I wrote something
Hey folks. Sorry to see so many of you here. My wife and I TFMR'd about 6 weeks ago and it's been difficult. I wrote something where I tried to capture the agony of uncertainty and the difficulty of the road we didn't take. I figured I'd share it here. I hope it helps, or is illustrative, or that it makes you feel less alone.
Here it is:
The sun is bright and I blink reflexively when I step into it. Panic. Constant, unceasing panic. I’ve slept for 3 hours since the delivery. She’s swarmed by clinicians. Prostaglandin infusions start immediately. Ductus open, she’s caught between the womb and the world. Echocardiograms every 24 hours. It’s been 9 days and we haven’t held her. She hasn’t moved from the incubator. Another 5 days before surgery, then another 11 back in the incubator recovering from bypass. Ventilator. Lines everywhere.
I sit and wait. My wife sits and waits. We’re together. “Together.” Waiting for a surgeon who doesn’t exist to fix a heart that never had the chance to break. I stare at the floor. Out the window. At the floor. The nurse calls. I pick up after a sixteenth of a ring. “Median sternotomy is complete. Starting on arch repair.” A two-week old has 250mL of blood. Hours pass, or would have. The left subclavian artery complicated the approach. “OK, we’ll fix it and it will be fine” from the surgeon. I can’t picture his face.
A car horn blares, snapping me back. 3:30pm. Dappled sunlight peeks through a canopy of verdant trees lining a city block of Gilded Age townhouses. I carry a run of groceries, a bouquet of white roses, my son in a stroller. The sun catches the bodega awning just so and the flowers transpose into a white surgical mask.
A breeze rushes through the treetops the moment I step through the doorway, caught between the city and home. I pause for a moment. My heart keeps the same rhythm. No one calls.