I have an amazing hubby. Here are his memories and thoughts on our sweet boy’s first birthday.
One year ago today, Mary and I were in a very dark place; the darkest of our lives. We sat nervously in an OR prep room awaiting our date with destiny. We waited for the doctors to take Mary back and deliver a baby boy who most likely would not live, or best case scenario, would live but with a grim outlook of a short life with a very challenging disease (Osteogenesis Imperfecta, “OI”).
We had a waiting room of family, friends, a photographer, and even priests on standby for a very quick visit, then goodbye, to our beloved boy.
It was a very intense and long waiting period but finally it was our turn and Mary was taken back. 30 minutes later, with the best numbness I could muster, I made my way back to the OR with cameras in hand to document our brief meeting. As I sat with my my crying wife, camera in one hand and hers in the other, I tried my absolute best to be strong for her but I was an absolute wreck, constantly fighting back the urge to simultaneously puke and have a heart attack.
Finally came the big moment, and the sweetest, most amazing sound I had ever heard: my baby screamed, and screamed his fool head off.
See, the doctors told us that Will most likely would have a chest too small to be “compatible with life”. Mostly likely he would come out and not have the lung capacity/strength to take a breath, much less cry. He would probably come out purple and motionless and we would have to watch the doctors perform emergency resuscitation procedures, and if we were lucky have to make the gut wrenching decision of whether or not to put him on a breathing tube/machine. That’s where we were 1 year ago today.
But, with powerful lungs, he screamed like a tired, hungry 3 month old. What followed was an equally intense 5 day stay in the NICU. We had a brief moment of joy when the doctors told us that they were backing off the OI diagnosis, but then were devastated hours later when the new diagnosis of an equally potentially fatal disease, Asphyxiating Thoracic Dystropy (Jeune’s Syndrome), was suggested (later confirmed) as the culprit to Will’s chest size.
His stay in the NICU was mostly encouraging. His o2 saturations remained at around 100%, which is perfect, and all other vitals were normal. At this point his stay in the NICU became mostly for monitoring instead of treatment, but it was a gift from God as we learned from Will’s NICU roommates of a very real world where not all baby deliveries are perfect pink and blue moments, but the colorless realities of life with challenges and no guarantees, but also of the beautiful people that care for those babies like they were their own children. Our lives will never be the same.
Today, one year later, Mary and Emme and I are in the brightest place of our lives. Our baby boy is healthy, happy, smiling, walking, talking, destroying and still, of course, screaming. He has never been hospitalized for anything that was not a direct result of Mommy and Daddy’s over cautiousness. We remain vigilant, however, because while his condition is mild, it is still very real. But we remain committed to enjoying every possible second with our “miracle boy”.
Happy birthday, Will, my son. You rock my world in so many ways. You are so befitting of the name we gave you; “Will”. The will to live, persevere, endure and defy the odds over and over again.
I love you and look forward to many more amazing years.