We faced our biggest fear. Here’s what we learned about grief and suffering: our 5-step pathway through the darkness.
For those of you who don’t know us, 2019 was the worst year of our lives. On May 4, a series of severe, uncontrollable seizures forced us to induce our son, Isaiah, into a coma. For two months, every attempt to bring him back was met with a return of persistent, relentless seizure activity. We spent every second on edge as we watched our son fight for his life. In the search for answers, we worked with doctors from Pediatric ICU, Neurology, Rheumatology, Nephrology, Infectious Disease, Immunology, Endocrinology, Pulmonology, Palliative Care, and Hematology. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, Isaiah endured three spinal taps, two CT scans, four brain MRIs, two full-body MRIs, three days of hypothermia, two high-dose steroid treatments, three feeding tubes, a blood transfusion, four failed attempts at burst suppression, five rounds of plasmapheresis, 37 days on a ventilator, 41 days in ICU, and 89 days total in the hospital. We watched his vitals crash time and time again and came very, very close to losing him more times that I can count. It was by far the deepest, most prolonged, and most consuming suffering we’ve ever experienced.