When I got pregnant with Holden, I wasn’t super worried. Everyone around us was older and having healthy kids. Also, I had just given birth to my first son, Everett, so I knew what to expect. Sam and I did every prenatal test you can imagine to reassure ourselves that Holden would be a healthy baby - genetics, ultrasounds, blood tests. We felt pretty darn confident that our baby was going to be just fine.
On June 2, 2017, Sam and I got up before dawn and drove over to St. David’s hospital in South Austin for my scheduled c-section. Holden arrived on-time, kicking and screaming. Relieved to hear his cry and eager to see his little face I looked over at my child for the first time, and I remember thinking, “Wow! That kid has some big eyes!”
To be honest, I didn’t think anything was wrong.
An hour later in the recovery room, I started to feel dizzy and spaced out. My heart rate dropped and a bunch of commotion ensued. I had to be hooked up to an EKG and they called the anesthesiologist back in to see me. Meanwhile, the pediatrician came in to take Holden for his physical exam.
After spending about 30 minutes on the EKG, the doctors determined I had a typical, but irregular heartbeat that had been exacerbated by the anesthesia. I was still woozy, but I would be fine.
Then Sam walked back into the room without Holden.
I felt total panic. “What’s going on?”
“It’s nothing. I’ll tell you later. Don’t worry,” Sam said, not wanting stress me out in case something was wrong with my heart.
“Sam! You have to tell me what’s going on! F***king tell me RIGHT NOW!”
“The doctor’s think he may have a syndrome,” Sam exhaled and started crying.
“He can’t have a syndrome,” I said. “We did the tests.”
My memory of the rest of Holden’s birthday is a confused mess. Doctor after doctor came in to look at Holden. They described his anatomy and what indicators he had that led them to believe he had a syndrome. My postpartum hormones started kicking in and rushes of emotional pain seared through me. My mind was spiraling through this endless, twisting, boundless tunnel and my body felt like it was sinking. I couldn’t comprehend what everyone was saying. One of the happiest days of my life was also turning out to be THE scariest and most confusing.
“They’re telling me my baby has a syndrome,” I wailed to every single person who walked into the room. “Look at him? What do you think? Does he look like he has a syndrome to you?”
Later that afternoon, Everett came to meet his little brother and it was the first moment I realized the strength I was going to need to find for my both boys. I couldn’t let Everett see his mother in this messy state. When Everett came to see us, somehow I was able to put aside my fears and focus on happiness so that the first time these two brothers met was a beautiful moment.
A few days later we went home and started Holden’s medical journey that has led us to discover that he does have a syndrome - Pfeiffer syndrome. Everyday this amazing boy teaches me more about love and resilience than I learned in my previous 41 years of life. The path I had envisioned my family would take has altered, but as time goes on, I have had time to refocus my view of the future. And, you know what? The road ahead is looking more and more perfectly imperfect every day.