Seven-and-a-half years ago, a spirit entered our world and forever changed those who love him, but especially his father and me. His name was Miles Julian, which happens to mean “beautiful soldier.”
My story of Miles begins with the bliss of first-time motherhood, but it quickly careens like a fatal car crash. The son we had lovingly brought to Earth was the opposite of healthy. In the unfolding nightmare, he had a chromosomal abnormality. He also had a rare and catastrophic seizure disorder that soon escalated to over 100 seizures a day, and completely stole him from us as we tore our eyes out trying to save him. Ultimately, he was profoundly disabled and medically fragile.
My marriage was ransacked fighting for Miles’ cognitive life. My will to live disappeared for a time. Hope left our family and despair and pain became our daily food. We wanted our mostly perfect life back, but most of all we wanted our healthy, smart little prince–the one we’d been promised in our hearts and our imaginations–to finally materialize. That Miles was a figment, it turned out. We wanted to wake up from the nightmare. With seven years of hard work, devotion, and healing love for and from this innocent cherub, it is now only some days that I still do.
This is Miles’ story.