“Don’t let her get too worked-up.”

By the time Sammi was 13 months old, we’d had five straight months without her getting terribly sick, enough time for me to catch glimpses of sweetness in her. I had started, haltingly, to fall in love with her, resentment cracking with every three hour stretch of sleep. Whenever I left the room and came back, she would hold her arms up to be held, and then pat my back and say “mama.” It was the stuff of syrupy mommyblogs and Hallmark cards; she was tiny but proportionate and round-cheeked, with a fluff of reddish blond hair, big brown eyes, and smooth fair skin. Life had become almost tolerable that summer before her first birthday — I’d begun working again, a few hours a week as a freelancer, and we spent time outdoors every day. The sun was coming out, metaphorically, and then she got a cold, and all the clouds rolled in fiercely from every corner of the sky.

“Don’t let her get too worked-up.”

These were the words we were given by the cardiothoracic surgeon in the one meeting we had with him before he operated on Sammi.

That fateful cold in August of 2006, the one that set off another hospital stay and a visit with the otolaryngologist, ended in a bronchoscopy under general anesthesia and the diagnosis of double aortic arch, confirmed with a CT scan, also delivered under general anesthesia a few days later. Surgery was scheduled for October 12. We had three and a half weeks in which the orders were to stop all solid food feedings — just nursing and milk — and not let her get “too worked up.” We asked the pediatrician what that meant, and she did not mince words. “You do what you have to just to keep her calm, mom. Bring her to bed with you if that helps. Just keep her calm.”

We didn’t learn until later that rises in blood pressure could strangle her from the inside.

“Don’t let her get too worked-up.”

Sammi didn’t like sleeping in our bed. The August respiratory infection never quite resolved, and her stomach was wrecked after the antibiotics. She woke often. David and I split the nights into five-hour shifts; one of us would be responsible for all things she needed between 10pm and 3am, and the other person would take her from 3am to 8am. Most nights, that meant that one of us would spend that second shift driving around the suburbs with her dozing in her car seat, her favorite music on repeat through the car speakers. It kept her from crying, allowed her to sleep, and required nothing more of us than maintaining the movement of the car.

We went through all-night drive-thru windows for Sprite and waited until she was deeply asleep to switch to talk radio for the company. Even now, nearly nine years later, when we drive certain stretches of road, one of us will remember the way it looks at 4am in the fall. Even now, we remember that time as the nightmare it was: keep driving or the baby will cry. Keep driving or the baby will strangle herself from the inside with her own aorta.

“Don’t let her get too worked-up.”

We held our breath and drove, and we kept her alive.

by

by