Editor’s note: Family Voices pieces are first-person essays by HIE parents and caregivers. We never present them as clinical evidence or mix them with it, and we hold to that in every issue. The reflection below draws on the caregiving experience described in The Silence Between Two Heartbeats and is offered as one family’s account, not as data. It’s here as this issue’s example piece while we gather real submissions through our call for submissions.
Nobody tells you the hardest shift starts after the machines are unplugged. In the hospital, every beep came with a nurse, someone whose job it was to know what a change in your child’s breathing meant. At home the beeps are gone, and so is that someone. What’s left is you, a list of warning signs you looked up at 2 a.m., and a baby asleep in the dark.
In those months, I didn’t know that the list I’d memorized, the eye movements, the stiffening, the rhythmic jerking, was one that even trained neonatologists struggle to apply just by watching. All I knew was that watching was the one thing I could do. So I did it, for as long as I could stay awake.
What surprised me later wasn’t that the vigilance wore me out. I expected that. It was that it never actually settled anything. Every unclear movement turned into a question I couldn’t answer. Looking back, the watching didn’t control what happened. It just kept me awake.
If there’s one thing worth passing on to another parent in the same place, it isn’t that the fear is irrational. The risk behind it is real for some families, even if not for most. It’s that the exhaustion you feel from watching isn’t a failure on your part. It points to a gap in the tools you’ve been given, not a gap in you.
Family Voices note: this piece is an editorial reflection based on the caregiving experience described in The Silence Between Two Heartbeats. It will be supplemented or replaced by first-person essays from HIE parents and caregivers as they arrive through our call for submissions.