How completely ordinary the days can be. Today I got a haircut for the first time in nearly a year. I bought clothes. Tomorrow I’ll schedule a dentist appointment. I feel like a missionary that has returned from the most remote part of the world, suddenly in civilization again.
Last January at the 20 week ultrasound, Kit was diagnosed with her heart condition. We thought we were going on to find out boy or girl, but instead we found out life or death, likely death. It snowed that day, unexpectedly. People went home early. Days later, the genetic deletion diagnosis, that led to all of the high risk pregnancy appointments, her birth and NICU stay, the short difficult and beautiful stay at home, and the three month hospital stay before her death.
This year I’ve learned the language of doctors, immersed myself in medical journals, kept daily tabs on her vitals. Everything a nurse or therapist would take the time to teach me, I learned–changing NG tubes, hep-locking a PICC line, what every single monitor meant, and there were so many monitors; what every potential side effect of a drug was, and there were so many drugs.
I returned the medical equipment a few days after Kit died, along with a note of gratitude for her surgeon, nurses, doctors. Hand-written, thanking by name, on high-school notebook paper: my resignation letter. I felt like I had been part of their team in a high stakes game; I’d been all in, and we lost.
I’ve forgotten what it is like to live this life I gave up last January, on the ultrasound table, when I learned I was having a baby–my fifth daughter!–with a potentially fatal heart condition. I took each role as doctors handed them to me–mom to a heart baby, a special needs baby, a potentially blind baby. I acclimated to native culture.
I didn’t realize, when I brought my daughter in to the hospital for that last stay, that it was her last stay. That it was the last time I would have all my children together earthside, the last time I would cradle her in my arms cord-free before I cradled her lifeless body.
Maybe like every missionary, I am desperate to go back. If I could have another day–even in her most critical days, where I spent hours bent over her bed, rubbing her forehead on the only spot with no monitors and wires–I would take it. I would walk those hall again, sit through the scary talks with doctors again, even, yes, hold her as she died again. I want to go back to that Holy Land.
I’ll always be her mom; but my assignment of mothering her, of raising her, is over. So here I am learning a new language, this incomprehensible dialect of grief.