On September 12, 2018, everything changed. In the middle of the day, our world stopped. We got news that crushed us. Something was wrong with our sweet baby boy, Leo. A baby already so loved and wanted. What happened shook our family to the core, and life has never been the same since.
Courtesy of Cheyenne Potts
The doctors explained that Leo had something called Osteogenesis Imperfecta, a rare condition that makes the bones extremely fragile. It was type 2, the most severe kind. Doctors told us his bones were so fragile they were breaking even before birth, and there was a real chance he wouldn’t make it through the pregnancy.
Courtesy of Cheyenne Potts
If he did, he wouldn’t live long after birth. The doctors told his mom and dad it would be more merciful to end the pregnancy. I was in the middle of my shift when the phone rang. It happened to be my daughter’s birthday.
She tried to tell me but couldn’t speak. Her husband took the phone and told me the diagnosis. Then he hung up to comfort her. I was heartbroken and in shock. I walked back to my desk, trying not to fall apart. A coworker asked what was wrong. I barely understood the words as I said them: “Osteogenesis Imperfecta.”
She said it sounded like something from a TV show. Sadly, she was right. I called Leo’s grandfather from the car. I couldn’t stop crying. None of us knew what to say. The pain in Leo’s parents’ voices was unbearable. That day marked the start of the most difficult chapter we’d ever faced. As a family, we talked about every option.
Courtesy of Cheyenne Potts
The doctors told us there was no hope, but we had to make a choice. For us, there was no doubt, we were going to love Leo for as long as we had the chance.
We also prepared for the worst. We planned a funeral. But we also dared to hope. We imagined what life with Leo might be like. The next four months were filled with waiting, pain, and love.
Courtesy of Cheyenne Potts
At Christmas, Leo’s mom made sure to take photos with everyone, just in case it was the only holiday with him. Then, on January 11, 2019, Leo was born. He came into the world crying, breathing on his own. He was alive! Not perfect, but perfectly ours. He proved the doctors wrong that day.
Courtesy of Cheyenne Potts
Montana Flinn/Rays Of Joy Photography
Now, six months later, Leo is still writing his own story. He only spent 19 days in the NICU, not six months like they predicted. There have been highs and lows, but Leo’s strength never stops amazing us. Every second we get with him feels like a blessing. He brings light, love, and joy to everyone, especially his family.
