very rare genetic disorder. She was given a 5 percent chance of surviving the delivery, and even lower odds post-delivery. As a family, we have spent 18 months in the hospital, a year of which was spent in a different state. After multiple surgeries, code events, and a lot of time, our miracle is HOME! This book was written in hopes of bringing hope, healing, and some comfort to families that are up against tremendous odds, or experiencing extraordinary pain with the loss of a child. Our family has a great battle ahead of us, but as we continue to navigate all of this, we want to uplift as many other families as we can along the way.