Not all hearts are this expensive, but my son, Ethan, was born with heterotaxy syndrome, a rare condition that can cause any of the internal organs to be malformed, misplaced, multiplied, or missing altogether. Ethan’s insides are a math all their own: two left lungs, five spleens, and nine congenital heart defects. It was his heart that had brought him to the operating room to have his chest opened four times in his short life, and the bill I was holding was for the latest of these surgeries.
I snapped a picture of the bill and opened Twitter on my phone, absentmindedly imagining that someone might be interested in knowing why we medical mamas care so much about laws that ensure our access to affordable health care, why Obamacare has been a lifeline to our children, banning lifetime limits and ensuring that no one would deny them coverage simply because they’d been born with preexisting conditions like heterotaxy. Maybe someone would listen when I explained how terrified I was now that these protections were under siege due to the Trumpcare bill that stood before the Senate.
The tweets came easily; I’ve always been an external processor. I told our story the same way I always do, softening the hard edges of Ethan’s struggle with photos of the tender-hearted little boy who’s fought so hard to make it this far. I wrote about his medical team, about the surgeries and procedures and medications that he will rely on for the rest of his life, and also I wrote about his love for sticks and fireflies and his mama. I begged the people in power to look him in his big brown eyes and tell him to his face that his life was too expensive to be worth saving.