me. I was only 26 and had never imagined this would be my introduction to motherhood.
Cade was a runner, which contributed to my developing panic disorder
As I learned to parent a child with Down syndrome and birth trauma, I became the resource I wished I had. I was the point person for any parents in my community who had a new Down syndrome diagnosis.
Doctors told us that the chance of having another child with Down syndrome was about 1%. That felt safe enough for us to grow our family. We welcomed another son and then a daughter.
When Cade was 9, and our others were 7 and 5, we moved to New York for work. It was incredibly difficult because Cade loved to run away. He thought he was just exploring, but from the first time I lost him at a playground in Central Park, I was on edge. Eventually, I developed panic disorder and anxiety that would stay with me for years.
We adopted our daughter when Cade was 17
Despite those challenges, I felt like I was finding my stride as the parent of a person with Down syndrome. My husband, Gabe, and I wanted the chance to choose Down syndrome. We knew we would never be empty nesters, so we figured the more, the merrier. We adopted our daughter Joy from China when she was 5 years old.
Then, the pandemic upended our lives. We thought we would be focused on helping Joy adjust to life in America, learning English, and living with a family rather than in an orphanage. But COVID had other plans. My work as a public speaker came to a halt and my oldest began having lots of behavioral challenges.
Cade — who is mostly nonverbal — struggled greatly with isolation and remote learning. He would hit his head in frustration or hide beneath a dinner table. It was heartbreaking to see him carrying so much inside.
I focused on resiliency to endure the challenges
That time was difficult. I finally felt like I knew how to manage the chronic health conditions that impact our family, including Down syndrome and anxiety. Suddenly, we were in a whole new world.
That's when I really started thinking about how we cope with and recover from adversity. It's the topic of my new book, "Building a Resilient Life: How Adversity Awakens Strength, Hope and Meaning."
Some people think resiliency means bouncing back. But when you're living with chronic health conditions and constant challenges, bouncing back is impossible. I like a more nuanced definition of resiliency: to regain your original shape after being compressed.
We've all felt the squeeze of the past few years. And that's OK — resilient people feel pain. But they're able to put their pain in perspective in order to endure and emerge.
It's impossible to avoid challenges in life. Instead, we need to teach our kids and ourselves to cope with them. That's how we build resiliency.
The recipe for resiliency is having new or novel experiences, acknowledging and experiencing our stress response, and having supportive people to cheer us on. It's similar to working out in the gym: You ask your body to do something new, and you feel the burn. And over time, you increase your capacity. You can build resiliency, just like you can build muscles.
Recently my daughter Joy, who is now in third grade, was in a play. She just blossomed in the theater community, but on the first night, as the auditorium filled, she was very nervous. Yet by the fifth performance, she was ready to run out onstage.
It was a perfect example of how everyone has the potential to demonstrate resilience. It's not a static quality that you're born with or not. It's something that we can learn, so when we or our children are knocked down by adversity, we're able to stand back up.