Fly Away with Ann Schrooten
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What is the background of Ann Schrooten and the “Fly Away” story?
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You're listening to the Nocturnists, stories from the world of medicine. I'm Emily Silverman. Today we continue with another story from our live show in New York City in 2023. It's a show we co-produced with Danielle O'Free and Ashley McMullen of the literary magazine Bellevue Literary Review on the theme of taking care. This story came to us from Mother of Four, writer and attorney Ann Schroten. Anne's third child, Jack, was born with a rare congenital muscular dystrophy and lived a love-filled yet challenging life for 15 years. In Anne's story, she recounts a pivotal moment that occurred late one night while she was caring for Jack. Between eye contact, body language, and the power of music, Jack was able to convey to her a powerful message which helped her know what to do next to care for him best.
I'm so glad that Anne brought the story to us. The perspective of parent caregivers isn't one that we've heard much on this show, and I learned a lot from speaking with Anne about both the challenges and the rewards of that experience. After Anne's story, she and I speak about how she and her family managed to care for Jack at home all those years, despite him needing a ventilator and other complicated care. The multitude of emotions that could be conveyed between her and Jack without him uttering a single word, and her amazing work collecting stories from patients and clinicians, which she and one of Jack's doctors compiled in a book called Shared Struggles, Stories from Parents and Pediatricians Caring for Children with Serious Illnesses.
But first, take a listen to Anne's story, which she performed live in New York City in 2023. It's called Fly Away.
I'm jolted awake by the alarm, blaring through the baby monitor, but sitting across the room on my bedroom floor. I glance at the clock on my nightstand. The green neon numbers read two twenty six AM. I lay there for a second. But my mind is telling me you need to get up. I'm so tired. But he can't breathe. You need to get up. I drag myself out of bed, fumble in the dark, trying to find my cell phone. And I hurry down the dimly lit stairs. I'm wide awake now, my heart's racing, my body's tense as I make my way to Jack's room on the first floor of our home. The room is dark, Jack is lying on the far side of the queen size bed that dwarfs his small frame. And the glow from the bedside lamp reveals his jungle themed room.
With floor to ceiling trees and green leafy branches hanging from the ceiling. I turn on the bedroom light and hurry to Jack's side. I silence the alarm on the pulse oximeter. He looks at me, his eyes are open wide, looking panicked and scared. His cheeks are pale. The numbers on the pulse oximeter tell me his oxygen saturations are eighty and his heart rate's one seventy five. Both those numbers should be closer to a hundred. I wonder how long has this alarm been going off? How long has he been waiting for me? What these numbers tell me is Jack is struggling to breathe, and I need to quickly figure out why. Do the secretions need to be cleared from his airway or is this something more serious? Why can't he move air through his lungs?
Jack is fifteen years old. He's got sandy blonde hair. The sweetest smile. And when he's feeling well, his eyes sparkle and radiate joy. He spent the majority of the first year of his life in the hospital. He was the prince of the Piku. Doctors, nurses, even parents of other kids in the unit would stop by his bed when they needed a pick me up.
How does Ann describe the night‑time emergency when Jack stopped breathing?
He was about the only kid in the unit who wasn't sedated. And he greeted everyone who stopped by his bed with a smile. And that, despite the fact that he was intubated with the breathing tube down his throat. When he was seven months old, he was discharged from the pediatric intensive care unit with a trach, a G tube, and connected to a ventilator.
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Chapters
8 chapters
1
What is the background of Ann Schrooten and the “Fly Away” story?
0:00–4:59
2
How does Ann describe the night‑time emergency when Jack stopped breathing?
4:59–8:47
3
What were Jack’s early medical experiences and when was he finally diagnosed?
8:47–12:45
4
How did the family manage daily home‑care tasks and coordinate with nurses?
12:45–19:52
5
Why did the family turn to palliative care and what decisions did that trigger?
19:52–27:22
6
How has Ann’s identity and life changed after Jack’s death?
27:22–33:25
7
What is the “Shared Struggles” book project and how did it originate?
33:25–36:34
8
What are the next steps for Ann—documentary, speaking, and future advocacy?
36:34–38:09