Typically, when you have a premature baby, one of the first things you will hear is how the next several weeks/months, while the baby is in the hospital, are going to be like a roller coaster ride.
While I get the idea, it’s an analogy that’s always gotten a little under my skin. Roller coaster rides are for amusement and entertainment. They are a sense of freedom as the wind blows through your hair and you let out thrilled screams of joy as you anticipate the next drop, turn or loop. Your adrenalin rush comes from a relatively safe, controlled and predictable ride. You choose to strap into the seat and it’s over in a just a few minutes. When you have a sick baby there is no sense of freedom, there is no predictability to the drops, turns and loops, there are no seat belts and it certainly is not a self-chosen or short journey.
This blog isn’t about the cliché of a neatly packaged roller coaster ride. It’s about the rest of the story – particularly the story beyond the first year. For his first year, I’ve kept a CaringBridge journal to share Owen’s story with his followers. Like in CaringBridge, this blog is to keep Owen’s followers apprised of his health and development. But here, I will also go further. A preemie story isn’t just about the preemie and the story doesn’t end at the NICU door or one-year-old or any other magic age. This blog is about learning to be a Stay at Home Mom to a special needs baby and typical needs boy. It’s about healing from the hell of watching our baby, and the babies around him, fight to live. It’s about the amazing doctors and nurses and therapists and teachers and family and friends that have helped, and are still helping, Owen reach his maximum potential. It’s about miracles and superpower human spirit. It’s about bringing awareness to the issues that we, and so many micro preemie families, experience. And finally, it’s about connecting with other moms and dads who are going through their own journey with a preemie or a special needs child.
Thank you for reading. Please feel free to leave comments and questions and share with anyone you feel might be interested in our story.